Husband With Myelofibrosis

My husband has had MF for four years and has had his spleen removed which has caused him continuing pain in his stomach. He has all the usual MF symptoms - tiredness joint pain etc. But now he has developed he has the feeling that his inside is bursting out of his body and his legs are feeling like jelly when he walks around. Has anyone else had anything similar as the Dr's don't seem to be able to help and his bloods are good at the moment. Help.

[socrates_8]

Hey 22Lofty

I am not sure my response is going to help all that much.

I was diagnosed Post ET (pre-fibrotic) MF in May this year. Although, at this stage I still have my spleen, it is a very uncomfortable spleen all the same.

I was also CT scanned a little while back to learn that my spine was degenerating and osteophyte growth along the vertebrae is also causing neural weakness of both my limbs. Initially, they prescribed Lyrica for the pain, but since that subsided, it has really only revealed this weakness in my limbs is a far more chronic condition than I had previously thought.

You say that your hubby has had MF now for four years, it is possible that although I was only diagnosed in May 2016, that I have actually had this MPN for a much longer period of my life too (20/20 hindsight is such a useful tool is it not?). And therefore, I could be more progressed than I am currently aware of, if that makes sense?

It was explained to me that it can be quite a progressively deteriorating condition, once MF sufferers reach a certain stage.

I also suffer very badly from bone & joint aches and pains, every-time I eat I feel ill, and I often experience a nauseating restlessness in my legs.

I was initially started on Hydroxyurea (HU) and low dose aspirin. However, I felt that the HU was making me feel worse in a generalised sense. I have now been on Interferon for the last 8 weeks but my Bloods are still too high (803 last count), and the dose is being raised in frequency and quantity as we speak...

I actually feel like a walking time-bomb, just waiting to have my next TIA, I hope I am wrong of course...

Jedi Reject might be able to provide some useful feed-back too...

Steve (Sydney)

[JediReject]

Hello 22Lofty , , well as my friend Socrates points up MF is a complex condition which affects sufferers in many different ways and levels. So each case is individual. It's also comparatively rare affecting 1 in 100,000 according to stats. In my case I was quite fortunate to go 9 years with drugs to manage symptoms. Like Socrates I probably had MF at least a year or more prior to diagnosis. As I always mention the drugs are only to try and manage symptoms, the underlying MF marches on regardless.

It's a last resort to remove the spleen so your husband must have had real issue with it. Mine was quite large and uncomfortable but I retained it. You don't say what meds your husband is taking, I ended up trying Ruxolitinib and a good few Forum members are now taking it with mixed results. It didn't shrink my spleen but reduced the effect of other symptoms fairly well.

A year ago I opted to undergo a Stem Cell Transplant to try rid myself of this debilitating condition, it went well but since then I have developed Graft Versus Host Disease which has led to many complications. Is SCT an option for your husband?.

Regarding his recent symptoms I'm afraid I didn't experience the jelly legs and my abdominal discomfort was due my massive spleen which your husband doesn't have now. I would guess it's linked to his MF assuming he has no infection which would likely be picked up from blood tests.

Good luck to you both as I know how challenging it can be living with MF and waiting for the next hurdle.

Chris

[Hidden in reply to JediReject]

Hi thank you for replying.

My husband is 70 and has had secondary MF for four years now and PV for twenty plus years. He had his spleen taken out as it was causing him a lot of pain it weighed 3.402 kgs. Although he wasn't expected to live he has done brilliantly but he still has a lot of pain in his stomach . He takes 15 hydroxy a week plus an assortment of other pills.

We are just a bit naive as to what to expect from this disease as he seems to be getting different symptoms all the time and we can't seem to get answers from the Dr's .

Kind Regards

[Hidden in reply to JediReject]

Hi thank you for replying.

My husband is 70 and has had secondary MF for four years now and PV for twenty plus years. He had his spleen taken out as it was causing him a lot of pain it weighed 3.402 kgs. Although he wasn't expected to live he has done brilliantly but he still has a lot of pain in his stomach . He takes 15 hydroxy a week plus an assortment of other pills.

We are just a bit naive as to what to expect from this disease as he seems to be getting different symptoms all the time and we can't seem to get answers from the Dr's .

Kind Regards