Primary Myelofibrosis

Hi everyone
I have just joined. I was diagnosed with Primary Myelofibrosis 11 years ago and been just watch and wait taking only clopidogrel for platelets.
Gradually over the last 2 to 3 years my haemoglobin has dropped from 95 to 75 now. I feel absolutely fine not even tired but I know it’s dangerously low.
My consultant has now recommended I go on
Ruxolitinib Which I’m happy to do so. Well not happy obviously but think I need to go down this route. Is anyone else on this drug and do you have any side effects from taking it ?
Thank you
Nicola

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Hi @Nicki535 and a big welcome to the forum.
I have a different blood cancer but am hoping that other forum members will be able to share their experiences.
It must be tough having to start treatment, even though you know it’s the right thing to do.
I hope you have a good medical team who have been able to explain everything to you?

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Hello Nicola i have been on ruxolitinib for a year but unfortunately it stopped working and i had bone pain so was changed to fedratinib…i didnt have many side effects and we are all different .what works for one …im sure you will be fine and your care team will monitor you good luck

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Thank you.
Sorry you had to change your medication but hope it’s working for you now.
I recently went through a lot of stress looking after my Mum who had stage 4 bowel cancer. We moved in with her for several weeks until she died. I was so stressed and exhausted I’m sure this stress has been a turning point and sent my bloods in a downward spiral.
However it’s what it is so just have to go by the advice of the consultant. I may have to have blood transfusions as well but for the moment it’s just Ruxolitinib which I will start next week
Take care
Nicola

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Hello @Nicki535. Welcome to this forum. I hope you find it a supportive place - I am sure you will. I have had myelofibrosis for many years and started Ruxolitinib in 2018. It has eased my bone pain. Not completely but has made it more manageable. It has also reduced my spleen which was enlarged. It took a while to find the best dose for me. I take it twice a day. It has caused my haemoglobin (Hb) level to drop at times but the bone pain was so bad that I have had to accept that it affects my Hb. Consequently I have had to have quite a transfusions of red blood cells. It is always a fine balance trying to keep the Hb level as good as possible whilst managing the symptoms of the disease. Hope this helps. I wish you well. Willow x

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Thank you for the information.
I must say I’m quite anxious about it all especially when I have no symptoms whatsoever. My consultant can’t understand why I’m not feeling tired as my haemoglobin is now at 75. He thinks I must tolerate anaemia really well. I don’t have bone pain yet.
I’m glad to hear you tolerate Ruxolitinib well. That’s made me feel a bit better about it.
My consultant is looking into a new drug as my only symptom is anaemia, mono something or other but it’s not been approved by NICE yet so may go onto that one when it becomes available in the near future. He did say I may need some transfusions as I settle into this new medication.
Was a stem cell transplant an option for you or did you not want to go down that route ?
Obviously that’s been mentioned for the future as a possibility but again I’m quite reluctant to have that too ! Not sure what the success rate of that is with our condition
Thank you for replying to me
Best wishes
Nicola

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Hi @Nicki535 a great big welcome to our forum.
I hope others will be able to share their experiences.
I think that anything new is very scary.
I am so sorry to hear about the loss of your mum, it must have been such a stressful time.
You must be absolutely exhausted emotionally, psychologically and practically.
Now on top of this your blood tests have taken a spiral downwards.
Don’t forget the Blood Cancer UK support line is there for you if you would like to talk to someone on 0808 2080 888
Please be ever so kind to yourself and really look after yourself.
Please do let us know how you get on and keep posting.

