A challenge was put out to get people blogging and raising awareness for Cushings, so I thought it was a really good time to actually get busy here and post an update.
Since I last wrote, quite a bit has happened. Well, relatively speaking that is! My numbers WERE starting to look good after I increased the caber to 3.0mg 3 times a week and I was even able to pee a normal pee! So very exciting, but like with everything else in my life, it was also short lived. My numbers started to go up again back in January and they've slowly been on the rise since. At my last appt my endo told me that if my numbers went up we would look seriously into getting the new drug, SOM230, aka Pasireotide. Well, I wasn't feeling good in February and actually thought I was low, so I went in to test and instead of being low, I was running really high again. I panicked and my endo just told me to be patient, so I gave it a bit of time then tested again in March and I just keep going higher. I even did two 24hr urines (my most hated tested) a week apart and my cortisol jumped 100 pts from one week to the next. :( I got a copy of my blood labs and it showed my cortisol up, ACTH up, thyroid low and blood sugar up.. so I called in because I was not going to wait another month and a half for my scheduled appt and I got in to see her last week. She agreed that things were not on the right track anymore. :(
The Plan now is to get SOM230. We thought we could get it fairly easily, but somebody gave us the wrong info so I'll have to apply through "Compassionate Use" which from my understanding simply means that you must apply to the government for special permission to use a drug that's not available here yet. The fact that it's been approved overseas will really help my chances, and I can also prove that I've had two surgeries, tried almost a year of Mitotane, tried ketoconazole many times and now I'm coming up almost 2 year on Cabergoline and none of them have been long-lasting cures. So anyway, my endo nurse started the paper work already for me and they just needed to also know my A1C (the biggest side effect of the med is raising BS) and they also needed a current EKG which I rushed to get done - and the QT Prolongation is what they were looking for specifically and apparently mine was normal! I'm hoping very much that this means I will have an easy time getting this drug because I need it badly.
In the meantime waiting for SOM to come through - I've started metformin. My sugar has been creeping up slowly and it's becoming something we can't really ignore anymore. You have to admit that I've been very lucky in this regard. One of the Hallmark symptoms of Cushings is high blood sugar and for almost 8 years I've avoided it. My hatred for sweet foods and many carbs has probably helped me a lot! Now though my endo said if she just looked at my A1C she would say I'm diabetic, although from the bit of daily testing that I've done, it hasn't looked too bad. But because of trying to get SOM230, I really can't afford to have messed up BS going into it considering what it seems to do on it's own!! I've started with just 1/2 of a metformin pill once a day and will slowly work my way up on it. As soon as SOM comes though, I will stop so that we can see what the new drug does to my BS on it's own. I am also going to push the caber past the max dose. Up until now I've been taking 3.0mg 3 times a week, and this past friday, I took my first dose of 3.5mg and will keep it at 3.5 X 3/week for a little while and move it up again after that. She said to aim for 12mg/week and stop there but I'm hoping SOM comes before that! Once I see how the metformin goes, I'll also consider adding back keto again. As much as I hate it, the "start-up" effect of quickly bringing cortisol down can't be denied, so to just shock my cortisol and scare it down will be good for me. :/
And now I wait.. just anxiously wait. I need this new drug to come fast and more than that, I need it to WORK! I know surgery is always an option down the road for me.. but I'm really not ready for that. I just need these meds to WORK!!!
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!
