My husband is 36 and was diagnoised with CML in October of 2006. He's been on Gleevec ever since and has basically all the bad side affects you can get. This has been a issue for him all along but within the past year it's just been unbearable for him. We went and seen a different dr. over the summer to find out information on a BMT and during that visit we learned that his sister has been a match ever since his family was tested back in November of 2006. Needless to say the hospital that we were going to never cared to share that info. with us. He had all sorts of blood tests done over the summer because the dr. wanted to actually make sure that it was the Gleevec that was causing him the issues he's having. Everything came back fine but the dr. doesn't want to do a BMT because the Gleevec is keeping him stable. Because he is so yoing and we were told that it's rare that a young person gets this and that people who are usually in their 50's get it the dr.'s just don't believe it's the Gleevec that's causing him all the problems he's having. Nobody cares to listen when we tell them he never had issues before he was diagnoised with this. Basically our only option right now is for him to take a medical leave of absence from work for a little while and possibility switch medicines. I'm trying to find out if anyone was on Gleevec for this length of time and switched to a different medicine that helped with the side affects. We were told that if he does switch medicines and they don't work that if he switched back to Gleevec there is a possibility that Gleevec may not work again which concerns us. We have 3 boys and everyday it bothers him that he can't enjoy life with them like he would want to. Any information would be greatly appreciated! Thank -you!
Posted 27 December 2010 - 09:35 AM
Posted 27 December 2010 - 09:59 AM
Hi, Shari. . .
You should do some reading on BMTs before you decide that it's the thing to do. The statistics are not very good, so it really should only be used as a last resort. The second line of medications (which have now become first line) show very good response for lots of people. I can't speak to side effects, as I'm still on Gleevec, though I'll be switching to Sprycel soon.
The more research you can do on all of your options will make it easier to come to whatever decision you finally make. You can learn a lot from reading Trey's Blog.
Posted 27 December 2010 - 10:10 AM
Many here struggle with side effects, but almost no one would choose a BMT to reduce the side effects. Fatigue is the number one quality-of-life issue people have with Gleevec, so it is almost certainly the drug causing it. A drug switch might help reduce, or at least change, the side effects. A BMT often causes autoimmune problems where the new blood cells attack the body and cause significant issues (pain), which cannot be reversed, so these problems will last a lifetime. And the intense chemotherapy and radiation can sometimes cause serious secondary issues. And the odds of not surviving a BMT are significant enough that it should not be used unless absolutely necessary.
A drug change is a good option. It is NOT true that switching to another drug would mean he could not switch back to Gleevec some day and have it work the same way as before. And there are new drugs coming along that should reduce the side effects, such as Bosutinib.
Posted 27 December 2010 - 03:33 PM
Hi Shari - I am the same age as your husband and have little ones as well so i completely get it. I also have a sibling match. As Trey mentioned, the BMT is irreversible. Once you go that road, there is no turning back. If you research and talk to your doctors about it, you will see that many of things one could expect after a BMT are much more unpleasant than the side effects of TKI drugs. True the BMT might be a cure and some people completely recover - but many do not. Of the ones who survive, many deal with chronic graft vs. host disease that can be anywhere from a minor annoyance to life threatening and the treatment options for that are not very good. I have decided that I will try every drug option available before I go the BMT route and I'm hoping I never have to.
This CML/cancer thing sucks, and I also feel down sometimes about not being able to be the active dad I wanted to be. I do what I can and I try to accept that I am where I am for whatever reason this is the way things are. I truly believe my kids are happier having tired daddy around rather than no daddy around.
Best of luck, I hope he finds a treatment plan that works well for him.
Posted 31 December 2010 - 08:11 AM
The BMT scares us both. We have researched information about it but I didn't have a clue that there was meds. out there that might have less side affects then Gleevec. We were actually told the opposite about the other meds. and that's what his hesitation is with switching. I kinda just let him make the decision I just put my thoughts out there. Thank you all for your responses!
