So I had my endo appt last week. Pretty darn BLAH! I guess I was hoping for something big to happen and nothing really did. I had to have a form filled out for my mom's insurance company (who threw me off the plan AGAIN!) so I got that done. I also spoke with her about all that I'd discovered throughout my package sending mission. I had talked to the nurse C and gave him Dr. L's number in Seattle to call to find out about the Pfizer trial and guess what... big surprise... C didn't pass along the entire message!!!! I was so angry but at the same time it was completely expected otherwise I figure I would have heard something much sooner. So in the end, she never talked with anyone.
BUT.. the great super magical news was that I PEED MY FIRST EVER NORMAL PEE in over 7 years! WOW! It was 228 (or very close to that.. forget now!) and normal is 50-250! It was in the normal range for once! Couldn't believe it! My blood still isn't showing normal levels yet.. I don't really know why that is, but it's still more than double the high end of normal and my ACTH is still more than triple what it should be. My endo thinks that it's the radiation kicking in now because my numbers are still changing without my dose of caber changing.
So the plan right now..? Wait. Wait wait wait! I hate waiting. But since everything is moving in the right direction for the most part, we're going to wait and see what happens. I know for sure that I will not rush to surgery if something is working now.. there would just be no logic behind surgery at the moment, so that's off the table again. I think I will still get copies of my new MRI to send away though and see what just a couple of the drs think.. Mostly interested in hearing from Dr. P and Dr. M at this point. The others wanted to complicate things, but these two were prepared to just go in, scrape things out and be done with it. And the report from the local radiologist said that's only about 1mm left of "stuff".. it's impossible at that size to see if it's tumor, remaining gland or some of both, but it's "rimming" the bottom of my sella. Also, the top of my sella is now caved in because it's mostly empty in there, so that's a really positive thing from the sounds of it. I'll probably have another scan in about 6 months time. And 4 months from now, I have my next endo appt. If my cortisol stays the same or goes down more, I'll stick with caber and try to decrease my dose (staying at this high dose will eventually lead to a heart valve leak.) and I also talked to her about trying growth hormone. We've talked about it many times before, she's against it, and I've never cared too much either way, however now that my cortisol is down, I really feel that even a low dose would help me to rebuild muscle, so she said that if my cortisol stays down, she'll let me start it! Annnd, if things should happen to go the other way again, she'll start me on SOM230 which she found out that we can get now! Woot! So either way, there should be some changes coming in 4 months.. hopefully it'll be a good thing either way it goes!
So if you're looking for me.. I'll just be waiting around.... :P
Tuesday, December 27, 2011
Thursday, December 1, 2011
Don't say it!
Well, I can honestly say I don't hear some of these things as much as I used to, but I can sure say I've heard them all at some point in the course of my sickness. Unless you've walked in my shoes, you'll just never know, I understand that, but that doesn't mean you have to be an uncaring asshole, does it?
I'm lucky I get to stay home in bed? How's that? Yeah, maybe for a day or two, or a week, tops.. but do you know how badly I wish I could get out and do things, just live? Do you know how much I wish I could go to the store for myself? Walk my dog? Play with my nephews? Have my own kids to take care of and play with? Buy my own food, clothes, etc? I rely on my parents for this still. The last time I saw a movie in a theater was in 2005. Since then, there's been times that I COULD have gone, but seriously, how can I justify going to a movie to sit in pain for 2 hours (not counting driving time which is also painful?) Any enjoyment of seeing a movie would completely be ruined by the torture necessary for sitting through it.. the benefits just aren't worth it. And oh, how I wish I could just do whatever I wanted.. I'd be back in school for sure, especially considering I only need two more classes for my degree. I've been saying it for years now, I'd work at McDonald's for the rest of my life if it meant I was healthy enough to actually do the job!!!
Before I got really sick and had to quit working and going to school, I was constantly complaining that I just wanted a day off! I was working M/W/F as scheduled shifts, had classes T/TH, but was picking up as many extra shifts as possible which at times (especially the last year) meant I was working M-Sat (I refused to work Sundays!), and whatever time I wasn't at work or school, I was doing homework, and actually, I always had textbooks with me at work and between calls, I was always reading and taking notes. I used my work holidays to write my exams and I used my school holidays to work more!! I took as many summer and spring classes as I could and I lived on this schedule for two years before I quit everything. I was completely burnt out, there's no doubt about that, but I was sooo close to the finish line, that I just wanted to get it all over with. Heh, so much for that.
Just pray harder. Lmao. Heard this one too. I was told I wouldn't be sick anymore if I just prayed! RIGHT! So THAT'S what I've been doing wrong all these years! I forgot to pray!! Seriously, for the amount of people who have prayed for me over the years, I should be healthier than a horse, and I should probably also live until I'm about 201 years old, at least. Yeah, I'll just pray a little more. (Note: I don't believe prayer will hurt my cause, however I certainly don't believe it will do very much in helping it!)
I'm lucky I get to stay home in bed? How's that? Yeah, maybe for a day or two, or a week, tops.. but do you know how badly I wish I could get out and do things, just live? Do you know how much I wish I could go to the store for myself? Walk my dog? Play with my nephews? Have my own kids to take care of and play with? Buy my own food, clothes, etc? I rely on my parents for this still. The last time I saw a movie in a theater was in 2005. Since then, there's been times that I COULD have gone, but seriously, how can I justify going to a movie to sit in pain for 2 hours (not counting driving time which is also painful?) Any enjoyment of seeing a movie would completely be ruined by the torture necessary for sitting through it.. the benefits just aren't worth it. And oh, how I wish I could just do whatever I wanted.. I'd be back in school for sure, especially considering I only need two more classes for my degree. I've been saying it for years now, I'd work at McDonald's for the rest of my life if it meant I was healthy enough to actually do the job!!!
Before I got really sick and had to quit working and going to school, I was constantly complaining that I just wanted a day off! I was working M/W/F as scheduled shifts, had classes T/TH, but was picking up as many extra shifts as possible which at times (especially the last year) meant I was working M-Sat (I refused to work Sundays!), and whatever time I wasn't at work or school, I was doing homework, and actually, I always had textbooks with me at work and between calls, I was always reading and taking notes. I used my work holidays to write my exams and I used my school holidays to work more!! I took as many summer and spring classes as I could and I lived on this schedule for two years before I quit everything. I was completely burnt out, there's no doubt about that, but I was sooo close to the finish line, that I just wanted to get it all over with. Heh, so much for that.
Just pray harder. Lmao. Heard this one too. I was told I wouldn't be sick anymore if I just prayed! RIGHT! So THAT'S what I've been doing wrong all these years! I forgot to pray!! Seriously, for the amount of people who have prayed for me over the years, I should be healthier than a horse, and I should probably also live until I'm about 201 years old, at least. Yeah, I'll just pray a little more. (Note: I don't believe prayer will hurt my cause, however I certainly don't believe it will do very much in helping it!)
*sighs*..
Not on the list but heard a lot.. "Are you better yet?"... sometimes it's asked with genuine curiosity by someone who you've not talked to in awhile - in that case it's fine. But more often than not it's asked with an undertone of "Are you even trying to get better?".. "You couldn't be THAT sick!"... one of the most annoying questions that also goes along with.. "How are you?" Am I better yet? Hmm.. if I was better, do you really think I'd still be stuck at home, unable to work or go to school, or go out, or have fun, or do ANYTHING?? If I was better, I guarantee you I would not still be doing what I've been doing for the past 7 years!!!!! And 'How am I?'.. well which answer do you want? Do you want me to tell you the truth? To tell you how much pain I'm in, to tell you how horrible, weak, sick, and tired I feel, to tell you how frustrated with life I am, to tell you how sick of fighting for my life I've become, to tell you how jealous I am of the things other people get to do, to tell you how hard it is to do anything even showering or going to the bathroom or feeding myself, to tell you how lonely and miserable this disease can be, to tell you of all the dreams I can't achieve, to tell you all this? Or do you want me to put on my best smile and say "I'm okay, I'm good, I'm fine, I'm alright, I'm great, I'm swell, I'm hunky dory, I'm super".... which do you REALLY want to hear? I bet it's the second one. It's almost always the second one and because *I* know this and because *you* know this.. why do you even waste your breath by still asking? You could ask me if the sun rises each day, and we'd be just as far ahead at understanding how the world works.
Not on the list but heard a lot.. "Are you better yet?"... sometimes it's asked with genuine curiosity by someone who you've not talked to in awhile - in that case it's fine. But more often than not it's asked with an undertone of "Are you even trying to get better?".. "You couldn't be THAT sick!"... one of the most annoying questions that also goes along with.. "How are you?" Am I better yet? Hmm.. if I was better, do you really think I'd still be stuck at home, unable to work or go to school, or go out, or have fun, or do ANYTHING?? If I was better, I guarantee you I would not still be doing what I've been doing for the past 7 years!!!!! And 'How am I?'.. well which answer do you want? Do you want me to tell you the truth? To tell you how much pain I'm in, to tell you how horrible, weak, sick, and tired I feel, to tell you how frustrated with life I am, to tell you how sick of fighting for my life I've become, to tell you how jealous I am of the things other people get to do, to tell you how hard it is to do anything even showering or going to the bathroom or feeding myself, to tell you how lonely and miserable this disease can be, to tell you of all the dreams I can't achieve, to tell you all this? Or do you want me to put on my best smile and say "I'm okay, I'm good, I'm fine, I'm alright, I'm great, I'm swell, I'm hunky dory, I'm super".... which do you REALLY want to hear? I bet it's the second one. It's almost always the second one and because *I* know this and because *you* know this.. why do you even waste your breath by still asking? You could ask me if the sun rises each day, and we'd be just as far ahead at understanding how the world works.
(Disclaimer: This rant is not directed at everyone in my life, chances are if you're actually reading this, it's NOT directed at you.)
