[wendyduffieldParticipant]

Hi all

I am now 4 weeks post stem cell transplant and doing fairly well. When I saw my consultant last Friday she brought up the subject of having a reduced intensity or mini allo transplant within 6 months of the autologous one I have just had saying that the aim was to prolong remission by perhaps as much as 10 years. I was completely taken by surprise having barely got out of hospital for the auto. There doesnt appear to be that much evidence and as I dont have a sibling match I understand that the risks are that much greater.

I wonder if anyone else on the forum has been offered this type of tandem transplant, whether they went for it and how they are doing. I think my consultant is quite pro transplants but is it really worth the increased risks or should I just hope and pray that I get a decent remission from my auto? Its hobsons choice isnt it??

[tomParticipant]

Hi Wendy

Am sorry I cant help you with this one all I had was a SCT and nothing else talked about? but am still in remission some 21 months ago and am still doing great 😀
But am sure you will have some one nip on here and help in the answers you need.

Good Luck in your recovery from your transplant:-D

Love
Tom "Onwards and Upwards" xxx

[HelenParticipant]

Hi Wendy
No idea either but how are you feeling now? hope you are less tired and down.
I had the ' you are in complete remission' blood tests back this week so, despite still feeling pretty sick it was a big boost.
Helen

[brochoParticipant]

Hi Wendy well I certainly wouldnt want to have to make that decision in a hurry!! It amazes me how very different the various approaches by hospitals and individual doctors are to our treatment In my case I was told the risks of a non-related donor transplant were much too high for me and I dont think my hospital offers mini allo transplants at all . I hope you get some replies from others who have had to make the same sort of decision to help Whilst the prospect of a remission time of over 10 years is great you will need to do a lot of research to make an informed choice Good luck with whatever you decide and also in your continuing recovery love Bridget x

[GillParticipant]

Hi Wendy

I do wish I had an answer for you but one thing I would suggest is to go on the USA mm line I have not got a www address but I don't think it will be too hard to find.

When I looked (quite a long time ago) it seemed that they were doing a much bigger range of transplant options with some amazing results. Please don't trawl the internet as most of it is out of date and very scary but the official mm site in the states is like this one.

Maybe someone on here will point you in the right direction to find the site.

Good luck from Gill

[TinaParticipant]

Hi Wendy,

I have been following this blog from the USA for over a year. It follows the trials and tribulations of Lonnie Nesseler who had a non related transplant – makes for very interesting reading.
If you read it just bear in mind that at the time of the transplant Lonnie was extremely weak and the transplant was his last chance of survival.

Best Wishes
Tina

http://nesseler-medical.blogspot.com/

[scottParticipant]

Hi Wendy,

I don't post very often here….I have had the same dilemma put to me. I'm post autologous transplant, nearly 4 months and counting. Two consultants at a specialist cancer hospital talked to me about mini allo transplants. There point was that as I was so young, I'm 43, it may be another option to prolong life.

I read a good deal, and my opinion was that is was much more risky, and I didn't really want to chance it at this stage. I spoke to my own hospital nurses and consultant and they consider it too much of a risk, again at this stage. They told me about another man, about 5 years younger than me, fit and healthy, a fireman actually that wanted to go the mini allo route after autologous transplant, They advised against it, and he went ahead anyway, considering it may be a 'cure'. It didn't go too well, he takes other drugs now as his immune system is not too great, and worst news of all for him is that he has come out of remission.

I should say that the nurses told me that it can be a success, and for people that don't have any other options it is a risk worth taking, but for those of us that do, it is maybe best to wait, and enjoy life.

That is my own view too, hope that helps

Scott.

[shirleyParticipant]

Hi there Wendy,i don't know if my post can help you at all but i'll try my best foryou so that it helps you make your decision,and to think of future treatments that are coming widely available. I was diagnosed with M.M 13th August 2009,age 43yrs,in them 2yrs so far i've had an autogenic S.C.T,i had only harvested enough to have 1 go at it,and then in December 2010 i had my 2nd S.C.T,and that was done allogenic using my sisters stem cells, i felt really poorly with both, you know the usual sickness and going to the loo often and feeling exhusted,its draining leaves you with a large bag of mixed emotions, 30th March this year i was finally told i'm in remission and its the best feeling ever,. When my consaultant told me she would like for me to have another S.C.T using donar i was quite taken back that she wanted to do 2 transplants in a year,anyway after we sat chatting about the affects and some positive outlook ithought i must be crazyto have it done so quickly after the last one,but my age was for me so never hesitated to have it done. I'm nearly 10 months down the line and doing ok,at the moment i'm suffering with GVHD(graft-verses-host-desease)for my doctors they are pleased that this has kicked in,for me though its very unpleasant,they wanted this to kick in because it delays the cancer coming back and gives me good quality of life that i can have with my family. You say in your post you don't have any siblings,but have you looked into having an non-unrelated donar,they might help,might be worth reading up about and recieve more uderstanding. Wendy i wish you well in your decision making,i never hesitated,might have been different if i never had brothers and sisters who knows hey lol,good luck,stay strong and well,and if you wanna ask me anything just ask away ok,take care best wishes, Shirley. x x x x

