Myelofibrosis

Hi All

I haven't posted on here for a while.

My husband has Myloefibrosis his energy level is really bad - he has lots of pain in his stomach both sides even though Drs removed his spleen he says his stomach feels like it's going to explode. .His night sweats are awful and now he has started getting a lot of pain in legs making what walking he can do really painful.

Nobody seems to be able to give us much information about what to expect with this condition- is their anyone with similar problems or has MF.

Thanks

Aniand

9 Replies

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  • Sorry Aniand. I can't help you with your post, I have ET. I do hope you find some help and advice for your husband. So all I can offer is good wishes for an answer to his problems.

    Regards Sandy

  • Thank you for replying - it just very frustrating as he looks so well but is suffering so much.

    Kind Regards

    S

  • hi, i have mf though not as yet as advanced as yr husband's by the sound of things but have similar problems. i have found my haem unwilling and perhaps unable to give me much information about what to expect - rare disease, all different and all that stuff, which i find unhelpful. you could try contacting Macmillan esp if u r in an area where they r strong, or another local similar service e.g. marie curie

  • Thank you for your reply.

    It is just such a frustrating and helpless situation .

    Best Wishes to you.

    Regards

    S

  • Go on to the MacMillan cancer site. I think they might have a forum you can ask questions about MF. I do hope it helps your poor hubby, he really is going through the works xx

  • From talking to other people on various support groups, the advice always seems to be to get referred to a MPN specialist as many haematologists don't have such a good understanding of the condition. Would your GP be able to make a referral to Claire Harrison at Guys & St Thomas?

  • Hello thank you - N my husband was under Claire at the beginning of diagnosis . She was very helpful at the time but he doesn't see her now - I think that maybe he should.

    Regards

  • Hi Aniand... :)

    I too have MF but I also believe that I am at a slightly earlier stage than your hubby is at the present, and I still have my spleen...

    I am 57, and I was first diagnosed with ET, before my Bone Marrow Biposy (BMB) revealed a high level of scarring, and my diagnosis changed to MF...

    I suffer from many of the same symptoms you have described...

    A little while back, I decided to try really hard to make myself as healthy as I can, (given my extreme bouts of fatigue – it was never easy to get started), I was not sure how I would go at first. However, the ketogenic diet I commenced some 3mths ago now has generally produced better energy levels, and a sense of greater well-being for me personally, overall...

    A keto diet is well known for being a low carb diet, where the body produces ketones in the liver to be used as energy. It's referred to as many different names – ketogenic diet, low carb diet, low carb high fat (LCHF), etc. When you eat something high in carbs, your body will produce glucose and insulin.

    Previous to this attempt, my slightly enlarged spleen was making eating quite an uncomfortable event, and as result, I have now decided to use this new dietary regime with intermittent fasting.

    In other words, I now only consume an evening meal, and keep the carb's really low to non-existent. One of my body's reactions to taking these cocktails of cytotoxic drugs was that I was quickly gaining weight. I had previously also always been a fairly active, sports-playing person. Hence, my diagnosis brought about a more sedentary life style, initially speaking... and I gained unwanted weight.

    The weight I gained was circa 10kg... not good. Made me ever more depressed, and unable to see a more positive perspective about my new journey through life, best to be philosophical I thought... :)

    Before, I commenced this diet, I was also having a bit of trouble just trying to walk about. I was also growing seriously shorter of breath on almost a daily basis.

    Now, I have coupled this diet to a mainly aerobic exercise regime, that consists mostly of a 1.5 hour routine, (and starting slowly at first to build my strength), I eventually manage this regime 3-4 times pw.

    In a 12 week period, some of the latter weeks with hardly any exercise, I continue to shed about a kg per week. 12.5kg last count... :)

    I am not sure if this suggestion is even a possibility for your partner, however, at first I also did not believe that I could do it either... But I am glad that I have, and will continue to do so for as long as I am able because overall, some days I feel almost completely normal again... I almost forget my diagnosis exists at all...

    Aniand, you mentioned that Dr Claire Harrison use to be your husband's specialist. There are few people in the world today that might have better credentials where MPNs are concerned than Dr Harrison.

    I am based in Sydney, Australia. And I can tell you that they are extremely rare down-under...

    Best wishes to you and your partner Aniand.

    Steve

  • Thank you Steve - Best Wishes To You. How wonderful that you are managing your symptoms so well.

    My husband is 72 and for him it's a daily struggle and unfortunately this is how it's been for four nearly five years now and I can see his condition worsening. No light for him.

    Sorry for spreading my doom and gloom.

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