Myelofibrosis

[Goldfish212]

Just wondering if anyone has a diagnosis of advanced or progressive post ET myelofibrosis. My partner was diagnosed a few months ago (ET diagnosed in 2016) with myelofibrosis. Since then he has been hospitalised with pneumonia and required potassium and a four units of blood. He was then discharged but attended day unit for a further 2 units of blood two weeks later. He was started on Rux and his hydroxea has been adjusted weekly. However he is extremely weak, suffers night sweats, eats well but does not gain weight (has lost weight and muscle tone) has an enlarged spleen and gets various other constitutional symptoms. We are unsure of his future and although his haematologist is really good she does not believe in giving time limits, but talks about individual journeys. He also has additional problems such as heart disease and portal hypertension. It is awful to see him change so much and unable to do the things he used to do as he was always had so much energy. We are hoping the Rux will make a difference but he has been taking this for about two months now. Can anyone identify with his diagnosis and offer any information. Any advise appreciated. Thanks

[socrates_8]

Hey Goldfish...

I am really sorry to hear about you and your hubby's problems w/ MF.

I was also diagnosed w/ ET in 2016, that later became MF, and I also had such a horrid experience w/ both HU and uncoated aspirin that was thought to have contributed to my Portal Vein bleeding episodes etc...

However, once I went onto Ruxolitinib, and ceased taking HU, and uncoated aspirin. Things really did dramatically improve for me...

So much so, that I eventually changed my diet; stopped all inflammatory types of unprocessed foods, no added sugar, no softdrinks, no alcohol, I now do quite a lot of 'Intermittent Fasting' too, and started riding a cycle to assist me keeping myself active and muscle mobile. I am recently turned 60 yo, and while I do have some symptoms... I am so much better these days than I ever was on HU...

Maybe, he might benefit by being off HU for a while, or indeed altogether... many do... (?)

However, I am just a patient here too... and one likes to believe that our medical team really should be providing us w/ the very best medical advice...

In any event, I really hope for both of you that things improve as soon as humanly possible...

Best wishes

Steven

(Sydney)

[Goldfish212 in reply to socrates_8]

Thank you for your information and reply

[champ30]

Hi, I was diagnosed with high riskMF in September 2017.I also suffer with bronchiectasis.After 1 month of diagnosis of MF came a 2nd one of MDS( low risk).

As with all of us our fate and trust is with our haematologist.

I was on Ruxolitinib but having to have regular transfusions i,.e 2 bags every 4-6 weeks.I honestly thought I wasn't going to get better.The following April 2018 I was admitted to hospital with a bad chest infection and immediately needed not only introvenous antibiotics but 2 bags blood.

So now I'm being seen by the respitory doctor and my haematologist,who then as Ruxo is not agreeing with me changed me to lenalidomide.Initially on a high dose but now and have been for a while only on a5mg tablet alternate days.My bloods have been stable now since August 2018.The doctor keeps an eye on neutrophils as they tend to be low.

Hang on in there awhile with the rux,it seems to work for most people.Your haematologist will know if it's not going to suit.

I forgot to mention, apparently my MF followed undiagnosed ET.

Best wishes

Lynn

[Goldfish212 in reply to champ30]

Thank you so much for your reply. We weren't sure if there was another option if the Rux didn't work so its good to know that there are other things that can be considered.

[Goldfish212 in reply to champ30]

Hi Lynn. Again thanks for your recent reply. I was just wondering if you get or did get extreme exhaustion. Our life style has almost stopped at this time due to this and my partner is concerned that he will never get back to a more 'normal' type of living. We always used to love to travel but his tiredness prevents him from even a short shopping trip. We hope this might improve with medication but we are unsure of what the aggressive diagnosis really means. His haematologist does not believe in giving time expectations, and I do understand why this is, she just says that it is a journey that is individual to everyone, but I have been on Google and the DIPPS and they have offered indications of time Now I don't know what to think!!

[champ30 in reply to Goldfish212]

Hi,yes I was just the same.I felt my life was never going to improve and I could be anything near normal.

However I don't give up easily and even through our local cancer,Force,I got a referral to a gymnasium for some exercise,which is under supervision for individuals.I could only do a little but I felt better for it.

Look I found it all very worrying to begin with, but hang on in there and one day at a time.

As I said before , both of you work with his haematologist and tell them everything.

Regards Lynn

[katiewalsh]

Hi. I’m so sorry your partner is having such a bad time. Does he have an MPN specialist overseeing his treatment plan? If not, that might be helpful. He’s lucky to have you with him and I hope you’ll take care of yourself as well as him. Katie

[Goldfish212]

Hi. Yes he has an MPN but she is just part time and often does not answer our emails when we try to phone her. But his consultant is really good and sees him on a weekly basis.

[TrickyDicky]

Hi Goldfish212

sorry to hear the difficulties you're having. I hope you get the treatment sorted and his symptoms start to improve. There's good support on here. Have you considered attending one of the MPN forums, they can be really helpful.