ET and Myelofibrosis

[Coradelphine]

Is there any others out there with both of the above? I just wanted to compare note

Sue

[wendycu]

Hi Sue,

I have just found out I have Myelofibrosis, I’ve had E.T for 11 years.

The Doctors are watching over me every 2 months, they are not doing any treatment yet, I’ve had a scan on my spleen and liver, no results back on the scan.

They only done a test because I told them I wasn’t feeling well, really tired, bad bone ache and night sweats. I’ve had high blood platelets (over 600) for 2 years, and the doctor said “we should have done this test earlier.”

If my bloods go up any time I will have to have a bone marrow transplant.

Xx

[Coradelphine in reply to wendycu]

Thank you so much for your reply. Can I ask you how you feel generally?

I take it you’re only young as you mention having a bone marrow transplant. I’m past that age!

Usually I can keep this disease in perspective- I tell myself as there’s no cure and I’m stable I can forget about it but, when I feel down it overwhelms me and I realise I know nothing about it.

I see my haematologist every 12 weeks and am on anagralide and clopidogrel.

It hard isn’t it when there are so few of us with this combination?

Hope all goes well and you get a transplant xxx

[wendycu in reply to Coradelphine]

I’m 44 yrs old. I live my life day to day, I had a blood clot in my brain 13yrs ago, I had 2 hours to live. I never gave up. My daughters were only 6 & 5 yrs old. I only been with Sean 6months, he stood by me and now married 11yrs this year.

I felt tired a lot with E.T but a few months ago I knew I wasn’t right.

I take 300mg aspirin a day and 1500mg of hydroxyurea a day.

I’ve searched the Internet for information which has help my understand MF and what treatment I may have to have. I know it will take me a few weeks to get over the shock but I’m going to get my self back on track and live Day to Day again, I know I can’t do what I used to do because of the bone ache. ( one step at a time) I’m a strong person (I’ve had to be for years) this is what gets me through.

I hope you feel well soon.

Here’s to a cure and our treatments go well in the meantime. Xx

[beetle]

My ET progressed to MF. Is that what you mean?

[Coradelphine in reply to beetle]

Yes that’s the one, there doesn’t seem to be many of us about!!

What stage are you at? Sorry it’s a bit personal I’m trying to piece together a progression of the disease. I can’t find much on the internet, any suggestions?

I’ve just been jogging along I feel very tired 💤 but I suppose that’s the anaemia I’ve just recently had a transfusion and have had several bone marrow biopsy’s I see my haematologist every 12 weeks and am stable . That’s all I get when I go to clinic ‘bloods ok see you in 12weeks’

Hope you’re keeping well

Sue 🤔

[beetle in reply to Coradelphine]

Hi Sue. I was diagnosed with ET in 1994 and MF in 2012. I am on Ruxolitinib and needing transfusions every 4 weeks. My platelets are now rediculously low at 39 and neutrophils dodgy at 0.7 or thereabouts. I see my consultant every four weeks as he is only allowed to prescribe Ruxolitinib for four weeks - in case I croak and they waste their money!!!! I have recently seen Prof Harrison in London again and I’m waiting for results of feriscan and genetic testing.

I think the percentage of folk with ET that progress to MF is thankfully relatively small and that is why we are quite rare. I get very tired and also breathless when I need a transfusion. I’m getting more noticeable bone pain and spleen pain so I know the disease is steadily marching on. I am not a candidate for SCT and I’m now 68. I just take life a day at a time and have stopped sweating the small stuff! I have a supportive partner and four grown up supportive sons so I consider myself blessed

Very best wishes, Jan

[Strumpshaw]

Hi Sue,

I was diagnosed with ET back in 1992; developed gout summer 2015, spleen started enlarging soon after, had a dry tap bmb Autumn 2015, and diagnosed with secondary MF January 2016. Now on Ruxolitinib.

Mike

[Cmg5935]

Hi, I was diagnosed a year ago with ET and secondary MF (mild). The MF was confirmed with a bone marrow biopsy. I’m triple negative for gene mutation and currently being treated with only aspirin, folic acid and B12.

I actually came across an interesting article about a study regarding slowing the progression of MF (mpns) by lowering the inflammation in our bodies.

curetoday.com/articles/inve...

Hope you find it a helpful read.

Best,

Christina

[Aneliv9 in reply to Cmg5935]

hello. Is your ET/MF stable or did you have a transplant.?

[Norman45]

Hi Coradelphine,

What a great name!

I was diagnosed with ET in 2011 aged 66 after four years of going to the GP complaining about fatigue. Only diagnosed with ET by chance after a hernia operation.

Two years ago had a bone marrow biopsy and it showed stage 3 scarring (the worst case) and diagnosed with post-ET MF. Probably had MF for two or three year undiagnosed.

Started off on Hydroxy for 18 months initially in 2011, then Anagrelide for four years and once MF was diagnosed went onto Ruxolitinib which had just been approved by NICE.

Ruxolitinib is the only current approved drug for MF but research is starting to show there can be problems and side affects not seen fully in the early trials.

Pacritinib is under development and is another drug that can target MF. Hopefully we MF sufferers will get it sooner rather than later.

Hope this helps you.

[socrates_8]

Hey Coradelphine...

My name is Steven. I was originally diagnosed in 2016 w/ ET but then shortly thereafter a BMB, (stage 2 scarring) I too was reclassified as MF.

Initially, & before the BMB, I was on HU, then Interferon Alpha (both of which I struggled to tolerate), and then after the BMB was put on Ruxolitinib (or Jakafi) 25mg bd, with Low dose asprin because my platelets are rarely below 750.

My initial reaction to Jakafi was very good, as I felt better than I had for quite some time. Less fatigue etc... However, I have also suffered from severe anemia & severe bone pain. Happily, things are just a tad better at the present, and naturally I always endeavour to remain optimistic.

Hope something here helps...

Best wishes

Steve (Sydney)