Wait wait wait..
Getting so tired of waiting. After all that excitement before, this sucks! I did hear from another dr, from Dr. BERGSNEIDER at UCLA on Wednesday, November 23/11.. he said he thinks he could help, BUT, I need to send a cheque for $350 if I want to talk to him on the phone about it!! I'm thinking.. no? I've heard from 9 out of 11 drs now and he's the first one to ask for money! I was just speaking to the receptionist and she said "We received your package and I'm calling to see what you want from us?" and I felt like saying "DUH!".. I started to say I was looking for the dr's opinion and she cut me off saying "well, I can schedule you for an appt to come into the office".. I said "well, I live in Canada" she said "I know, so you will have to come into the office".. (Now I'm thinking she has NO CLUE where Canada is!!!), then I said "I'd just like to know if the dr even sees anything that he could do?" Her: "the dr has looked at your MRI and thinks he can help so, you can either come in for an appointment, or you can mail a cheque for $350, and then you have to email what's wrong with you and be as detailed as possible (I sent 4 pages of my history typed in a 9pt font - that's not enough??!) and a list of questions you want answered, and then the dr will call you back after he finds the answers to your questions, so it's up to you, but if you come into the office, you don't have to pay because insurance covers office visits".. now I'm trying not to laugh because the cost of a trip there would be a hell of a lot more than 350! So I just asked for the address to mail the cheque to just incase and thanked her for her time, lol. And when she gave me the addy and reminded me that they're in LA, I immediately thought.. "Hmm, dr to the stars, guess it makes sense I'd have to pay for their concierge services!" LOL! So at this point, I don't even intend to contact him again. If he can't even speak to me on the phone, I don't see him as having any huge interest in my case. I also never knew much about him to begin with. *shrugs*
I also finally heard from my endo's office last week. I just talked to the nurse who informed me that my endo has been emailing back and forth with my neuro. That REALLY pissed me off. When I told her about everything I was doing, I told it to her with the expectation of dr/patient confidentiality. Doesn't that apply here? I know they're both my drs, however there was nothing directly impacting my health care to make it necessary for my endo to tell my neuro, right? She also knew I had no intentions of telling him and that's why I asked her to order the MRI instead of just asking my neuro's office who would usually schedule them. Makes me so angry. I know it can't be undone at this point, and I also know that I still need her help, so for me to get upset with her, I would probably be the loser in the end anyway. My neuro apparently did highly recommend Gentili in TO if I was to go ahead with another surgery which I found odd since he was so adamant about not doing any further treatments?
Yesterday I received a huge package of all of my records! So, my endo did come through on that part. Unfortunately she wasn't able to obtain any of my disks from CTs or MRIs. I sort of expected that. They won't release them to anybody other than the patient, for a small fee of $50 a pop. Ugh. It's been quite the interesting read so far. In the records I got copies of most of the letters of correspondence between my family dr, my endo (old endo) and neuro. For one, my old endo tried to sell the other two that it was just PCOS I had even after my family dr ran tests showing my cortisol was high AND the tests my endo did disproved PCOS. My first ever cortisol blood was 1280 (norm 50-300).. months later when I was sicker, I had my first and only diagnostic urine done with the results of the 17OHs being 125 (norm 17-52) and my 24hr UFC was 9866 (norm said "up to 250")... so I was pretty damn sick at the time!!!
Then there was a letter from my neuro to my endo saying that I was "twitchy and wanted treatment".. what the hell does that mean?!! How about I was SICK, DYING and NEEDED treatment?!! Then a real interesting one was after I had already had gamma knife the first time and my endo wrote to my neuro basically saying that she only wanted him to consult, not to treat me! She wanted me to have a BLA and he wrote back saying that a BLA would have probably caused instant Nelson's and he felt gamma knife was the only reasonable treatment.. so it's nice to know that my neuro had my best interest at heart back then. The initial reading on my first MRI said that my pit was pushed over to the left and also that it appeared to have tumors diffused all through out and that's why my whole gland was radiated because none of it looked like it could be saved. It's just so weird reading this stuff now because back then, I wasn't educated about any of this, I had no idea what Cushings really was. At the time I saw my neuro for the first time, I knew one thing and one thing only, I was dying and needed help, whatever that help was, I wanted it NOW so I really didn't ask questions, I just accepted what I was told. I'm not sure I would have or could have done things differently even if I knew more... well, I guess there's not much point to speculating the what if's since I cannot go back to undo any of it. Oh, and my endo apparently told my neuro I was a diabetic, well controlled on meds?? Wtf? I've never been diabetic nor have I been on meds for it!!! Ugh, just yet another reason I'm happy to no longer be dealing with her!
I think that since I had a cold a little over a month ago, things really got shaken up in me. I've done labs twice now and my cortisol that was hovering around 900-1000 (norm 50-300) for the longest time has really been coming down. On November 2nd my cortisol was 665 and my ACTH was 9.7 (norm < 3, it was up to almost 30 before!!) and then after my cold on November 23 my cortisol was down to 554!!! I'm pretty sure my ACTH was still 9.7 for this one too, can't remember now and forgot to write it down. This past week I've felt like pure hell though, so weak, barely any appetite compared to usual, extreme pain, especially the pain in my side back with a real vengeance, and my skin is all clearing up, LOL (wow, one good thing in the mix of it all?! Why bother?!) I've also been doing some kickass sleeping for the most part which is nice after I went for weeks and weeks of only sleeping 4-5hrs per 24hrs. I'm really hoping that this means my numbers have come down even more, although I've not been in the bathroom much which usually happens with dropping? I need a damn home testing kit! I'm really starting to believe though that sending away my info to drs really scared my pit/tumor/adrenals, lol.. they started to worry about what I might do, and thus started to cooperate a little more! haha!!
In the meantime, I'm still waiting to hear from my endo again. I gave the nurse Dr. L's number in Seattle and she was supposed to contact him to find out info about the Pfizer trials. If my numbers keep going on this downward spiral, I won't qualify for the studies anymore, but it would be really nice to at least have a little more info, and also to be able to quit caber and see what happens and hopefully get into a trial. SOM230 looks much more promising for a long time 'cure' than does caber, especially when caber can cause me some serious heart problems with long term use at these high doses. I would like to get off of it if there's a better option out there. Ugh.. hurry up, dumb endo! I wish they would put themselves in our shoes, the patients'.. perhaps they'd see the urgency in things then.
Sooo... I wait.
I've adopted a new motto to live by... while I have many already, haha. But now I'm living strongly with the notion of 'when life gives you lemons, make lemonade'... I'm making a hella lotta lemonade! Drink up!
Thursday, November 17, 2011
Still waiting!
Heard from another one, Dr. Chandler at the University of Michigan. Less impressive, although he did take my info package to the team he works with and discussed me which on it's own is quite impressive! But they decided I've had a lot of treatment already. He recommended doing a UFC and if I'm still quite high then I should head for a BLA. I'm not very familiar with this dr and haven't heard a ton about him, so I'm just going to leave it at that with this once since he didn't show any interest in helping with neurosurgery anyways.
But, 8/11 drs have responded! WOW! I never imagined such a level of responses. Or I figured I would have to pay for consults, or something!
Right now, still waiting to hear from my endo. I've emailed the nurse, called 3 different days and still NOTHING. It drives me insane that it's so hard to communicate with her. I need to talk to her about talking to Dr. L for the trial, GH, and now I also have a new insurance form that I need her to fill out! Grrr. So frustrating! Wait wait wait... that's what being sick is all about it seems. Wait to get better, or wait to get sicker. Wait.
But, 8/11 drs have responded! WOW! I never imagined such a level of responses. Or I figured I would have to pay for consults, or something!
Right now, still waiting to hear from my endo. I've emailed the nurse, called 3 different days and still NOTHING. It drives me insane that it's so hard to communicate with her. I need to talk to her about talking to Dr. L for the trial, GH, and now I also have a new insurance form that I need her to fill out! Grrr. So frustrating! Wait wait wait... that's what being sick is all about it seems. Wait to get better, or wait to get sicker. Wait.
Friday, November 11, 2011
You should open your mail!
Funny how important things turn up when you open your mail! Ok - so I'm guilty, I open the fun mail, and leave the rest - guess I should start opening important stuff sooner. :P
First, I received a letter from my life insurance people saying I'm eligible for more life insurance.. yay? So I signed, copied and will send away the papers for that. Now I'm worth more - take notice of that, folks! ;)
Second, I received a stupid letter from the people dealing with my application for the RDSP - registered disability saving plan with grant and bond. If you're in Canada and sick or disabled, you should really look into it (http://www.hrsdc.gc.ca/eng/disability_issues/disability_savings/rdsp_you.shtml) and hopefully you'll have better luck with the application process than what I've had! It's been a year or more in the works already! I had applied, everything was going well, then I was informed that my disability tax credit had expired over a year ago. This meant a new application, going to the dr for her to fill out paper work that I had to pay for, then sending in the new papers and more waiting. Once that was done, I found out they didn't believe I was still really sick so they started a review on me! Seriously??! I could have just sent a copy of my recent lab work and they would clearly see that I'm sick!! But no, they sent more paper work to my dr, I had to go back again, I had to pay for her to put 2 x's in boxes and write 3 lines of text, and sign her name twice! Then wait some more. Apparently I was approved again for the tax credit, however now they won't communicate that to the RDSP people and so my application is held up again. :( Now I've lost out on about $5000 that could have been MINE! I suppose I shouldn't be surprised - this is the government that I'm speaking about - they'll do anything to not give out money!
Thirdly, I received release forms from my drs office to sign.. although I did open this before! But anyways, she's helping me to get my records and disks from two hospitals. That will take off the burden a fair bit and it'll be good that she has everything too. She didn't have anything of mine from before I came to her.
