Need your advice please

[Goosebumps52]

For the last 60 years I have been a vigilant weight watcher, daily exerciser

and have watched my calorie intake. When I commenced treatment for my

Essential Thrombocytosis in January 2021, my weight was 53.5kg. Three

years later this has ballooned to 60.3kg, despite my efforts to control any

gains. Sadly, my self confidence has hit rock bottom.

Although I am now on the lowest maintenance dose of hydoxycarbamide to

control platelet growth (500mg daily), my weight continues an uphill climb. Platelets

are normal, but the effects of this drug continue to be of great concern to

me. I am regularly depressed due to my weight gain and appearance.

Furthermore, it is very frustrating not to be in a position of control (via my

diet and exercise regime) regarding my weight and appearance.

I have researched and am looking for a change of medication from

hydroxycarbamide (which I understand to be a chemo drug) to the non-

chemo and immune stimulant drug Peginterferon Alfa-2A. It could be that

this medication will suit my needs better. I understand there could be some

initial side effects, but I am keen to make the transition.

Your thoughts please....

Cheers,

Anna

[hunter5582]

Sorry to hear about the issues with hydroxycarbamide. You are correct that it is chemotherapy, specifically an antimetabolite that interferes with DNA activity. Some people can tolerate hydroxycarbamide and benefit from it, but not all can. Pegasys is another first-line treatment option for ET. It is an immunomodulating treatment. Its mechanism of action is different as are some of the contraindications/cautions and adverse effects. Some people tolerate Pegasys better than hydroxycarbamide and find it more effective, but not all do. The only way to know is to try.

We are all different in how we respond to the treatment options for MPNs. I am one who was refractory to and intolerant of hydroxyurea. I found the interferons, Pegasys/Besremi, to be more effective and easier to tolerate. Note, however, that my response does not predict yours.

kudos to you for advocating for yourself and using your own risk tolerance and treatment goals to guide your treatment decision making, Switching to Pegasys to treat ET is a very reasonable and rational choice. Wishing you success moving forward.

[Stargaye]

Hello.. .. my situation is a carbon copy of yours. I’m ET Jak2 .. also 71 and am also in Australia. So I can empathise with you and understand your despondency at times. It could be soul destroying if we allowed it

I too have always maintained a good healthy body weight… eaten a healthy diet, maybe except for the occasional chocolate. Keep active .. no couch potato. Never eat fast food and consume very little alcohol. Since being diagnosed beginning July 2023 I have had a rapid weight gain of at least 7kgs. I suffer at times from bloating feeling.. especially after eating. I am on 500mg x2 per day.

I’ve mentioned this my haematologist but he didn’t really regard this as a major side effect.

I’d be really interested in hearing your follow up and progress when taking the peg interferon… I haven’t looked into with too much detail as yet.

Good luck in your decision making .. please keep us posted of your progress.

Sending you kind thoughts and thank you to Hunter for his informative reply 😊

[Wyebird]

I too all my life have watched my weight. I get how you feel when it goes up.

I’m way heavier than you although height comes into the equation ( I’m 5-3”)

I can’t say hydroxi has increased it, although others on this forum have mentioned weight gain. Mine is sheer indulgence.

What I have realised is that the fatigue I experience doesn’t allow me to be as active. I think that is where the weight gain comes in.

As for peg I love it. I’ve been on it 2 yrs now.

I have far more energy. However you, I consider to be on an extremely low dose of hydroxi. I was on 27 tablets a week and feeling lousy.

Personally whilst you are stable I wouldn’t rock the boat unless all options were exhausted.

Good luck with your decision

[JOL13 in reply to Wyebird]

Me too, I have gained a horrendous amount due to constant fatigue and put it down to in activity. Am constantly exhausted and have now ruptured my thigh muscle to boot - which is not going to help me - I can't walk very far am on pain meds too -- its the inactivity that has made me gain.

[Charliemills]

Good morning Anna from a very wet UK. I can mirror everything that you have stated. I too have gained an enormous amount of weight on hydroxycarmide, the same dose 500mg per day for the last 4yrs. I asked the question about peg on here, I received really informative replies from this amazing MPN family. I start peg on the 8th March, so 10 days time. I will post updates throughout, will be really interesting to see if the weight reduces over time, along with migraines which I regularly have with hydroxy. Watch this space. Best wishes .Jan.

[Exeter21]

Are you tiny to be that weight. I am 5.6 height & 63kg roughly on Interferon. This drug has not affected my weight. Hydroxy I lost weight on as my body rejected it. I walk lots but eat few carbs & a rare weekly glass of wine. Interferon I find is good but other things happening in body can sometimes give weight gain . Julia Uk

[Goosebumps52]

Thanks so much for your wisdom and thoughts. My GP has talked me into an intermittent/alternate day diet and I am trialing that for a few weeks before my specialist appointment in mid March. He backs my thoughts on asking for a change, but is not convinced this would work for me and may in fact cause more problems other than weight gain. I'll keep you in the loop on this.

Cheers to all....

[Jennytheb]

Hi, sorry to hear about your weight gain. I have 3 x 500mg Hydroxy daily and need to put on weight a bit. It doesn't affect my life at all, perhaps I am just lucky.

See hunter has given you some really good input, he's just right.

Take care, hope you can feel better soon.

Jenny

[Plate]

Hi Anna, I am on HU also. I am 71 yo. I have neither lost or gained weight while on it. I am 120 #. I do take antidepressants though. I am on Welbutrin and take two 100 mg Tablets everyday. Depression is a horrible disease. I highly recommend to confer with your team about medical treatment for it.

Best wishes!

[gilded]

Hi Goosebumbs! I’ve never been prescribed Hydro. Prescribed Peg interferon for past 18 months. No weight gain problems. Am ET CALR +. Am 80 yrs old.

[ciye]

I have gained excessive weight on hydroxy, took it for a year , then switched to interferon lost the weight sadly for me the side effects of interferon meant after a year I had to go back on hydroxy in 18 months I have gained twice what I lost. Heamo dismissive of gain...

[Planting]

hi Goosebumps. I too have been a careful eater and active all my life. I have been on hydroxy for seven years and have out on almost a stone. It levelled out about 2 years ago. At present I take 12 x 500 mg per week and have ET jak2 +. I don’t think any of the medications are without side effects and although I get tiredness and bone pain I’ve learnt to accept and to be grateful that it was found before I had a stroke. I am suffering at the moment with recurring sessile rectal cancers and wonder if the hydroxy has contributed to this since these cancers are similar to skin cancers.

I’d be interested in your views

[dogsandhorses]

I had the opposite problem. Lost 30 pounds due to the GI issues from Hydrea. I'm switching from it as well. I had to find and visit an MPN Specialist to get that accomplished, and am still waiting for the new drug. We will see how long that takes. All I would say is that you know your own body better than anyone else, and you are you own best advocate.

[Goosebumps52]

Hello friends,

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