Stem Cell Transplant

Hello!Â My Husband was diagnosed Jan. 07 with MM.Â He is 53.Â Been on thalidomide for 2 months now.Â Our local Oncologists has been treating him andÂ feels he is a canidate for a StemÂ Cell Transplant.Â We just went to Moffitt Cancer Center in Tampa for a Stem Cell Transplant Evaluation.Â The Doctor who is a specialist in MM and BMT recommendation is for an Auto transplant followed by anÂ Allo 3 months later.Â We were surprised by this.Â We have been discussing the Auto transplant with our local Dr. but we very shocked at the reccomendation of following up with an Allo.Â Sounds like the risks with an Allo are higher but according to Dr. that is your best chance of him living 20 more years versus just have an Auto and extending life by a couple years.Â Of course he stressed it is a personal decision but it is really confusing us!Â I believe we need to take things 1 step at a time and go forward with the Auto before thinking about the Allo.Â If anyone can offer adviceÂ we would appreciate it.Â WouldÂ like to hear from anyone who has had aÂ SCT.Â Â I has only been 2 months since diagnosis and although we have learned a lot I feel like we have a long way to go.Â

Thanks!Â

Submitted by Roxie on Sun, 03/30/2008 - 22:53.

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General MM

Stem Cell Transplant

Hi Roxie-

I am not an onc so take my opinion accordingly.

What stage is your husband's mm? Stage at diagnosis is an important factor in determining prognosis.

Without knowing any details I would say, yes, yes, yes, a autologus transplant followed by an allo transplant is extremely aggresive therapy. You and your husband are right to be shocked by this recommendation.

I have not read any studies which indicate anything about 20 year survival.

I have read several studies recently that point to the benefits of low dose therapies in combination such as revlimid, dexamethasone, velcade and thalidomide.

Peripheral bone marrow transplants yield complete remissions for only a small minoriity or patients- and will cause short and long term side effects in almost all.

As the saying goes, the devil is in the details. Yes, there are a small minority of mmers who will achieve long term complete remissions. However what is not discussed are the vast majority of mmers who achieve only short complete remissions, partial remissions or no remission at all. All the while suffering from debilitating side effects.

And I am only referring to auto transplants- the risks and side effects are greater when talking about allo transplants.

Please get a second opinion from a place like the Mayo clinic or from Dana Farber in Boston. I believe both institutions have done work in low dose therapies. If you can't get to those places, set up a phone consult with the mm specialist Dr. Brian Durie- someone on this list may have his number.

Please ask any and all questions- here on the list and to your oncs.

One more thought- is there a Dr. Hussein at Moffitt?Â Dr. Hussein is a mm specialist who used to work at the Cleveland Clinic and he specializes in mm management- if he works at Moffitt try to get a second opinion from him.Â JMOÂ

thanks and take it easy-

David

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Submitted by gttymail01 on Fri, 09/03/2010 - 03:50.

To each his own of course.

To each his own of course. Â I was diagosed in January of 06, very late in the game, with a great deal of bone damage. Â I am on revlimid. It was strongly suggested that I do the stem cell approach. Â The doctors suggested that the side effects would be minor inconveniences. Â And although that may be true for some, I have heard from many suggesting that their STC experience was anything but nice. Â After lots of prodding the doctors disclosed that there was not eminent emergency, or reason to do a SCT. That the decision could be postponed for a good deal of time without any regrets. Â So I wonder if in your situation what would happen if you wanted six months to make deal with this issue, or maybe a year?

The side effects of revlimid seem to be so much easier than thalidomide, is revlimid an option at all? Or having started thal, perhaps there might be an issue changing. Â

Personally for me, the stem cell transplant really sounds scary. Â I am doing my Â best to try other approaches including alternative suppliments. Â I am now down to 10 mg of revlimid, and my blood work seems really good. Â I hope to keep it there, if I have to do a change there are other chemo options. But with the suppliment therapies, I hope to rely very little on chemo.Â

Anything I've heard about Allo transplants was not encouraging. Â I'd be getting another opinion. Â It is possible that within a year or two, we will have some fairly exciting new drugs available....

KevinÂ

Submitted by Kevin Joseph on Mon, 03/31/2008 - 15:46.

Stem Cell Transplant

Hi, Roxie.

I agree with everything David has said. I've also heard very good things about Dr. Hussein at Moffitt from one of his patients. If you want to consult with Dr. Durie, director of the International Myeloma Foundation, his number is 310.423.0702. I believe that his telephone consultations cost $250. Cathy

Submitted by Cathy on Mon, 03/31/2008 - 17:54.

use your own stem cells!

Hello Roxie, I have had 2 stem cell transplants using my own stem cells. I do not recommend using another persons stem cells! I have seen people really suffer from having done so. If you can get your own, only do that! .. I would be happy to talk with you about my experience. in Belfast, Maine, 207-338-9999 from 7 am to 9 pm.. I met with Dr. Hussein in January. I really liked him. I did my stem cell transplants in Little Rock, Ark and in Zion, Ill (Dr. Redei, Cancer Treatment Center of

America., where they serve organic food, have a Reiki practitioner, acupuncturist, and other alternative healing modalities available.. . I had great results! Got into remission (from 98% cancerous bone marrow the first time and from 60% cancerous bone marrow a year ago) from both. Have been in remission for one year now.. taking 20-5 mg of Rev some of the time.. and doing lots of alternative stuff. Â blessings! good luck

wishing you growth and transformation as you heal I am an irregular emailer

Submitted by david Demere on Mon, 03/31/2008 - 18:31.

Stem Cell Transplant

I had an autologous (my own) stem cell transplant at the Mayo Clinic in 1/2001.Â For the next 17 months I required no drugs over than Aredia (IV bisphosphonate).Â When my counts started going up after 17 months I went on 150 mg thalidomide (plus I took 500 mg curcumin).Â My counts went down to almost normal for the next 2 1/2 years.Â When they started going up again I had to switch to 15 mg Revlimid plus 20 mg dexamethasone.

An allo transplant gives you a shot at a cure but there is still a 10-30% mortality in the first year.Â Given more time, I do believe they will get the allo to have acceptable numbers.Â IfÂ you decide to haveÂ an allo or mini allo, Fred Hutchinson in Seattle has by far the most experience and therefore should provide the best odds.

Terry

Submitted by tbmaz on Mon, 03/31/2008 - 19:57.

Stem Cell Transplant

Thank you for the info.Â We feel certain that we want to head in the direction of an auto transplant.Â We will not consider an allo at least at this time.Â It is very encouranging to hear you have been doing pretty well since 2001.Â Could you tell me a little more about your recovery post transplant and about the high dose chemo prior?Â

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