Two years ago I have been diagnosed with ET Jak 2+ and been on Hydrox., Aspirin and Bisoprolol ever since, on different dosages. I am blessed that all is going well and my platelets are just on right level. My side effects are pain and deterioration in my joints, bones, memory loss, "chemo brains," and weight gain. Just a few but don't count small one. Over 25 pounds gained and this makes even more problems for my joints. I tried everything and it seems that no matter what, weight is gained. Also I drink 3 l water per day to help me with medication, toxins flash, and on well balanced diet........... small portions, etc....
Any suggestions???
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light
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Hi Light I wish I could help because I am in exactly the same boat. I have put 10lbs on and no matter what I do I cannot get it off. It is so disheartening to stick to a strict diet and jump on the scales on a weekly basis and they haven't moved. I dread to think what weight I could go to if I wasn't strict with myself. I have ET Jak2+ and on Hu. You are not alone
Hi, I have had polycythaemia vera JAK-2 since 2005 and have steadily gained weight. Weight was 83kg by 2007, then 85kg steady until this year, but has gone up again to 89kg. I too have tried dieting and exercise, but it makes no difference at all. I am fairly convinced that Hydroxyurea has weight gain as a side effect and, although I've suggested this to my consultants, they deny that this is the cause. The Macmillan Cancer UK booklet on Weight management says that some cytotoxic/chemotherapy drugs do cause weight gain, but doesn't say which ones. It would be useful if some research was done on this. All you can do is eat sensibly and exercise regularly.
Hi light, interesting post! I am Jak2- but not on any drugs yet. I have weight management problems too and find it difficult to get enough exercise when feeling so fatigued. Some days I can cope with the exercise, the next I can hardly put one foot past the other. I do eat sensibly but have been known when fed up, a bit down to eat chocolate unfortunately!! Every sympathy, take care Aime x
Hi Amy, nothing to be sorry for having some chocolate considering what we are going through. Little pleasure goes long way and helps too. Wishing you well.
Hi a little of what you fancy does you good it works for me mines red wine. Had weekend in london forum lots of info enjoyed meet others qith Mpn diseases lots of information leading experts in blood cancers.
I have E.T. (Jak negative) diagnosed in 2005. Have been on Hydroxycarbamide, lansaprozole and asprin for 8 years. My weight has been fairly constant until I was put onto bisoprolol about 2 years ago and I have put on a stone since then at least.
All this medication seems to have an effect on my weight combined with not so much exercise due to the fatigue we all suffer from. I used to cycle to work every day but since retiring my bike is rusting away in the shed!
Hello Mol56, thank you for sharing your experience. This is very interesting about bisoprolol that your weight started to go up. I wonder??? Yes I did to cycle all the time but now not at all and now just thinking how much I miss it. Wishing well.
Hi thanks for the topic. I am struggling with weight as well. I have ET and am on HYdrea. I've put on 15 pounds since diagnosed but was overweight beforehand. The fatigue has been what I connected with the gain...it's great to hear from others with similar situation. Seems I'm gaining differently since diagnosis although I'm older too and more stressed( multiple variables) I used to carry weight in my bottom, now my tummy seems to be where it's landing. I'm actually getting used to it....probably not the greatest. Is it complacency or acceptance or just being to darn tired? Smiles to you!
Wishing you well and hope that some day soon we will find the way how to get to the bottom of this. It is not easy for us dealing with our health situation and I am grateful that I am doing well and tolerating well Hydrea, with side-effects as a addition to all. I just don't want to get in situation where my weight is gone out of control. I hope that we all can try to find out how!
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