Fourth - I got an appointment date for the 3T MRI! It pays to have brain problems.. you don't have to wait as long for MRI's of the brain! When people say they've waiting months and months to get an MRI, I always suggest a brain tumor to remedy the problem! ;) Just kidding!
So.. lesson is.. Open your mail!
First, I received a letter from my life insurance people saying I'm eligible for more life insurance.. yay? So I signed, copied and will send away the papers for that. Now I'm worth more - take notice of that, folks! ;)
Second, I received a stupid letter from the people dealing with my application for the RDSP - registered disability saving plan with grant and bond. If you're in Canada and sick or disabled, you should really look into it (http://www.hrsdc.gc.ca/eng/disability_issues/disability_savings/rdsp_you.shtml) and hopefully you'll have better luck with the application process than what I've had! It's been a year or more in the works already! I had applied, everything was going well, then I was informed that my disability tax credit had expired over a year ago. This meant a new application, going to the dr for her to fill out paper work that I had to pay for, then sending in the new papers and more waiting. Once that was done, I found out they didn't believe I was still really sick so they started a review on me! Seriously??! I could have just sent a copy of my recent lab work and they would clearly see that I'm sick!! But no, they sent more paper work to my dr, I had to go back again, I had to pay for her to put 2 x's in boxes and write 3 lines of text, and sign her name twice! Then wait some more. Apparently I was approved again for the tax credit, however now they won't communicate that to the RDSP people and so my application is held up again. :( Now I've lost out on about $5000 that could have been MINE! I suppose I shouldn't be surprised - this is the government that I'm speaking about - they'll do anything to not give out money!
Thirdly, I received release forms from my drs office to sign.. although I did open this before! But anyways, she's helping me to get my records and disks from two hospitals. That will take off the burden a fair bit and it'll be good that she has everything too. She didn't have anything of mine from before I came to her.
Fourth - I got an appointment date for the 3T MRI! It pays to have brain problems.. you don't have to wait as long for MRI's of the brain! When people say they've waiting months and months to get an MRI, I always suggest a brain tumor to remedy the problem! ;) Just kidding!
So.. lesson is.. Open your mail!
Wednesday, November 9, 2011
Rice vial!
This is the place and that's the guy in the pic who did it for me!
http://www.bayshoregiftsinglass.com/
A need a nap!
Well, today started off with a bang! Or rather, a ring! Dr. Prevedello from OSU called bright and early this morning, woke me up in fact! He started off by asking a few questions, then just cut to the chase and said he wanted an IPSS, and then he would do surgery. He said the results from the IPSS would take time, so I would have to make two trips there, but that's it, he would do the surgery! So while I slowly woke up and started processing things, I began thinking, "oh no, he's THAT one!"... he's the one I've feared who says "haha! They can't fix you, but I will!".. everything he was saying - it was all just too picture perfect and he was making big promises. So I asked him why he feels it would be so easy when I've been refused by a few other surgeons and isn't he worried about the fact that I've had so much radiation? He said that it's certainly a risk, but that because of how he fixes leaks, he wasn't worried very much about it. He said he takes a piece from inside your nose to patch it up. He told me just last week he operated on someone very similar to me that had radiation twice and the surgery was a success.. he tooted his own horn some more with various other statistics as well. He asked my age and told me that it's upsetting to him that I've lost so much of my life already, and he wants to put a stop to that. I also asked him about more radiation, and he said a big "NO WAY" saying that with the doses I've had, I'm looking at other kinds of tumors and cancers already, and I could very well lose my vision if I had more radiation. So that wasn't reasonable. So then we talked a bit more, I asked about financial assistance and there are payment packages, but he wasn't too sure of specifics. Then I asked if he knew about SOM - wasn't familiar, so I explained it a bit and he said that he understands my wanting to try it. Then he kinda just said, "well, whenever you're ready, I'm ready!".. and he just mentioned the IPSS again. And a light bulb came on over my head. I DON'T WANT AN IPSS! I realized that no dr needs one because what I want is someone to just go in, regardless of which side things might be on, and just scrape it out, so I told him that and he said "you know what? you're right!". So he said if I decided on doing it, he would just do a radical complete hypophysectomy, which in simple terms means, he would go in there and scrape everything out like gutting a pumpkin!! This made me very happy! He had already said that it looked to him like I had a tiny shriveled pit with a small tumor under the right side sitting on the stalk, and then he realized that my pit isn't producing any other hormones anyways, so there's no point trying to salvage any of it, so he agreed, if I decided to move forward with things, he would just go in there, and scrape it all out!
So I'm not sure what I'm thinking now. I still would like to hear more from others, primarily Dr. Mayberg and Dr. McCutcheon. But it's sounding like although very dangerous, surgery IS possible. It's a realistic thing however to believe that a tumor could still come back since it's pretty common with these tumors and because I seem to be good at making them!!
I also received another phone call from Dr. Ludlam this morning. He was in touch with his Novartis contacts and they refused me. Because of how they're handling this trial this time, they had to refuse International Compassionate Use patients, aka those who've had radiation - me. :( But he was given the contact info for someone at Pfizer, a Canadian drug company and he called them. They said I may be a suitable candidate, however they only deal with dr referrals, so I need to have my dr get me into the trial. So now I'm waiting to hear back from my endo and hoping like hell that she'll help me.
I don't know for sure if I want to try pit surgery or not yet.. I feel like there's about as many pros as there are cons, if not more cons. But regardless, I feel like it would be foolish to go to surgery without first trying SOM230 because a) surgery could kill me, and b) because I could have surgery and develop a new tumor soon after, for sure not be able to have more surgery and need a medicine anyways! So I truly feel like trying SOM is my best next step. Surgery will still always be there, and hey, the technology may even become better by the time I'm ready? I just don't know. :/
I also got two consent forms in the mail today.. my endo apparently agreed to help me locate some of my test results! It's just from two places though, so I'll still have to take on some costs, but this will save me a couple hundred dollars at least! Yay!
It's funny how many messages of support and 'admiration' I've received lately. People have said how proud they are of me for fighting and standing up for myself, and some people have said "I wish I could do that for myself too!".. the stupid part is that *I* have been telling others to do this sort of thing for years, but I never did it myself. I have sat patiently waiting, nodding my head to my drs, and just letting time pass, but not doing 'everything possible' like I have always told others to do. *sighs*.. well, I suppose the important part is that I'm doing something about it all now. And I hope others will not only be proud of me but also learn from me and learn to take action instead of waiting. One thing I learned quite awhile ago is that Drs won't come to you - you must go to them. If you have a test done, unless there's something seriously wrong - they don't usually call you right away with results - if you want them, you must call! Also if you miss an appointment, they have 30 other patients waiting and ready to take your spot. So if you're not happy, oh well! You can be replaced. You're just a pay check to most drs - very sad, yet very true. My uncle always says "the squeaky wheel gets the grease" and I used to not believe it, but now I do. I used to think that if I made too much noise, I would just piss people/drs off and then they wouldn't help me, but with this bold move I've made to seek out help, I've been totally shocked and amazed at how making noise really gets attention! I've also done myself a service by educating myself as much as possible so that I can speak knowledgeably and that seems to have gained me a level of respect with everyone because I know what I'm talking about!! I also have labs and test results that clearly support my case.. the blood/pee don't lie!! So.. I guess for anyone seeing this, if you end up in a position like me.. educate yourself, and take risks.. nobody else will fight for your life the way YOU can. And don't sit quietly waiting for help to come to you, GO FIND IT! Never lose HOPE!
This totally feels like it's become a full time job! Between phone calls, updating family and friends, locating paper work, filling out forms, sending authorizations, emails, mailing packages... geez, I wish the pay check mirrored the work! Although - if I got my life back - I suppose that's payment enough. :)
So I'm not sure what I'm thinking now. I still would like to hear more from others, primarily Dr. Mayberg and Dr. McCutcheon. But it's sounding like although very dangerous, surgery IS possible. It's a realistic thing however to believe that a tumor could still come back since it's pretty common with these tumors and because I seem to be good at making them!!
I also received another phone call from Dr. Ludlam this morning. He was in touch with his Novartis contacts and they refused me. Because of how they're handling this trial this time, they had to refuse International Compassionate Use patients, aka those who've had radiation - me. :( But he was given the contact info for someone at Pfizer, a Canadian drug company and he called them. They said I may be a suitable candidate, however they only deal with dr referrals, so I need to have my dr get me into the trial. So now I'm waiting to hear back from my endo and hoping like hell that she'll help me.
I don't know for sure if I want to try pit surgery or not yet.. I feel like there's about as many pros as there are cons, if not more cons. But regardless, I feel like it would be foolish to go to surgery without first trying SOM230 because a) surgery could kill me, and b) because I could have surgery and develop a new tumor soon after, for sure not be able to have more surgery and need a medicine anyways! So I truly feel like trying SOM is my best next step. Surgery will still always be there, and hey, the technology may even become better by the time I'm ready? I just don't know. :/
I also got two consent forms in the mail today.. my endo apparently agreed to help me locate some of my test results! It's just from two places though, so I'll still have to take on some costs, but this will save me a couple hundred dollars at least! Yay!
