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.

@MyNameIsArthur my brother got his results back and he was only a half match. The hospital called me yesterday that they have found a couple of donors that are a 12/12 match. I’m going tomorrow for a mouth swab test to cross reference further.
Hopefully things will start moving now then.
Better start making a list of what I’ll need to take with me.

Hi sorry to hear your brother was only a half match but great news they have found two close matches elsewhere. That is such a relief. Hope the mouth swab test goes okay. Yes time to start getting things ready and organising everything! I think there is a list on the fb group under Files but you can also ask the question on there too about what you need to take. Am here if you want to ask me anything. Thank you for keeping me updated. How are you feeling?

@MyNameIsArthur I’m feeling ok now thanks. I mainly feel really unfit. Going up flights of stairs, or walking to the local shops really makes me short of breath and makes my legs hurt. But overall I don’t feel too bad.

Has your haemoglobin dropped? The same thing happened to me and my haemoglobin/red cells were low

@MyNameIsArthur they hadn’t by my last blood test. But I have another one on Wednesday so will see what comes from that.
They said they’ll look at a transfusion if my red cells drop below 70. They were 79 at my last test.

I think 79 is quite low so maybe that's why you are having the symptoms you described. I think the lowest mine dropped to pre transplant was 56 and I was gradually needing more regular transfusions until I got to have my transplant

@MyNameIsArthur had to have a blood transfusion today as red levels dropped to 64. Hopefully it should give a bit of a boost.
Have also come out in a skin infection on my face, I look like I’m growing barnacles! So now on 4 different types of medication plus cream. Also had a skin biopsy on a blister on my body, as keep getting them come back.
It’s all fun and games!

Hi it sounds like the MDS is starting to display symptoms now. Am sorry you are having to cope with all this. You are going through alot. Are you in much discomfort? What medication are you on? Is there any progress on your transplant date?

@MyNameIsArthur no I’m not in any discomfort. My arm has started aching two days on though from the transfusion.
I do feel that the transfusion has helped with my energy levels, got on with housework yesterday without feeling breathless or worn out.
I’m just on different antibiotics and steroids for the infection on my skin to try and bring it down. This was through the dermatologist.
It does seem to be working slightly at the minute. My whole nose is now purple with bloodshot rather than blisters. But my face looks awful at the moment.
No updates on my transplant date as yet.
The dermatologist did say if they find from the samples taken if they are linked to the MDS it’ll help to push me up the list. But the biopsy will take a couple of weeks to come back.
I haven’t heard back from my consultant with any updates. I’m under two hospitals at the moment, so mainly just hearing from the one doing regular blood tests and keeping an eye on how I’m doing until I move under the other hospital for the transplant.
Had a bit of a bad day yesterday thinking about the success rate and life span on the other side of it. Shouldn’t google things! But it is something that I feel that I need to discuss with the doctor next time.

Hi I'm glad you are not in any discomfort and the transfusion has helped your energy levels. I hope the antibiotics and steroids help with the skin infection. Have you had to see a dermatologist for any skin conditions before or is this all new? Am sorry you have this plus your nose going purple. It must make you feel down. I was wondering if this has happened to your nose because of a lack of oxygen getting around. What are your platelets and white cell counts now?

I hope you hear soon about a date as it must be frustrating for you. You probably just want to get on with it now. I remember having to push my hospital for a date as there had been miscommunication between hospitals. The hospital where I was intending to have my transplant thought I was intending to have it at a hospital in London where I had previously had some tests. It just highlights mix ups in communication so I had to keep checking that everything that needed to be done was being done. I must have been a thorn in their side sometimes lol.

Aww I'm sorry you had a bad day and have been worrying about success rates and life span. I remember having the same worries and obsessed over it sometimes. I also googled all this. I was often told not to. It is a good idea to speak to your doctor about it. I was given some percentages regarding survival etc when I had the scary talk with my consultant. However they had to give the worst case scenario just to cover themselves so they could say I had all the full facts when I agreed to the treatment. It doesn't mean the worst case is going to happen though. Chances are you will live a good long life after your transplant. The science now is amazing. It's not like many years ago. And it's improving all the time. Saturday was my 4th Re-birthday and I'm doing really well. It is likely that you will too. Focus on enjoying each day with your family and what is beautiful in your life. How you are feeling is normal though. I found it helped to speak to a Macmillan nurse about how I felt. Their number is 0808 808 00 00. I'm here too if you feel you need a good cry and to offload

@MyNameIsArthur I had to have another bone marrow biopsy. From this I got my results on Thursday and my blasts have increased, not at AML levels yet. But I will be going in later this week for a month of chemotherapy, then back home for a couple of weeks and back in again for the transplant.
I’d prepared myself for the one month, but it’ll be too months of being in.
But the sooner it starts the sooner it’s over.

