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Hi,

I have been reading all the comments that you post it in the forum, and I have to confess that I'm a little bit scared. I suppose this is normal.
For me the most important now, is to know (despite I know every person will be different) which are the common events we should expect during treatment with Gleevec.
We have started with bone pain, what's next? Did everyone experience anemia for example, liquid retention, etc? I just want to be aware about what we expected and how we can handle it.
I would really appreciate.

best regards,
Carmen

Hi Carmen
Fluid retention is a common effect of Glivec and if severe can be alleviated with a diuretic but your consultant will advise. Glivec also tends to affect the haemoglobin levels but as I said to Suzzie you don't have to worry about transfusions until you get below 9. The body will adapt to lower levels of Hb. Platelet levels can be affected also and the white blood count levels. Everyone reacts differently. The side effects are mostly not severe and are manageable. Don't worry and take each day as it comes. We are here to help.
Best wishes
Elizabeth

Hi Carmen,

I see from your earlier posts that it's your husband who has cml.
I am in a similar position in that it's my wife who has cml - diagnosed in September 2003, and is doing quite well.
I understand fully your fears and concerns, particularly in the early months and weeks after diagnosis. Be encouraged by the people who contribute to this site, share your concerns with us, there's usually someone who has had similar experiences to yourself /your husband.

As you rightly say, Glivec has known side effects, but many people take it without too many problems. The most common effects seem to be fluid retention, skin rashes, and to a certain extent an effect on the digestive system. There are of course effects which are not always seen, such as suppression of the white cell and platelet counts, but these will be monitored by the doctors.

My wife's main side effect has been a moderate fluid retention - but not sufficient to need diuretics - it's been mainly around the eyes, however that has decreased over the time she's been on the medication.
Occasionally she also gets an upset to her digestion - this is if she does not take enough food with the medication, or does not drink enough fluid with the tablets.

There are of course rare effects which cause people to stop Glivec, but now there are good alternatives available.

Hope that your husband makes good progress, keep in touch

Best Wishes

Paul

Hello Carmen,

Side effects will vary from person to person, I have some slight fluid retention around the eyes and have had some pigmentation changes, but neither of these has been really noticeable to other people. I think I noticed most of these things because I look for them. Also for example I do not suffer from the fatigue or the diarrhea that some do. I did have the bone pain the first month, the Dr said that this was because the medicine was actually working and “squashing” the leukaemia cells.
The side effects seem to really vary from person to person. I was diagnosed three months ago with CML and I came to this site on the first evening of my diagnosis and had exactly the same thoughts and concerns as you and your husband do now: What’s going to happen next? What if I have side effects ? How will this affect my life? etc
For me, I am three months into Glivec, have had a good blood response (CHR) and manage to go to work almost every day.
What I have seemed to gain is that while various people have various side effects, almost all of them seem manageable.
I hope this brings you some comfort. Do let me know how your husband (what is his name?) is getting on.
Kind Regards
Bil in the UK

Hello Carmen,

I can relate to your dilemma, when I was first diagnosed, I done the typical bloke thing after being bombarded by all this advice and soldiered on, after all I was not feeling “unwell”.

My wife did look on this site at first and we too had to filter out general advice from peoples specific solutions to their specific problems, mainly because, as Elizabeth said above each person is different.

With regards to the multitude of possible side effects, I remember seeing my GP within the first couple of months on a none CML matter and having a good old laugh at what side effects were not included in the Glivec literature…this aside I would again revert to Elizabeth’s comment that the side effects are in the main manageable.

My apprach to the side effects I experiance is;-

Lots of water is a top tip and may negate a lot of side effects before you get them. My philosophy being to keep my system flushed out!!

I still get some bone pain, but not even worth fretting about. A banana seams to help here but that’s me, how much this is placebo effect I am not sure - though it may be a potassium thing!!.

I have overcome the stomach upsets by not drinking tea or coffee two hours before or for the rest off the night after taking my tablet. I take my tablet in the early evening with or just after my meal.

I have learnt to live with my addiction to drinking pure orange juice…not sure if that is Glivec but I do take a vitamin supplement, again hopefully to offset side effects. It also seams to settle my stomach first thing in the morning, more so if I have taken my tablet late evening.

The only aspect I am not clear on is skin related problems. I do tend to get a rash, but bordering on getting personal, as it is more noticeable, I don’t seam to get spots anymore. Is this a side effect?

I hope some of this makes sense, if not now it may , or may not in the future again to reinforce the point not everyone experiances the side effects.

Andrew