[mhnevillParticipant]

Hi Wendy

Good luck with such a difficult decision. I have read quite a lot on the Myeloma Beacon (the American site) It does seem that allo SCTs carry much more of a risk and there seems to be quite a lot of Consultants who question the nessecity of them.

Good luck with your decision.

Mavis

[DebsParticipant]

Hi Wendy,
I hope you're doing ok post transplant….it's hard in those early weeks so bear with it and don't rush to getting back to normal. It's really important you listen to your body!!
As to the mini Allo, you could post on the Under 50 site as Ian has recently had one of those….in June I think it was. He is doing well so far.
That must be really hard to have to think about it so soon after an SCT – I wouldn't want to have that decision now and I am 2.5 months post transplant. Have you thought about getting a second opinion? YOu could ask a hospital like the Royal Marsden – given it hasn't been mentioned to me, I would assume they aren't as pro the whole idea, and that might give you the opposite side to the story??
Just a thought.
Take care
Debs x

[wendyduffieldParticipant]

Hi all

Thanks for all your replies and suggestions. I think I will ask for a second opinion, Debs can you suggest anyone in particular at the Royal Marsden? You may not have been offered it because you are still on the Myeloma X1 trial and I came off it due to being intolerant to Thalidomide although my consultant said she would have taken me off the trial in order to offer the mini allo. I will also post on the under 50's forum and go on the USA sites some of you have suggested.

I am going to take my time to make this decision. Shirley I wish I could be like you and never hesitated but even before myeloma I was never good at making decisions. I have just got back from a 3 day break in the peak district enjoying the last of the sunshine. I did a couple of 4 to 5 mile walks and feeling remarkably well 5 weeks post transplant. Not quite as tired but still take a rest in the afternoon. I am also feeling in better spirits (apart from when I think about the mini allo!)

Will keep you posted on what I decide.

Wendy

[wendyduffieldParticipant]

Hi Shirley

Am so glad you are doing well post allo transplant and are in complete remission. What sort of graft v host problems are you having? Did you have the full allo ie high dose chemo and then the transplant of cells from your sister? What did your consultant say about the risks and possible remission period?

Take care

Wendy

[piatkazParticipant]

Hi Wendy
I had an auto in Jan this year then had my mini allo in June At present I'm doing very well had issues with Graft versus host which included red and itchy skin all over my body and itchy scalp.My allo was a sibling donor (my brother).I know this is a difficult decision to make but mine was very aggresive and my hospital doesnt normally do mini's they only did mine because it was a trial, so it was my last chance to have this done so I went for it.All the best in your decision making please keep us in formed if you want any more information about the mini dont hesitate to contact me,if you want you can email me piatkaz@aol.com.

Ian

[shirleyParticipant]

Hi there,right where do i begin,like you i'm normally a slow decision maker but i'm from a family of 12,and when 10 of them got tested for me to have the allo i only had 1 match,thats why in the end i went ahead and had it done,and despite the gvhd i don't regret doing so. I had a full allo done,melphalan on the Moinday and then Transplant on the Tuesday,and then let it sail through,first 100 days i did really well it put into remission,but then they wanted this gvhd to kick in,its left me feeling poorly and low,i started of with mouth sores,lip blisters and blood ulcers,funghi and a very white sore tongue,couldn't eat anything hot or spicy,thats all cleared up so to speak just a sore tongue which is nowhere near as bad as it was,it has now gone into my left eye,its just dry and itchy,so i've drops for them,but its affected my lungs badly,i'm forever out of breathe and gasping for air,so i'm a little bit down in the dumps but as always i'll pick up again and hopefully be well for xmas this year,just remember this is my exeperience everyone is different in their healing,treatments,take care for now,must go for now dinner table is calling me hahaha,speak later Shirls x x x

[piatkazParticipant]

Hi Shirley.

Its 90+ days post my mini allo using my brothers cells just got all my results back from the bone marrow biopsy I am still in complete remission my immune system is now 99% my brothers and my T cells are 95%,I've had low forms of gvhd (even had a skin biopsy to prove it) red skin rashes itchy eyes and itchy scalp,hoping to be really well for xmas this year seems it will be the first xmas without tratment for years
All the best
Ian

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