[RozParticipant]

Hi Shirley

Good to hear your doing ok in a fashion..Its always worse for the patient even though the consultants are glad.

Sorry not been in touch with you for a while, still getting over Michael..I can't believe how its affected me.
Anyway keep up the good work, lets hope the cancer keeps away
All the best
Love Roz xx

[wendyduffieldParticipant]

Hi Ian

pleased to hear the good results re your transplant, what does the t cells being 95% mean? It sounds like you are doing really well so hope it continues that way.

I have decided to wait and see about having the mini allo till I know the outcome of my bone marrow biopsy in December.

all the best

Wendy

[wendyduffieldParticipant]

Hi all

I thought I would update you on my mini allo research and decision. I had decided to wait and see what sort of response I had to the auto transplant and if I had complete remission or very good partial remission would settle for that and hope for a nice long remission period. So I found out on Friday that my bone marrow was less than 5% sbnormal cells and my light chains were within normal range and the consultant said I had a very good partial response. So that was great news wasnt it?? She also said that there is a correlation between having complete remission or very good partial remission and the length of remission so so far so good.

But then she flipped through my file and looked at a cytogenic report and said that I had chromosomal abnormalities that indicated that my remission may not last that long and so my delight at the good news was soon extinguished by the bad news. This chromosomal abnormality had never been mentioned to me before so it came as a bit of a shock. She also explained although I kind of knew this that each transplant would give about half as much remission as the previous one and at my age (50) the aim was to prolong remission at first remission as long as possible and the mini allo would give me more mileage (my words not hers).

Looking at the research (and there isnt loads) I came to the conclusion that there is there is slightly more evidence for than against that a tandem auto/mini allo can lengthen remission but that the longest study is only over a 5 year period. However the risk of chronic graft versus host decision may outweigh the advantages in my view.

Having said that I have decided to have it and the donor matching process is underway as my siblings are not compatible. I need to have it done by the end of February as that will be 6 mths after my auto.

So I think I might be the first on this site to have a tandem/mini allo as the first transplant procedure rather than on relapse. Has anyone else any chromosomal abnormalities that they have been told about and told that they will affect their response to treatment/length of remission??

Any comments would be appreciated and I wish all a very happy Christmas and new year!

Wendy

[piatkazParticipant]

Hi Wendy
Welcome to the mini allo journey,the whole purpose of the mini allo is to reduce the chances of getting serious GVHD they remove the T cells from your donor cells and they dont give you the Melphalan they give a more gently chemo as the specialist said its just to punch a hole in your immune system.They have mirrored the treatment used for Lukemia which is very successful.
Ive never heard of chromosomal abnormalities and has never been mentioned by my specialist but I will mention it when I see him on Wednesday.
I found once I decided that I was having the mini it was easier to cope with good luck with your search for a donor and keep me updated with your journey,I'm 6 months post allo and still doing well.
Happy Christmas and new year
Ian

[GlynjParticipant]

Have been reading these post with great interest. John has dcided to have the mini allo transplant.They are using his brothers stem cells He will be having it done in Feb. He had his auto transplant in Aug.I have been trying to get as much information as i can so we have some idea of what to expect. Can,t get any better than first hand accounts thank you very much

[piatkazParticipant]

Hi Wendy
I was talking to my trial nurse today and she said they havent checked for chromosomal abnormalities but she would check it out with my specialist,on another note I was given my results from my 6 monthly bone marrow biopsy and was told I'm disease free at the moment so all going to plan after the mini allo.
Ian

[wendyduffieldParticipant]

thats good news Ian and long may you continue to be disease free!

Re chromosomal abnormalities it doesnt appear to be the case that many people are told about these or tested for these. In fact I dont know how you are tested whether through blood tests or bone marrow tests.

I have been told there is a matched potential donor in Portugal. As I have been there twice this year on holiday I consider this to be a good omen!

Were you ever told that having the mini allo could give you a chance of a cure? Or has anyone been told this? My consultant reluctant to say this as the evidence isnt there.

Wendy

[PerkymiteParticipant]

Hi Wendy, I have not corresponded on this discussion because it is way out of my league and knowledge.

The only information I had was that in Little Rock, Arkansas there is a hospital that specializes in this type treatment. Apparently the story is the founder of Wal-Mart, the big American Supermarket that bought ASDA, had Myeloma and he had of course millions to spend and he funded the research at the local hospital, hence Little Rock. The hospital claims big things for its procedures I believe but the only down side, I understand, is that the Hospital has steadfastly refused to allow anybody to independently check their treatment and ?cure? rate.

I wish you the very best of luck whatever you decide.

Kindest regards ? vasbyte

David

[piatkazParticipant]

Hi Wendy
Portugal hopefully is a good omen also my brother has just gone over there to live so theres another coincidence all the best with that.
When ever I've discussed the outcome with my specialist he's always said there a 20% chance of a cure and a much better chance of a long remission with this treatment.If you ever decide to go ahead with the mini I've made a spread sheet with the treatment you get when in hospital if you want one I could e-mail you it.Mine is part of a trial using revlimid as a maintenance drug which I will be on for approx 9 months (very small dosage)
All the best
Ian

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