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.
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afonog
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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
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?
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.
Still no appointment but he's now on ruxolitinib as he's been regraded to high risk. His spleen has shrunk 1cm in just under two weeks and he is feeling less fatigue and spleen pain. So that's a positive.
I am such a fan of Ruxo: my spleen went from causing a hernia it was so big to can't palpate it anymore, and I can't tell you how much better I feel. Maybe not quite such a rush to see S K now, though still very important.
Afonog really pleased things are more positive i am sure the opd be through soonxxx
Does anyone have eprex injections as well as ruxo and did haemaglobin stay within range?Dad has low haemaglobin and is on eprex injections however was advised to get hb to a reasonable range before commencing ruxo. Was also informed hb even with eprex injections may still drop due to side effect of ruxo but without trying won't know. Hb 99 so still to low to commence ruxo at th moment. Just interested if anyone else has had similar problem? Beckyx
similar but with platelets too low: went onto Ruxo with platelets at c 100, they initially went lower on Ruxo but reduced dose a bit and have now got platelets close to normal range
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
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.
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.
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?
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
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
Am absolutely gutted. We have been given an appointment with a Dr W Kell at Cardiff who I can't find anything about and who has no research papers p,ublished and no evidence of trial participation. Im beginning to feel like no one really wants to help my partner and am getting myself ready to ph He the hospital tomorrow and have another discussion about what exactly is going on. I'm so upset and I know Steve is too so I'm trying to be really upbeat for him but I'm really struggling at the moment.
Oh dear yes I would feel the same. So sorry. May not be as bad as we think possibly: he might be part of Dr Knapper's team I suppose, and as Glangwili didn't say it was urgent they don't know how vital it is? It's bound to keep u awake but try and sleep and as u say ring Cardiff in the morning. At least u have an appointment - maybe hang onto that. And u have got the Ruxo which is a good holding position. Jane x
Hello. You're doing all the right stuff. Keep pushing. It is hard but hopefully when you speak you them tomorrow they can give you some more information. Good luck
I've not been part of this conversation but have been following it. My thoughts are with you and your partner. I hope you have had some success with your phone calls today. What a very stressful time for you both.
This is just awful. I hope you can get resolution soon. I completed a survey from bloodwise yesterday and at every turn said the profession needs to do more to educate on MPNs. This can't all fall at Prof Harrison's door and we need a professional community to be established. Anyone can fill out the survey so would encourage all on here to complete it.
Take care and everything crossed for you and Steve.
Hi just caught up on the conversation this happened to dad the opd came through for a dr knell clinic. We had looked into both consultants before going however when we got to the appointment dad did see dr knapper. Again all the best with the appointment thinking of you both xxx
If it I wasn't happening to us I wouldn't believe it. Glangwili hospital hav efsiled to chase Steve's point entirely with the bmt team in Cardiff and apparently it has got lost. So 5 weeks after the referral was supposed to have been sent we are no further forward. I have spent this week on the phone and email trying to get someone to do something about it.
I'm usually pretty good st this sort of thing but I csnnot believe the lack of interest and help I've had from Glangwili. I'm absolutely disgusted. The consultant rang me yesterday to tell me that she had done what she should and that "logistically it's quite difficult as CUH and Glangwili are remotely lcst d from each other". Err emails? Apparently she had emailed the bmt too but had not receicpved any response so hadn't chased it. The cancer specialist support nurse fromMacMillan just didn't bother phoning me back at all. I was furious when I left a msg for her.
The only person who showed any sense of ride and engagement I her work is a nurses called Sheridan from the bmt team who, realising how distressed I was, went to the bmt secretaries and told them to ring Glangwili and get them to email another referral.
I'm exhausted, upset, angry and pretty much at the end of my rope.
Oh and I haven't told Steve yet as he has been much more upbeat lately and I cannot bear the thought of seeing his face when I tell him.
Lastly, he was prescribed double the dose of allopurinol for a month in error. I'm not sure what's going to kill him first, the cancer or the incompetence.
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