Is weight loss even possible?

Greetings all,

Coming up to 2 yrs on hydroxycarbamide and JAK 2 + and it seems like I'm hitting a brick wall with even maintaining my pre-medication weight.

Despite research and help from the community here re an alternative medication, my specialist persuaded me not to change to alternative meds for my ET. Apart from the weight struggle, I have no issues with the hydrea.

Has anyone been successful with a special diet an/or weight loss? Has anyone visited a dietician with good news? Particularly upsetting is the belly bloat (where I believe at least 2-3 kg is hiding 🤪)

Keep well everyone...

Anna (Bobbysmum)

[EPguy]

I had some gain on HU. On Besremi it continued. I changed my diet to eat slightly less of my usual foods. It worked in my case but it's a most boring solution.

[krotsida in reply to EPguy]

Intermittent fasting help me with losing weight, it is worth looking into.

[Johnhoogland]

I lost some 5 kilos by avoiding sitting down as much as I could, avoid sweets (this was tough and some moderate daily exercise. I am now stable on my pre med weight.

[Hidden in reply to Johnhoogland]

Great result. I'd love to be back at my pre-med weight, but my chemo-belly is behaving badly.

[Polly-PV]

Keto works for me x

[Hidden in reply to Polly-PV]

Is there a vegan option for keto? I think it's very high protein. Lentils won't cut it unfortunately.

[RazB]

Hi, this is interesting to read. I have been on Hydroxy for about 12 years and spoke to my consultant (Prof Harrison) about whether my weight gain could be related to it and I was told no. But reading re your chemo tum I’m now wondering! Perhaps we all react differently to it and some of us gain weight? I have just started Noom so watch this space! X

[EPguy in reply to RazB]

I can say with near certainly that the HU did add to my belly.

[Turfbeg]

HI,I am 79 years old, female and have been taking hydroxycarbamide for almost 6 years now and haven't gained weight. In fact I have lost about half a stone. This loss is probably due to the fact that when initially diagnosed with polycaethaemia I decided to eat more healthily - I want to avoid further complications such type 2 diabetes which my mum and younger brother developed. So I SLOWLY cut down on sugary and fatty foods. I snack mostly on nuts and have fresh fruit as desert. The threat of further complications meant the slow reduction of unhealthy eating wasn't too difficult and I now some things such as icing too sweet! Turfbeg

[Turfbeg]

Hi again! Correction to my earlier post - I am 70 years old rather than 79!

[redumbrella in reply to Turfbeg]

Be careful out there it is bad enough that time and nature adds years without adding on more ourselves 😀😀

[Condo204]

Read as much as you can about Intermittent Fasting. It takes will power, but it is the fastest way to lose weight.

[ainslie]

that’s strange I have never heard of anyone increasing weight on HU or Peg, Rux yes.

Maybe wise to consider other causes

[Chemo01]

Hi I’ve been on Hydroxy due to ET for 23 years and have remained the same weight in all that time I’m now aged 71

[Aldebaran25]

totally with you on the weight gain and belly bloat. Have been on HU for over 18 mos and have never had such a wide equator!! this despite all the exercising (I run). I admit that I have been a bit naughty on the eating front. Through running, I could get away with it , but now seems not. I am in the process of switching to Pegasys and have started reducing HU to 5 days/week. Curious to see if this will make any difference (none this far). Sooner or later I will capitulate to eating less.

[EPguy in reply to Aldebaran25]

As I note here, I still had some extra after switch. So some weight remedy is still needed in my case.

[Aldebaran25 in reply to EPguy]

Thank you for this pointer, I will prepare myself psychologically

[falconered53]

I have definitely experienced weight gain on HU. It's listed as a not very common side effect.

After the first year I tried so many ways to lose the weight and couldn't, gave up but am thinking of trying again. The belly is so ugly and my clothes don't fit. Let me know if you find a solution. Good luck!

[Hidden in reply to falconered53]

I've also read that weight gain is a minor side effect and that those of us with a JAK2 pos are more prone to it. I've seen articles on the hydroxycarbamide re slowing metabolism, so that may play a role?

Thanks all for your input.

[EPguy in reply to Hidden]

Interesting on the Jak2 correlation. I fit there.

[Wyebird]

hi yes I lost weight when I put my mind to it.

I think for me I love to eat.

Eat then exercise to work it off.

That WAS my mantra.

Fatigue has stopped that. I’m on a prediabetic course now it’s brilliant but I fear I will pile on the pounds once that finishes

[AndyKay]

Hi. I was diagnosed with ET in January, gained weight but I'm now loosing. I don't eat as much bread or sugar and have cut down on my portion size. Also, try to walk as much as possible.

[Cracklinrose]

I am the same. Just cannot shift the extra weight. I mentioned it to my consultant and she said there was no connection between hydroxy and weight gain. I am so fed up. My next attempt to lose weight will be Intermittent Fasting. I am just awaiting a book on it to arrive.

Wish me luck!

[Hidden in reply to Cracklinrose]

I'm in the same boat here, Cracklinrose. I'm already on day day 3 of IF. Decided on the daily fast and managing on an 8 hr one at the moment. I'm restricting calories as well. I'm stubborn when it comes to accepting any gains. Good luck 👍

[Hidden]

Yes, a vicious cycle it is rickyrickk. Stress causes a freeze on weight loss which causes us more stress. ...and here we go again 😆