It's funny how many messages of support and 'admiration' I've received lately. People have said how proud they are of me for fighting and standing up for myself, and some people have said "I wish I could do that for myself too!".. the stupid part is that *I* have been telling others to do this sort of thing for years, but I never did it myself. I have sat patiently waiting, nodding my head to my drs, and just letting time pass, but not doing 'everything possible' like I have always told others to do. *sighs*.. well, I suppose the important part is that I'm doing something about it all now. And I hope others will not only be proud of me but also learn from me and learn to take action instead of waiting. One thing I learned quite awhile ago is that Drs won't come to you - you must go to them. If you have a test done, unless there's something seriously wrong - they don't usually call you right away with results - if you want them, you must call! Also if you miss an appointment, they have 30 other patients waiting and ready to take your spot. So if you're not happy, oh well! You can be replaced. You're just a pay check to most drs - very sad, yet very true. My uncle always says "the squeaky wheel gets the grease" and I used to not believe it, but now I do. I used to think that if I made too much noise, I would just piss people/drs off and then they wouldn't help me, but with this bold move I've made to seek out help, I've been totally shocked and amazed at how making noise really gets attention! I've also done myself a service by educating myself as much as possible so that I can speak knowledgeably and that seems to have gained me a level of respect with everyone because I know what I'm talking about!! I also have labs and test results that clearly support my case.. the blood/pee don't lie!! So.. I guess for anyone seeing this, if you end up in a position like me.. educate yourself, and take risks.. nobody else will fight for your life the way YOU can. And don't sit quietly waiting for help to come to you, GO FIND IT! Never lose HOPE!
This totally feels like it's become a full time job! Between phone calls, updating family and friends, locating paper work, filling out forms, sending authorizations, emails, mailing packages... geez, I wish the pay check mirrored the work! Although - if I got my life back - I suppose that's payment enough. :)
Tuesday, November 8, 2011
Oh yeah..
I also had emailed Dr. Laws back on Sunday night asking a few questions. I heard back from him first thing Monday morning. He said that with regards to the radiation, I've had too much and to have more is NOT a reasonable strategy. He said "surgery IS possible, but I need an IPSS first" and that once I have my new MRI and new labs to please forward them on. So, it all sounded really great until I spoke with Ludlam and now I'm feeling like I mentioned in the last post, that pit surgery just might not be my best bet anymore? :/ *sighs*.. Wait and see.. more people to talk to still! Onward I march!
Rejuvenated!
Yesterday morning I got up bright and early to find SNOW! Pure white outside. Trees glistening. Perhaps that was the first sign of good things to come? I do love the snow - well, perhaps it's the temperatures that come with the snow that I really appreciate most! Cold weather - my fave!
So I went to the hospital for blood work, a morning ACTH and cortisol and to check on my liver as I'd planned to start up on keto again. I received a call in the afternoon from my nurse.. and.. <drum roll>.. my cortisol finally broke! The last few labs have shown that my ACTH was coming down, but my cortisol was being stubborn and hovering around 900 still (norm 50-300) and this time it came down! My nurse also told me that my liver was finally starting to look better too. My enzymes were all up, and this was the first time I've shown improvement there in a very long time! Wow, good news! So he said to wait until he talked to my endo. Then today I received another phone call back and she said.. "no keto!".. my cortisol was 665 and we're hoping that it's going to continue the downward trend, and so she wanted to just wait and see what happens. She wants me to do a UFC though. :( Boo! I think that could be my most hated test in this disease!! Give me needles, shove me in tubes, just don't make me do a UFC!! :P So as soon as I get the req, that's what I'll be doing. Ho hum.
Yesterday I also received a phone call from John at Dr. Ludlam's office in Seattle where he runs the Swedish Neuroendocrine Program with Dr. Mayberg. I had sent my info pkg directly to Dr. M and apparently he read it and passed it off to Ludlam. Then today I had a phone appt with Ludlam!!! We spoke for 45 minutes, I was quite shocked! He said that Dr. M thought that I was possibly a good candidate for SOM230 the drug that Ludlam is trying to get FDA approval for, however I learned that I couldn't get into that trial. Ludlum started off though by saying he thought my Cushings was mild now. He tried to do a quick conversion of units in his head and said my cortisol is about 26 with the high end of normal there being 21, so I wasn't too much above normal. He said that they usually use UFC's to keep track of level there and doesn't like how Canada and other countries use blood. He asked about my drs and how I'm feeling, what hormones I'm replacing, about why I had radiation first instead of a transsphenoidal, and many other things. One thing he was especially bothered by was the fact that I'm not on GH (growth hormone) replacements. I told him my endo didn't believe in them, plus we also fear making any tumors grow, and he told me about research discrediting that belief. He said I really need to have GH and that my lack of it could be contributing to a lot of how I'm feeling which I've always just blamed on the cortisol. He said he would happily talk to my endo if she was agreeable to tell her the importance of GH.
Then we discussed possible brain surgery. He and Dr. M feel that brain surgery IS possible, but they agree that I've had too much radiation and that the texture of my pit and surrounding area is very altered due to the radiation, however that doesn't make it inoperable, just makes it very high risk and dangerous. He said that he's certain M would be more than willing to go in and try if I wanted, however he could almost give me a 100% assurance that I would end up with a CSF (cerebral spinal fluid) leak which could mean weeks up to months in the hospital. He said I wouldn't be able to travel home if this happened and I would have to stay until they got it under control and this would ultimately mean 100's of thousands of dollars out of pocket for me. He said the hospital doesn't have any type of programs that I would qualify for so the cost would be mine entirely. And, well.. there's no way of that! All that aside, he said there'd still be a chance of M missing some of the tumor, or that he could get it all, I could have a year of feeling somewhat better, and then it would come back again and a surgery may not be possible then, and I'd feel just as I do now. He just really felt that it wasn't worth it, but IN HIS OPINION - NOT AS MY DR, he would not recommend it. In the end, I'm inclined to agree with him, but I still asked to speak with M to hear it straight from the horse's mouth. I wouldn't feel right just taking the info second-hand as the whole purpose of my mission here is to actually hear "yes" or "no" from all of these drs. So now I wait to hear from M, but especially after being turned down my Dr. Q at Hopkins, it's really not sounding like surgery on my brain is a reasonable option anymore. Ludlam said he also believes I've long ago exceeded my lifetime recommended doses of radiation, so doesn't feel that is a viable option either. I guess my neuro was telling the truth - not that I didn't believe him - but I needed reassurance.
So Ludlam's first choice would be a BLA. I told him my concerns about Nelson's and he feels that my risk is no higher than anyone else's at this point. He said my age is a factor, however with the amount of radiation I've had - there was studies and reports saying that radiation makes the environments non-conducive to tumor growth and so I have that in my favor. In some instances, people will have their adrenals out (a major cause of Nelson's) and then have radiation of the pit/sella JUST to avoid Nelson's tumors because the radiation keeps the tumors away. And with the amount I've had, tumors would practically run the other way before trying to settle in my head! He thinks my odds of Nelson's is about 30%. That still seems like an awful lot to me considering that I can't get any surgeon into my head NOW, how would I get one there later if I was in that 30% and actually got Nelson's??? He saw my point on that one, but he said he still tells all of his patients that if pit surgery doesn't work, a BLA comes next. (However, once SOM230 is released, he plans to put SOM ahead of a BLA as his 'algorithm to treatment'). He tells everyone (and it's in his video! http://www.youtube.com/watch?v=jVSdYYmRqvM and you can also see Dr. Mayberg here: http://www.youtube.com/watch?v=-OLLq6gvUCg&feature=results_video&playnext=1&list=PLEE2AFFA4074EE768) that when you treat Cushings, you trade one disease for another - Addisons and possibly a side of Nelson's, but he feels that treating Addison's is on par with diabetes. Diabetics have meds, needles, tests, and drs to deal with, but they lead otherwise normal (or their new normal), most healthy lives. He feels I could and I SHOULD have this too.
I told him about my taking cabergoline right now. I told him how it was pure pure, evil, deathly hell to start taking it, however it's (or it in combo with my radiation - we'll never know for certain which is working because the two can never be separated) allowed me to feel the best I've felt since becoming sick. He said he's tried caber with some patients, and never seen overwhelming results. Some people improve slightly, but never to the point of returning to normal life, and never feeling "good" again. He said that for as much as I think it's working, I wouldn't be looking for help if it really was - good point! He also said that for some reason, other countries, as in non-USA countries report higher instances of it working successfully, but he's never been witness to that finding in his years, and that's why he rarely prescribes it anymore.
He's also been working closely with mifepristone, but his thoughts on this one are pretty much the same as mine. Mifepristone works on the adrenal/cortisol level the same way as how keto works. And for keto he said it was too toxic (to the liver mostly) to use it how I would need to use it. With these drugs, your body basically still will make cortisol, from my understanding, but the drugs just prevent your body from using them. This however will fool your brain/pit into thinking there's not enough cortisol causing your ACTH to rise which is the beast behind my disease now. As he explained it to me, SOM and even caber work centrally on your brain, they work on the receptors to block ACTH production which in turn halts the production of cortisol. So SOM and caber work centrally, mif and keto work peripherally and we were both in agreement that my case calls for one that works centrally otherwise I might as well just have a BLA right now because it would be doing the same thing as mif/keto - making my ACTH go up!
So that being said, the next topic was Pasireotide aka SOM230 aka SOM. I've heard about it, researched it and only recently learned that he was so involved with it. The FDA recently turned them down for release for whatever reasons so it's been held up. I forget exactly, but I think he said it was just this week that they finished signing the paper work to start up another phase 3 trial. Due to the time that's been wasted though, they signed up this time WITHOUT "compassionate use" which means people like me have been excluded from this specific trial - aka, people who've had radiation already. If I didn't have radiation, I could have come right away and been in!!! He said they just signed up two people from out of the country even! Dammit! But he said he's 100% on board with SOM. As mentioned above, he plans to have it as the first course of treatment after unsuccessful pit surgery. In the past year of the trial, 80% of the people achieved effective results and most had that occur after only 2 months of treatment! Sounds as good as I've been reading! He said the biggest concern with it right now however is that it raises blood sugar and by the sounds of it, some people quit the trials because of this. I'm assuming this could be why the FDA isn't gung-ho about it. Another concern is that he pretty much only uses UFC's as a measurement, and some (including my own dr) don't feel UFC's are the best measurements available. But regardless, I think it's MY best option for right now. All meds, all surgeries come with side effects and risks.. I'm just to the point now of deciding which crappy side effects and risks I'm willing to take, because if I avoid all of them and sit back quietly, I'm no further ahead and I'm not LIVING.
