Bone marrow transplant

[21jlb]

Hello,
I have been told today that I have an issue with my blood and have to have a bone marrow transplant to try and stop it turning into leukaemia. Has anyone had this transplant before? If so I could really do with some advice on this.
Thank you.

Hi glad your husband is home and hope he is recovering well and you're over your colds. One thing after another!

My wife needs to see a cardiologist now as her tests showed some significant problems they said. Hopefully they'll be able to fix it. Thank you for asking.

You're very brave just having gas and air with your biopsy! I had that with my first one but it was still awful, possibly because the doctor who did mine was training and doing it all wrong. I asked for sedation after that! Don't blame you for feeling sorry for yourself afterwards. Great news there are no abnormal cells!

Your chimerism is doing well too. As you said, reducing your cyclosporin should help bring the line thats at 78% up. The top up of extra cells (donor lymphocyte infusion) from my experience takes about half an hour to administer. Not long. I had four of them which brought my chimerism up to nearly 100%. There is a risk of gvhd from the DLIs. Hopefully you'll be fine. Am glad it's looking good.

Hi hope you're okay and everythings going in the right direction with your treatment and health

@MyNameIsArthur
Hi how are you keeping?
I’m doing ok, started back at work a few days a week from last week. Feeling well in myself the majority of the time.
Got another chimerism test next Monday. The low level dropped from 78% to 54% so it may be a case of having the donor cells, they are meant to be contacting him. Hopefully the levels may come back up on their own though. Apart from that no concerns

Hi! Am doing okay thank you. Coming up to five years post transplant beginning of February which is a milestone, and am feeling fit and healthy. My blood counts are stable and in the right range, so, touch wood, all is good.

Glad you are doing okay and feeling well and are now back at work. Is good to get back to normal as much as possible. How was work? I was just thinking how it's nearly a year since you were diagnosed. You've come a long way since then. I hope your chimerism goes back up again as is quite low at the moment. I think mine dropped to around 55% when I had to have four top ups of donor cells over about 18 months. They helped get it back up to where it should be. Will be great if yours goes back up on your own.

Is lovely to hear you sound positive and happy. I hope your family are all well too

@MyNameIsArthur
Glad to hear you are doing well.
Work has been ok, quite nice to get back to normal, just taking it slowly.
Starting to get ready for Christmas so got a few things planned with the kids.

Had my next chimerism results today. It’s gone up on its own from 54% to 63%. They will do another test in two weeks time to see if it goes up anymore. If it goes up they’ll hold back on the donor cells and just monitor for now. If it stays the same or goes back down then they’ll look into the cells again.

If I don’t hear from you before - I wish you and your family a lovely Christmas x

Hi there!

I'm so sorry for my slow reply! I've not been on mumsnet for a while. Busy with building works and other things.

Thank you, I am doing well. Nearly 5 years post transplant and it's nice that it's not something that fills up my life now, and gradually it will be the same for you.

It's great that you are back at work and already get some sense of normality back again. Well done on your chimerism going up on it's own to 63%! Are they still monitoring it? I hope it's still improving by itself.

Thank you! Have a fantastic Christmas with your family. I wish you all the best for tomorrow. You've been through so much this year and so I hope 2022 will be a year where you can start to put all you've been through behind you and enjoy your life again with your family.

Best wishes x

@MyNameIsArthur
Happy New Year to you. Had my next chimerism results back yesterday and it’s now up to 74 so still on the up on its own, so still just monitoring for now in the monthly tests.
I sent an email to my donor (through my team) and received one back from him so that was lovely :)

Hope you are keeping well - and that’s amazing on the 5 years! x

Hi! Happy new year to you too! That's fantastic your chimerism is moving up on it's own. It feels like you are winning the battle. I hope it continues going in the right direction.

How lovely to get a letter from your donor! That must have been emotional. Where abouts is he from?

I'm doing great. I feel fit and healthy. 31st January 2017 was the date I went in so starting to think more about how I felt five years ago leading up to that date x

I thought I saw a recommendation for mouthwash on this thread for sore mouth during/after treatment but I can't find it, did someone recommend it @MyNameIsArthur was it you? You had a lot of good advice (I may have missed it as I'm skimming it all!)

@MyNameIsArthur all I know is my donor is from Britain. But he sounds lovely in his letter, even persuaded his partner to join the register which is fantastic.

My chimerism has up come to 80 now on its own. They’re still holding out on more cells as concerned about gvhd. But they said it’s not coming up as quickly as they’d like. Going to see what they are in 2 weeks time.
I’m feeling well, very slight gvhd which hasn’t needed treatment so far. Just feel that it’s hanging over my head a lot and concerned about it coming back. Finding it difficult to speak to people about it as they see me being back to normal that everything is fine now.

@alltheseasons I’m not sure about the mouthwash, but hope someone can get back to you about it.

@MyNameIsArthur had my next chimerism result back today, it has now gone up to 84% so they are still holding off with the top up cells, still continuing to monitor. They are hoping after my next appointment in 2 weeks I can go to monthly appointments which is great.

It has been a year from when I first went into hospital for chemotherapy, can’t believe how quickly the time has gone!

@alltheseasons Hi thank you. sorry , I've not been on here for a while. I hope this is still relevant but I think the mouthwash was called Difflam.

Hi! I'm so sorry I've not replied earlier. I've not been on here recently. I have trouble posting on mumsnet, a technical issue, and so I've not been coming on mumsnet as much as I used to. I will always check in from time to time to see how you are though.

That's wonderful news about your chimerism rising to 84%. It shows that your donor cells are winning the war! It's great they are doing it by themselves too without the top ups.

It's so amazing you got a letter from your donor. He sounds really nice. Did he say much about himself?

How is the gvhd? I hope it continues to be a minor issue and eventually disappear.

The time really has gone by so quickly hasnt it?! A year since your chemo. Thats crazy! You've come along way though. Of course it will always be in the back of your mind about the cancer coming back. That's normal. I'd be a liar if I said that eventually goes, well with me anyway it hasn't, I guess I can only speak for myself. I found as my appointments got less and less, I started to think about it all less and less. If it wasnt for covid, my life would probably be back to normal by now. It was getting that way but then the pandemic came along. The govt doing away with all restrictions is a big worry. I get my fourth vaccine this week so that's good.

I understand how it is difficult speaking to people about it. I think most people move on quickly from it. They think you've had your transplant and that's it. You're better! Of course you know its not as simple as that. I generally dont talk to others about it. I just assume others have their own issues to deal with and aren't interested in my health anymore. On the fb group many others have said the same thing as you. I think the thing I find the hardest is that family and others dont accept my reasons for avoiding gatherings now. They dont get that my immune system isnt normal anymore. They say covid is here to stay and I need to get on with my life and live with covid. So yeah, it is hard talking to others about it all. My wife gets it though. She understands. I'm sorry you are finding that hard though x

@MyNameIsArthur
Hi how are you keeping?
I’m doing well, my appointments are now monthly. For now they are monitoring my chimerism as it is still rising slowly on its own.
My donor seemed very pleasant and was happy to hear from me. He said his family weren’t on board with him doing it but he felt it was the right thing to do and has encouraged his girlfriend to also register.

Hope you are keeping well