[Anonymous]

Triple Transplant

by Anonymous on Mon Feb 21, 2011 5:13 pm

I have been in treatment for five years and four years since my second transplant, an allo from my brother. I am in relapse now and the plan is to give me a third transplant of my brother's stored frozen stem cells.
Does anyone out there have any experience with this? Any success, good or bad would be good to know of. I am treated at MD Anderson Cancer Center in Houston Texas. Wonderful place and wonderful people.

Hugh

[karenh]

Re: Triple Transplant

by karenh on Wed Mar 02, 2011 7:39 pm

Hugh,
I just tried to post but had evidently not signed in so sorry if this goes to you twice.
I have not had a third transplant but did have an auto/allo combination two years ago.

Best wishes for you and your family whatever you decide .I hope thqtt you post again to let us know how things go.
KarenH

[turbineman]

Re: Triple Transplant

by turbineman on Sat Mar 05, 2011 7:51 pm

Thank you Karen,
I have learned that this is more appropriatly called "Mini Allos". They will just be giving me more of my brother's stem cells several times over months. This will be the third time I am doing transplant but now without chemo or radiation.
This will be done 3/29 at MD Anderson Cancer Center in Houston Texas. They have a group there that specializes in Multiple Myeloma and I recommend them highly.
I will post again with the results.

Thanks again,
Hugh

[turbineman]

Re: Triple Transplant

by turbineman on Mon Apr 11, 2011 6:59 pm

The Mini-Allo was done and I am doing fine. It takes 2 to 4 months to see any positive effect. I return in 6 weeks for testing and in 3 months, if all is well, they will give me another Mini-Allo. This is being done under a Research Protocol and is not standard treatment. Some have been done and many of those have gotten down to zero M-protein spike.
When I have progress results I will post it here for the benefit of any that are interested!

Hugh

[karenh]

Re: Triple Transplant

by karenh on Mon Apr 11, 2011 9:47 pm

Hugh,
That's great! I'm in year 3 after an auto-mini-allo and still in remission but have been wondering about options when/If I relapse. I hope that you have good news with the numbers and a long, long remission!
Karen

[turbineman]

Re: Triple Transplant Update

by turbineman on Mon Dec 05, 2011 5:39 pm

Doing very well. My Paraprotein number is dropping even though I have been off Maintenance Chemo since starting the Mini-allo series in March. I have just returned from having the fourth and last Mini-allo. For those missing previour posts, I had an Auto in 2006, an Allo in 2006 and now the series of MIni-allo. I am very fortunate and will never forget what my brother has done for me in giving me his stem cells.

Hugh

[letsbeatthis]

Re: Triple Transplant

by letsbeatthis on Mon Jan 09, 2012 4:16 pm

Hi Hugh,
I hope things will just keep getting better for you this 2012.
My husband was diagnosed with multiple myeloma this past August and we are waiting to do his first auto.
However the doctors are already mentioning an allo for him. We already found a match - his brother.
May I ask why you had to do an allo back in 2006?
And in general, how did that go?
Did you have to deal with graft vs host?
I'm very scared about this procedure since it has more risks.. but doctors say this could be a good option for him since he is only 41 years old.

How about this mini-allo.. is that different from the procedure you had done in 2006?
Any side effects? graft vs host? I assume maybe not since genetically, the marrow you have is now the same as what you got in 2006.. but feel free to comment.

Karen,
I want to know your story as well and how your allo went.
Only if you have time and would like to share.

Thanks..

Any information will really help us to prepare for this esp hearing from folks who had them done.

Jo

[turbineman]

Re: Triple Transplant

by turbineman on Fri Jan 13, 2012 4:23 pm

Karen and Jo,
I am more than glad to share my experiences, especialy for the benefit of anyone just starting down this road to treatment. I am starting into my seventh year of treatment and can remember what it was like trying to learn what is needed to make choices with various approaches. By now you know there is no standard for treatment.
I will do my best to answer your questions and if there are others please feel free to ask. First my treatments are done in Houston at MD Anderson Cancer Center. My local Oncologist here at home in Florida does well at following their guidance and direction. My overall treatment was laid out in Houston and started with home chemo treatments to lower my "M-protein" spike prior to transplant. I took Thalidomide and Velcade and was responsive and my numbers went down. This may not be the treatment for others and everyone may not benefit from this.
I agreed to be treated in a clinical trial that included first an Auto Transplant and then within three months an Allo Transplant. I was a good candidate in that my brother was a tissue match and I was in good physical condition for my age, 61 at the time. There were several variables in this group for research, chemo variable etc but the main test was, does this type double transplant give survival benefit.
After the Auto I did not achieve a "Zero" for my M-protein number. With that I was put on Chemo Maintenance. Next I had the Allo and also did not achieve the desired Zero and was continued, at home in Florida on Chemo Maintenance. My numbers were in the tenths, trended down but due to Neuropathy damage, had to cease the Thalidomide.
I have enjoyed five years of extended life, most likely as a result of these transplants. I had minor GVHD in the form of mouth sores. This was treated with a swish and cleared up. My home Oncologist attributes this period of success to the transplants as I have only been on a steroid these last several years since stopping the Thalidomide.
What I have calleed my "third transplant" is better known as a Mini-Allo Transplant. They approached me about doing it because I was doing well and responded well to my brother's donated cells. This procedure, as explained to me, is not for rescue and does not produce a quick response. What is different with Mini is that there is no chemo or radiation used to kill off cells. They just give you a smaller dose of the donor cells. This was done in a Research Protocol. Not to get technical but small in the case of cells is like 50 million. I had this in March, June, September and finally November 2011. There are no more of my brother's cells in frozen storage now, but I know he would donate again if needed.
One question I missed, just looked back, with the Mini there is still the same GVHD risk even though I am kind of changed over to my brother's marrow and blood. I too thought that since the major transplant in 2006 and my body changing there would not be that risk, but it is. I have had the mouth sores, this month in fact and am treating with swishes of steroids.
The good news for me is that my M-protein number, not the only indicator, but one I graph (I'm an engineer), is droppng slowly. Only one tenth a month but in the right direction for two months.
Yes it is scary but for me, I did not find it as bad to go thru as many describe. Pain and discomfort is different for eveyone but I would encourage you to go forward with it if that is what a good place is recommending. Today they are doing large numbers of transplants, many at MD Anderson and the University of Arkansas, now famous for doing two Auto Transplants. There is greater success today and more experience out there.
I am 67 years old and would only give encouragement to your husband of 41 in going forward with this. I hope this story is viewed as a success story as life has been good this six years and the future looks that way to me as well!
The very best of life for 2012, any further questions, please ask!

Hugh

[turbineman]

Re: Triple Transplant

by turbineman on Fri May 10, 2013 8:35 pm

I would like to post an update, it appears there are a lot of views of this subject and in the interest of keeping this information current. I continue with a very low M-spike with no maintenance needed. It is so nice to not have to take the dex or any maintenance chemo. I am two years and two months since stopping treatment to get the Mini-allo series of transplant.

Now I am half way into my eighth year since starting treatment. Life is good and while I have a good bit of neuropathy, need much sleep, these are small inconveniences to be able to continue to enjoy my retirement in Florida., In july I will have my 69th birthday at our Pocono Pa mountain retreat. We look forward to that change.

I add that last paragraph to demonstrate that my quality of life is good, maybe not perfect, but I am happy to continue on with my life.
I give much thanks for my treatment success to MD Anderson Cancer Center in Houston Texas.

Hugh