MF and bone marrow transplant

Had another hospital appointment today and to our shock and horror Steve is now going to be fast tracked for a bone marrow transplant. His symptoms have increased and his blasts have gone from o% to 5% in three months.

We still haven't seen an mpn specialist and I'm starting to lose patience with the progression of care here. I've been asking to see a specialist since initial diagnosis and have got nowhere. I'm not a shy, retiring little flower so god knows how people who are cope.

A different support group has expressed surprise that the 5% has been enough to precipitate the rush to transplant so I think we need to see a specialist like yesterday.

I'm going to see if we can get a one off referral to Claire Harrison although not hopeful as we live in Wales.

25 Replies

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  • meant to add, is there any way of contacting Prof. Harrison without an appt?

  • I called yesterday to ask the exact same thing and managed to track down her secretary using Google guysandstthomas.nhs.uk/our-...

    Secretary: Teresa Theuma

    Tel: 020 7188 2742

    My situation will be different to yours but I was told to speak with my gp and ask for a second opinion but that I would like to be referred.

    I live in Bristol and was told I was within her area.

    Give the number a call and good luck and the number again is on Google in case anyone isn't happy I popped it on here :)

  • I hope you get some clarity very soon. Good luck with the referrals...

  • You are entitled to a second opinion and could get this this through whoever you are seeing or via your GP. I did just that and saw the lovely and brilliant Claire Harrison. I was diagnosed IR2 (intermediate risk two) for my MF and was told I would need a transplant within 2/3 years. I chose to go ahead and go for my six year post transplant check up tomorrow. Happy to help with any questions or even chat on the phone. As you are here you have probably already been on the MPN voice web site. I do buddy work for them and you can find me talking about transplant in the video section. Chris

  • Thank you so much.

  • Hello again, I am also in Wales.

    This is scary and u r right you need to see a specialist as a matter of urgency. I assume you'd be referred to transplant unit in Cardiff for discussion re transplant and I would recommend but different expertise than treating mpn. I have also seen Cardiff mpn specialist Steve Knapper (Cardiff and Vale) who was a good clear talker who gave me the facts. I take it no progress on Ruxolutinib? Have no idea whether worth trying Ruxo before u think about transplant but I'd want to know. I'd try for Steve Knapper. Would your GP give you an urgent referral? Try contacting the Ceo or Medical Director of the hospital or of the Health Board direct? Or contact Steve direct?

    Good luck

  • Urgent referral now obtained to Steve Knapper. Just waiting for date. Thank you for this, really helps.

  • Great, keep in touch, don't forget to ask him about Ruxo! Jane

  • Hi, thanks for the info. Whereabouts in Wales are you? I see youre also a pooch liver. 👍

  • we're between Tenby and Narberth: you? Go a date for SK yet?

  • Not yet, he's on holiday this week and the referral was apparently non urgent?? I'm losing the plot slowly.

  • Seems to me referral should be urgent if the current team are talking about transplant and he isn't on Ruxolutinib: don't want to be alarmist, just that it made a big difference to me.

    Could ring SK's pa and find out expected wait, maybe emphasise worry and urgency.

    Where do u live?

  • I have asked my haematologist for a referral to Prof Harrison for a second opinion. This was done on 9th march, I haven't heard anything yet. I understood that you can ask to go anywhere in the country. I'm in West Yorkshire x

    Janet

  • Hi Afonog, I live in Ireland and had I been a suitable candidate for prm-151 I would have been accepted for the trial in London with Claire Harrison. It doesn't matter where you live. My MF has progressed but I'm not a suitable candidate for a transplant. What a very worrying time for you and your partner it's all too overwhelming. I just cannot understand why you have not had a referral to an MPN specialist. You most certainly don't have to do anything until you are both informed and ready. You don't say your partners age and how he is physically feeling at the moment. At the end of the day once you've seen a specialist and are FULLY informed you will then be in a position to make informed decisions. It's a frightening road this MF as everyone reacts differently and treatments vary for us all. I used to live just outside Cardiff and am often in Wales visiting family and have been told that the haem in CUH is really good if I ever needed treatment when I was over. I cannot remember his name but you could Google it. Best of luck to you both.