Hi I'm so sorry to hear your blasts have increased. What percentage are they now? Good that they are not at AML levels yet. I wish you all the best with your time In hospital. I will be thinking of you. Please let me know how you are getting on. I'm sorry you are having to go in for two months rather than a few weeks. Do you feel you are prepared now to go through this? How are your family? It is a big challenge for you all but the time will go quickly and hopefully then you can start to gradually get your life on track. I'm here if you need a chat or a cry or anything. I hope you are okay and hope your treatment goes well. Take care

@MyNameIsArthur
My blasts increased from 8% to 13%.
Just finished day 2 of chemotherapy. I’ll be having 10 days then monitoring, then back home and in again for the transplant.
I’m feeling ok at the moment, not nice being away from home but we’re keeping in touch. The side effects started as yet.
I feel better now that I’m in and getting on with it that the nerves of waiting at home. It created so much tension.
My family are ok as can be, think my husband is finding it the hardest as he’s doing two roles at home and working.
I haven’t got any further information on a donor as yet.
I’m so nervous about the transplant and recovery, I’m scared that my husband won’t be able to cope with looking after me, the kids, working and keeping the home clean enough. I just want to recover with as little complications as possible (obviously, as everyone does), it’s just so scary.

Hi there! How are you coping? I can see why they wanted to start the chemo if your blasts have increased to 13%. Do you know what chemo drugs they are giving you? Are you having any side effects yet? The anti sickness drugs they give me were quite effective I remember. I hope it's the same for you.

Is great you're keeping in touch with the family but sad you can't get visitors right now. Thank goodness for the technology so we can chat and see others on our phones and tablets. You will miss everyone still though. Time will pass quickly.

I can understand how you feel better now that you are getting on with it. I remember all the tension before I went in especially when I didn't have a date and felt anxious wondering if the hospital had forgotten me!

Glad the family are okay. I'm sure they will be worrying about you. It will be hard on your husband but maybe he will be happy to rise to the challenge so he can show you his love and support. He won't want you worrying about anything while you are in and also when you come home. He will just want you to focus on you and getting better. I say that but I don't know him lol. I guess I just think if my wife was going in and I'd want to do everything I could to help her through it. It's a tough challenge though but I'm sure your husband will cope. Is there other family and friends who are offering help? I guess thats complicated by the pandemic. Your husband can also contact MacMillan if he needs to offload or wants advice or anything.

What happened to the two donors who were 12/12 match? I hope they are able to use one of them and get them lined up in time. I can understand how you feel nervous. Try not to think too far ahead. Just take each day at a time. You are in brilliant hands and have the best opportunity of getting through this. Thirty or forty years ago I would have been less optimistic about it but thankfully we live in a time now where the science has come on in leaps and bounds and the treatment is now routine and the prognosis is really good. I hope you'll be okay and recover without any further issues. It is scary, I know. As I said, try not to think too far ahead. Focus on the here and now. Keep yourself occupied while you're in if you feel able to and not too fatigued. Is better to keep busy and keep your mind occupied. What are you doing with your time while you are in?

You take care

Hi you okay?

Hi hope you're okay. Thinking of you

Hi am guessing you're having a tough time 😓

Wishing you well, 21jlb

I dropped off this thread as Arthur has so much more advice and experience. But I’m still thinking of you

@MyNameIsArthur hi - I’m doing ok thank you. I was in hospital for 3 weeks so got out a week earlier than expected. Luckily only had about 3 days of temperature spikes and an infection. Had another biopsy which I should get the results for next week to see if the chemotherapy worked.
Got loads of upcoming appointments then for hopefully the transplant in May.
Stay in hospital was fine, just long and boring. They were also kind enough to let me have a visit from my husband and kids after two weeks.

@iVampire thank you x

So pleased to read this OP. I think lots of people will have been thinking about you.

You sound so strong

I hope you continue to feel better x

@BillieSpain thank you x

Hi there! Pleased to read you are doing okay. That is a relief. Glad your hospital stay was fine apart from infection and boredom! So happy you got to see your husband and kids during your stay. I hope your biopsy results show the chemo has worked. Let us know when you hear anything. And fingers crossed you get to have your transplant in May! It all sounds very full on now with all your medical appointments. Hope you are feeling okay and you and your family are coping alright

@MyNameIsArthur my appointment went well and said the blasts had reduced. So the plan is now for me to go in late April/early May for the transplant. Just want to get it all over and done with and start recovering. Everything else just feels like it’s on hold at the moment.

Hi! Thank you for the update. That's wonderful news. You must be relieved. Of course you just want to get the transplant out the way so you can focus on recovery and gradually getting on with your life again with your family. It must feel like it's just hanging over you at the moment. The time will pass quickly though. I can't believe it's been over 4 years since my transplant now. I try to look at it as a thing of the past and hope to start enjoying life again soon. I've lost over two stone since December through diet and exercise and went for an 8 mile walk a couple of weeks ago and a brisk 5 mile walk just a few days ago. 5 years ago I was struggling to get up the stairs. It will be the same for you. In a year or two, you will just be getting on with your life again. Is everything on the right track for your transplant now?