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Advice please

Hi,

I have posted before re stomach pains and taking Glivec. Well to cut a long story short, I thought Glivec was causing me really bad stomach pain. So in April I decided to come off it and see if the pain eased. When I went to clinic mid April, I told them what I had done and they reassured me that the Glivec had nothing to do with the pain etc and it was prob something else, and told me to go back on it. ( I had been off it for 3/4 weeks by then) So stubborn me, decided I knew best and stayed off Glivec for another 3 weeks. Until 1st June. During that time I had 2 flare ups of the severe stomach pains I had previously had. Therefore, I knew it wasn't Glivec causing the pain. Which I am glad about as I have done so well on it. I had to know tho, as I was resenting taking Glivec, as I thought that although Glivec was saving my life, it could have also been harming me in other ways. Anyway, I re-started it and after about a week, I started to feel awful, really ill and fluey!!! I am so tired, I feel like I have a tummy bug, bouts of nausea and a constant head ache. I thought I had a bug or something, then today I have got a really sore throat and my glands are up. I went to my doc who said virus, but tbh he would say virus if I went in with a broken leg!! What I am concerned about is that I have become neutropenic??? I did when I first went on Glivec 4 yrs ago, I came off it for a week to let my counts rise and then I went back on. I have always been mildly neutropenic since starting Glivec. I can't remember how I felt last time. I feel awful at the moment, I just want to sleep, have no energy. It could be a virus and it might not. Can anyone who has been neutropenic tell me how they felt please? I was off Glivec for 7/8 weeks, I never had any other side effects apart from swelling of my eyes before, it has never made me feel like this, I hope I haven't became intolerant to it. I take my tab before bed and sleep through most of my symptoms.

Would be glad of some advice, thanks.

Liz. x

I'm not an expert but neutropenia itself won't make you feel ill I think - what it does is reduce your ability to fight infections, so if you catch one (viral or bacterial) then the body has a harder time fighting it. You will only know if you are neutropenic again with a blood test of course and I suppose it's possible but most people I think generally only experience a dip to begin with - I did - because as Glivec starts to work and the duff CML cells die, the total no of neutrophils goes down only to recover as gradually more and more good ones are made. Whether or not you're experiencing a similar dip having been off for a while and now restarting I don't know - it may however simply be that your doctor is right and it's a virus.

As Richard said neutropenia on its own wont make you feel ill,have you a temperture?,You might have a infection, You need a blood test ASAP,I would go to A&E or Urgent treatment centre, full blood count results take about a hour to available once bloods been drawn
I have been neutropenic 0.1-0.0 since Christmas,you have to keep on top of things if you have CML.

I didn't know that, I thought you felt ill when neutropenic. Thanks for letting me know. I still feel awful, haven't been out of bed in days!! I called the CML nurse's in clinic, who have got me a appt on wed morning for bloods etc. They said I could go into the day ward, but I don't want to cause them any trouble, so I'm willing to wait. If I had a temp I would go straight away. At the moment tho, I am just resting and taking LOTS of pain relief!!! I hope it is a virus and not a reaction to Glivec. My husband just mentioned he feels a bit ill, so I am actually hoping he gets it and its something that will go away!!!

Sorry to hear you have been neutropenic Michael, I have been mildly since I have been on Glivec 4 years, 1.5 -2.5. Take care as you say you have to keep on top of things with CML.

Thanks for the advice, Richard and Michael.