Glivec side effects

Hi Bill

I was dx Feb 2005. Started on 400mgs then increased to 800mgs. I know what you mean about the side effects!!!!! Not nice. I am now on Dasatinib Because i became Glivec resistant. I have no side effects with this drug at all. Which i am glad because when i was on Glivec every day was different. Nausea , Joint pain , Fluid and oh yes bad cramp. Its all part of the drug i'm affraid.

Hope you feel better soon.

This site is a god send. I needed it so much when i was dx.

Let us know how you get on.

Elaine

Thanks very much for sharing your experiences with me. Any more are very welcome. I will be having a blood test this Thursday so we will see how the reduced dose has performed. I came accross this link to some good informative videos, it is so reasurring to know research and development is going on all the time

http://www.medicalnewstoday.com/sections/lymphoma-leukemia/videos.php

best regards

Bill Yellowley

Hi Bill,

Yes as was mentioned results do come at a price!
But survival can't be measured in terms of side effects. For the price we pay, it's a bargain!!!
I was dx in May 2003 at the age of 58.
I was first on Roferon, and could not tolerate the side effects.(Hospitalised for a month)
I was placed on Gleevec in January 2004. At first it was a 400g dose but later increased to 600 gm as I hit a plateau.
This was reduced to 400 gm on reaching undetectable QPCR results.
The side effects vary from person to person as you by now have realised. I experienced severe eye bleeds and fatigue.This has virtually dissapeared and only swollen eyelids are a daily occurence.
Unfortunately my run of undetectable results ended in January 2008 when my QPCR showed up 7 PH+ cells. Although this is a tiny percentage amount, it is still a cause for concern.(For me, not my Docter) So I will be having another QPCR in April.
This window of hope that the treatment opened for me meant that I have been around to see my youngest grandchild born. She turned 2 years old in February.

So all the side effects pale into insignificance compared to the joys that we can still experience daily.

Basil

Hi Kat
Thanks very much for taking the time to reply. I'm being treated in Newcastle upon Tyne. How about you? How long did it take for your pains to subside? They really grind me down and I worry about the future but as people have said its far better than the alternative isn't it. I have been on the reduced dose for 4 days now following a week long break. I feel the symptoms coming back.... hoping they wont be so severe.

Bill

Thanks Rio
I get through it by imagining the pain I feel is working on the abnormal cells, it still hurts but feels better somehow. When were you diagnosed?

Bill

Hi Bill,
welcome to this site and I hope you find it supportive.
the side effects you describe are common, but they do wear off with time. I had leg aches/pain/cramp for the first 3 months but like others have said they suddenly stopped... apart from sudden cramps that is. but I found these happened if I allowed my muscles to get too cold. Warmth and heat pack are really handy for aches and cramps in particular.
Good luck with your treatment... you are with one of the best CML doctors in my opinion.
Sandy

Thanks Elaine

How long were you on Glivec for before you became resistant? And how long did your side effects last?

Bill

Hi Bill,
My comment to Basil about the dose reduction was only in the context of him having acheived a molecular response. What the CML doctors in Italy were saying was that to reduce doses for this reasons... i.e maybe as a cost saving or to reduce side effects ... is not recommended if the patient is to continue with low molecular levels.
To get to a 3 or 4 log reduction with any of the TKI's like Glivec/Sprycel or Tasigna is the goal. To stay there over the long term is the challenge!

As I have commented to Elaine in anther post on this page, the most effective way to sustain low levels of molecular remission is to maintain the dose that got you there.... side effects permitting.

For some of us (using Glivec as the example) this dose may be 400mg, 600mg or 800mg.

In any one individual there are factors that can effect the plasma levels of the active drug.
These may be issues with drug adherence i.e taking the right dose consistantly and not missing doses on a regular basis.... or drug to drug interactions which affect bio-availability, as does food and drink interactions such as grapefruit juice etc.... or the individual pharmocokinetic profile of a patient.

So if a patient has already found the level of the drug which will get them, over time, from cytogenetic remission to molecular remission (3 or 4 log reduction from the level at diagnosis) ... and note that this may take up to and over 12 months... then they should keep with that dose as long as it maintains that level of molecular remission.

If a patient shows signs of losing their response on the molecular level then the doctor concerned should consider why this may be happening. It is not always caused by a mutation or further chromosomal abnormalities.

It may be that as time goes on people begin to regularly miss a few doses, or may just forget to take the drug (again not just one dose here and there but on a regular basis).

Adherence to long term therapy is quite challenging for patients, especially if there are side effects.
Drug holidays, if taken on a regular basis, are inevitably going to effect our responses to these drugs because the way they work is to do with maintaining a consistant plasma level (at or above 1000 ng/ml)of the drug.

Over the next few weeks... and when I have more time.... I will be writing a synopsis of the presentation I took part in during the EBMT meeting last weekend in Florence.

'Targeted therapy in CML:improving adherence, improving outcomes'

I hope to get permission from the doctors concerned to reproduce some of their slides on this site.

Meanwhile please do not worry about losing your response during this period of dose reduction. You really need to find the right dose that is effective and tolerable for you as an individual and this does take some time.
best wishes,

Sandy