Posted 31 December 2010 - 08:23 AM
Thank you for all your information! After reading all your information I just might encourage him to read more about changing meds. I know there are alot of issues with a BMT and the dr.'s have not explained all the options of switching meds because they just feel that Gleevec is not causing him the issues. We just need a dr. that understands this and is willing to talk to us about these other medications. Since we have a copy of all his medical records from the time he was diagnoised, I think I'm just going to go to all his follow up appointments and set these aside for his next appt. Then we can point out to the dr. that he's had issues with this from the beginning.
Posted 31 December 2010 - 08:34 AM
We have researched the BMT and we both know it would be a last resort. We had no idea there was other meds. that might have less side affects. When we go to the dr.'s it just gets very frustrating when they just brush off the complaints that he has with the meds. It's so great the positive outlook you have.That will take you a long way in life! The kids are definitely better with him here with the fatigue then not being here at all. Your right on that! Good luck to you and your family! Life is a precious gift!
Posted 01 January 2011 - 12:25 PM
It's very strange that the doctors have not talked about the new drugs, particularly since there have been a lot of studies lately touting the improved response rates from the new drugs. Gleevec is coming off patent in a couple of years, when it does, the price is going to drop drastically. The drug companies are aggressively trying to find replacement drugs for Gleevec that will still cost a premium. In order to do that, the new drugs have to work better. Studies are showing that while Gleevec is still a very good drug, Tasigna and Sprycel are both looking better because they get the patient into a deeper response faster than Gleevec. The drugs used to be only approved for use as second line, after Gleevec failed or the patient could not tolerate the side effects. They are now approved for first line use, so the patient never has to take Gleevec if the doctor doesn't want to prescribe it. Some doctors are still going with Gleevec first and see what happens. The idea is they have more long term data and know what to expect. But many doctors are prescribing the other two right out of the gate. Most people say the new drugs have less side effects after an initial period where the side effects are more prevalent.
I would go to next visit and ask about other drug options. If for some reason when you ask about the newer drugs they seem uninformed, that might be a warning sign that perhaps they are not up to date on the best treatment options for this disease and you might wnt to seek out another opinion from a doctor with more experience treating CML. The reality is he is going to have side effects, most notably fatigue. that one seems to be consistent with all the drugs. But for most it is not debilitating and there are ways to deal with the others. YOu might be interested in reading this thread where we had some discussion on what people do to help with their side effects. Things ranging from diet, to exercise, to time of day pill is taken. Taking with food, without food all have different results for different people.
Posted 16 January 2011 - 10:40 PM
I don't know if you'll get this message or not. I am such a computer idiot .If you don,t get this I will get on my broom and find you. I just got a new broom at wal-mart it works great. I was wondering how you are doing on the sprycel? I think I am adjusting to it pretty well but I still get those damn whoops (darn headaches). Or it might be the 4 feet of snow in my driveway,or the temp, going down to 19 tonight. I got a new printer, scanner, fax machine for christmas so maybe I can put some pictures up. Ha if I ever learn how to use it!
Posted 16 January 2011 - 11:29 PM
Hi, Billie. . .
I wish we had your snow here. . .though it sounds like the mountains are getting a bunch, and we might see some in town tomorrow.
I just took my first Sprycel pill tonight. My doc had me start with a half-dose, and I took a 4-day break from Gleevec. So far. . .no side effects. Maybe a tiny twinge of headache. . .but nothing worth noting. I've decided to try to cut back on salt intake and alcohol for the first week or so. . .dang. . .I LOVE salty foods. . .and I do like my wine in the evening. Oh well. Now the hard part is figuring out how to schedule weekly CBCs and EKGs while working full time. The cancer center is way across on the east side of Denver, and the hospital where I do the EKGs is way over on the west side of town. I guess I'll just have to take some annual leave half-days. . .which is a real pain. It's also hard to come up with new and boring answers to the kids' questions about why I'm out of the classroom.
Looks like you are getting your computer skills worked out just fine. . .good luck with all of that new equipment!! Sounds like Santa was good to you! Although maybe he should have gotten you a snowblower, instead!!
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