MF

[indy22]

My ET has progressed to MF just found out today , hematologist going to decide what medication to start me on to go back in a months time .

[Otterfield]

I'm so sorry to hear that. I remember the shock I felt when I first got my MF diagnosis after a reasonably healthy 19 years with ET. I am on Ruxolitinib and it is fantastic so far. It is perfectly possible to live a good quality life with MF so don't despair. Best wishes to you, Jennie

[Windy51 in reply to Otterfield]

What is MF I have ET I’m waiting on results from a three month blood test use to be one month I have been on Hydrea for year I have Jack 2 neg

[Otterfield in reply to Windy51]

Myelofibrosis - you get scar tissue in the bone marrow. Some people with ET and PV progress to this. Lots of info on MPN Voice.

[indy22 in reply to Otterfield]

Thanks 😊 I am sure my haematologist mentioned Ruxolitinib but I will let you know what medication i get put on .

[Annula in reply to indy22]

Good luck indi22 - try not to be too anxious-I have ET - diagnosed in January this year. Didn't know things could progress - but at least your doc seems to be on the ball!

[Pte82]

indy22, it would be advantageous to be referred to a MPN specialist. Also inquire about stem cell transplant, the only current cure.

[indy22 in reply to Pte82]

Never even knew this , would I get that treatment on NHS?

[Otterfield in reply to indy22]

Yes it would be on the NHS. I am going through the initial tests for it at the moment but I am still very scared and undecided about the idea, especially as I am so well at the moment. To be honest, as you are newly diagnosed, I suggest you don't think too much about SCT yet - just get used to the diagnosis and whatever medication is prescribed first. And definitely try to get at least one consultation with an MPN specialist. My regular haematologist arranged that for me.

[Annula]

Stem cell transplant sounds very positive....

[Pte82 in reply to Annula]

Yes Annula, it's important to understand progression and the limitations of the current drugs. If a patient is in good health the transplant needs to be given top consideration before being deemed a non-candidate. Find out about stem cell sources and which one is best for you. Also, study the vagus nerve. It's your connection to the brain for many processes including the inflammatory reflex and digestion. Deficiencies of thiamine and magnesium will cause the vagus nerve to become dysfunctional leading to possible impact on overall health and being a transplant candidate. Strange as it may sound, high dose thiamine has an important role in transplant success. This link contains information on anti thiamine factors. Always consult your health care professionals before using any supplement.

stuttersense.blogspot.com/2...

[Cja1956]

Sorry to hear this. It’s very upsetting when you first get the news. I was diagnosed with ET in 2008, and MF in 2019, after switching to an mpn specialist. I was on an emotional roller coaster for a few months afterwards. but now I’ve accepted it. What were your symptoms? How was it diagnosed? I hope you find the proper treatment. Please keep us updated on your progress.

[indy22 in reply to Cja1956]

I got diagnosed with ET about 10 year ago I got BMB to confirm . I have been attending appointments every 6 months since to get bloods checked , only symptoms that changed was body more sore and itching so my heamotologist wanted another BMB to check if there was a change and there was . My heamotologist will sit with other colleagues to discuss my case and decide what treatment is best for me, I will find out in couple of weeks .

[Cja1956 in reply to indy22]

, Let us now. Also, good luck on your next BMB. Remember, whatever it is, there are several options for treatment. I wish you well.

[indy22 in reply to Cja1956]

I have already had BMB and I now have MF!

[Cja1956 in reply to indy22]

Sorry, I knew that. It’s my brain fog kicking in. 🤔

[indy22 in reply to Cja1956]

That's OK 👌☺

[Rachelthepotter]

Dear Indy22, It’s a shock , for sure. However , like lots of others on this site I’ve been on ruxolitinib for MF for a few years now , and it normalises my blood counts. I still get bouts of fatigue, but I did before. Two things to be aware of.

1. If you have previous sun exposure,

watch out for skin cancers - rux has a nasty habit of triggering or reactivating aggressive sarcomatoid sccs.

2. Rux often drops Haemoglobin/ Hematocrit levels and increases fatigue - initially. If that happens and fails to improve , EPO can help.

Actually 3 things.

3 Rux interacts with various other drugs - some antibiotics, for example. No prob if you know.

OK 4.

4. More and more haematologists think that rux has a life lengthening effect.

Take care, and do stay in touch.

[indy22 in reply to Rachelthepotter]

Thanks I will need to remember this and I will definitely let you all know how I get on.

[Minu68]

Hi, my thoughts going out to you. I’ve got ET and this is what none of us would like to happen. I hope you keep sharing, that meds helps control it and that you’re as ok as can be given this x