Bone marrow biopsy results. : Today I received the... - MPN Voice

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Bone marrow biopsy results.

MCW22 profile image
25 Replies

Today I received the news I was expecting. My PV has progressed to MF. Although the signs have been building up in my blood results for some time, I am nevertheless devastated to have it confirmed. 3 weeks ago my hb was 99 today it was 92 My consultant told me it wouldn't hurt to continue with the iron tablets she prescribed although she doesn't think they will have much effect. I go back in a month, by which time she will be able to tell me if I need weekly injections to increase the red cells. Any information from others in the same situation would be greatly appreciated.

Carol

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MCW22 profile image
MCW22
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25 Replies
clubdino profile image
clubdino

Hello dear. Although I don't have any advice I just want to say I am sorry about your progression to MF. I know you've been concerned about it for some time but having it confirmed must be incredibly difficult. My thoughts remain with you. ❤️

westlieght profile image
westlieght

Ho carol

I also had to receive the news I’ve gone from ET to MF now dependent Transfusions , all has been good over the last two years my this continue ,who knows when there will be a change . I hope your new Journey will be good to you .

Cja1956 profile image
Cja1956

Sorry to hear this. My ET transformed to MF in 2019. Just make sure that you’re seeing MPN specialist who knows about the new medications that have come out in the last four years and what they treat best.

I wish you all the best in your new journey.

MCW22 profile image
MCW22 in reply toCja1956

Can you tell me what medications those are?

Cja1956 profile image
Cja1956 in reply toMCW22

Well, the most recent one is momalatinib (Ojjaara). There’s also pacritinib, Fedratinib and Inrebic. Jakafi has been around for a while which I take now. You can also have EPO injections which I do, as well. Other people may require transfusions if their hemoglobin goes too low.

MCW22 profile image
MCW22 in reply toCja1956

I've been on jakafi a few years. Weekly injections were mentioned in order to stave off transfusions till later. I will find out when I go back in a month. I will make a list of those drugs, do some research on them and ask about them at the next appointment. Thank you.

Gipsy123 profile image
Gipsy123

Dear Carol,

I’ve had MF diagnosed 7 years ago, and I take ruxolitinib 15 mg twice a day: I was very fatigued and anaemic and needed transfusions. I’ve recently started weekly EPO (erythropoietin) injections , which are keeping my haemoglobin counts normal without needing blood transfusions, and I feel much more energetic. I hope thus helps you.

MCW22 profile image
MCW22 in reply toGipsy123

Thank you. This may be the next step for me. I will find out in a month. If so I may need to pick your brains about it. I'm already on ruxolitinib.

hunter5582 profile image
hunter5582

Sorry to hear about the progression to MF. The progress being made in MPN testament is very hopeful. Perhaps one of the existing or emerging treatments will be the right approach for you. Wishing you success in managing the condition.

Threestreams profile image
Threestreams in reply tohunter5582

Hello .. I am not sure about ET and how it transforms to other blood disorders .. I ET with the calr .. I thought that was it .. do they all eventually transform . Thanks Trudy

lizzziep profile image
lizzziep in reply toThreestreams

I was ET with Calr, was treated for that for about 12 years, then diagnosed with MF earlier this year. Now on jakafi and EPO injections.

Threestreams profile image
Threestreams in reply tolizzziep

Thank you fur the reply .. presently I feel great .. much better after the diagnosis and starting medication .. settled most of my symptoms .. fatigue brain fog weight loss … just wondering what symptoms changed did you prior to the new diagnosis ? 🙏

lizzziep profile image
lizzziep in reply toThreestreams

I didn’t really have any symptoms apart from anaemia and could feel my spleen. Certainly no weight loss (I wish) I felt great when I started on peg, then my haemoglobin dropped drastically, that was just after my covid jab!! was taken off peg, now on Rux and EPO injections. Ok on that so far.

monarch5000 profile image
monarch5000

In Denmark, (see below) interferon has been offered to newly diagnosed PV patients since about 2010 to prevent alot of cases of progression to MF. The Brits have stubbornly refused to follow their lead.

.
lizzziep profile image
lizzziep

I had ET for around 12 years, diagnosed MF earlier this year. My haemoglobin dropped dramatically but after 3 transfusions and twice weekly EPO injections it is slowly climbing back towards normal levels.

Hope all goes well for you.

Carol0925 profile image
Carol0925

So sorry to read this. I’m new to all this, but it seems there are some different drugs to research. I wish all the very best on your journey and good luck at your next appointment. I’m Carol too. 🤞🤞

Wyebird profile image
Wyebird

sending Christmas wishes and lots of hugs. May you find the strength to adjust to this upsetting news.

Mal42 profile image
Mal42

sorry to hear about your progression to MF. It seems there are quite a few of us. I too have had a progression from PV, it must be 3 years ago now. My haemoglobin is going down. Thank you all for sharing info. It is helpful.

Mal

ciye profile image
ciye

Sorry to hear this. I am sure you will get plenty of advise from people on here.

tracey13 profile image
tracey13

Sorry to hear about your progression.

My husband had PV in 2018 he had this for 10 years the hydroxy was absolutely draining him after two years being on it . He was iron deficient and was at rock bottom.

He managed the first 3 years just having a pint of blood taken off every month.

He had a bone marrow biopsy November 2018 his results should primary MF . So now he's post PV Primary MF.

He then went to see the stem cell transplant team who said he was nowhere near needing a transplant. They ran all the test he's got 10 unrelated 10/10 donors on the register which is reassuring.

My husband was put on ruxolitnib it's really changed his quality of life .

He's been on this since Feb 2019 all his bloods are in normal range now .

He works full time he's now 51 years old .

He takes a baby aspirin, lanzopersole and 20mg morning and at night of ruxolitnib.

He does get generally tied at night but in all he has a demanding job.

We were worried sick when he progressed but In All we have now accepted this and he remains fit and well.

He has three monthly blood checks and 6mthly reviews now so this is all positive .

Tracey

MCW22 profile image
MCW22 in reply totracey13

I've been on ruxolitinib a few years. My consultant said that due to my age (71) and poor past medical history a stem cell transplant would be too much for me and I agree.

tracey13 profile image
tracey13 in reply toMCW22

I think a stem cell transplant is a very last decision if all else fails.

My husband is happy to be on medication ruxolitnib is working well for him there's other medication on the market now.

Hopefully one day they will have a cure 🤞🤞.

Tracey

Yanks7 profile image
Yanks7 in reply totracey13

Thank you for taking the time to tell us about your husband's experience and continued good luck to you both.

LT55 profile image
LT55

So sorry to hear about the progression. I think that is one of the things all of us are fearful of, so we all feel for you. It is lovely to have this forum to support us with words of encouragement as well as sharing experiences regarding treatment, etc. I hope your symptoms remain mild for a very, very long time!

marlenablue profile image
marlenablue

I got this diagnosis (PV to MF) exactly 1 year ago to the day - I am 53. I am not being treated currently as my only symptom is an enlarged spleen that doesn't cause any issues for me at this time. My only advice is to get an MPN specialist and that this site is superb for support. Reading through all these responses is eye opening in terms of how well people are surviving with treatments. Knowing that there are other treatments on the way is also comforting. Best of luck to you!!

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