Hi everyone -
I'm in my late 30s, from the United States, married (no kids, no plans to) and have just this month been diagnosed with CML (chronic phase). I've already gone through the initial freakout stage (I think!) but I still have some questions which I hope can be answered by those who have gone down this path before.
I've been on Tasigna for about 10 days now. The only real side effect I'm feeling is a painful stiffness in my upper back and shoulders, and a sharp muscle or joint pain in my hips and right buttock when I walk or get up/down from a seated position. I can barely shuffle 100 yards to the garden or the mailbox before I need to sit down from the pain and discomfort, and any movement during the night immediately wakes me up due to the back pain. I'm also currently taking hydroxyurea and allopurinol to help reduce my white blood cell counts (from a high of 196k last week - 105k last test) as well as iron pills.
My questions:
1. I've read that the muscle/joint paint side effects of Tasigna generally wear off after about 12 weeks - has that been the case for most of you? And do you take anything to help with the muscle/joint pain besides Tylenol?
2. I vaguely understand that there is a "leukemic count" I'm support to keep track of, and try to get it down by a factor of 10 and then a factor of 100, but I'm unclear on what that number actual is. Viewing my pathology reports from my bone marrow biopsy it says "ABNORMAL dual fusion signals patterns were observed in 94.5% of the cells". Is that my number (94.5), or am I looking for something else? I don't see anything that specifically refers to a BCR/ABL number. If that is my number, is my goal then to get to 9.45% in 3 months, and then 0.945% in 12 months?
3. Generally wondering how CML affects people who led fairly vigorous/active lives before diagnosis? I went from climbing fourteeners last summer to now barely being able to walk for 15 minutes. Is hiking/climbing/kayaking still in the cards for me or should I start looking for less strenuous hobbies?
4. Re: Tasigna specifically... I travel a lot overseas, and I'm wondering how people manage their dosing schedules when you've got to deal with a 6 hour time difference. Do you gradually bump it up by like 30 minutes each day until you're on the new time zone, or do you rigorously stick to your original time zone schedule and just wake up in the middle of every night to dose? Also... any problems bringing Tasigna through airports/customs? And what about having to keep it at 77 degrees F at all times... what if I'm in a place with no air conditioning, or if I'm camped out for a few nights where the temps can dip to around 40 at night and 85-90 during the day?
5. How should I respond to the question everyone inevitably asks me: "How many years do you have?" I keep reading that a normal lifespan is the general expectation, but since the median diagnosis age is 65, doesn't that mean that just living another 10 years or so is considered a "normal lifespan"? What about people diagnosed in their late 30s? Should I expect to reach retirement age?
6. I've never really had to deal with health insurance before now. So far I have to say the coverage has been pretty great, and Tasigna is 100% free. But I'm wondering what should I expect down the road... how far have fellow American CML'ers seen their insurance premiums rise post diagnosis vs. pre? These pills apparently cost $6,000 a month if you're uninsured, so I'm guessing my rates are going to go sky high pretty soon, I just don't know what to expect. Right now I'm paying $290/month... should I expect this to double or triple by next year?
7. From time to time (even years before I was diagnosed) I get a very dull stomach pain, which I've always called my "ulcer" but my GP has always said is nothing to worry about. It generally hits when I have an empty stomach - so in the past I would just snack on something and it would usually go away, or if it lasted more than 12 hours I would take just 1 omeprazole and 9 times out of 10 it would go away. But now with Tasigna I've got these 3-hour fasting windows in the morning and evening, and omeprazole is specifically forbidden as it interacts with Tasigna. Just wondering if anyone else has similar issues and has found a Tasigna-friendly alternative to omeprazole.
Thank you everyone for your time and assistance!