This week I have my first appointment with a stem cell transplant specialist. I haven't made up my mind yet and I'm seeing this as a fact finding appointment.
I've made a list of questions to ask: What exactly does it involve, step by step? What can go wrong? And if something goes wrong, what is the remedy? In my individual case, what is the probability of success? Could I safely leave it for a year or so? That's what I've come up with so far.
Do any of you have suggestions for other things to ask? Especially Chris, Chris and any others who have been through it, and those who are considering it. I fact, anyone who can think of anything at all.
Thank you all, Jennie
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Below is the template I use to talk to all of my docs.
Treatment goals:
Define for your doctor what your priorities are. Can be very specific at times. These are mine. You have to decide what your goals/priorities are.
1. Extend quality of life.
a. Protection of cognitive function is the single highest priority.
b. Protecting vision, hearing, other senses and mobility/physical abilities second priority
2. Extend length of life (only when QOL intact)
a. Philosophically – better to get less tx benefit and preserve QOL with any tx
b. My medical POAs have specific instructions regarding my care and when to d/c all tx.
Treatment Approach:
Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers all the interventions you use
1. Combine Western Medicine with alternative/complimentary healing methods. Do you want to include complementary health approaches? .
2. Rely on evidence-based practices.
3. Weigh the benefits and the risks of any treatment option.
a. Don’t make assumptions. If something can help you, it can also hurt you
b. Pay attention to how treatment approaches, medication/supplements interact
4. Look for underlying cause and links between medical issues.
5. Standard tx protocols are not always the correct approach for any specific person. Individualize tx based on individual medical profile.
6. Holistic treatment - Treat the whole person, not just the parts.
7. Use MPN-Expert Consultation to inform MPN tx & on other tx needs (e.g. surgery)
Rare disorders require specialized expertise. Not all doctors have this expertise. Make clear your intention to require collaboration with the experts on your care team.
Updates/Issues/Questions
Write out the symptoms and issues you are having and a list of your questions. Always include a holistic review of what else is going on, particularly with specialists. Provide a comprehensive review for a provider being seen for the first time. Only give updates/changes to an existing provider.
Treatment
Review all treatment options – let the doc know what you are doing now and seek input on what else to do next. Ask about ALL options, not just the one the doc recommends. Ask the doc to explain why the recommended option is better than other choices. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your own risk tolerance and what risks you prefer to take.
FYI - on of my collogues had a SCT for primary MF. The procedure was successful and after recovery , he is doing quite well.
Hope that helps. Please do let us know how things go.
Hi, Jennie, I’m reading your posts with great interest, since it seems we’ve had similar MPN journeys. I had a consultation with a transplant specialist in 2019 upon the recommendation of my new Mpn specialist who diagnosed me post Et MF intermediate 1. The transplant specialist said siblings are the best match. Do you have a donor? My sister was not a match, so I’m on a donor list. Also, how long will the preparation take and how long will you be isolated before the actual procedure? I would also ask the success rate of the hospital and how many SCT’s the doctor has performed?
I watched a video a few months ago which highlighted 3 women who have had the SCT. All three said, even though it was difficult, they were happy with their decision. They also said they had interviewed several hospitals and doctors before they made their decision. I wish I could find it again so I could post it.
Thank you Cindy, I will add those questions to my list. Unfortunately, my sister has had chemotherapy, which rules her out as a donor. The various registers of possible donors would need to be checked and of course, if there is no match, there will be no decision to make. My nieces and nephew are willing to be tested but it's very unlikely they would be a match.
I'm sorry that no donor has been found for you yet - I do wish more volunteers would sign up.
Thanks, Jennie, but the truth is I was not ready for a SCT at the time. My doctor told me at the time I would probably need one within 2-5 years, but she still wanted me to get the consult. Next month it’ll be 2 years and I told her I want to have another biopsy to see where I’m at. So she’s scheduling one for October. I’m 65 and I feel the window is closing. The transplant specialist I went to see near me in 2019 only performs them until age 70. Like you, I’m nervous about a SCT, so I want to know all the facts, and I’d like to be around to see my kids get married and maybe even become a grandma.
I’m sure you will make the right decision for yourself. Let us know how the interview goes. We are all rooting for you.
Cja1956 as Hunter mentioned "Protection of cognitive function is the single highest priority." I have become aware of the role vitamin B1 and magnesium fill in cognitive and body functions. The liquid chromatography-tandem mass whole blood thiamine test provides a reliable test for deficiency. Also vitamin C deficiency is another to be aware of in stem cell transplant found in the second link.
Thanks, PTE82,Also, because of Hunter, I started seeing a functional medicine doctor and I am on all kinds of supplements now. There are some days when I think they’re really helping, but other days, I’m not so sure. But I’m glad I’m on them, because of all the stuff I read on here about how chemotherapy can you deplete some of these supplements. I’m on magnesium, vitamin B vitamins, omega-3, and vitamin D.
