Suggestions for weight gain diet with MF

[RobinBrum]

MF is starting to bite. I've lost 7-8 lbs in two weeks, plus bone pain, very low HGB, etc. I've been researching weight gain diets for both bulk and muscle gain. Does anyone have any suggestions/experience to share?

[crapaud]

To be able to undertake my SCT I had to be taken off my Pegasus treatment - in doing so, amongst other things I lost ~3stone (20kg). Consequently I had to put on weight and stop the infernal drop in health to be eligible for a SCT. I was given protein supplement drinks 3 times a day (milk based?) along with my corticoïdes.

Luckily it worked.

Good luck

Crapaud

[Mazcd Partner MPNVoice]

Hi RobinBrum, sorry to hear that you are having the bone pain, it is not very nice, and also that you are losing weight. I would advise that you speak with your clinical nurse specialist about both of these issues as she/he will be able to help you, also it might be worth asking for a referral to a dietician for advice. Best wishes, Maz

[hunter5582]

I have 15 extra pounds I would be glad to give you! If only such a thing was possible. I would also note that beer and cake are loaded with calories.

Seriously, there are healthy ways to put on some weight. I would consult with a nutritionist since you are managing a serious health condition with MF. I suspect you are also losing muscle mass, which is an issue. Proper exercise may be a problem with bone pain, but would suggest you find a way to ensure you maintain proper muscle tone along with the weight.

Please let us know how you get on. I hope you find some really enjoyable ways to gain healthy weight back.

[Otterfield]

My diagnosis of Myelofibrosis was fairly recent and in the months leading up to it I lost about 2 stone. To be honest I haven't really found the answer to weight gain but since being on Ruxilitinib I have been increasing the amount I feel able to eat, presumably because it's shrinking my spleen, which was pressing on my stomach. I do find it hard to find healthy fattening foods though. In the past I have lost weight eating low carb, so I ought to gain by eating lots of carbs, but even whole grains are not especially healthy in excess. It's a tough one.

[clubdino]

I'm sorry you aren't feeling well. Sounds like you are suffering from cachexia...a type of weight loss associated with cancer. It will probably be very difficult for you to gain weight without getting the disease under control first if possible.

[Leighcox85]

Have your team spoke to you about rux I lost a lot of weight when I had Pegasus but since coming off that and starting rux I have put around 4 stone on in the last 18 months it also reduces my symtoms and makes you feel a little better but I would take mazs advice and speak to your team it’s important you get the correct treatment for you as we are all different

[RobinBrum in reply to Leighcox85]

I've got a consult coming up shortly, and will explore. Thanks for the advice - others have suggested Rux as well, which I have yet to try. Will also be seeing a nutritionist.

[Pte82]

Look into whey protein for cachexia.

It's also used by the body to replenish glutathione. Ask the nutritionist about it.

healthline.com/nutrition/ho...

[RobinBrum in reply to Pte82]

thanks for this, and the link. Whey Protein is no my list, initially as a basic supplement, and then once I get a bit of strength back, as post-exercise nutrition.

[RobinBrum in reply to Pte82]

Pte 82, I've done a lot of digging, and I am now supplementing with Whey Protein after (limited at present) exercise. I'll see where this gets me after a few weeks. In my researches, I also see that some experts recommend large amounts of EPA fish oil. Do you have any info or experience of this?

Robin

[Pte82 in reply to RobinBrum]

Robin, compare Krill oil with fish oil in all parameters.

[Pte82]

Robin, also look into the advantages of predigested protein. Also, protein is hard to digest and as we age our enzyme levels drop leaving the body unable to use the protein so supplementing with digestive enzymes is needed.