Ludlam told me to email John saying that I authorized them to give my info to Novartis though and he would talk to some of the big wigs there to try to get me SOM! Most likely it'll just be to get me into a trial where they have compassionate use. He said there's many trials going on allover the USA, so hopefully there was one a bit closer to me. He said travel costs would still all be mine - I said I would make it happen! If I have to throw myself a damn fundraiser or a social (it's a regional thing here, basically a fundraiser, people buy tickets, you get cheap alcohol for people to buy drinks and get drunk, you ask for prize donations and people buy tickets to win stuff, etc) I will just damn well do it!!! But SOM really is my BEST option for now. I always still have a BLA as an option down the road, and by the end of our call, Ludlam was agreeing with me for the most part. He kept reiterating that "I am NOT your doctor, and this is NOT official advice, your doctors know what's best for you, and I'm just speaking with you because you've asked for help and my opinion and advice!".. I kept saying "I understand! I know! Thank you!".. but he kept repeating it so I knew that his advice was not the law to be followed!
The end result is that he's going to contact Novartis for me, probably by tomorrow or the next day and I should hear from them. Dr. Mayberg will call me to offer his opinion. I told him I would be doing a UFC soon and having a 3T MRI, so he said I could forward those to them. And he thought it would be good (as he thinks it's one of the best tests for Cushings) if I did a dex/CRH test (which I don't even know what that is!) and get those results to him as well. He said he was more than happy to talk to my endo, but has found most endos don't like talking to him, haha!! I'll be emailing my endo with this update and we'll see what she says! She said she was willing to help me get SOM, so hopefully she'll be inclined to listen to what he's got to say, and who knows, maybe I'll get some GH out of it all too!
Good news! I felt quite educated, rejuvenated, and hopeful after we hung up. I feel like a pit surgery probably isn't the ideal thing and that perhaps I should not even bother worrying about trying to send everything to Dr. Jho, Dr. Laws, Dr. Gentili? I'm not sure. I'd still love to hear from McCutcheon since people speak of him like he's the 'god of pit tumors', but so far no response!! I'm pretty certain I want to try SOM230 before trying any type of surgery though. Ludlam also said that for those who stopped taking it, everything reversed (including side effect and initial symptoms) so I feel like it's risk very worth taking! I really really hope I get good news about getting into a trial! I WANT TO GO!!
Tonight I breath a sigh of.. real HOPE! It's my life.. I'm sure as hell fighting!
---
Here's some more info about SOM230. This reports 26% positive findings. Perhaps Ludlam over stated, but it's his 'baby' so I forgive him that (or I misunderstand maybe? I dunno!) http://www.prnewswire.com/news-releases/novartis-drug-som230-is-first-medical-therapy-to-show-efficacy-in-a-phase-iii-trial-in-cushings-disease-a-debilitating-hormonal-disorder-103503689.html
And here's another link to some more about SOM230: http://www.novartisoncology.com/research-innovation/pipeline/pasireotide.jsp?usertrack.filter_applied=true&NovaId=2935376892996810584
So I went to the hospital for blood work, a morning ACTH and cortisol and to check on my liver as I'd planned to start up on keto again. I received a call in the afternoon from my nurse.. and.. <drum roll>.. my cortisol finally broke! The last few labs have shown that my ACTH was coming down, but my cortisol was being stubborn and hovering around 900 still (norm 50-300) and this time it came down! My nurse also told me that my liver was finally starting to look better too. My enzymes were all up, and this was the first time I've shown improvement there in a very long time! Wow, good news! So he said to wait until he talked to my endo. Then today I received another phone call back and she said.. "no keto!".. my cortisol was 665 and we're hoping that it's going to continue the downward trend, and so she wanted to just wait and see what happens. She wants me to do a UFC though. :( Boo! I think that could be my most hated test in this disease!! Give me needles, shove me in tubes, just don't make me do a UFC!! :P So as soon as I get the req, that's what I'll be doing. Ho hum.
Yesterday I also received a phone call from John at Dr. Ludlam's office in Seattle where he runs the Swedish Neuroendocrine Program with Dr. Mayberg. I had sent my info pkg directly to Dr. M and apparently he read it and passed it off to Ludlam. Then today I had a phone appt with Ludlam!!! We spoke for 45 minutes, I was quite shocked! He said that Dr. M thought that I was possibly a good candidate for SOM230 the drug that Ludlam is trying to get FDA approval for, however I learned that I couldn't get into that trial. Ludlum started off though by saying he thought my Cushings was mild now. He tried to do a quick conversion of units in his head and said my cortisol is about 26 with the high end of normal there being 21, so I wasn't too much above normal. He said that they usually use UFC's to keep track of level there and doesn't like how Canada and other countries use blood. He asked about my drs and how I'm feeling, what hormones I'm replacing, about why I had radiation first instead of a transsphenoidal, and many other things. One thing he was especially bothered by was the fact that I'm not on GH (growth hormone) replacements. I told him my endo didn't believe in them, plus we also fear making any tumors grow, and he told me about research discrediting that belief. He said I really need to have GH and that my lack of it could be contributing to a lot of how I'm feeling which I've always just blamed on the cortisol. He said he would happily talk to my endo if she was agreeable to tell her the importance of GH.
Then we discussed possible brain surgery. He and Dr. M feel that brain surgery IS possible, but they agree that I've had too much radiation and that the texture of my pit and surrounding area is very altered due to the radiation, however that doesn't make it inoperable, just makes it very high risk and dangerous. He said that he's certain M would be more than willing to go in and try if I wanted, however he could almost give me a 100% assurance that I would end up with a CSF (cerebral spinal fluid) leak which could mean weeks up to months in the hospital. He said I wouldn't be able to travel home if this happened and I would have to stay until they got it under control and this would ultimately mean 100's of thousands of dollars out of pocket for me. He said the hospital doesn't have any type of programs that I would qualify for so the cost would be mine entirely. And, well.. there's no way of that! All that aside, he said there'd still be a chance of M missing some of the tumor, or that he could get it all, I could have a year of feeling somewhat better, and then it would come back again and a surgery may not be possible then, and I'd feel just as I do now. He just really felt that it wasn't worth it, but IN HIS OPINION - NOT AS MY DR, he would not recommend it. In the end, I'm inclined to agree with him, but I still asked to speak with M to hear it straight from the horse's mouth. I wouldn't feel right just taking the info second-hand as the whole purpose of my mission here is to actually hear "yes" or "no" from all of these drs. So now I wait to hear from M, but especially after being turned down my Dr. Q at Hopkins, it's really not sounding like surgery on my brain is a reasonable option anymore. Ludlam said he also believes I've long ago exceeded my lifetime recommended doses of radiation, so doesn't feel that is a viable option either. I guess my neuro was telling the truth - not that I didn't believe him - but I needed reassurance.
So Ludlam's first choice would be a BLA. I told him my concerns about Nelson's and he feels that my risk is no higher than anyone else's at this point. He said my age is a factor, however with the amount of radiation I've had - there was studies and reports saying that radiation makes the environments non-conducive to tumor growth and so I have that in my favor. In some instances, people will have their adrenals out (a major cause of Nelson's) and then have radiation of the pit/sella JUST to avoid Nelson's tumors because the radiation keeps the tumors away. And with the amount I've had, tumors would practically run the other way before trying to settle in my head! He thinks my odds of Nelson's is about 30%. That still seems like an awful lot to me considering that I can't get any surgeon into my head NOW, how would I get one there later if I was in that 30% and actually got Nelson's??? He saw my point on that one, but he said he still tells all of his patients that if pit surgery doesn't work, a BLA comes next. (However, once SOM230 is released, he plans to put SOM ahead of a BLA as his 'algorithm to treatment'). He tells everyone (and it's in his video! http://www.youtube.com/watch?v=jVSdYYmRqvM and you can also see Dr. Mayberg here: http://www.youtube.com/watch?v=-OLLq6gvUCg&feature=results_video&playnext=1&list=PLEE2AFFA4074EE768) that when you treat Cushings, you trade one disease for another - Addisons and possibly a side of Nelson's, but he feels that treating Addison's is on par with diabetes. Diabetics have meds, needles, tests, and drs to deal with, but they lead otherwise normal (or their new normal), most healthy lives. He feels I could and I SHOULD have this too.
I told him about my taking cabergoline right now. I told him how it was pure pure, evil, deathly hell to start taking it, however it's (or it in combo with my radiation - we'll never know for certain which is working because the two can never be separated) allowed me to feel the best I've felt since becoming sick. He said he's tried caber with some patients, and never seen overwhelming results. Some people improve slightly, but never to the point of returning to normal life, and never feeling "good" again. He said that for as much as I think it's working, I wouldn't be looking for help if it really was - good point! He also said that for some reason, other countries, as in non-USA countries report higher instances of it working successfully, but he's never been witness to that finding in his years, and that's why he rarely prescribes it anymore.
He's also been working closely with mifepristone, but his thoughts on this one are pretty much the same as mine. Mifepristone works on the adrenal/cortisol level the same way as how keto works. And for keto he said it was too toxic (to the liver mostly) to use it how I would need to use it. With these drugs, your body basically still will make cortisol, from my understanding, but the drugs just prevent your body from using them. This however will fool your brain/pit into thinking there's not enough cortisol causing your ACTH to rise which is the beast behind my disease now. As he explained it to me, SOM and even caber work centrally on your brain, they work on the receptors to block ACTH production which in turn halts the production of cortisol. So SOM and caber work centrally, mif and keto work peripherally and we were both in agreement that my case calls for one that works centrally otherwise I might as well just have a BLA right now because it would be doing the same thing as mif/keto - making my ACTH go up!
