Newly diagnoses with Myelofibrosis ( previously ET)

[Mrs_Average]

HI everyone. I just got the diagnosis this week and it has been a real shock.

I am 47 and have had ET for 3 years. At my last check up I was anaemic which has lead to further investigations. I am due to have further tests including a BMB soon to help me understand the prognosis.

I am feeling a bit overwhelmed by this news and quite lost. Hoping to hear from other MF patients to understand how this affects you and your day to day life? I work full time and have a young family. Just trying to get my head around this..

Thank you for any advice you can share..

[rubyrubyruby]

Hi. Just wanted to say how sorry I am to hear that your ET has progressed to MF at such a young age. I am 41 and although diagnosed 4 years ago, I suspect that I have had it for at least 10! I can completely understand your feelings with having a young family and, I assume, a busy life too.

I really hope that it stays at a stable level and doesn't cause you any further problems.

Take care

[Mrs_Average in reply to rubyrubyruby]

Hi Ruby, thank you. I do upper your ET also remains stable and enables you to do all that you want in life. All the best

[Norar]

Hi, I also had ET. But had it a long time 13 years it's now turned to MF. This year have a large spleen wich is very uncomfortable pain under ribs anemia . I have started on Jakavi to shrink it & I feel so much better. Only been on it three weeks but has made my life much better.

[Mrs_Average in reply to Norar]

Thank you Norar. So good to hear that the Jakavi is helping. I hope it continues to give relief. Thank you for sharing.

[JediReject]

Hello Mrs Average (housewife 47?). . . I'm sorry to read of your transformation to MF but try not to worry too much at the moment. The results from your biopsy will provide valuable info on the way forward. As you will likely have read on here MF cn be managed with drugs for many years and I know peops who have had it for over 20 years. And now of course there is Ruxolitinib as an option and other drugs in development.

Prior to my BMT I had MF for 11 years , 9 of which I took Hydrxycarbomide and then Ruxolitinib. My main symptoms were a high white cell count initially (hence Myelo proliferative neoplasm MPN where you over produce cells) then fluctuating blood counts, a very large spleen which grew over the years, fatigue., and some marrow fibrosis again over the years.

Because the marrow function is eventually impaired in MF much blood production then takes place in the spleen and liver, I don't know much detail but I think some of the cells don't fully form so maybe don't carry enough oxygen which makes you tired. But ask your consultant some of the tricky questions as I might be talking bobbins or half truths.

The main thing is many MF sufferers lead reasonably normal lives for many years either on watch and wait or with the right drug dosage. I opted for a Bone Marrow Transplant BMT last year as my MF was graded intermediate / high risk but I did well with 10 years because I presented with high cell count, fatigue, itching and swollen spleen at diagnosis whereas many develop symptoms over time and these are managed by drugs to minimise their impact. It's important to remember with MF that drugs can control or manage symptoms only and not the underlying MF though this might change with drugs in development and maybe long term use of Ruxolitinib but I don't know if this can yet be proved.

If you wish to ask me anything about MF I will do my best to help. Please don't panic. Chris

[Mrs_Average in reply to JediReject]

Thank you Chris. I really appreciate your reply. It really helps to know that this can be manageable. I am panicking a bit, finding it hard not too... my symptoms are minor right now. I have slight anaemia, some fatigue but it hasn't got in the way yet. I have some sensation from my spleen.. overall hoping the genetic tests and bmb show early stages and slow progression. Fingers crossed. Thank you for offering to help with other questions. Great to hear that you had a successful BMT too. Katherine

[Mrs_Average in reply to Mrs_Average]

Also I hope that things continue to go well for you. I just read your other post review healthy eating.. All the best

[JediReject in reply to Mrs_Average]

Thanks Katherine. . We're all here to help. Especially newly diagnosed peops like you. I recall i shed about a stone worrying as I waited a fortnight for my diagnosis as i didnt know if it meant I was going to die any time soon, I just knew my life would change and it was serious. Also I couldn't believe it , just felt like bad dream.