Hi Jennie, I’ve not yet been in the position of having a SCT recommendation-maybe because of age, health issues, etc. But I’m PMF -Pre-fibrotic which is listed as level 1 I think. The first & most important consideration for me would be how many they do & the success rate. Here in the USA it seems that makes a huge difference on success which makes sense. But another question would be what my QOL will be if I don’t have a SCT. My only other question is why are they recommending it now? Has your cancer progressed based on your labs or BMB or constitutional symptoms. I do encourage you to get a second opinion about whether SCT is the right thing for you now. Good luck with your decision. You’re certainly approaching it in an excellent fashion. Katie
Thank you Katie - good ideas there to add to my list. I think Prof Harrison is urging me to consider it, rather than actually recommending it. She is considered to be one of the very best MPN specialists in the UK and explained that the outcome is best if they do it while the patient is as well and fit as possible. I am very well, symptom-wise, and able to walk 3+ miles a day, although my fibrosis is Grade 3. My hesitation is at least partly because I'm afraid of losing my feeling of wellness if it doesn't go well, but if I leave it too long the outcome is less likely to be good. It's a hard balance to achieve.
I didn’t know it was Claire Harrison-an MPN genius & missed that your fibrosis is at a 3. Both these things matter a lot. I wouldn’t waste my time getting a second opinion since she’s your doctor. The reality is that we never know how long we’ll stay healthy: one freak blood clot could give you a heart attack or stoke. I had a few which screwed up my lungs permanently. One thing you can be certain of is that if you proceed with SCT you’ll have all of us sending you positive thoughts & prayers as you recover! Katie
Hi Jennie. I find myself in a similar position to you at the moment. I’ve already had my preliminary appointment and would go along with the suggestions already made about what to ask.
I’ve had the tissue typing blood tests and am waiting for the results (appointment on 31/8). Both of my sisters have had tests and both are 50% matches so I guess it’s now onto the register 🤞. I am 55 yo and currently classed as PMF int 1 with CALR and ASXL1. Although my blood numbers are currently just about ok I have quite severe symptoms, particularly fatigue.
My quality of life has nose-dived in the last 6 months and I guess it’s not going to improve going forward. So as I see it, opting for the SCT is pretty much Hobson's choice, in my view.
Sorry I’m not much help in your question but just wanted to put my perspective forward.
Thank you Garry. All input and fellow feeling is very welcome and it will be interesting and helpful to compare notes as we go. I'm really sorry that your quality of life and fatigue has deteriorated - so far I am okay but I don't think that can last.
Hi Jennie. Was thinking about your post while out running. I have now delved backed into my computer archives and found my Proff Harrison questions (you are right there is no-one better in the UK) and my scribbled notes from my first SCT appointment at UCH. I wanted to know the odds on survival (was given 60% okay after 5 years, 20% relapse and 20% don’t make it out of hospital). How long the process would take? What criteria they used to assess whether it should go ahead (not suitable for everyone)? How long before I was normal (if I ever was!) What restrictions would I have to follow, and for how long, afterwards? What were the risks of GVHD? What tests would they do to ensure I was fit enough to go through the process? The important thing is that the appointment has a finite time so make sure your questions are in priority order.
Some general items. The Proff’ said I was a good candidate for SCT and she would recommend it within the next three years. I said asap as I didn’t like what was going on inside of me. It is very difficult to predict the outcome of SCT but we do know the ultimate outcome of MF. My MF prognosis 11 years ago was 2 to 8 with median survival 5 years; SCT moved the goalposts.
Going in healthy is a big plus but all of our bodies are different and can react in different ways to the intense medical regime you have to go through. Post SCT there is a risk of GVHD which can be short term or chronic long term. I have been lucky so far. I have buddied (talked, met, emailed, messaged etc) many people around the world in the past 10 years, some are still friends and some didn’t make it. There were several who left it too late and took it on as a last resort when their body couldn’t deal with it. However, I also lost some fitter ones.
Regarding donors. I didn’t match my sisters and we had lost contact with the milkman (old English joke) so I had a MUD (Matched Unrelated Donor) found on a UK registry. I met an American SCT specialist who said he sometimes would choose a younger MUD over an aging sibling as the stem cells are more vigorous. As I have said many times Sarah Gardner runs my blood and bone marrow and she was 20 years younger than me.
Good luck with your appointment. Happy to chat pre or post if it helps.
Thank you Chris, for taking the time to dig out these question ideas and the extra information. I'm very risk averse and therefore hate having to take my chances with having it or not having it especially as I am (currently) so well on Ruxolitinib that it's hard to believe there's anything wrong with me. However, I'm not in denial and I know where MF would take me.
However, your experience is encouraging. It would be a MUD for me too as my sister is unsuitable because she's had chemotherapy in the past. Our old milkman is also long gone! 😁 My nephew and nieces are willing to be tested but a match would be extremely unlikely apparently.
That's interesting about a younger donor being preferable.
Thank you so much, I suspect I will have even more questions after my appointment.
Wishing you the very best in your journey to find answers, Jennie. Asking every question you can think of seems the best way to tackle this very complex issue. My specialist told me I will likely be too old for a transplant when I transition to MF.