So that being said, the next topic was Pasireotide aka SOM230 aka SOM. I've heard about it, researched it and only recently learned that he was so involved with it. The FDA recently turned them down for release for whatever reasons so it's been held up. I forget exactly, but I think he said it was just this week that they finished signing the paper work to start up another phase 3 trial. Due to the time that's been wasted though, they signed up this time WITHOUT "compassionate use" which means people like me have been excluded from this specific trial - aka, people who've had radiation already. If I didn't have radiation, I could have come right away and been in!!! He said they just signed up two people from out of the country even! Dammit! But he said he's 100% on board with SOM. As mentioned above, he plans to have it as the first course of treatment after unsuccessful pit surgery. In the past year of the trial, 80% of the people achieved effective results and most had that occur after only 2 months of treatment! Sounds as good as I've been reading! He said the biggest concern with it right now however is that it raises blood sugar and by the sounds of it, some people quit the trials because of this. I'm assuming this could be why the FDA isn't gung-ho about it. Another concern is that he pretty much only uses UFC's as a measurement, and some (including my own dr) don't feel UFC's are the best measurements available. But regardless, I think it's MY best option for right now. All meds, all surgeries come with side effects and risks.. I'm just to the point now of deciding which crappy side effects and risks I'm willing to take, because if I avoid all of them and sit back quietly, I'm no further ahead and I'm not LIVING.
Ludlam told me to email John saying that I authorized them to give my info to Novartis though and he would talk to some of the big wigs there to try to get me SOM! Most likely it'll just be to get me into a trial where they have compassionate use. He said there's many trials going on allover the USA, so hopefully there was one a bit closer to me. He said travel costs would still all be mine - I said I would make it happen! If I have to throw myself a damn fundraiser or a social (it's a regional thing here, basically a fundraiser, people buy tickets, you get cheap alcohol for people to buy drinks and get drunk, you ask for prize donations and people buy tickets to win stuff, etc) I will just damn well do it!!! But SOM really is my BEST option for now. I always still have a BLA as an option down the road, and by the end of our call, Ludlam was agreeing with me for the most part. He kept reiterating that "I am NOT your doctor, and this is NOT official advice, your doctors know what's best for you, and I'm just speaking with you because you've asked for help and my opinion and advice!".. I kept saying "I understand! I know! Thank you!".. but he kept repeating it so I knew that his advice was not the law to be followed!
The end result is that he's going to contact Novartis for me, probably by tomorrow or the next day and I should hear from them. Dr. Mayberg will call me to offer his opinion. I told him I would be doing a UFC soon and having a 3T MRI, so he said I could forward those to them. And he thought it would be good (as he thinks it's one of the best tests for Cushings) if I did a dex/CRH test (which I don't even know what that is!) and get those results to him as well. He said he was more than happy to talk to my endo, but has found most endos don't like talking to him, haha!! I'll be emailing my endo with this update and we'll see what she says! She said she was willing to help me get SOM, so hopefully she'll be inclined to listen to what he's got to say, and who knows, maybe I'll get some GH out of it all too!
Good news! I felt quite educated, rejuvenated, and hopeful after we hung up. I feel like a pit surgery probably isn't the ideal thing and that perhaps I should not even bother worrying about trying to send everything to Dr. Jho, Dr. Laws, Dr. Gentili? I'm not sure. I'd still love to hear from McCutcheon since people speak of him like he's the 'god of pit tumors', but so far no response!! I'm pretty certain I want to try SOM230 before trying any type of surgery though. Ludlam also said that for those who stopped taking it, everything reversed (including side effect and initial symptoms) so I feel like it's risk very worth taking! I really really hope I get good news about getting into a trial! I WANT TO GO!!
Tonight I breath a sigh of.. real HOPE! It's my life.. I'm sure as hell fighting!
---
Here's some more info about SOM230. This reports 26% positive findings. Perhaps Ludlam over stated, but it's his 'baby' so I forgive him that (or I misunderstand maybe? I dunno!) http://www.prnewswire.com/news-releases/novartis-drug-som230-is-first-medical-therapy-to-show-efficacy-in-a-phase-iii-trial-in-cushings-disease-a-debilitating-hormonal-disorder-103503689.html
And here's another link to some more about SOM230: http://www.novartisoncology.com/research-innovation/pipeline/pasireotide.jsp?usertrack.filter_applied=true&NovaId=2935376892996810584
Sunday, November 6, 2011
So this is how it goes..
The results of my efforts as of Friday, November 4th, 2011 are as follows:
- I received an e-mail from Dr. Gentili in Toronto. He asked for a "3T MRI with dynamic scanning." Once he has this he will be able to determine if there's anything that he can do, and would see me in office if need be.
- I received an e-mail from Dr. Swearingen at Mass General asking for my initial MRI and blood work before any treatment and asking if I've had an IPSS (Inferior Petrosal Sinus Sampling).
- I received a phone called from Jill, the assistant at Dr. Quinones office at Johns Hopkins. Based on my MRI, Dr Q doesn't feel as though there's enough tissue left to safely operate, he feels I've had too much radiation and does not advise any further treatment to my brain. He does not do anything with gamma knife, but said I could try contacting another gamma knife center. He does not refer people to clinical trials, but suggested I look into them. He wants to still see the results of my 3T MRI because it will offer a lot more information and if my tumor grows, he'd be happy to try to assist me later on.
- I received an e-mail from Dr. Laws at Brigham and Women's Hospital. He acknowledges that this is a difficult situation with Cushing's and that I continue to have elevated cortisol and developed the anticipated pituitary insufficiency. He said:
"The MRI studies show a secondary empty sella. It is possible, but not certain, that there may be small amounts of pituitary tumor tissue at the base of the sella. Your situation is such that additional radiation therapy is not a reasonable strategy. There are two trials of medical therapy ongoing at the Massachusetts General Hospital, and you can find out more information about them through the NIH website. They involve drug treatment with either pasireotide or mifepristone. I would encourage you to explore these possibilities. A surgical option might be available, but would require an inferior proposal sinus sampling procedure before being certain that it is a reasonable recommendation."
- I received a phone call from the assistant, Dane and Dr. Jho's office in Pittsburgh. Dr. Jho requested all "clinical notes" which was clarified as anything relevant to my diagnosis, copies of my initial MRI from diagnosis (which would be with Dr. Salamon), my MRI/CT's from after BOTH gamma knifes, and all lab work from diagnosis and after each gamma knife along with the upcoming 3T MRI.
---
I have looked into obtaining all the required documents and disks that are needed and it's becoming a very expensive task. I was told by Dr. S's (old local endo) receptionist that if Dr. L (or her office - present local endo) requests my entire file, I would not be charged, so I'm hoping this can be done, also just for Dr. L to have my whole file for herself. She is to send a letter with my name, date of birth and both Manitoba health numbers in order to get it. If I do it, I was told it would be a $25 administration fee plus an additional 25-50 cents per page (the woman couldn't remember for sure) and it would also be a month long wait. If Dr. L does it, I avoid the cost and wait, supposedly.
I spoke with a woman in Health Records at St. B and was also told there would be a $25 admin fee plus 50 cents per page, however if my Dr requests copies, all the fees are waived, therefore I'm hoping Dr. L will also be able to request files from here.
I was not able to get a hold of anyone at Health Sciences records to find out about obtaining my files from there, they didn't answer the phone after two tries, however I'm assuming it will be much the same, that I would have to pay, but my Dr could request it for free.
When I got my MRI disk from HSC to send to the above drs, it was a $50 fee for the disk, but again, if my Dr requests it, I believe the fee is waived therefore unless Dr. L can help me get the pre-diagnosis, post-gamma knife 1, post-gamma knife 2, and forthcoming 3T MRI disks ($200+), I doubt I will be able to afford them all in order to send ($20 to mail each registered package) to Dr. Jho especially who requested all of them.
I was not able to get a hold of anyone at Health Sciences records to find out about obtaining my files from there, they didn't answer the phone after two tries, however I'm assuming it will be much the same, that I would have to pay, but my Dr could request it for free.
When I got my MRI disk from HSC to send to the above drs, it was a $50 fee for the disk, but again, if my Dr requests it, I believe the fee is waived therefore unless Dr. L can help me get the pre-diagnosis, post-gamma knife 1, post-gamma knife 2, and forthcoming 3T MRI disks ($200+), I doubt I will be able to afford them all in order to send ($20 to mail each registered package) to Dr. Jho especially who requested all of them.
---
So this is everything that's happened until now. The initial responses I've had are much like what Dr. F (local neuro) has already told me, but I felt I needed to look more to see IF there was something being missed, or just ANYTHING that could be done. I'd like to be able to send the requested documents to these Drs and I still hope to hear from more of them.
As discussed with Dr. L in clinic, I know that I may encounter someone who says "oh! None of them can fix you, but I can!" so I am still going to be cautious. My goal is to find someone who will say "I might be able to help, I will go in and try , but if it doesn't look good, I will abort mission!" I need someone willing to take a calculated risk.
If the end result of my efforts if everyone saying "no," then I will have to accept this, but I couldn't live with myself if I didn't at least try. I completely understand how I approached this wrong by not consulting Dr. L first and I feel bad for that, however I honestly didn't even expect the responses I've received as from in the phone calls I made prior to sending my information, I was told that these drs either weren't accepting new patients, or that my odds of receiving help since I'm from out of the country were not good. I've just been shocked by the response. I'm wondering if from Dr. F taking my case to conferences, if some of these Drs. had already heard about me and that inspired their interest and quick responses? I suppose I'll never know. But anyway, I do trust and have always trusted Dr. F - I love the man! - but I just needed to be certain that nothing else could be done. This is MY LIFE, I do not want to die with people saying "well, she didn't even try!", I want them to say "she did everything she could!"
