Et progression to mf and bone marrow biopsy.

[soomoo]

Hi, I'm 49 and have et ( jak2 pos) for 7yrs. Been on hydroxycarbamide and anagrelide ,but transferring to interferon. Diagnosed with mf this week and very scared. Need fortnightly transfusions and bone marrow biopsy. Any support would be gratefully welcome. Also am self employed and concerned re finances. Sue x

[Rachelthepotter]

Dear Sue

. The MF transformation isn’t so bad: I’ve had MF for the past 3 yrs and once I’d got over the shock, in a way I was glad to have a reason for feeling so awful. Ruxolitinib helps me a lot, and it isn’t available for ET, usually, only for MF or PV, so the new diagnosis might open more drug options for you.

I’m older than you, and retired, , so I won’t have had the same work/finances issues, but there will likely be people here of your age who have had to deal with those things.

Do stay in touch with the group

Rachel

[soomoo in reply to Rachelthepotter]

Thankyou. That's made me feel a bit better. I meant to say bome marrow transfusion not biopsy ( had 2 of them!)

[Aneliv9 in reply to Rachelthepotter]

Did you have ET or PV before transformation?

[Rachelthepotter in reply to Aneliv9]

I think it was actually primary MF _ I hadn't had a diagnosis of ET confirmed before the BMB results came through with the MF diagnosis.

[Swede]

Hi,

I was diagnosed in April,after12 years with ET. It is very scary in the beginning,I was numb. Now I have met some SCT specialist doctors and that has been good. I am also self employed.

Regarding BMB ,the anticipation is worse than the procedure.

Just try....to not stress about it.I know it is very difficult but just try.

Continue to ask questions here if you feel the need.🙋‍♀️

[Aneliv9 in reply to Swede]

Why you said that after meeting with SCT specialists now is it better?? What doctors have been told you about your situation and how do you cope with fear of all these? Also how old are you?

[Aneliv9]

Why so quickly this transformation happened? Have you any clue?? What was the signs of progression?

[Swede]

Hi.I said that the meeting was good. Yes,the indepth information and communication is a very good thing so the knowledge and understanding helps a lot.

I have my moments when I am sad and worried but also ,as times goes on I learn to deal with things and not totally break down.

Let's say.. a person have a car accident and die....no chance to prepare.I have that opportunity! I value that.

Don't get me wrong,I have a wish to 'live forever'.

But when I just got the diagnose I was under the ice...

[Cja1956 in reply to Swede]

Hi Swede,

I know exactly how you feel. I saw an SCt specialist about 2 weeks ago And I felt much more hopeful and knowledgeable than before. He told me I was at intermediate one and I may or may not need a bone marrow transplant. He wants to me to do a bone marrow biopsy every year to monitor me. He was referred to me by my hematologist.

I wish you the best.

Cindy

[socrates_8]

Hey Sue...

I am also Post ET / MF & have been on Ruxolitinib now for just a tad under 3 years, and it really has given me back a reasonably Quality of Life (QoL).

I am just a tad confused though... Have you or are you having a Bone Marrow Biopsy (BMB) to first confirm bone marrow scarring, and then the MF ?

And does that mean that only your blood counts been relied upon thus far?

You mention Bone Marrow Transfusion, are you referring to Allogenic Stem Cell Transplant (ASCT)?

Rachel's comments might be useful to you if you are now MF because Ruxolitinib is the best known therapy, as far as I am aware in any event... Definitely worth raising the question with your consultant...

In any event, plenty of us still here even though we too are now MF...

Keep smiling & try to remain positive always Sue...

Best wishes

Steve

(Sydney)

[harleydavidson]

Hi Sue. No advice, just wanted you to know that I was thinking of you. Take care. Mel x

[Cja1956]

Hi, Sue,

We are in a similar position,, except that I’m older. I was diagnosed with ET Jak2 at 52 in 2008. My hematologist had me on hydoxy and then about 4 years ago he put me on ruxo as well. This past year and a half I was feeling really much worse and my numbers were really out of whack. He couldn’t figure out why. So I changed to an mpn specialist I found on mpnconnnect. had another bmb and tons of lab work snd was diagnosed in September with MF. There’s a new medication out called Fedratinib which I take every day along with hu. She took me off the ruxo for now.

I’m also self-employed so I’ve reduced my hours considerably. I also started taking naps in between appointments, if possible.

This is not an easy journey but try to stay positive. We are here for you.

Cindy

[jillydabrat]

Sue you should be applying for PIP, nobody should have to struggle financially with this condition. Get the forms and make an appointment with citizens advice who are invaluable in filing out these forms.

I can understand your fear about your progression. I hold my breath every time I go for my 10 week check incase my PV has progressed with MF.

Remember we are all here to talk to and support you.

Keep us up to date my lovely

Jill

xx

[Wyebird]

Hi, I feel for you. I can’t offer any words of advice. I’m bog standard Calr ET. Just want to send you hugs

[Threelions]

Just wanted to say that you’re in my thoughts and prayers. As someone Who is early in my ET Jak2 journey (coming up 1 year) I can’t really give any advice.

The only thing that I constantly think of, in more general terms, is that I won’t let my life be judged by the problems I’m given but more by the way I deal with the problems.

It’s easy for anyone to say “stay positive “ but harder to actually do it. With regard to finances I do know that Mc Millan can advise on this and that there hopefully may be assistance that is available. I too am self employed which in some ways is a help (choosing hours) but in others a difficulty (as there is no support )

I sincerely wish you all the best x