Prefibrotic MF

[Cja1956]

So, I finally had my appointment with my hematologist to diagnose me after all my test the last two weeks. She says my ET has progressed to prefibrotic MF. She starting me on EPO injections every two weeks to try to bring up my red blood cells and continuing to take hydroxy and Jakafi. I’m a little nervous about the injections. Has anyone ever had them and what were your side effects? Any information would be appreciated.

[socrates_8]

Hey Cja...

Sorry to hear that you seem to be joining my little club of Post ET/MF...

I did not take the steroids when they offered them to me. However, we are all a tad different too, even while we might share many other similar features in our various MPN afflictions etc.

What combined Jakafi & HU dose are you presently on? And how long have you been taking them both?

My platelets, are stubbornly high, and have been now for some months, (900s). I have thought about a combination therapy, but I was greatly concerned about taking HU & Jakafi... Hence, naturally, I am curious as to how you are managing it at the present?

Do please stay in touch, and keep us posted as to how you are travelling from time to time...

Very best wishes

Steve

[Cja1956 in reply to socrates_8]

Thanks, Steve. So its really hard to say how taking HU and Jakafi together affects me. I never know if its the progression of the disease or the medication that affects me. I do know that this year has been exceptionally challenging because of my anemia and my high platelets. My EPO shots are supposed to bring up my red blood cells. I'm happy to say I had my first one yesterday and it was completely painless.

Best wishes,

Cindy

[socrates_8 in reply to Cja1956]

Hi Cindy...

Sadly, there are quite a few articles that I could cite to say that both the HU and Jakafi can have unwanted affects...

There is little doubt in my mind of their toxicity.

However, it also appears that alternatives are in short supply. My platelets are a real bugger too... I am going to be asking my specialist about trying Methtrexate, (which is really an arthritis drug), and see if that will work in combination w/ Ruxolitinib. I will never take HU again. However, we are all quite different...

Maz will tell you that HU is a wonder drug in her case...

I will let you know how I get on in due course Cja...

Best wishes

Steve

[Cja1956 in reply to socrates_8]

Hi, Steve,

Yes, I agree. When my first hematologist took me off hu about 3 months ago, I was so happy. But my platelets started to rise again. He put me on anagrelide instead. But then my red blood cells dropped even more. It seems like you can’t win no matter what you do. But I feel I’m in good hands now.

Please keep me posted on your progress.

Take care,

Cindy

[Aneliv9]

What changed in your blood counts and start suspecting MF?? Also do you have a grade of fibrosis?

[Cja1956 in reply to Aneliv9]

So my partner came with me to my appointment and recorded it. I just listened to it and I believe my doctor said I’m grade 2.

[Aneliv9]

Is there a possibility that always had prePMF and never ET?Also as far as I know, preMF, does not necessarily progresses to MF.. Am i wrong?? Have you ever done a BMB before or this was your first time?

[Cja1956 in reply to Aneliv9]

Good questions. This is my second BMB. My first one was 11 1/2 years ago. She said I did have some fibrosis even back then which I didn’t know because I wasn’t educated enough to ask those questions. But i did have the Jak2 mutation. I went to her because I’ve been anemic all year and my other hematologist couldn’t seem to get my anemia under control. My platelets have been in the 700s for about a year. She also wants me to have a consultation with another hospital now regarding a bone marrow transplant possibly within 2 to 5 years. So she is treating this much more aggressively than the other hematologist but she is an MPN specialist. It’s a little scary.

[Aneliv9 in reply to Cja1956]

I understand how scary can this be.. So what grade of fibrosis did you have back then? And she said "pre-fibrotic PMF", or PMF?

[Cja1956 in reply to Aneliv9]

Pre-fibrotic

[Aneliv9 in reply to Cja1956]

So it is not standard that it will transform to PMF. Isn't that what your doctor told you??

[tracey13]

My husband is post PV MF he takes two hydroxy a week and 500mg X2 a day of ruxolitanib.

His bloods are all in range .

Hope you get sorted.

[Cja1956 in reply to tracey13]

Thanks, Tracey13. I hope so,too. I wish continued success with your husband's treatment.

[harleydavidson]

Hi Cja. Sorry for your diagnosis but I'm glad you now have an MPN specialist. Good luck with the treatment. Mel x

[Fika500]

My husband has been on EPO injections since February and the result has been very good. His Hgb increased and he was less debilitated very quickly. He has Aranesp sureclick. I give him the injection ,which was scary at first but it’s fine once you get used to it. I downloaded leaflets explaining how to administer it and watched a few videos, which was helpful and five me more confidence. Some people may get a District Nurse to administer it but this is very tying as you don’t know when they’ll come etc. There don’t seem to be any bad side effects -most of the warnings in the leaflet relate to people with kidney failure , so not relevant to people with

Myelofibrosis. Good luck.

[Cja1956 in reply to Fika500]

Thanks for the encouragement. I had my first injection yesterday and it was completely painless and I feel fine.

[mhos61]

Hi Cindy,

I’m so sorry to hear that your ET has progressed. I imagine you must be feeling quite emotional with all this information to process.

The positive in all of this is you have clearly made the right decision to consult with an MPN Specialist. At least now you will be in expert hands. It’s understandable too how the discussion around a future SCT is ‘scary.’ I think most of us can relate to that. Hopefully, that will be many years from now, if at all.

I hope for now that the EPO injections improve your quality of life. Keep us updated.

Best Wishes

Mary x

[Cja1956 in reply to mhos61]

Thanks so much, Mary, for your support. I'm really confident with my new doctor. So, I'm just taking it day-by-day. I hope things are going well for you.

Take care,

Cindy

[Rachelthepotter]

Hi. I use EPO and it does a good job of keeping up my Hgb. Its a nuisance that it has to be kept refrigerated. No side effects from it, except that I can’t now compete in the Olympics. It isn’t a steroid .

Regards.

[Cja1956 in reply to Rachelthepotter]

Thanks for the information. It’s very encouraging. How often do you have to take it?

[Rachelthepotter in reply to Cja1956]

I injected EPO weekly. Which was a nuisance when I travelled as it needs to be kept chilled. I now use a variant called Aranesp which still needs to be kept chilled, but I inject it every 4 weeks. It keeps my Hgb levels up, but I I actually feel much better after a blood transfusion.