Myeloma

Myeloma is a cancer of plasma cells in the bone marrow. If you're suffering from myeloma, or know someone who is, join this support group.

Tandem Allo Transplant

BrenF
Posted by

Hi Folks,
I was diagnosed with light chain MM back in Nov and put on Velcade straight away due to the state of my kidneys. As explained to me to me the NHS will only fund what corresponds to six rounds of Velcade if you are getting a stem cell transplant so I'm now on my last cycle.

As my prognosis is poor my consultant has proposed a tandem (back to back) ASCT. Talking to the transplant team they want to take things one step at a time - fair enough, but I get the sense that tandem transplants are not something they do often if at all. The transplant consultant remarked that a transplant (for all that is involved) will typically add a year to whatever remission is achieved. I don't see how you can be definitive about that as each case is going to be different, I think we'd all hope for more than a year, but I know many don't get it.

So, are there folks on here who have had a tandem ASCT or is it just not that common here?

Thanks for reading,
BrenF

greg777
Posted by

Hi Bren,

Welcome to the forum although I am sorry for the reason you had to post.

I had a tandem auto/allo transplant back in 2015/16. I think you are right, I think it is relatively rare and I have not come across many people who have done it.

Please feel free to ask any questions you might have as I’d be happy to help in any way I can.

All the best

Greg

Samantha Jane
Posted by

I wondered how long you were in hospital for?  My husband was due for an auto SCT but now they are thinking about a tandem SCT.

Best wishes,

Samantha

greg777
Posted by

Hi Samantha,

I was in hospital for a couple of weeks with each transplant. It may be longer if you get an infection but I was lucky not to get one. I had a a 3 month gap in between to allow me to recover from the first one.

I hope this helps and all the very best to you and your husband.

Greg

Samantha Jane
Posted by

Hi Greg,

It's very helpful to speak to someone as we had not considered a tandem as a possibility. It is being recommended as Scott has high risk myeloma.

Did you get a good response at the time and have you had any maintenance therapy, as that is another thing for us to start thinking about?

Do you have any tips for coping with these proceedures? It seems like a very long time to be immunocompromised.

Best wishes,

Samantha

greg777
Posted by

Hi Samantha,

I am glad that I can help in any small way. I did have a good response to induction therapy. I think that the medical teams try to get the patient to as good a remission as possible before doing the transplants as that can help achieve the longest possible remission.

I am not having any maintenance therapy and have not been treated for myeloma now for almost 4 years, although I do know some centres advise maintenance therapy, again because there is some evidence it results in longer remissions.

In terms of the process itself, I am not going to lie, it is tough, and with an allo there is every chance that Scott’s health will deteriorate before it gets better. It can be a long, slow process to recovery and so the psychological challenges can be tough. The practical advice I could give is to have as many distractions as possible whilst he is in hospital - electronic devices, books, even a hobby that he can do whilst in - I decided to write a book and it definitely helped. As to the mental battle, I just tried to remember that everything was temporary and I tried to remain focused on the reasons why I was doing the treatment. If Scott and you would find it helpful, there is a separate stem cell transplant group - Stem Cell Transplants for Blood Cancers - Forum and you may find people going through the process at the same time, which can be a great help. I am over 3 years since transplant now and the memory gets fuzzy such that there is much I don’t fully recall, which is a good thing and shows that life can go back to normal after the treatment.

Wishing you both all the very best

Greg

BrenF
Posted by

Hi Samatha / All,

Having started this thread with the wrong title I feel compelled to clarify. What my consultant said was, I'm high risk so a tandem auto transplant was his recommendation - is it the same with your husband? I understand Gregg had an Auto (his own cells), followed by a mini Allo (donor cells), but that is NOT on the table for me. 

I had enough cell harvested for the transplants last week, but have learned that there is no point in looking beyond the next appointment with MM. It really is one step at a time, see if you even get to the first transplant before worrying about what's next. Not easy to do at first, but that mindset will help preserve your sanity in the long run!

I am curious how they reached the conclusion that your husband was high risk. I had three separate high risk markers found when they did cytogenetics on the marrow they took from by biopsy. Was it the same for you?

If you are happy to share your progress on this thread, I'd be happy to keep the discussion going,

Either way, I wish nothing but the best to both of you.

Brend

Brendan.