If the end result of my efforts if everyone saying "no," then I will have to accept this, but I couldn't live with myself if I didn't at least try. I completely understand how I approached this wrong by not consulting Dr. L first and I feel bad for that, however I honestly didn't even expect the responses I've received as from in the phone calls I made prior to sending my information, I was told that these drs either weren't accepting new patients, or that my odds of receiving help since I'm from out of the country were not good. I've just been shocked by the response. I'm wondering if from Dr. F taking my case to conferences, if some of these Drs. had already heard about me and that inspired their interest and quick responses? I suppose I'll never know. But anyway, I do trust and have always trusted Dr. F - I love the man! - but I just needed to be certain that nothing else could be done. This is MY LIFE, I do not want to die with people saying "well, she didn't even try!", I want them to say "she did everything she could!"
I'm currently taking 3.0mg of cabergoline 3 times per week, but I feel like I'm running high again, so I will try to add keto back in. And I will wait and HOPE for more good responses from the neurosurgeons I have contacted.
HOPE HOPE HOPE.. can't ever lose HOPE.
HOPE HOPE HOPE.. can't ever lose HOPE.
Saturday, November 5, 2011
What a pit MRI looks like!
http://www.ghorayeb.com/pituitarymri.html
This is what a pituitary MRI looks like. In my case, I've had so much radiation that my pituitary is gone, and I just have a tiny amount of "suspicious tissue" left at the very bottom. I'm hoping one of the neuros I've contacted is willing to take a 'calculated risk' to go in there and scrape it out. I'm of course worried about all the ones who might say "ha ha! He can't fix you, but I can!".. so I know to steer clear of those. Preferably I'd like one who says "I think I might be able to help, I will try. I will go in there, see what I can do, but if it doesn't look good, I will abort mission!".. that's what I really want and HOPE for. Either that or someone who will agree to try radiation for a 3rd time. There are risks of burning through the sella with radiation, I know that. But I'm at the point of considering 'which is worse?'.. and I'm starting to think that taking a risk is better than continuing "living" as I am. There's also the concern of radiation leading to cancer, etc.. however that's far away - 10+ years down the road? Well if Cushings kills me in 3, the fear of cancer from radiation down the road just doesn't matter, does it?
This is what a pituitary MRI looks like. In my case, I've had so much radiation that my pituitary is gone, and I just have a tiny amount of "suspicious tissue" left at the very bottom. I'm hoping one of the neuros I've contacted is willing to take a 'calculated risk' to go in there and scrape it out. I'm of course worried about all the ones who might say "ha ha! He can't fix you, but I can!".. so I know to steer clear of those. Preferably I'd like one who says "I think I might be able to help, I will try. I will go in there, see what I can do, but if it doesn't look good, I will abort mission!".. that's what I really want and HOPE for. Either that or someone who will agree to try radiation for a 3rd time. There are risks of burning through the sella with radiation, I know that. But I'm at the point of considering 'which is worse?'.. and I'm starting to think that taking a risk is better than continuing "living" as I am. There's also the concern of radiation leading to cancer, etc.. however that's far away - 10+ years down the road? Well if Cushings kills me in 3, the fear of cancer from radiation down the road just doesn't matter, does it?
Thursday, November 3, 2011
Oops, I did it again!
Well, I was against blogs, even tried to start writing one before, but didn't stick to it, and heck, I might not stick to this one either, but with everything going on right now, I thought a blog would be a good way to keep things in order and maybe people will read it and it will help them. I finally feel like I might be in the position to help others now. So I guess I need to back track to where this all began? Seems only logical to do so.
So here begins my story of my fight with Cushings Disease!
With everything that I've tried.. it hasn't worked. When I first was diagnosed and we discussed treatment options, I was told that once I had gamma knife surgery, it wouldn't be an instant fix, but within a year I would be back to my life. I would be back to work, I would be back to school, I would finish my psych degree and would be living life as though nothing had happened. Boy were they WRONG. A year came and went, and as mentioned above, during that first year post-op, I DID have a few improvements and was hopeful when told, "well, maybe another 6 months, it takes time and gamma knife can continue working for up to 10 years".. so I patiently waited. My employer kept calling every 3 months to check on my progress and I kept extending my sick-leave, still hoping. By the time of the second gamma knife, I began losing a bit of hope and soon my employer stopped calling and I was formally "let go." But I continued to fight.
Now, after all the surgeries, and all the meds, I'm still NOT better yet. I finally mustered up the courage to take things into my own hands a little bit. I made the decision that I didn't want my friends and family standing around my grave site saying "well! she just gave up and threw in the towel!".. no, I want them instead to say "she did everything she could! She fought 'til the bitter end!" I want my friends and family to be proud of me. I want my life to have meant something, even if it was just to teach others how to cope with a horrible disease.
So with all that in mind, and after having my neurosurgeon refuse to treat me anymore, and put it in writing (!) (he said that if he did more radiation, he'd likely burn right through, causing a hole and CSF leak that could not be repaired, and also that a traditional surgery was impossible now because the texture of the tissue becomes changed from radiation, and it's like a hard rubber eraser - too dangerous to try cutting through), I decided to make up packages and send my information to well-known, trusted neurosurgeons. I asked around in the groups on Facebook and came up with a top 11 list consisting of:
So here begins my story of my fight with Cushings Disease!
History and Time Line of Symptoms and Treatments:
2002-2004
- Started to see weight gain. My height was 5’10 and I had maintained a weight of approx 180lbs (okay, so I was already chubby, but maybe Cushings had started long before I even know?) for a few years, however my weight started going up and I was about 240lbs and much more now!! (Not saying!)
- I started to have problems with my periods being less regular, more cramping than usual.
- Severe acne after never having any skin problems from early teens until this time.
- I began having problems with my blood pressure and was ultimately put on Spironolactone followed by trying a couple other blood pressure medications which I stayed on until after my first gamma knife surgery.
- I had severe swelling in my feet, ankles and calves to the point that it was extremely painful and sometimes I could not even put on proper shoes.
At this time, I had been under the care of my family physician who treated me for the high blood pressure and instructed me to lose weight in order to resolve my symptoms. When this didn’t work, and I continued to gain and eventually lost my periods altogether, I was referred to an endocrinologist. I went through testing for blood diseases, PCOS and some other basic testing and my endocrinologist at the time told me that I most likely had microscopic cysts giving me PCOS, and again I was instructed to lose weight, stop lying about what I was eating, see a psychologist and exercise more.
December 2005
- Still had all the above symptoms with continued weight gain.
- Now was plagued by severe debilitating headaches. Generally speaking, I’d never had headaches in my life until now. I was seen in the ER where they did a CT scan and I was told that they found “an unusual clump of cells” but was also told that in some people’s brains it just looked this way, and I wasn’t to be concerned. I was treated with IV narcotics and sent home with morphine to control the headaches. No explanation was given for why I was having them, however I personally believe my blood pressure was somehow involved because movement and any change in elevation from laying to sitting or standing exacerbated the pain greatly. The headaches got better for awhile.
- I began having vision problems. I noticed that starting around 4pm my vision would become very blurred. If I had a headache it would be even worse. Around 11pm-2am, I would usually get a bit of a reprieve where I would have extremely clear vision, and then it would start to dull again. I wear glasses all the time, but still had these changes daily. By the summer of 2006, my vision was so bad, I could rarely drive anymore, and when my vision wasn’t completely blurred, I suffered from double-vision. I also began to just see shadows and could no longer clearly identify objects unless they were right in front of my face.
August 2006
- The headaches I’d been having became extreme again. I had to take sick-leave from my job as I could no longer handle the pain, I also had extreme difficulty seeing my computer screen in front of myself, and I was suffering from extreme dizziness to the point that I often felt like I would pass out. I no longer felt safe to drive myself to and from work and eventually I was forced to give up my license altogether.
- My mom came across an article about Cushings Disease and after doing research, I took information to my family physician and asked to start testing for this. After the very first blood test, it was pretty clear that cortisol was my problem. I was sent back to my endocrinologist again with the possibility of Cushings as my diagnosis, at which point she drew 2 am/pm bloods. Then she told me that wasn't diagnostic so I did a 24-hour urine and a saliva tests for cortisol, and all of them came back extremely high. My endo refused my calls after these labs were done, and when I finally had a response from her, it was October that she finally put it into writing that Cushings was now mine. Mine to deal with, mine to fight with, I have Cushings Disease. Now I just needed a referral to a neurosurgeon and that alone was a fight.
December 2006
- I FINALLY received my referral to a neurosurgeon! By this point, I truly feel like I was near death. I could barely care for myself any longer. I had been having a hard time sleeping for a long time, staying awake on average 20 hours a day, however by now I was sleeping 22 hours a day. My mom would wake me up to eat and take meds. The rest of my symptoms included:
o Continued weight gain especially around my mid-section
o Continued debilitating headaches
o Dizziness
o Flushed red skin, my face, chest and arms were always bright red in color
o Excessive sweating and hot flashes regardless of environmental temperature
o Swelling across my whole body, I could barely close my eyes and mouth due to swelling,
could no longer wear rings, necklace, watch or bracelets, could not wear normal shoes because of foot swelling
o Total body pain, especially in my lower back
o Extremely high blood pressure, taking two meds and still unable to control it
o Bruising all over my body with the worst being on my arms and abdomen
o Purple striae on my abdomen, forearms and shoulders
o Severe acne on my face
o Extremely blurred vision or double-vision at all times without reprieve
o Nausea or no appetite
o I had some cuts and sores that were open and would not close for the past year
o No menstrual cycle
o Extreme fatigue and muscle weakness to the point that even brushing my teeth and dressing myself became too hard to do
- On December 4th, 2006, I had my first meeting with my neurosurgeon. I walked into his office , sat down beside him at his desk, he put a hand on my knee and said "I can't believe you're still alive!" Based on my scans and labs, he was shocked that I was still among the living. It was determined then that I was much too sick to undergo general anesthesia in order to have a transsphenoidal surgery, and there was also concern of missing some tumor tissue. We agreed that although it would take longer to see results, that gamma knife was my best option. From the latest scan, it was estimated that I had 30-50 microadenomas on my pituitary, and that it was unlikely that any of my pit could have been saved if a traditional surgery was performed. So I was told I would go for gamma knife surgery. On December 7th, 2006 I went for my first round of gamma knife. I received 27Gy during this treatment. I first started to see results about 3 weeks later when my swelling started to resolve slightly. By approx. 2 months post-op I was able to come off one blood pressure medication and by 3 months I was off the second one and have not required any more since then, although at times my blood pressure has been slightly elevated.
