Newly diagnosed with Myelofibrosis

[7jborud]

My husband was recently diagnosed with myelofibrosis jak2 negative. We are being referred to Mayo clinic. At present he feels fine. Just wondering what they may do next?

[Rachelthepotter]

As you’ll see, MPNs are very diverse and even with the same diagnosis ( I have MF , but JAK +ve) we have very different experiences. So can’t really help with what might be next for your husband. The Mayo clinic is a world leader, so you'll get the best possible care there.

All the best.

Rachel

[jane13]

i would b looking for a risk assessment that will give u some guide as to how fast the disease is progressing. they may want a bone marrow biopsy to help with this. then discuss whether "watch and wait" - esp if low risk as sounds likely if he feels fine and no weight loss, night sweats etc. , or an appropriate drug regimen. if he is medium/high risk i would discuss going onto ruxolutinib esp if he has other symptoms like an enlarged spleen

good luck

[socrates_8]

Hey 7jborud...

I am also MF & Jak2- however, I am CALR positive. Perhaps the Mayo clinic will further screen him to asceratin as to whether or not your hubby has any other mutations. It is generally a good sign if he is still asymtomatic.

However, I was to learn sometime later that I had always had some type of symptoms, because they evolved somewhat gradually, I had just accepted them as my norm, for being normal, after many years I guess...

Anyways, the Mayo Clinic is a world leader, so I am sure he will be in very good hands.

Best wishes

Steve

(Sydney)

[MFBMT2011]

Hi from the uk.

Mayo? Couldn’t really be better. They could put him on watch and wait if he is early stage. Once he is assessed they might offer drug options to help with the symptoms although none are cures.

The only curative option is a stem cell transplant (SCT), a tough option but something that is recommended if the disease is moving quickly. It is not available to all, but worth looking at an early stage to understand it, in case it becomes a future option on which you have to decide.

There are people here from all stages of Myelofibrosis, I am one of the SCTers (Stem Cell transplantees) and was treated seven years ago. Good luck with your appointment.

Chris

[Wyebird]

Sorry to hear that your husband had an MPN. Very glad to hear he is being referred to the Mayo clinic. It’s recognised as a world leader in MPN’s.

[crapaud]

I assume that your husband has had a bone marrow biopsy to ascertain that he has MF - if he hasn't it'll probably be the next step. There will also be an analysis to see if he has other mutations.

Like Chris I underwent a SCT, but the treatments are so dependant on a whole load of variables and situations that nothing is certain.

Best of luck for the consultant discussion.

[P-O-T-S]

Hi 7jborud,

I'm sorry to hear of your husband's diagnosis. I too have recently been diagnosed with low-risk MF, I hope you are dealing with it better than my partner first did. It's quite a shock at first but the more you learn and understand the better you feel knowing that this is a chronic illness, I try to concentrate on that part first. I hope he gets a good plan in place soon. It sounds like you are in the right place (Mayo Clinic). There are lots of advancements in treating and trying to find a cure so the future isn't looking so bad I guess.

All the best, keep us updated.

Barry