You can go through stages like grieving , denial, anger (why me !!) , bargaining, depression and finally acceptance. . So don't worry if you find it hard to cope with at times. . I booked in with the clinic Psychologist and saw her for many years to chat about how I felt rather than burden my hard pressed wife with it all.

Please keep in touch. Chris

[markokrist in reply to JediReject]

Hi Chris!

My mom is on Jakavi and apparently it stopped working,because spleen is enlarging and she suffers big pain from that, how big is your spleen? Doctor decided to put her on Hydrea as well,so waiting for some improvement, but I feel so useless, because she is in pain, but I can`t do anything.

[JediReject in reply to markokrist]

I'm sorry to hear of your mums painful spleen it can be really hard to deal with watching ones loved ones suffer and feeling helpless. . It's encouraging that her Doc is at least trying a dual approach with her meds. Your mum may need further investigation via ultra sound or similar to see if anything else is going on.

Since my Stem Cell Transplant my spleen still niggles a bit but is smaller both in length and more significantly volume. So it used to be about 22 cms and is now about 15cms according to a recent Ultrasound.

I hope things improve soon but if they don't please seek further advice.

Regards - Chris

[markokrist in reply to JediReject]

Thanks,Chris!

In our country MF is very rare condition (Latvia),we have only 2-3 patients with such diagnosis and only one doctor who knows something (a little)about it,so she is constantly experimenting,not being sure what she is doing,that’s why we have plenty of questions without answers and no one to turn to for advice.

All best for you!

[beetle]

I agree with all Chris has said - I don't think he is talking "bobbins"! (That's a new one on me!). I progressed from ET of 17+ years to MF four years ago and have been on Ruxoloitinib for three years now. At 66 I am much older than you but had four children under 12 at diagnosis and just got on with life, taking the tablets as directed. I am now retired and my children are all grown up and independent and the biggest problem I face is fatigue but sometimes wonder if it is because I do not have the same motivation to keep as busy as I was? I have been recommended not to have a BMT because of my age and have been content to accept that decision but it might have been different if I was younger. I do not have a sibling match and at the time I was considering transplant a worldwide search did not come up with a 10/10 match so that also made my decision easier. The progression diagnosis is a lot to take in but there are many folk around who go on for many years even after progression. Remember we are all here to offer support with whatever comes your way. Very best wishes, Jan

[JediReject in reply to beetle]

Lovely reassuring post Jan , I was hoping you might respond as you are living proof that one can survive and lead a good life with MPN raising a family etc alongside. You certainly inspire me.

Your fatigue may indeed be due to the fact the less on the go you are the more tired you can feel. Interesting to read your BMT decision which as you say makes it easier if no suitable donor is found, unless you REALLY need one of course. Don't forget though that BMT is a very invasive procedure and not without risk, and there are no guarantees it will work. So you've done well and long may you continue to do so. . .

I quite oft chat a load of "bobbins" but usually to myself. . . Could be a Mancunian colloquialism. Chris

[beetle in reply to JediReject]

I had some very frank and interesting talks with the transplant team before I made my decision about BMT. I asked loads of questions of course but the last one was "if I was your mother would you recommend I go for it" and the answer came emphatically no. That was enough for me and I stopped agonising over the decision. I have seen posts where people have sailed through without much difficulty and you are an example of the other side of the coin. As you say it is invasive and not guaranteed and I have been rooting for you all the way - I guess in part as I have been thinking all the way this could be me. I'm not sure I would have been able to show the same humour and fortitude that you have shown so I know I have made the right decision. I'm still praying for the next successful drug - for others even if it is too late for me.

Keep travelling along your road to recovery and may the rest of the humps along the way be no bigger than bobbins😀! Best wishes, Jan xx

[Andrew8]

Was diagnosed with ET early last year, put on hydroxyc, but after extreme fatigue change to anagrelide, developed heart rhythm problems, still getting treatment, and after another bone marrow biopsy, diagnosed with myelofibrosis in May this year, now on ruxolitinib, but developed shingles at beginning of this month (August ) . Struggling.