[noelParticipant]

Yesterday I started conditioning treatment for an Allo graft transplant. I’ve heard many times that it is not a treatment used very often for myeloma with the main reason being risk of mortality vs treatment benefit.

In my case it was recommended as an option because of the ‘high risk’ nature of my myeloma as identified by the FISH test. High risk could mean some drugs or drug combinations may not work very well and this was the case during my initial treatment which was the PAD trial where I had a minimal response and had to be switched to VTD after four cycles. High risk may also mean much shorter remission times.

An Allogeneic transplant was suggested as it may offer the best opportunity to keep myeloma in its place for a decent amount of time a 1 in 4 chance that it could offer real long term remission. Another positive side effect is that it seems to amplify the effectiveness of future treatments. But this is all balanced by the very real possibility of not surviving the treatment; indeed the percentages quoted liken it in my mind to playing Russian roulette, but of course it’s not that simple.

So I decided to go ahead if a donor match was found but really as far as I was concerned there was no choice really; in my mind it would be silly not to go ahead if it was possible. Initially my sisters were tissue typed but they weren’t a match so then it switched to searches of registers for unrelated donors. I was amazed when they told me that I had three perfect matches on their lists. A donor was chosen and everything set in motion. All I know about the donor is that they are male, under thirty and American.

So back down to London tomorrow which is day minus five on the time table. I’m told it’s not as hard to tolerate as the auto graft but let’s wait and see. I should receive the donor stem cells on the 5th of Feb. I’ve been looking forward to this process starting for some time now but I’d be lying if I didn’t admit to being a little apprehensive as well; I’ve spun the chamber, let’s see what happens.

I’ll keep you updated when I can.

[ann666Participant]

Hi Noel

I appear to be in a similar situation to you. I had an auto transplant in August 14 but unfortunately it didn’t give me any remission at all, by the time I had my 100 day bone marrow biopsy it had returned.

I have just started on a course of its vtd with a view hopefully of an allogeneic transplant when and if the levels have gone down.

It was very disappointing when the auto didn’t give me any remission but onwards and upwards. I understand what you say about the risks of the allocation transplant but personally I don’t think there is much of an option if its a high risk type of myeloma, if you stay on treatment how long before that no longer works.

I wish you all the best with you transplant keep in touch

Regards Ann

 

 

 

[MrsLParticipant]

Hi Noel and Ann,
I had an auto transplant in May 2014 which gave me ‘very good partial remission’ but not for long, I had relapsed by November 2014 so I am now on a course of VCD. I have a meeting with the top man in Leeds this week and I think an allo transplant may be discussed as a future possibility as my consultant did mention it as an option for my type of Myeloma.
It would be a very scary decision and how likely is it to work better than the auto transplant? I will be asking lots of questions and hopefully finding out much more.

Hope your transplant goes well.

Linda

[cygnetParticipant]

Hi Noel,

Thinking of you & hoping all goes well 🙂

C x

[noelParticipant]

Hi Ann,

I completely agree with you on there not being an option when dealing with high risk myeloma if an allo graft is recommended. The problem for us is that there seems to be different trains of thought amongst consultants on whether an allo graft is a beneficial form of treatment when compared to new targeted treatments; so if the experts can’t agree then how can we make an informed decision? For me, risks aside, an allo graft was a more pro active approach in dealing with my form of myeloma as opposed to the reactive one of waiting for things to happen.

It must have been very disappointing to find your auto graft had not given you a good remission but try to remain positive as you move forward; VTD worked very well for me and got me ready for my auto graft in four cycles and there are many more combinations available if needed. Hopefully before you know it you’ll be getting the news that you have a matched donor and moving ahead towards your transplant.

Hi Linda,

Yes, initially I did not like the sound of an allo graft transplant but the more I learned about it and the reasons why I was being recommended for it, the more it made sense. Stem cells from a donor are there for a different reason than when you receive your own stem cell back after high dose chemo. Your own stem cells are used to recover your bone marrow whilst a donors stem cells are introduced in order to introduce the donors immune system which will fight the cancer cells. So definitely ask lots of questions, you will need to understand the role of graft versus host disease for instance and you should discuss in detail the risks and benefits of the treatment. Hopefully having a greater understanding will make the decision to go ahead less daunting.

So I’m back in London tomorrow for my third infusion, all is going well so far. Pity I can’t say the same about the trains though…

[andygParticipant]

Hi Noel.

I had the same dilemma in October 2012. I was told at the time an Allo was my only way forward, only chance really because none of the treatments worked well enough for an autosct and my marrow was that hammered by the drugs they wouldn’t produce enough stem cells. I was told all the stats 20% mortality rate etc etc but said I’d go for it anyway as I didn’t have any choice really at the time. I was on Revlimid and that wasn’t working. They did all the blood tests no siblings matched and only one on the donor list matched! That match was deemed not good enough.

They then added Cyclophosamide to my Revilimid and dexamethasone and I had a response. I got 22 cycles before it stopped working and I’m now on my 15th cycle of Pomalidomide. I’m still waiting for the call to say they’ve found a match though an Auto SCT is going to be investigated as Pomalidomide has been kind to me.

Fingers crossed everything goes to plan Noel and you get a good response to your Auto.

Every day is a gift.

Andy

[VickiParticipant]

Wishing you the very very best Noel, good luck to you

Vicki and Colin x

[stanley-1960Participant]

Hi Noel,

I hope all goes well and it brings you long remission.

Best  wishes,

Stanley

 

[Author]

Posts