I have now put on over 20lbs since being on Glivec (July 07). I can just about cope with this but am worried that it will just keep piling on. Has anyone else put on weight, how much and did it eventually stop???
Thanks Donna x
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Weight Gain
Hi Donna
I started on Glivec in January 05 and put on a little weight (probably about 10lbs) but I also found I looked very 'bloated'. Eventually (after about a year), things settled down and I am now back to pretty much my usual weight and I no longer look puffy faced! However, I am now off Glivec and on Interferon, in preparation for (hopefully) pregnancy.
Hope everyone is doing ok!
Anna
Hi Donna
I don't know if this applies to you but I have found I am not as active as I used to be so don't burn off as many calories.
I don't know if it is the CML or the Glivec that makes me tired but I have gone from being very active and sporty to much less so although I do still exercise; it helps with the fatigue.
In order to stop putting on weight I have had to adjust the amount that I eat (which is a major hardship as I am a real foody).
I hope this will be the same for you rather than a side effect of the drug as it allows you to control your weight rather than it being out of your hands. Think of the few extra pounds that you have already gained as a new wardrobe opportunity!
Good luck and stay well.
Helen
Hi Donna,
It is a general side effect of Glivec that many experience. I think it is generally because the drug causes water retention rather than actual fat gain so it is hard to assess how much you should expect and when it will stop.
Each of us is an individual and we so side effects can vary greatly. However, it may well be that this side effect is more of a problem for you and this could be because of several reasons.
If it becomes more of a problem for you over time then it may help to ask your doctor to arrange for a plasma test to see what the continuous levels of imatinib (Glivec) is present in your blood. The target level should be at or over 1000 ng/ml.
If levels are much under this level and your response is not what is expected then you may need a dose increase...Plasma concentrations level should be performed before mutational analysis in patients with sub-optimal response to imatinib.
I suppose it is logical therefore that if the levels are a good way over the target level then it may be one reason why a patient might experience increased side effects.
It is an interesting way of thinking about why responses/side effects differ so much between individuals and we will see more about this in the next few months.
Meanwhile you may like to talk to your doctor about the possibility of getting this done..... trough imatinib plasma concentration testing is simple and a quick way to determine imatinib exposure... the test is provided free of charge by an initiative set up by ELN EuropeanLeukaemiaNet/Novartis.
I have uploaded the EUTOS guidelines under 'Newswire' expressly for CML clinicians who wish to take advantage of this offer.
Sandy
Thanks for your comments! Sandy I was given a pill for water retention by my onc but I don't take it regularly enough (my fault) to see the effects.
I was an avid runner before dx and now do very little, I have been trying to walk but find this gives me shin pain for the rest of the day. So you are exactly right about the change in my level of exercise Helen. Anna good luck with your pregnancy :)
BTW I am in the US.
Donna x
Hi Donna,
I understand why you might be unwilling to take a diuretic as this may have the effects of upsetting your sodium/potassium balance. Anyway you have to take Glivec every day so why add to the burden? I would encourage you to look at the link to EUTOS under newswire and think about having your plama trough levels checked just to make sure that you are not way above the level needed for best response. There is a lot of information for your doctor here and as I said ... it is free.
hope you get back into your stride and can take up running again. Is your haemaglobin level high enough to enable sustained excercise like running? If it is on the lowish side then a more gentle excercise might help. I know the shin pain you describe but it may well respond to gentle exercise over time. Have you thought of Yoga stretch classes, or Pilates? In my experience these two can really improve flexibility and fitness and in my case pilates vastly improved both my back and my knee pain.
best wishes,
Sandy
Good topic
For those who do not want to use a diuretic -
if you go on an eating plan named Salt Skip Program
- which was devised for Menieres, High Blood Pressure control
and healthy eating etc you will not normally have to use a diuretic
If you go to a website named saltmatters www.saltmatters.org
you will have heaps of links for great eating with low sodium
and therefore hardly any fluid retention while of glivec.
Having stated that - I have just had surgery and have been off glivec for 14 days - Wow what a difference - no queeziness
- no eye or face odeama - and I also lost some 1 1/2 stone
- I would suggest this is not all to do with surgery but that of glivec as well.
Since home I have gained a 1/2 stone in weight - why because I cannot exercise yet - and eating more carbs than normal.
Sue