Hi Jennie, , I read your post yesterday and like our friend Chris (Princess Leia version) was casting my mind back but also waiting to see what other responses and advice you got which I'm pleased to see is a great response with lots of sound suggestions.
I guess I was likely hoping it might trigger my memory and I would furnish you with a list of key Qs I prepared earlier in good old Blue Peter fashion. But the truth is it doesn't really because thinking back I'd well and truly embraced the fact that I'd chosen to go for a SCT as i was thoroughly fed up of living with MF and decided i wanted rid of it for good so for me it was more a matter of listening than asking bease it was already a fait accompli .
Like Chris I was given a fair bit of information like the %ages of success etc. And had to sign the consent forms outlining the procedures which some might find a tad daunting. By comparison it seems Chris was much better prepared than I. Though I did ask if I could continue guzzling beer until I was due in for it. NO. 😩 And conjugal visits (too much info!) at which they fell about laughing and quipped I'd be lucky if I managed to raise a smile for a few weeks, well it was 4 or 5 weeks cooped up. I recall asking about how to keep myself occupied and rules around visits and food, drink, making a brew, a fridge (which there was) all the critical stuff 😃.
What I did do well though was to be %100 committed to the process or regime that an SCT demands and to it being successful. I never had any doubts even when things went pear shaped later on with severe GVHD which wasn't predicted.
As an example I overheard a lady in the adjoining room on her first morning say loudly to the nurse " I can't possibly swallow all those , you should know I don't do tablets , , , it's in my notes" . Oh dear I thought not a great start for her.
Like you I was reasonably well at the time though my Ruxolitinib wasn't working too well on symptoms but I could sense my underlying MF ramping up aside from that. Also I was deemed high risk of transforming to AML which is a possibility. I was PMF Intermediate 2.
It's natural to wonder what the optimum time to go to Transplant is but that's one of the dilemmas , I might of gone on another year or 18 months or I might of started to deteriorate and become too weak to withstand the treatment and miss my chance. Chris summed it up nicely.
On donors I was lucky because my lovely Sister was a 10/10 match but on the Unit a few had male German donors and I was told that male donors are preferred. To do with females and antibodies following childbirth esp over 2 children. I know of two transplantees who had baby chord stem cells.
Finally whatever way you go Jennie I wish you all the luck in the world and again like Chris am happy to be a sounding board at any stage should you or anyone else here need to ask a question or need an ear or a bit of moral support around SCT or GVHD.
Great reply fellow Chris. You have sparked a memory for me. You have to commit fully to the transplant and do what you are told to do by the medical staff. For several twilight days I was on hourly observations for the 24 hour period. The nurses always apologised for disturbing me, especially if I woke in the early hours. My response was always ‘do what ever you need to do whenever you need to and I will handle it, you are saving my life’. Unbelievably some patients used to complain about being disturbed.
Thank You ! Yes I'm afraid some patients seemed to overlook that minor detail , one chap was consistently rude to all the nurses sometimes with a barrage of fff four letter words but he didn't receive any less life saving effort and care in spite of his obnoxious character. Chris
Chris ,I find that absolutely dreadful ,complaining about being disturbed re care by nurses.I remember being checked every hour or so day & night,sometimes a little whisper or gentle touch,I felt reassured I was being cared for,not a transplant just the several times of hospitalisation with PV. Glad you are still well ,I don't get on site regularly so was delighted to see your comments 😀♥️Sally
Thank you so much for your reply Chris. It makes such a difference hearing the experience and wisdom of those like you who have actually been through it. I will happily let the doctors and nurses do whatever they need to. Once in hospital I tend to become much more compliant than in "real life!"
I have also wondered about what might seem trivial things, but which matter. Luckily I read a lot and have a Kindle. My husband and I both struggle with the idea of being apart for so long but are thankful for video calls.
Also (possibly also too much information) I've been wondering about things like access to clean underwear! I know the nurses will have answers to things like that though.
My appointment is tomorrow and I will post here about how it goes.
Yes Jennie it's oft the simple things like clothing that can assume great importance in times of need. I was a very very lucky boy at Manchester Royal because i believe a previous transplantee donated funds to appropriate 3 guest or relative rooms on site (called Nova Suite) and across from the Unit which enabled my wife to stay weeks at a time foc and be on hand to tend me , bring food etc. Also she was able to wash my tees and pants which was very handy. Another alternative would of been a hotel nearby, but costly.
Of course Covid has altered the situation so I don't know the protocol now re visiting but it will likely be very limited. Should you take the plunge fairly soon I do hope your husband can visit but he will need to wear all the barrier gear as the Docs and nurses do to reduce the chance of infection. But you may have to rely on good WiFi being available on the Unit because there are often a few black spots in some parts of a hospital.
Hi, my delay in your post is due to being off the WiFi and no signal. By now you will have had your appointment. I just hope that your questions have been answered to your satisfaction. It is a nerve racking time fir you. I’m sending you lots of hugs
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