    Pat

  • Hello Yes I think you can see Professor Harrison if you get a referral. I have also heard Dr Knapper giving talks at the London Forums on MF, he is based in The Heath Cardiff and very well up on MF. I hope he is seen very soon for you both. Love Gill

  • I lived in Scotland when I had a successful referral to Claire Harrison so it's definitely worth pursuing a referral. It would give you peace of mind that the BMT is the right course of action or completely change that. I hope you get something sorted soon. I have also heard that blasts under 10% are not major cause for concern but your haematologist might be seeing something else too. Best wishes, Jan

  • We need to be careful here and get facts from Haematologists for the blasts etc. If you look at the DIPSS scoring scheme forMF prognosis it flags blasts that are greater than 1% as an issue to be noted. I had a buddy who was okay with 2-3% but quickly moved to 20%. Michelle, the buddy, transplanted and is fine five years out. The figures might have changed since so it is best to rely on experts.

  • Hi, I have had a word with Prof Harrison for you about this and she has said:

    There are issues with Welsh patients being seen in England under NHS.

    I would encourage Steve Knapper in Cardiff.

    She also added that: every patient is completely individual and no one parameter is key for transplant. In the meantime the check for a donor could begin.

    I hope this helps, maybe speak to your husband's GP and ask for a referral to Dr Knapper for his opinion.

    Good luck, Maz

  • Thank you so much that's really helpful and encouraging. The referral letter for Steve Knapper has been sent. We're being fast tracked to see the bmt team and won't make any decisions until we've seen Steve Knapper.

    My partner, also Steve, is still reeling as a result of gong from low time high risk so quickly and isn't happy at the prospect of bmt. He's not being positive st all which is very unlike him.

    Are there any encouraging statistics anywhere regarding bmt survival rates?

  • Please thank Prof. Harrison for me. I really appreciate her time.

  • Hi my dad recently was referred by his local haematologist to find out more re: BMT and saw Dr Steve Knapper in Cardiff in February. It was a very positive appointment, he was very well informed and we had very sound advice and I would highly recommend him. Good luck with everything

    Beckxx

  • Thank so much, this really helps. I have reservations about the care we've had so far and am really really keen to get to Cardiff. Patience has never been my strongest trait and it's stretched at the moment. 😀

  • My father just hits the high risk group for mf but only due to just turning 65 so advised on age along that at this stage a BMT would not be recommended but not to say it may never be an option. We are back up in September for follow up opd. He has the calr gene mutation. Does have low haemaglobin so on eprex injections to increase haemaglobin which is regularly being checked, increased , decreased dependant on hb. Advised to get haemaglobin up to recommended level stay on management of injections and try ruxo however this may affect hb and lower it even with the injections but without trying don't know and could help other symptoms. If it works fab if not then at least he has had the option to try it.

    Since the appointment hasn't yet started the rux still getting hb up and due for another local follow up in next few weeks so will be going with him ,not that he knows this yet lol!! Anyway keep positive dr knapper will be able to explain and inform you with regards to statistics on BMT as he will have the most current up to date info on this and will go through this with you in your appointment x hope your enjoying the cold but lovely dry weather we are having in carmarthenshire/Pembs and having a lovely Easter xxx

  • Thank you. My major concern is that I have been asking to see dr Knapper since January and we still haven't got an appointment. Im not at all happy with the care we're getting at Glangwili, they all seem to have no idea what this cancer is. Whereabouts in Wales are you? there don't seem to be any support groups in Wales at the moment. It would be interesting to know how many mpn'ers there are in Wales.

  • Hi sorry for late reply few days since checking emails lol! Yes totally understand it's really frustrating especially following any unexpected diagnosis for any individual or their families. Shock sets in, feeling of being totally helpless, wanting answers, not knowing where/who to turn to and also whether you or your loved ones are getting the right advise/ treatment etc. however it's also important to try and keep positive. Xxx

    We waited quite a while for appointment probably down to clinic waiting lists as well as the referral didn't get made straight away. I live near saundesfoot and my family are near carew way. I am looking into whether it would be possible to set up some kind of support group locally however this will be dependant on lots of things, as well as interest but will keep you posted. Where in Carmarthenshire do you live?

    Oh, as well I am doing the Cotswolds middle distance event on June 4th similar to a half iron man first time for me! I am raising money for the mpn charity. I have a just giving page, think Maz has shared it few months ago so if you know anyone that would like to donate please share xxx

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