I went to the Hammersmith yesterday. After 20 months on 400mg Glivec my PCR result has dropped steadily to 0.002%. The doc suggested that this was an order better than was necessary and that I could go down to 300mg Glivec with perhaps a small increase in PCR and reduce the side effects.
Has anyone any comments/experience of this?
John
Hi John,
So glad to note you are responding so very well on Glivec.
My understanding is that the minimum dosage required would
at 400mg. Do be careful.
take care.
daniel
I would be really interested if there are any long term studies on this as the companies would probably not wnat them done as reduces their income. I'd like to reduce the level if that was safe as i've done pretty well so far but would prefer to reduce drug use even by a small amount (and save NHS coffers).
They would also have to produce a <400mg tablet..
vicki
I was told that others have reduced to 300mg successfully, but that it was my decision. PCR test frequency would be 6 weeks instead of the current 3 months until they were sure that the results were acceptable.
I am inclined to try it, but thought I would sound out the forum.
John
susan dickerson
Hi can fully understand why you should want to reduce the dose of Imatinib and I'm glad that I'm not the only person that still has bad side effects on gleevic. Despite being on 400mg as I have been for 5+ years and being in MMR the side effects are just a matter of being told at clinic that my response is fantastic and that I'm coping with them. I still take them with my main meal but they affect my digestion with either vomiting or heartburn or running to the loo. I have tried taking them at different times of the day but symtoms are worse. Cramps,muscle and joint pains if I take pain killers to help, the sickness is worse so I try swimming and flaxseed oil and aromatherapy. Certain foods make the sickness worse and I have just been in hospital for day surgery from which I needed to take paracetemol and ibrufen every four hours and I have been so sick that I had to stop taking the gleevic a few days to get the pain killers to give me some relief, but now one week later I am back on the gleevic feeling very sick,I'm cutting down on the pain killers and using a heat pad for pain relief on my stomach, so yes we might be thankful of the fantastic response but it seems that the side effects are what we have to live with. Although I keep bumping into people who can take the gleevic on an empty stomach and have no side effects at all. I can be thankful for being alive 9 years on and dream on about having no side effects sue
Hi John
As you are at Hammersmith and they have said they have others on this reduced dose and also, more importantly, that they will monitor you by pcr more frequently... then I would say that you might consider this seriously.
The lab at HH is one of the best in the world and they would not suggest a reduction in dose without good cause.
If you think that it will reduce your side effects and you are confident that they will monitor you more frequently then maybe it is worth the risk?
At the moment the standard minimum dose is 400mg but we are all individuals and maybe some people can and do maintain molecular responses with slightly lower doses.
Good luck,
Sandy
Sandy, I do have confidence in Hammersmith and I am considering this seriously. I don't think my side-effects are nearly as bad as some, for instance Sue above, but it would be nice to reduce them.
Sue, I take my 400mg Glivec by splitting the pill in two and taking half after breakfast and half after evening meal. That helped a lot. It raised an eyebrow at Hammersmith, but I have been doing it for 18 months and my results are very good, so clearly it works.
I understand that some people drop Glivec altogether for a period, for example for pregnancy, and then re-start with no adverse effects, so perhaps the risk is small.
I have a couple of months of 400mg pills left, so I shall try reducing after that.
In due course, when I have some data on how it is working, I shall post it on here.
I've had a bit of a rough week, but I'm going skiing on Sunday for two weeks.
Just as an aside, four of us went sking at New Year. Our combined age was 261 and between us we had:
4 replacement knees
2 heart bypasses
1 replacement hip
1 collapsed lung
1 spinal osteoporosis
1 CML
We covered 265km distance and 35km vertical.
The show ain't over 'till the fat lady sings.
EDIT: I am not going skiing on Sunday. We have delayed until Tuesday because I don't feel so good! CML has got the better of me - temporarily. The Austrian weather forecast was poor anyway.
John
Better late than never i suppose......
I found this interesting study comparing outcomes for 200mg, 300mg and 400mg doses of Imatinib over many years.
https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1349-7006.2012.02253.x
The study is a few years old, but some interesting findings, even though low body weight.
Sue - I don't know how you've lasted this long. I was miserably sick every day I took Gleevec, for two years. I was continually told "most people tolerate the drug very well." On what planet????!!! I would ask. I don't know whether it was worse or not, but I also looked so horrible (toad eyes, cadaverous white skin, fallen face). The third component, not surprisingly, was anxiety and depression. When Gleevec did a tap dance on my kidneys, I switched to Sprycel. The difference in how I felt physically, mentally, and how I looked was night and day. Not the same for everybody, but after what you've been through, I would say you could give it a try and see if a different TKI would decrease the misery.
