I haven't been on here for about three weeks as my husband and I took a much needed holiday on the Isle of Mull.
The day before we set off I had an appointment with my haematologist and we had the "What if I chose not to have an SCT " conversation. Basically I realised that if I don't go ahead, I will just have to live knowing that at some unspecified time, the Ruxolitinib will stop working and it will probably be downhill from then on. My consultant said that if I want a good chance if living into old age, the SCT is the way to go.
Extending my life matters to me, however draining the treatment is.
So the preparatory appointments continue and hopefully a good donor match is out there somewhere.
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Otterfield
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So I guess it’s basically living for an unspecified amount of time then downhill vs, what seems to me, an incredibly high risk chance. I do not envy you, I’m sorry it is an exceptionally hard place to be, I just hope that you get some peace from whichever decision you chose.
Hey Jennie good to hear from you and I hope you both had a relaxing break on the Isle of Mull and the weather was decent enough to do some walking.
As you likely know I opted for SCT which is an incredibly difficult decision (even with a full donor match) and I felt a little selfish in taking it but thankfully had the full support of my wife which mattered greatly. I hope you have the same because subject to you finding a good donor match your husband will more than play his part because it's a team game once it's game on.
Actually I feel quite emotional just thinking about signing the consent forms because until you're on the Unit it all seems a little surreal. But though it can be tough at times its doable. And I'm glad to see that line about how living matters to you. That's exactly how I felt. No half measures, 100% commitment and no regrets.
Sadly without the intervention of a SCT the chances of living into old age with the drugs currently available are as you discussed low at best. I hope you get a suitable match asap because once your mind is made up if you're anything like me you will want to get on with it.
Thanks for sharing your decision with us and good luck with your donor match.
Hi, Jen, Well, it looks like you’ve made your decision, as difficult as it is. I’m going through that right now. My hematologist referred me to another doctor for a second opinion and I’ve scheduled an appointment with the transplant specialist in February. The consensus so far is that I’m not ready for a transplant, but like you, it’s something that I’m thinking about. I’m already 65, almost 66, and I don’t want to be closed out because of age. I’m still at MF intermediate 1, and they like you to be at intermediate 2, usually, to qualify for a transplant.
It’s a very brave thing you’re doing. It does seem like the next most logical step to take for you. Also, you have a great support system with your husband and caring doctors. I wish you all the best and keep us up-to-date on next steps. I hope they find a suitable donor soon.
SCT is a tough decision to make. It sounds like you have considered your options and made the best choice for yourself. Know that we support you and will be here whenever you need to reach out. Please stay in touch and let us know how things unfold.
Thanks for your update Jennie, I had just been thinking of you this weekend, as said before you are under an excellent team at the hospital. I can well appreciate your feelings, life is so precious and I support your courage and the example of Chris says it all, as he says it is doable- as many challenges are - with an end goal in sight - much support and care goes with you
Right decision Jennie. Had mine nearly 11years ago now aged 58. Could have waited but chose not too as I didn’t want my health to deteriorate while heading into a difficult battle. It’s tough and risky but worth the prize. Am having the same conversation with a friend who is not registered here and has just been given a two year prognosis. Happy to help with any questions as you prepare. Best wishes.
The other Chris (with the Princess Leia stem cells. )
People in USA have SCT in their 70s. My cousin (has ALL) was assessed for SCT in the uk at age 70 but his heart and kidneys were not ‘up to it’ making it a non starter. I also had two buddies aged 69 being assessed but sadly neither got to sct as they succumbed to entirely different conditions.
When I read up SCT for mf (aged 57) I came across something that told me the cut off was 45 so was relieved when I saw the Proff and was told I could be considered.
Having been told that SCT was unproven by my local Haem’ I went to guys to see the then doc, but now proff for a second opinion on my mf. We were talking SCT within two minutes and she sent me to the SCT team at UCH ;the rest is history. I would do anything for the Proff and have been buddying at her request (as at the time they ‘had no one else’) since I was four months out. I see it as paying back our brilliant NHS by helping others get to grips with their challenge from a patients perspective.
From your previous posts it was clear this decision was fairly imminent. Neither choice is easy, but now you’ve made the decision that is right for you I wish you every success going forward.
Hi Otterfield - good for you having the SCT treatment - I hope it does the trick for you-we have to make the most of every opportunity & hope your holiday was good too.
I envy you the holiday on Mull. It is so beautiful and good for the soul. That is a very brave decision you have made. I think it is brave to decide to go for it and to decide not to. Where will you have the transplant? The transplant team in Glasgow advised me against going for it despite the two year prognosis I had been given. I also felt my partner would not be able to cope and as Chris says your other half is a very important part of the equation. So here I am nine years later and still with an albeit slowly progressing diseaseWe will all be here rooting for you and I personally wish you the very best of outcomes.
