Meet with transplant team

[Charm33]

Hi all, hope everyone is well. I have an upcoming appointment to meet with the transplant team (1st time). What should I expect? All I know is that I will get bloods done and wait then to see doctor. My sibling was already tested end of last year and was unfortunately not a match. Is there any questions I should be asking? Thanks.

[lizzziep]

I can’t advise you, just want to wish you all the best! 🙏🏻

[hunter5582]

Glad to hear you can meet with the transplant team. I would do my own research about HSCs in advance. this will help you formulate your questions. Making certain you understand the benefits and risks of the HSC is certainly on the agenda. I would ask about the different kinds of matches that can be made in selecting a donor. Be sure you understand the implications of that as well.

I go to all appointments with a written agenda. It Outlines my treatment goals, treatment approach, updates-issues-questions, and treatment decisions. All treatment decisions are driven by my treatment goals and risk tolerance. It is often a nuanced and highly individual decision when considering something this significant.

This is what the agenda looks like.

Treatment goals

Define for your doctor what your priorities are. This can be very different for different people. What matters to you? What do you want to get out of treatment? What are your desired outcomes? These are samples of one way to approach goals. How do you want to define what you want to achieve with treatment?

Treatment Approach (optional)

Define what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers all the interventions you use. Do you want to include complementary health approaches? What evidence do you want to know before making decisions? Do you want an explanation of the underlying science or prefer to rely on the provider’s expertise? Do you want to consider clinical trials or emerging treatments? These are included as samples only. Define YOUR treatment approach preferences.

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 is going on. Provide more information when seeing a provider 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 to achieve your goals.

Wishing you success moving forward.

[Charm33 in reply to hunter5582]

This is very helpful. Thank you 🙏

[Nerjalover in reply to hunter5582]

Another brilliant reply from Hunter offering great advice!

[MFBMT2011]

15 years ago I was in the same position as you, but a 57 year old male classified as Primary MF, Intermediate Risk two(IR2). My disease consultant, the excellent Proff Harrison, advised that I would need SCT within 3 years, but at my age I wasn’t prepared to wait and perhaps become too ill or too old, and was referred to the SCT team.

With the SCT team I wanted to know the process , its timescales, where it would be done, the odds of success - generally and theirs, and how we would now move forward. (The odds at the time were 60% success, 20% relapse and 20% failure.) And whether I was suitable.

Before progressing they need to find a good match and do various tests of your body to ensure you are suitable and fit enough (not everyone is). Once through this you can make a decision with them and your family/support on the way forward.

I didn’t match my sisters but they found several MUDs (matched unrelated donors) and selected one of those. I went ahead 14 years ago this month.

It’s a tough process and you need to be in reasonable shape to go ahead so your body can deal with it, but it is worth it. There are several here who have been down that route and can help with further questions.

Prepare your questions and take someone with you as some answers will fly by and you can compare notes afterwards.

Good luck with the appointment.

Best wishes.

Chris (the one with Princess Leia stem cells)

Ps if you google stem cell transplant Chris Harper, you should get my diagnosis to 3 month story and, a short video, if that helps.

pps 14 years ago today I came out of hospital on day 16 post transplant.

[Charm33 in reply to MFBMT2011]

Thank you, very helpful. I'm in the process of loosing weight and out walking every day in preparation to be as 'healthy' and fit as I can be for if and when that time comes. My husband is coming with me but I will be sure to take notes. Thankfully I feel like i won't be needing one for a very very long time 🤞 glad to hear you are out the other side and doing well, I will be sure to google your story.

[Scaredy_cat]

I had et progress to Mf and had my sct 2 years ago at age 70. I'm doing well. The post above is v good. A few things I'd add. When I was making my mind up was what and how long my life would be without the sct. It was likely to be 3 years and quality of life would deteriorate in about 2 years so you might find that information useful. The % success, failure etc has probably changed so get current figures for that. Another big thing is the prevalence and impact of graft versus host disease . I don't have it but it can be awful and last a long time. You may find that something to google beforehand to be primed to ask your doctors. It is something that can affect people that have had allogeneic scts for a wide range of diseases not just ones that have had mf so the statistics should be readily available. It is a tough few months but for me it has been good.

[Charm33 in reply to Scaredy_cat]

Thank you. Glad you are doing well now 🙏

[PT99]

I’m currently going through this process and my first meeting was back in November. They will ask a lot of questions regarding your overall health to gauge your suitability.

They will give you a picture of the overall process and whether it might be right for you given your prognosis and also discuss details of any siblings who may be potential donors.

My advice is definitely to take someone with you as a second pair of ears as there’s a lot to take in and write down any questions ( although in the first meeting the consultant should cover off most things) - I found it’s more important to do that in subsequent meetings when you get into the nitty gritty of the detail.

I’ve found the Anthony Nolan website very helpful at this time.

Are you in the UK?

Best wishes

[Charm33 in reply to PT99]

I wonder what makes one unsuitable. A bit like a job interview 😅 my sister was tested before Christmas but unfortunately is not a match so I will ask what happens next. Yes my husband is coming with me as well as a pen and notebook. I'm in Ireland. I wish you all the best on this journey.

[PT99 in reply to Charm33]

My brother was tested initially but not a match. They then look for a MUD (matched unrelated donor) from the register. I’m incredibly lucky to have 3 for them to choose from.

Good luck!

[Scaredy_cat]

you might like to look at Facebook group: bone marrow and stem cell support group

[Charm33 in reply to Scaredy_cat]

I will look them up, thank you.

[Cja1956]

There is a website called bmtinfo.net and I think they have an example of the questions that you should ask your transplant doctor.

[Charm33 in reply to Cja1956]

Thank you, I will look into that.

[saltmarsh]

I have no experience with this procedure but just wanted to wish you the very best

[dnaleor]

I had a transplant in 2023. For me there were no siblings. I had an allogene donor. I remember I was scared, but at the same time I wanted to fight. They explained me what were the risks, but at the same time all positive things. Like 10/10 match, same blood type, both CMV positive, same gender etc. Also that my organs were in good condition. Stay strong ❤️

[Charm33 in reply to dnaleor]

My sibling is not a match so I imagine they will look for others when and if the time comes and I hope for the same 🤞 I still think they will be telling me that I will never need one 😅 but if that's not the case, it is encouraging to hear from you and others that are now on the other side of it.

[dnaleor in reply to Charm33]

I am now only ready to support people. For a long time I was not able to do this. If you have questions or need some help, just let me know. It's a hard time but have confidence in the improving knowledge the doctors have ❤️