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Hello again @Nicki535. A stem cell transplant wasn’t recommended in my case and to be honest I don’t know whether I would have wanted to go down that route. I was diagnosed thirty years ago and at that stage they couldn’t classify exactly what my disease was because it had features of Essential thrombocythemia (ET) and myelofibrosis. Obviously not that much was known about these diseases all those years ago. I was only in my thirties when I was diagnosed which was unusual. It has now transformed into myelofibrosis with no features of Essential thrombocythemia (ET). I am pleased you aren’t symptomatic with your anaemia. I find when mine drops to 80 I really notice it. It is interesting you mention the new drug. It might be Momelotinib. I have only just heard about it on this forum and am going to ask my haematologist about it when I go in September. I wish you well. Let us know how you get on, only if you want to of course. I wish they had this forum years ago when I was diagnosed. Warm wishes Willow x

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Thank you so much for your kind support

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Hi Willow

Yes that’s the drug. It’s specifically targeted for anaemia apparently. It has good results but my consultant thinks it quill be early next year when it’s available on the NHS.
You have done well to have this for nearly 30 years. When I first was diagnosed not through any symptoms but because I had a chest infection I thought after scouring the internet I would have only 5 years to live. I’m not sure how long I had it before but again I was first diagnosed with Essential thrombocythemia (ET) as my platelets were 11,000. Then they decided to do a few more tests nothing showed up until they did the bone marrow biopsy then it was confirmed.
So hope to live quite a number of years more fingers crossed.
Best wishes
Nicola

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Hi all just an update …i saw my consultant last friday who has suggested that as my white cells are on the up that we reduce the fedratinib from 300mgs to 200mgs daily and introduce interferon…im a bit anxious but my consultant has said to start on small dose at first.I have a very good rapport with consultant and trust her judgment although its my decision in the end

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Hi @Suzyq.
Thanks for the update.
I think any change to medication is a worry at first. What is good is that you trust your consultant. I think that’s so important isn’t it.
Please keep us updated on how you go on the new medication x

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Hi @Suzyq thanks for the update.
You say that you are a bit anxious, I think that is very natural, the unknown is scary.
You say it is your decision, perhaps give yourself time and write down all the questions you would like to ask.
Have you got a medical contact that you can contact. with your questions.
Please do let us know how you get on and really look after yourself

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Hi erica i have a specialist nurse who is brilliant …i see my consultant every 4 weeks face to face appointments…i have spoken to my nurse and she gave me loads of information to think about

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Hi @Suzyq oh, I am so, so glad your specialist nurse is brilliant and also your consultant sounds great too with face to face appointments.
Take your time reading all your information and please do keep posting.
Look after yourself.

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How’s the new medication going @Suzyq?

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Hi nichola i havent started on interferon yet yet im seeing consultant in 3 weeks to ssee how i am and how i feel about interferon pegasys…i will give update when i start this drug thank you for asking

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Hi Nicki535
Sorry I have not contributed earlier but I have only just picked up this thread. I am 70 years of age. I was diagnosed with Primary Myelofibrosis in late 2019 and am still going strong! Initially I was a watch and wait but as my Hb started to deteriorate and spleen enlarged I was placed on Ruxilitinib. I tolerated this well and spleen reduced in size and Hb was initially fairly stable. Sweats and bone ache were virtually eliminated. As time progressed my Hb did not hold up and at the end of last year and early this year I was requiring red blood transfusions every 3 or 4 weeks. Since April I have been taking Momelotinib on compassionate grounds. My last blood transfusion was in May i.e.no transfusions for 16 weeks!!! It took a couple of weeks to settle down with the new drug but so far so good. Good Luck.

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Great to hear from you @davidmynors, you must have been diagnosed just before Covid times which I would say cannot have been easy and very isolating for you.
Glad to hear that you are still going strong, look after yourself and please keep posting

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Hi David

Thank you for replying and glad you are getting on well and more settled.
My consultant tried to get me on Monolitinib on compassionate grounds because anaemia is my only problem and it targets that better.
But couldn’t do at present so I’m starting Ruxolotinib for the time being.
Glad you had very few side effects and tolerated it well initially. That has reassured me further. I’ve emailed my consultant re my dosage as suddenly out on 20mg twice a day which I thought seemed pretty high but it may well be correct.
I will let you know how I get on taking this new drug. Good news no transfusions for quite a number of weeks for you
Kind regards
Nicola

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