Ruxilitinib and members experience of it

Going through treatment
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From Jumbo4:-

Ruxilitinib
My haematologist says I will not be kept on the same drug regime after my platelets rise above 600. I will probably have a bone marrow biopsy and if the transition from ET to MF is confirmed I will be put on ruxilitinib.
I don’t know much about ruxi but have read that quite a few patients give it up.

I would be interested to hear people’s experiences of ruxilitinib for MF.

Jumbo4

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Hi @jumbo4, I cannot answer your question.
Entering the unknown must be a scary time for you.
It might be worth talking to the support line you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk and perhaps someone else might be able to share their personal experiences.
Take lots of care and please let us know how you get on.

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Erica

Thanks for your response. I have a bit of time yet as it could take twelve months for this change of medication to be started. I will nevertheless be glad to hear of any experiences if they are offered.

Jumbo4

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Hi @jumbo4 just to let you know we are here to support you all the way along your treatment planning, treatment and beyond.
What I have noticed is that often no matter what we are going through, our diagnosis, treatment and practicalities we seem to share the same fears, thoughts and feelings and that is also how we can support each other, so please keep posting.

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I have been on Ruxilitinib for over two years now. I have had a few problems but it is well worth sticking with as I do have a much better quality of life.

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Hi @Mark a great big welcome to our forum, I find it supportive and I hope you will too. You have already supported @jumbo4 with information about your experiences.
I look forward to hearing more about you.
Take care

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Hello @jumbo4 and @Mark. It is good to hear from people in similar situations. I have myelofibrosis. I was originally diagnosed in 1992 with an MPN that had features of ET and MF but in 2015 a further bone marrow biopsy confirmed that my disease had transformed to MF with no longer any features of ET. In 2017 I was started on Ruxolitinib and have been on it ever since. Initially my blood counts dropped quite sharply. In particular my Hb dropped very low and I needed a transfusion of red blood cells. It took a while to find the correct maintenance dose. On the plus side it has helped to reduce my enlarged spleen and also reduced some of the bone pain that I suffer from. Overall I would say it has been beneficial. Hope this helps. Warm wishes. Willow

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Thanks Willow. You seem to have survived a long time on blood cancer. Well done! Jumbo4

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Thanks Mark. I assume you must have had MF some time but been on a less satisfactory medication regime?

Jumbo4

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I was diagnosed with MF in November 2019 and prescribed Ruxilitinib in February 2020. Overall I have had a very good response to the drug, reduction in spleen size and stable blood test results since October 2020. I have more energy and walk between 4 - 6 miles every day. Stay positive and hopefully you’ll experience positive benefits from the medication.

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Thank you for that’s encouraging news I hope it continues that way. Perhaps you are younger than me. I have had ET for s few years but it may be changing to ET. Jumbo,4.

t.

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Thanks @Jstubbings for your experiences of being on Ruxilitinib that is what our forum is all about.
That is a good walk every day, gives you fresh air, helps your fitness and it’s free, sounds good to me.
Take care and keep posting.

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How are you doing, any updates and feeling @jumbo4?

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I was diagnosed with primary MF in late 2019. Since then I have just been monitored. They are now looking at treatment and obviously Ruxo is one of them. Currently I am under the Church Hill in Oxford and have been very impressed with them. We are now looking at possibility of BMT but that will depend on my fitness and suitable donor. I am coming up 69 and I suspect Ruxo will be the short term answer possibly linked to a trial. Has anyone any info on BMT success or otherwise? I am encouraged by the comments above thank you.

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Hi @davidmynors, we’re glad to hear that your impressed with the care at Churchill in Oxford. You have done the right thing in reaching out to other members about their experiences of going through bone marrow transplant. There are many factors that play a role in the success of this treatment option. We have a little bit of information on out website which we hope is useful here: Myelofibrosis treatment and side effects | Blood Cancer UK.

We hope that there may be members on here you have been in a similar situation who maybe able to share their insight and experience. If we can be of any further support, our Support Services Team are always here: https://bloodcancer.org.uk/support-for-you/talk-blood-cancer.

Best Wishes
Bav

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Erica
Nothing has changed I will not be on ruxi. for a few months yet. I did get a note from the haematologist about what my blood looked like under the microscope. Some agglutination of red cells but no haemolysis. I am putting it out of mind for now but was encouraged by people’s responses.

Jumbo4

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Hi @jumbo4, please keep checking in and take care.

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Hi again. Hope everyone is coping. I had my first biopsy to confirm mylofibrosis on the 20th of February, which was not conclusive. I then had my second one on the 17th of March and I am still waiting for the full result. Today my haemotologist recommends starting on Ruxolitinib, and i am interested in getting feedback from anyone already taking this. I’ve read that one effect is weight gain, which i would find hard, any suggestions, not only on weight gain, but in general. Thanks everyone.

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Really sorry to read of that likely diagnosis, @CarolCull. We’re part of the same Myeloproliferative neoplasms (MPN) family, if that’s any comfort. Diagnosis has been a long time coming, it would seem, with all the testing you’ve experienced but now you know what you’re living with at least. Maybe that’s a sort of relief? I hope you’re feeling okay.

I’m sure you can find others who are taking ruxolitinib as I’ve noticed it mentioned on here more often. So maybe look it up as a key word in the magnifying glass :mag: search box and you’ll find other comments.

I’ve also read about it being linked to weight gain, and maybe I’m in the minority here but I’d rather have a bit of extra protective padding these days than the opposite! I’ll look through my notes and share anything relevant.

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Thanks for replying Duncan. I agree weight gain is such a minor problem, when you put it in the bigger picture. I have no idea how long I’ll be taking the meds for, is it a long term thing and does it eventually end up with stem cell transplant. I’ll keep you informed. Carol

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