Side effects are too much for me
Posted 01 December 2014 - 08:23 AM
Posted 01 December 2014 - 08:38 AM
Posted 01 December 2014 - 09:16 AM
Posted 01 December 2014 - 09:37 AM
Posted 01 December 2014 - 09:52 AM
The 100mg Sprycel is probably too high a dosage for you, especially at this point. I would ask the Onc to lower the dosage at least to 70mg, which is more the standard dosage now. Or switch to Tasigna.
Posted 01 December 2014 - 10:02 AM
Posted 01 December 2014 - 04:57 PM
Posted 09 December 2014 - 01:35 PM
Did you start on Sprycel after your diagnosis or did you begin with Gleevec which at one time was the start drug? My daughter was diagnosed 5 and a half years ago and was in complete molecular remission in 5 months. Her side effects seem less than the other drugs. However, currently she is getting such bad and painful eyebleeds that a test will be given to see if she is slowly metabolizing the Gleevec.
Dr. Druker responded to an e-mail that I sent him and he wouldn't change the drug. Robyn will take the blood test which will be sent to a special lab . If the results show that Dr. Druker is right, he will recommend to her oncologist to drop the doseage.
I have to add that I researched all of the other drugs and find that for my daughter the only one that she could take is Gleevec. The other would conflict with a heart condition that she has.
In any case, you, like my daughter are in remission, and it does make sense to stick with the drug and adjust the doseage.
Posted 10 December 2014 - 02:51 PM
Hi Kitty: I hope you feel better with a lower dose of the Sprycel. All these TKI drugs kick our butts in one way or another. I am on Gleevec for 14 years now, and I still get side effects. I just try to look at the alternative if I stopped taking it. I have developed a lot of other serious issues this past year, and have not cut back on my dose of Gleevec yet. I want to be sure what is causing what with me. I am on 400mg of Gleevec, but I want to cut back to 200 at some point.
I was diagnosed on Christmas of 1998, and I thought for sure it was my last Christmas with family and friends. I have counted each Christmas since that day, and this will be Christmas #16 that I am still here.
It takes longer for some than others to start feeling better.
I just Thank God for each day.
Posted 23 December 2014 - 09:35 AM
Posted 23 December 2014 - 09:56 AM
Posted 23 December 2014 - 10:05 AM
So your Onc will not lower your Sprycel dosage, but will switch you to Gleevec? That is very odd. I would get a new Onc. Liking her is not a reason to stay with your Onc. Find a grumpy codger who will do the right thing for you.
Since you have achieved MMR it would be reasonable to lower dosage. While 100mg Sprycel is used as a starting dosage, it is very often reduced if there are significant side effects. Most patients end up on 70mg or lower. Especially with your financial situation, the lower dose Sprycel makes good sense. Find an Onc who will do that. Some patients do self lowering by getting the pills in small dosage and taking what is needed.
Posted 23 December 2014 - 10:37 AM
My onc was reluctant to keep me on 50mg of Sprycel. I had been on 400 mg of Gleevec for 7 months and had horrible side effects. When I moved to another state and started to see this onc, she agreed to a "vacation" from Gleevec for a few weeks, but wanted me to take 100mg of Sprycel after 1 week on 50mg. Because my PCR test showed continued improvement( and because of the knowledge I gained from this board), I pushed to remain on 50 mg. At her insistence I did go up to 70mg for a couple weeks, but went back down to 50mg when I got a weird rash on my face.
Last month I was PCRU and am continuing on 50mg. I have some annoying side effects, but they usually come and go. If my PCR test had started to go in the other direction, I would have had to increase my dosage.
It sounds as though you might be a good candidate for a lowered dose of Sprycel. We're all different, so nobody can guarantee good results, but I would think it's worth a try.
Good luck, and keep us posted on how you're doing.
Dx April 2013, FISH 62, BMB not enough for PCR test; put on Gleevec 400;
August 2013, FISH 8.7;
Oct 2013, FISH 5.6
Stopped Gleevec Nov 2013 for 6 weeks due to terrible side effects; Jan 2014 started Sprycel 50mg;
Feb, 2014 PCR 6.8
May,2014 PCR .149
Aug, 2014 PCR .015
Nov. 2014 PCRU
March, 2016 went down to 40mg Sprycel
Oct. 2016 stopped Sprycel for a couple weeks due to concern about shortness of breath. Echo showed mild PAH.
Nov 1 2016 resumed Sprycel 20 mg daily
Dec 2016 PCRU
March 2017 PCR 0.020
May 2017 PCRU
Sept 2017 PCRU
Dec 2017 PCRU
Posted 23 December 2014 - 12:46 PM
I think that it would be a good idea to call Novartis and explain your situation. Novartis has given patients Gleevec without charging.
Novartis is located in East Hanover, New Jersey. Try calling and let us know what happens. You might do better on Gleevec.
Posted 07 January 2015 - 07:34 PM
Posted 08 January 2015 - 01:09 PM
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users