Hi Everybody. I am desperately after some support/advice/reassurance from the wonderful people on this group. My husband has been back to the hospital today and they are now going to do a bone marrow biopsy next week as they think he may have myelofibrosis. He was diagnosed earlier this year with Polycythaemia vera (PV) and was due to start hydroxycarbamide. However, his bloods have changed and they now think he has myelofibrosis but the bone marrow biopsy will confirm this. we have not been given much information about this and i guess until he has had the biopsy and the results they are reluctant to give much more information. My question is this: can anybody on this forum please offer some advice about this potential diagnosis? Is the treatment more invasive than hydroxycarbamide? Is this condition manageable? I am at my wits end as i have done no research on this condition. We were very positive about the treatment for Polycythaemia vera (PV) and just wanted to get on with it so that my husband could start to feel better. I look forward to hearing your advice/views on this. Many thanks.
Hi there @Fiona2025
I’m copying this post I recently sent to another member of this group. In case your husband is diagnosed with MF here is a link to a Leukaemia Care online support meeting on that topic coming up next week which might be helpful to you.
“As it happens, there is an online support meeting on myelofibrosis hosted by leukaemia Care on 23rd October if you’re interested
Link to register here
Best wishes
ChrissyD
Hi Chrissy
Many thanks for this. I have registered and look forward to joining the meeting.
Regards
Fiona
Hi Fiona,
I’m sorry to hear about the change in your husband’s blood results and the uncertainty and worry this is understandably causing. I’m glad you’ve reached out for support on the forum and hope that you hear from others about their experiences.
Myelofibrosis (MF) is a chronic (slow-growing) type of blood cancer and there are a range of treatment options available. Some people with MF won’t need treatment straight away, whilst others are started on treatment more quickly. Most treatments aim to reduce the symptoms, lower the risk of complications like blood clots or bleeding, and stop the MF progressing. A small number of people will be offered a stem cell transplant, which would aim to cure the MF.
You can find out more about Myelofibrosis and it’s treatments on our website: Myelofibrosis (MF) | Blood Cancer UK
You’d also be very welcome to speak to our experienced Blood Cancer Nurses, if it would be helpful to talk things though in more detail: Blood cancer information and support by phone and email | Blood Cancer UK
Take care,
Tom
Support Services Manager
Hello again @Fiona2025, so your husband is now being tested for Myelofibrosis (MF) which is heartening—seems like his specialists know their stuff and are investigating. Essential thrombocythemia (ET), Polycythaemia vera (PV) and MF are closely related types of Myeloproliferative neoplasms (MPN), and can occasionally progress/transform from Essential thrombocythemia (ET) or Polycythaemia vera (PV) to MF, so here’s the Blood Cancer UK information about them: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
From my non-medical understanding, these Myeloproliferative neoplasms (MPN) are all chronic types of blood cancer and thus typically develop slowly, as opposed to more acute types. What my haematologist likes to remind me is that because treatments are so successful we’re more likely to pass away in old age with these Myeloproliferative neoplasms (MPN), rather than from them.
I’d say it’s great your husband is being tested thoroughly with a bone marrow biopsy (BMB) as his specialists will be able to really zoom in and see what’s going on at the source of cell production in his bone marrow. I had a BMB, as do most of us around the forum living with suspected Myeloproliferative neoplasms (MPN), and I’d say it was uncomfortable like having a tooth pulled under anaesthetic, if your husband knows that sensation. They aim to get bone and bone marrow samples from the pelvis via the lower back to analyse. He should ask for anaesthetic or it’ll likely be more uncomfortable, and it’s worth bearing in mind that for some people it’s actually painful.
Around the forum are many folks living well with Myeloproliferative neoplasms (MPN) like MF, perhaps have a look using the search box at the top as I find it reassuring reading how others are getting on after many years living with these dratted disorders. I know of one lovely forum member who’s lived with MF for something like 30 years, so please feel some reassurance that it can be managed.
As for treatments, they’ll be tailored to your husband’s blood test results and clotting risk. Clotting is our main risk with Myeloproliferative neoplasms (MPN). If he’s had any clotting events previously or is older than 60 then he’ll likely be classed as being at high risk of clotting and recommended cytoreductive treatment to disrupt/reduce the number of blood cells his body overproduces. Hydroxyurea isn’t typically given for MF, I believe ruxolitinib tends to be prescribed: Myelofibrosis (MF) treatment | Blood Cancer UK
It’s admirable that you’re researching your husband’s disorder but please try to take time for yourself too at this stressful time. Your husband is being checked and has specialists looking into things so you’ve done all the right stuff to get him what he needs. Time to tend to your own sanity, I’d say, then you’ll have more energy for the next steps following the further testing.
Don’t hesitate to ask more or check how others around the forum manage all this, you’re not alone in your worries @Fiona2025.
Hey Fiona. I am 36 and have Myelofibrosis. I’m currently on medication called Jakafi. It’s not been pleasant at all especially initially. Bone marrow transplants are getting better and better. Don’t be afraid it’s scary and rare but there’s plenty of positives (not finding many myself but other people assure me there are). Stay strong
Hi @Fiona2025 I was diagnosed with Myelofibrosis in 2023 age 63 after having Polycthemia Vera since 1998.
I had symptoms of sudden weigh loss, enlarged spleen and severe fatigue amongst others and was classified as intermediate risk group 1. I am on a clinical trial and am being treated with a combination of Fedratinib and Besremi. It has worked for me and I feel100% better than when I was diagnosed. I have put the weight I lost back on, my spleen is a normal size and now only have slight fatigue.
I see an Myeloproliferative neoplasms (MPN) specialist.
I would ask about what clinical trials are available. I was apprehensive about them but glad I went on it.
The Blood Cancer UK book on myelofibrosis is very good.
I hope all works well for your husband.
Thank you for your message Tom. I appreciate your advice.
Hi Duncan. Thank you so much for your message. It has reassured me immensely and i am truly grateful for your advice. I will be checking back in on this thread to keep you updated and also to ask any other questions i may have going forward. Thanks again - it is very much appreciated.
Hi. Thank you for your message. I appreciate you taking the time to respond. I am actually feeling more positive now after being offered support and advice from this group, and i hope you can find some positives from it as well. I wish you well with your treatment.
Hi. Thank you for your message. Everything you mentioned is exactly how it is for my husband. He is 68 and only recently diagnosed with Polycythaemia vera (PV). It sounds like he will be positive for MF but until we get any bone marrow biopsy results we don’t know. However, i will certainly be asking about clinical trials and see what they say. Knowing that you are feeling 100% better is a real inspiration. My husband has lost a lot of weight, has an enlarged spleen, and suffers with fatigue so i am hoping that as soon as he starts treatment things will improve as they have for you. I am keeping everything crossed, and i am pleased to hear that the treatment you are receiving is working well for you. Stay well.
Hi @Fiona2025 if your husband considers looking at the possibility of a clinical trial it might be worth him talking to the Blood Cancer UK support line @BloodCancerUK-SupportTeam.
Look after yourselves