I am ready to throw in the towel. After almost 4 years since starting Hydroxycarbamide (currently 500mg/day), it is still a disappointment to see no results from dieting. After reading many posts on this issue, I know many of us are in the same boat. I remain at 61kg after my latest attempt. Considering I was 54kg when treatment began, it's taking time for me to accept the change.
Frankly, I've lost all hope to lose any gains. I'm on a FODMAP plan and exercise 30 mins brisk walk daily. I am slowly learning to live with the chemo belly and choose clothes that hide the problem. Thankfully I'm 72 and you can hide problems . I'm sure there are ladies with similar issues. Perhaps we can share "coping strategies" here?
Best wishes and keep well ..
Goosebumps Anna
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Goosebumps52
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What an excellent post ! You have put very succinctly exactly my own experience and thoughts. The only slight suggestion of helping to at least understand the mechanism by which we gain/ fail to lose weight comes in a book by Dr Casey Means called, " Good Energy". It is not a " fad diet" type book but rather an explanation at a cellular level . You may have already read it ? Anyway it is the only book which I have read about weight which didn't make me shout at it in frustration ! I totally agree with you about the coping strategies idea. Btw I am a 75 yr old male but the problems are the same.
Thank you to all who offered support. I'll search for this book, Aquinas. Perhaps my specialist can off er a simple explanation (I see him in a week). From what I've read switching drugs has little if any effect on weight. Seems like some people lose weight, some gain. We were in the unlucky group ☹️
I had a gastric bypass before being diagnosed with PV. I was a size 12 and so happy. Food had no appeal to me and still doesn’t. My haematologist warned me that I was going to hate her because Hydroxy puts weight on you and boy did it. I
I actually lost about 30 pounds on hydrea. I was very underweight. My doctor switched me to jakafi summer of 2023 and since then I’ve gained over half my weight back. But I have MF and my transplant doctor said my body was working overtime to fight the cancer and that’s why I lost so much weight.
Thank you so much for bringing this up. I was just talking to the nurse practitioner at my onc/hem office and she said she has never seen anyone gain on HU. They usually lose weight. It is hard enough to have this condition without the "treatment" making you gain weight. I had lost weight and was keeping it off before HU. No matter what I do, I can't budge the scale. It has made me very sad. Thank you again.
this has been my experience too. I lost 30 pounds the two years preceding starting HU, partially motivated by knowing it was coming and that it causes weight gain. I have been on HU a year and gained at least 10 pounds back in spite of diligent diet and exercise.
My kind hematologist listened to my whining and two weeks ago I started on Zepbound. Not much result seen yet but I can tell I have a decreased appetite. Hoping!!!
I am nearly 71 and a male. I have noticed a weight gain on this medication. The medication makes me feel like junk most of the time. I have a Hematology appointment on the 5th of December and I will discuss this with the NP ( Nurse practioner) since I have only seen the doctor once in a year. I guess she must feel like her time is more important than talking to me. I could be wrong and probably should not have written that but me GP said he has gotten the same complaints from others that go there. Sorry about the rant. But just like you ,I want to know if there is a better way to deal with this. Two weeks ago my platelets were 1034 and that is with taking 1000mgs of hydroxa. Let the group know what the outcome is . Thank you for the post and blessings from ( LA Lower Alabama ) lol
I have MF and take Ruxolitinib which also puts on weight. I am even older than you aged 83. It is actually the huge increase of weight on the belly area which causes the most stress.
I eat very little and cannot exercise a great deal as I have atrial fibrillation. Like you, I find the whole thing distressing as I was not overweight when I was in the ET stage and injecting Peg.
I did put on weight when taking HU but it stopped increasing after a while. The only drug I went back to a decent weight on was Peg which I injected each week. Like you, I have to disguise my stomach with loose clothing. Haven’t got any answers yet but I keep trying and will let you know if I find an answer.
I was diagnosed with ET in 2005 and progressed to MF about two years ago. I have had several different drugs over this time and apart from Peg which, they all caused weight increase.
Thank you for your post!! I am also on HU and I have definitely gained weight. I have been on it for 13 months now and have gained 5 kgs I think a part of at least my issue, is that I don't feel great, so excersizing is difficult, but I was still surprised by this weight gain, as I try to watch what I eat and move as much as my body allows me.
I was feeling very low about this, so your post helps in knowing that I am not alone
I will be seeing my specialist in a couple of weeks, so will ask him.
I gave up all white foods, it slowly came off, still coming off🤭 To maintain it I have had to be strict, I eat a lot of grapes, they are like boiled sweets if you put in freezer, nice in summer 🌞 I found looking for different grapes, colour, flavour, size region etc..... keeps me occupied and off the white foods .
I'm sitting here feeling helpless/frustrated like most of us. I wonder if I'll ever learn to cope with the extra half stone ...it's darn uncomfortable with this bloated belly...but what can one do???
On the brighter side...these chemo drugs are keeping us alive.
Thanks everyone for your heartfelt comments...Season's greetings if I don't get beck here before Mr Claus arrives 😃
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I think a part of at least my issue, is that I don't feel great, so excersizing is difficult, but I was still surprised by this weight gain, as I try to watch what I eat and move as much as my body allows me.
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