Hi Jan, , you're absolutely right in pointing up that it's an equally tough decision to turn down the opportunity for a Stem Cell or be turned down for whatever reason (s). You are doing so well 9 years on and I hope you continue to do so for a long time to come. Hopefully there will be a breakthrough soon where SCT with the risks it carries isn't the only curative option.
Oh Chris I so live in hope of that day coming before it’s too late for the likes of me. I think I’ve mentioned the other lady with MF that has blood transfusions with me. She is very poorly and is now skeletal with an enormous spleen. She has an amazing fortitude and sense of humour and I love her to bits. It’s hard to stop myself thinking that I could be as poorly as her one day but then I think of a photo of a man in a Facebook MF group who looked really well but died three days later. I’ve said before that I try to take a day at a time and not spoil today worrying about tomorrow and as long as I keep remembering to breathe every day I’m really doing great😂👍🏻. I am resigned now to doing the things I enjoy doing like crafting handmade dolls for the grandchildren for Christmas and leave the mundane tasks like housework to a cleaner. It’s taken a while but I’m at peace with that now! I have the support of a wonderfully loving family and friends and at the end of the day I’m also at peace with not going for transplant
Dear Jan, , I have a lump in my throat reading your life affirming reply. It's not only for your own situation and that of your good humoured friend who I'm sure is an inspiration to you and others in spite of her obvious health issues but also for those in similar positions that I've had the privilege of meeting over too many years. Very Special individuals to a person. Sadly it doesn't always help one to ponder on others fate but take a day at a time as you say. Not forgetting to breathe! Which really helps.
Being at peace with oneself is a big bonus and funnily enough I was more at peace once I'd made my decision regarding the SCT. I'm not sure I've found that state of mind since though with all that's happened these past years.
I'm glad you are well enough to keep busy with your crafting, , and having the love and support of family is often all that really matters in this crazy world. Carry on doing the things you enjoy say I. Always here should you wish to chat.
This is such a huge decision and one you will not have come to lightly. When it was first mentioned to me my first reaction, especially as it meant at that time going to Glasgow from Edinburgh, was that the family couldn't cope and also as it transpired my only sibling wasn't a match. However my husband came up immediately with coping strategies - I am the glass half empty in our family and he is the opposite plus was healthy - and the transplant director said statistically there was a good chance of a donor. As it happened my health deteriorated, the decision was taken out off my hands and could no longer be considered but I remember the hours we spent weighing everything up - pros and cons constantly being weighed against each other. It is a very personal decision, you sound as if you have an excellent team behind you and as Jan says we will all be rooting for you.
Glad you enjoyed Mull. Even when raining or the midges are bad it is a magical place. Just getting on the ferry at Oban raises our spirits
Sending you the very best of good wishes now you have made your decision.Surely all will be well ,you are a strong minded person and so brave about everything thrown your way. Hopefully a match will be found soon .
My thoughts are with you and your husband .I know every one on here will be with you both all the way & Chris of course who has been there .
Keep strong Otterfield .,you will get thru this . Sally
What an enormous decision to make. I'm not at that decision-making stage yet, but I'm well aware that the Rux I've been taking for 5 years now will at some point stop working and, unless Fedratinib soon becomes available here in the UK, there is no other option for me than an SCT. Unless I decide to do nothing, but I'm only 58.
I have set the wheels in motion to see the only MPN specialist in Scotland. I want an expert to keep an eye on me. This same man happens to be the consultant my poor older brother is seeing with AML. My brother (61) had ET which just recently transformed to AML. I think that both he and I have been incredibly unlucky in the MPN stakes.
I wish you well, and admire your strength in making this decision.
Four years into ruxolitinib I periodically look at the progress of fetratinib through the NICE approval process. Nothing comes up about it on SMC's site, theScottish equivalent. It seems to have got to a second committee stage this summer - whatever that means. However the Scottish Medical Consortium are listed as 'commentators' so hopefully if it gets NICE approval SMC will follow?
I presume you aren't in the east of Scotland? I see an NHS MPN specialist.
A hard decision to make, so we’ll done for thinking it through & making it. I’ve often wondered what I would do in the same situation…..and I change my mind regularly. As others have said, you have all our support. I hope a donor is found soon for you. X
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Considering changing from Hu to Interferon and need support to make right decision. 
Stem cell transplant outcomes
pink patches on skin 
