mini bone marrow tranplant

[Suzanne]

Anyone here have any experience with one of these? It is one of the alternatives they are talking about for me if I am going to relapse. Using one of my children as donor. It is a fairly new treatment-too new for very reliable statistics according to my Doc.

[cherylm]

Hi Suzanne,

I have heard about mini transplants. They are easier to tolerate for older patients. If we can get my dad’s blast counts down and under control that is what we are hoping for. He just turned 70.

Cheryl

[jaxem]

susanne
you’re about the same age as my wife who is also striving for a “mini” transplant. Unlike you, however, she has not achieved remission to qualify for an umbilical cord transplant. Cord stem cells are much more sensitive and unless the blast cells are beaten back sufficiently, will not take over in the body. i’m curious about how you came to the decision of having what I think you are alluding to, a haplo transplant where 1/2 of the stem cells from your daughter will match. I understand that Hopkins is quite experienced in this procedure. when you state “relapse”, you mean if you should come out of remission. we’ll hope that never happens. normally, in a “mini,” an older adult cannot tolerate a complete ablasion or destruction of your blood cells the way a younger adult or child can so they do a partial destruction or “mini” usually using a chemical called fludaribine and a total body radiation, give autoimmune drugs, then infuse the donor stem cells. hopefully the new stem cells take over and kill off the rest of your original cells (including the blast &/or defective displastic cells)with minimal impact to the body (graft vs host disease). In about 100 days, T cells form sufficiently to restore blood cell functions.

[Suzanne]

Thank you Jack. I know the outlines of the process-pretty much as you have described. I am looking for people who have actually done it-just for feed back on the actual experience.I don’t think there are many.
I am not quite sure how I stand right now. The 5q- and another minor chromosome change showed up in a routine BMB in July which caused alarms about whether I might be relapsing. So far , if anything my counts that were already ok have improved so I don’t seem to be in immediate danger beyond that later BMB’s showed an increase in the % of defective cells-which indicated that they weren’t going to die or be killed off as a defective cell should be-but no blasts and no leukemia cells. I have been so far outside what usually happens to people that have the type of disease that I originally had that it makes it even harder to know what should be done if I have a problem. Because of the long remission they are comparing me to relapse after transplant and maybe somewhat secondary MDS because I don’t fit any known guidelines.
As far as I can tell the mini has less chance of killing you outright-or causing as much damage – because the chemo isn’t as strong but because all your original marrow is not killed the possibility of really bad GVH is much higher and probably the chance that it will not work and or or relapse is higher the a full transplant.

[gj]

Suzanne

You might want to contact BMTINFONET they could actually put you in contact with someone who has gone thru this proceedure and can answer your questions.
Wishing you the best.
gj

[jaxem]

susanne
your discussion is correct. you might also want to go over to the Leukemia & Lymphoma Society BBS and find an applicable topic with someone who has gone through this.

[Suzanne]

thanks to you both! I will try your suggestions. I think a lot of people have not found the new location of this forum-or very few people have gone the mini route. I see the spamers had no trouble following us to the new location. The administrator needs to check out “SpongeBob”

[jaxem]

suzanne
interested in your reply as to how you arrived at the decision to go with your daughter as a donor? true, the haplo is very new & experimental, however, the “mini” is not.

[Suzanne]

My doc said he was putting my criteria into the bone marrow pool.I have not heard that there were any results. And I still have a lot of questions to ask. Why they would use a child if they found a better match in the bone marrow pool-or if they would- but it seems to me I remember him saying when I was first diagnosed and this was mentioned as an alternative if we got to a place “where our back was against the wall” almost 5 years ago that they were finding the risk about the same . I will let you know when he gives me an answer now as I weigh whether to even try this.

[jaxem]

suzanne
you raise good questions. I was part of a telephone discussion with Dr. Joachim Deeg from The Hutchinson Clinic last summer & have researched a lot in this area. what I’ve learned is that if you’re looking for a donor, the 1st choice is a matched related donor (MRD) like a sibling, then 2nd is a matched unrelated donor (MUD) such as through the international registry. Only 30% get through these 2 choices. The next choice is an umbilical cord donor (UCB) which is easier to match BUT to qualify for it is another thing. Then you get into other experimental transplants such as haplo, etc. If you know more about this or can alter my above discussion, please reply otherwise. I know Hopkins doesn’t do Cords but is big on haplos. Fairview (Univ. Minnesota) & MD Anderson do both which scare me because of mixed agendas however, I do know Fairview calls their haplos as experimental. at this point, i’m dragging my feet on a haplo for my wife.

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