Worsening symptoms of myelofibrosis

[Goldfish212]

Hi

Can anyone tell me the worsening symptoms of myleofibrosis as I am very concerned about my partner who has post ET myelofibrosis and since diagnosis has become more and more tired. He is on hydro (fluctuating dose) and Rux along with other medications for a heart condition and portal hypertension but has no energy at all. He gets out of breath even when taking a shower and I am getting so concerned as he appears to be failing. I have tried to find out how you can tell if the condition is worsening or if is changing to AML. He prefers not to know and I totally understand that but I am so worried about him. So anyone who can give me any indication or any experiences they have had will be much appreciated. Thankyou

[Vancritch]

Hi I have post et mf n intermediate 2...n on rux. I dont have any other conditions ur partner has. So I cant give u too much info. Firstly I'd like to send u a email hug as as patients we dont get to see all the worry n anxiety out partners go through. I know it's hard.. only say that cos 8 years a go I watched my husband die of cancer. Anyway back to trying to be helpful..so have u had his hb levels checked...my hb is 84 n anaemic...I'm out of breath just going to the loo...well ok but walking up n down stairs or even more than 200 meters. When I've asked these questions my consultant said to watch out for severe sweating weight loss pain n or swelling of spleen n unexplained fevers. I'm seen once a month for a review n bloodtest. Also if I became transfusion dependent then this could be a sign of bone marrow failure. In terms of leukaemia..well this is noted in the blood samples..we throw out what I think is called blast cells. If the are steadily increasing, then this I think n please dont quote me is a sign of possible progression. I think they have a certain number of blast cells they look. I hope this helps but like I said this is all I know in regards to my own experience of mf n not the other conditions ur partner has.

[socrates_8]

Hey Goldfish212...

Yes, I am also Post ET/MF... and, I have other High Risk mutations too. I am on Rux' 25mg bd, and low dose (enteric-coated) aspirin only. I am very interested to understand more about the med's your hubby is taking? As my platelets are stubbornly very high... I am about to be tested for Von Willebrands Disease (VWD). It can cause certain complications with bleeding and fatigue can occur as a direct result etc...

Ruxolitinib, is also an Immunosuppressive drug, which means that it suppresses the Immune system to stop producing an over abundance of blood cells, and it is known to cause anaemia as a consequence...

I am guessing that your hubby also has a high platelet regime too... as that might explain to me why he is taking both HU and Rux' if that is still the case?

Is he also taking Aspirin? Is it also Enteric-coated? If not it can really be quite harmful otherwise...

What level are his Platelets? Mine are often in the 900s to 1M mark, and I do still suffer from a number of symptoms, and some are worse than others... But with me at least, apart from the general fatigue... (which is always nearby), it's a lot like a rolling pantomime of symptoms, that tend to come and go...

If you are really concerned, you might ask your hubby's Haematologist to have a Bone Marrow Biopsy (BMB) performed to learn what level of fibrosis that he might have etc (?)

Very best wishes

Steve

(Sydney)

[USSpurdy]

Goldfish212........I am 87 years old and was diagnosed with MF 2 years ago. I have been taking Jafaki for 2-3 months and my blood chemistry has improved since taking.. My only symptom is fatigue and I can’t separate that from normal “87 year fatigue”. Don’ know if this helps?

[jointpain]

Hi Goldfish, I understand how you feel about needing to know the ins and outs of this MPN, how it affects your loved one, what to look out for, and what is expected, or out of the ordinary.

I keep a close eye on my beautiful wife, who has jak2 pos. MF though probably had ET previously. She too has portal hypertension due to a portal vein thrombosis, also becomes very weak and tired when having a GI bleed, her Hb goes down to very anemic levels. The hematologist does take a keen interest in her now, and sends her for iron infusions along with getting her bloods to as near normal as possible. Two weeks ago her bloods were all in the normal range except the neutrophils were maybe 1.1 too high. Then a week later she bled, she saw him again in Tuesday, when the bleed had ceased her Hb had dropped a bit, but another test on Monday will show if she needs more iron. She is still waiting for a camera pill to be given to check where in the small intestine the bleeds are from. Joyce is on hydroxy Anagrelide and BP pills, and penicillin due to having a splenectomy last year. When she's good she is as fit as a fiddle, and only tired when her Hb is low.

I would think your husband's weakness could be to do with his heart condition and not the MF, though everyone is very different .