What is your dosage of Gleevec? I've had CML for 7 years and am on 600 mg of Gleevec. I am wondering, since I've been in "remission" for maybe 3 years now, if my dosage can be reduced? I have trouble in "waves" of nausea, combat the fatigue...would be nice to reduce the dosage if possible. What do other people do??? Thanks so much!!! Donna
What is your Gleevec dosage???
Posted 04 July 2011 - 12:05 PM
Hi....I have had cml for six years. I started on 400 and still take it. Several months back, I started taking four 100's a day....two after breakfast and two after dinner. It did help with the deep morning fatigue. Before I changed, I could barely walk from my car into the building. (I only work part time since the cml.). I still have trouble sleeping through the night due to a sore stomach and aches......that gets me down! I would think you would be able to take less gleevec.....time to talk to your doc. The smaller pills are easier on the stomach.......Lala
Posted 04 July 2011 - 12:59 PM
Standard dose is 400 mg. If you've been PCRU for awhile, it seems appropriate to talk to your doc about reducing to 400 mg. This said without having any background on why you have been taking 600 mg. Your doc must have had a reason to start you (and have you continue) on that dose.
Posted 04 July 2011 - 06:51 PM
Hi: I agee with what Marnie said. There had to be a reason to start you on 600mg instead of the standard 400mg a day. I have been taking 400mg. a day since Oct of 2000 when I started Gleevec. I have had CML for 13 years, and been PCRU for 8 years. I still take the 400mg. Did you by any chance switch doctors in the process, and he just did not change your regimen of 600mg. I think you would feel better on a lower dose, and especially since you achieved PCRU. You could also split the dose up and get 100mg. tablets to spread out through the course of the day. Talk to your doctor about it.
Posted 04 July 2011 - 08:05 PM
Thanks so much, everyone! Yes, I did have a change in doctors about halfway through. My first one was actually part of the clinical trials docs. He was great. He returned to academics to educate other docs. My doc since then is fine but never seems as knowledgeable as my first one. I sent him an email tonight to ask about lowering my dosage. He has had me on it for maybe 3 years. I've struggled with nausea and fatigue the whole time, but more since the increase in dosage. I've always taken the 100 mg pills in divided doses. I know I had a difficult time achieving and maintaining remission, but I hope he will consider backing off the dosage. Thanks again so much for your help. Trey had suggested this option to me a few weeks ago. Since my workup for other causes of nausea were all normal, I think it's time to talk to my doc! Thanks! Donna
Posted 04 July 2011 - 10:01 PM
Hi Donna: I kind of thought that might be the case. The nausea is a definite on how much of the Gleevec your taking. After all these years, I find if I grab a quick light breakfast before my Gleevec I have had some nausea. I have to have a decent meal with my pill.
I actually had to switch doctors last year because my regular Oncologist who was treating me from day one retired. They brought in a new doctor, who was not a specialist in CML, and he refused to listen to what I had to say. I left him and moved on. Now my new doctor is willing to follow along with how my Original doctor was treating me. So far so good.
I hope you can reduce to 400mg. I am sure you will feel better. Hope you had a nice 4th of July.
Posted 05 July 2011 - 06:07 AM
I currently take 400mg per day. I have heard/read that there is a line of thinking that says, what ever dosage it took you to get to MMR, that is the dose you should stay on. Now that is not to say there aren't differing points of view and that some doctors will go one way while others will go another. It is worth having the conversation. Ultimately it is your choice. I would suspect some doctors would rather have you switch to another drug. Again, I think it depends who you are working worth.
Posted 05 July 2011 - 08:28 AM
I am presently on 400mg of Gleevec for my CEL. Studies have shown that 100mg is sufficient to maintain drug levels in the blood but my Onc wants to keep me at 400mg since I have minimal side-effects and tolerate it well. I was diagnosed in late March/early April 2010. My latest BMB/Aspitate showed no disease in my marrow and I have been FISH negative since August 2010.
Posted 05 July 2011 - 09:01 AM
I take 300 mg. but I have a feeling I may have to increase or change drugs when I go back.
Posted 06 July 2011 - 11:04 AM
You will need to monitor your BMB or PB PCR if you want to lower your dosage. I know some who is having 400 mg and lowered to 300 mg without any issue. Then again need to get your doc blessing and monitoring.
Posted 06 July 2011 - 11:41 AM
Tenderheart, I have been on 300 mg. of Gleevec for over 2 years. I was on
400 mg. only a short time before low counts, which I still suffer from,
were a problem. I achieved MMR this year, so the amount is working.
Good luck in persuading your onc. to lower your dosage.
Posted 07 July 2011 - 06:29 PM
Well, my oncology/hematology doctor answered my email: "It would be best to stay on the current dosage because if this causes a genetic relapse that may also impart genetic resistance if we try to go back up on the Gleevec. That may not occur and there really is no way to know if that might happen."
Somehow I feel it is a non-answer. So, I'll stay on the nausea meds and just go from there.
Thanks for all your help and comments!!! Donna
Posted 07 July 2011 - 07:40 PM
I'll be asking my hem the same question when I see her next week. Not that I'm even close to asking to reduce my dose yet (approaching the 5 month mark) but I'm a little over the side effects right now and it would be something to look forward to. I'm on 600mg too. There are plenty of studies that show that higher doses give a faster response but that is not so relevant to you.
There was an interesting discussion on the Australian equivalent of this site:
The OP in this discussion was more in your camp where side effects sucked. She ended up dropping the dose down to 200mg and a year later still has MMR.
One of the posters was saying that they're doing some research (Dr Hughes in Adelaide) to see if the higher dose would give a deeper response and allow more time off the drug - very relevant to pregnancy but also the idea that we may be able to take drug holidays is also being considered...mmmm holidays
The guy who is on this study also posted that he could drop his dose from 600 to 400 if he wanted to and his treating doc is THE CML expert in Australia.
Dx Dec 2010 @37
2x IVF egg collection
Glivec 600 & 800mg
PCRU March 2012
Unsuccessful pregnancy attempt - relapsed, 3 months interferon (intron A), bad side effects from interferon
Nilotinib 600mg Oct 2012
PCRU April 2013, 2 years MR4.5 mostly PCRU with a few blips
April 2015 stopped again for pregnancy attempt (donor egg), pregnant first transfer, 0.110 at 10wks, 2.1 at 14wks, 4.2 at 16wks, started interferon, slow dose increase to 25MIU per wk, at full dose PCR< 1 for remainder of pregnancy
Healthy baby girl Jan 2016, breastfed one month
Nilotinib 600mg Feb 2016
MMR May 2016
PCRU Feb 2017
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