April 2008
- Although some symptoms had improved, I all of a sudden began gaining weight again and feeling worse – lab tests showed that my ACTH and cortisol were rising again. I tried Ketoconazole as we hoped that the radiation would continue to work, and with a bit of help from the keto, that I would continue to have good results, however this wasn’t the case and my numbers all continued to get worse.
November 2008
- It was very clear that I was becoming sicker by this point and my neurosurgeon and endocrinologist agreed that it was time for a serious intervention. My CT scan showed a suspicious spot measuring 4mm, and so I was headed for gamma knife again.
December 2008
- December 11th, 2008 I had my second course of gamma knife surgery. The whole pit and sella were targeted at a dose of 35Gy, I was told that this high of a dose has never been given before, and it was enough to kill a heard of horses! It was sure to work!
February 2009
- I finally began seeing my numbers drop and had started to lose a small amount of weight. No other major changes were seen. My thyroid dropped off which was suggestive of the gamma knife working and I began replacing with Levothyroxine.
April 2009
- Cortisol began rising again. Tried Ketoconazole (up to 1200mg/day), Mitotane (up to 3500mg/day) and a combination of the two. I achieved impressive results with lowering my cortisol however my ACTH began to rise, so we eventually aborted the Mitotane and continued with Ketoconazole.
July 2010 - Present
- Started taking Cabergoline and currently am taking 3.0mg three times a week. I have had mixed results on this medication. My cortisol and ACTH have both come down, then gone back up again and I have not really seen any symptoms get better or go away to date.
Sooo... wishing you hadn't asked yet? Well, I guess you didn't, lol.. but if you've read this far, you must be curious!! The above is part of what I sent in the package to neurosurgeons, 11 in total.
With everything that I've tried.. it hasn't worked. When I first was diagnosed and we discussed treatment options, I was told that once I had gamma knife surgery, it wouldn't be an instant fix, but within a year I would be back to my life. I would be back to work, I would be back to school, I would finish my psych degree and would be living life as though nothing had happened. Boy were they WRONG. A year came and went, and as mentioned above, during that first year post-op, I DID have a few improvements and was hopeful when told, "well, maybe another 6 months, it takes time and gamma knife can continue working for up to 10 years".. so I patiently waited. My employer kept calling every 3 months to check on my progress and I kept extending my sick-leave, still hoping. By the time of the second gamma knife, I began losing a bit of hope and soon my employer stopped calling and I was formally "let go." But I continued to fight.
Now, after all the surgeries, and all the meds, I'm still NOT better yet. I finally mustered up the courage to take things into my own hands a little bit. I made the decision that I didn't want my friends and family standing around my grave site saying "well! she just gave up and threw in the towel!".. no, I want them instead to say "she did everything she could! She fought 'til the bitter end!" I want my friends and family to be proud of me. I want my life to have meant something, even if it was just to teach others how to cope with a horrible disease.
1) Dr. Ian McCutcheon - M D Anderson Cancer Center
2) Dr. Daniel Prevedello - OSU Medical Center
3) Dr. Fred Gentili - Toronto Western Hospital
4) Dr. Alfredo Quinones-Hinojosa - Johns Hopkins
5) Dr. Marc R. Mayberg - Swedish
6) Dr. Jho - Allegheny General
7) Dr. Delashaw - OHSU
8) Dr. Edward R. Laws - Brigham and Women's Hospital,
9) Dr. Marvin Bergsneider - Ronald Reagan UCLA Medical Center
10) Dr. Brooke Swearingen - Massachusetts General
3) Dr. Fred Gentili - Toronto Western Hospital
4) Dr. Alfredo Quinones-Hinojosa - Johns Hopkins
5) Dr. Marc R. Mayberg - Swedish
6) Dr. Jho - Allegheny General
7) Dr. Delashaw - OHSU
8) Dr. Edward R. Laws - Brigham and Women's Hospital,
9) Dr. Marvin Bergsneider - Ronald Reagan UCLA Medical Center
10) Dr. Brooke Swearingen - Massachusetts General
11) Dr. William Chandler - U of Michigan
To be honest, I didn't expect much response if any at all. And when I did hear from anyone, I figured they would be saying the same things I've already been told. My neuro also turned me into a case study even. He personally called me at home one Sunday afternoon to ask my permission. He took my case to a National conference and reported back to me stating that everyone at the conference had agreed with his assessment. I later found out from my endo that he also took me to an international conference with the same results. But anyway, I had to find out and ask for myself, so I sent my packages away on October 21th, 2011. I included a cover later, 4 pages of the above history and time line, my last two sets of labs and my MRI disk from May. Then, I sat and waited!
To be honest, I didn't expect much response if any at all. And when I did hear from anyone, I figured they would be saying the same things I've already been told. My neuro also turned me into a case study even. He personally called me at home one Sunday afternoon to ask my permission. He took my case to a National conference and reported back to me stating that everyone at the conference had agreed with his assessment. I later found out from my endo that he also took me to an international conference with the same results. But anyway, I had to find out and ask for myself, so I sent my packages away on October 21th, 2011. I included a cover later, 4 pages of the above history and time line, my last two sets of labs and my MRI disk from May. Then, I sat and waited!
October 28th, one week later, I heard back from Dr. Gentili in Toronto! He emailed me saying that he thought he might be able to help, but that he needed a 3T MRI and that once I have it I should bring it and come see him in office! HOPE! Real HOPE!
November 1st, I received a phone call from the NP at Dr. Quinones' office - Johns Hopkins! She said she just received my package, read through it and that they're interested in helping me. Dr Q (as she called him!) would look over my MRI more thoroughly and I should hear back th/fri. She asked if I had plans to come down there right away and I told her that if Dr. Q felt he could help me, I would certainly be interested in coming. So at this point, I'm still waiting to hear back.
November 2, I received an email from Dr. Brooke Swearingen - Massachusetts General, he asked for my inital MRI and Labs from before treatment, and he's interested!
November 3, email from Dr. Laws in Boston! This one was less exciting and more of what I expected. "Thank you for sending along your clinical notes and MRI scans regarding your difficult situation with Cushing syndrome. It appears that you continue to have elevated cortisol levels despite two episodes of treatment with the gamma knife You have developed the anticipated pituitary insufficiency otherwise. I believe you know how critical it is to make sure that your hormone replacement therapy is accurately and carefully managed. The MRI studies show a secondary empty sella. It is possible, but not certain, that there may be small amounts of pituitary tumor tissue at the base of the sella. Your situation is such that additional radiation therapy is not a reasonable strategy." He went on to tell me about the clinical trials for mifepristone (I have no interest in this, it's "the abortion pill" and much the same as keto) and for Pasireotide, aka SOM230 which I'm VERY interested in!! He said I should try them and if they didn't work, I would need an IPSS and then he would consider surgery. So overall, it was much like what my local neuro has said and what I expected to hear.
Today I saw my endo. I needed a req for the 3T MRI and she was the only way I could get it. Boy was she pissed off! I never consulted her before seeking out another neurosurgeon's help, and she was deeply offended! She started off saying that she had planned to tell me I was fired but once I explained and sucked up, we came to an understanding!! OY! And she ordered the 3T MRI for me! Yeehaw! Part of it was because she thought I was also in the market to replace her, I think since Dr Gentili - the one who wants to new MRI apparently ONLY works with his own endo on cases like this. I don't know. But in the end, it worked out. I told her that I contacted them all on a whim, not really expecting to get such a response. I told her that this is MY LIFE and I don't want to end up on my death bed with people saying "well, she didn't even try!".. I want everyone to know that I've done everything possible and I told her that if every neuro says "NO!" to me, then my only choice left will be a BLA down the road, but I refuse to go for a BLA until I've exhausted every other option first. I also told her that I KNOW I need to try keto again because I'm too high right now, so that pleased her since she wasn't agreeable to me quitting this past time. And then once we had our little chat, and I apologized and sucked up, I asked if she would still be my endo even if I did get somebody to help me, and she said that so long as I kept her in the loop from now on, she would still be my endo.. and this is good. For all the bumps I've had with her along the way, she is a thousand times better than the endo I left before her, and she's also better than all the endos I hear about. I have a lot of respect for her, and she's been very willing to let me try different things and she's accepted my refusal for a BLA and helped me anyway, even though if she had her way, I would have had a BLA already. So.. I think it's a WIN for team Beth!
So anyway, that's the gist of it! Through this blog, I plan to keep track of things as they progress. Mostly for my own knowledge, but also for anyone interested.
Please feel free to comment and ask questions - I really feel like I don't have anything to hide and I hope somebody will learn from my experiences. I also hope that my journey may save somebody else from experiencing the same things.
This is MY LIFE - I'm going to fight for it!
So anyway, that's the gist of it! Through this blog, I plan to keep track of things as they progress. Mostly for my own knowledge, but also for anyone interested.
Please feel free to comment and ask questions - I really feel like I don't have anything to hide and I hope somebody will learn from my experiences. I also hope that my journey may save somebody else from experiencing the same things.
This is MY LIFE - I'm going to fight for it!
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