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Donor (allo) bone marrow transplant
I received a stem cell transplant in april 2011 and by october my counts were climbing and I was on a Revlimid maintenance. (I have an aggressive form of myeloma). Now I have been given a choice to take chemo and maybe live 4 years, or try a bone marrow transplant (with a donor) any suggestions?
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ken english - Name: ken english
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: september 2010
- Age at diagnosis: 40
Re: Donor (allo) bone marrow transplant
Hi Ken! Would you be in a position to seek out other opinions also? In my experience, one of patient's absolute 'pet peeves' (an understatement) is when they are given a prognosis of life span. There are so many patients doing quite well, and as you can read on this website, many are doing extensive research before coming to any definite conclusions about what path of treatment to take. I was given an estimate too, but with the caveat that if things went well, that could be well extended, and that treatments are improving all the time too. Haven't reached that first time estimate yet, but of course am hoping to get well beyond it. Best wishes to you. I am sure that the fine doctors associated with the Beacon may have some insights for you!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Donor (allo) bone marrow transplant
Hi Ken,
Just curious. Would you mind sharing what your induction and hi-dose chemo consolidation therapy was?
Just curious. Would you mind sharing what your induction and hi-dose chemo consolidation therapy was?
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Donor (allo) bone marrow transplant
My induction therapy was Revlimid, Velcade & dex. Five cycles and before my stem cell in April my high dose was melphalan.
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ken english - Name: ken english
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: september 2010
- Age at diagnosis: 40
Re: Donor (allo) bone marrow transplant
Hello from rainy Seattle Ken,
This is a very big decision and needs to be weighed carefully. I would tend to agree with some of the other repondents that a second opinion could be valuable. However, you might first ask your current myeloma physician to spend some more time with you going over your case. If you still need more information and explanation then visiting a large transplant center for a second opinion should help you to gain a better understanding of what the pros and cons of an allogeneic stem cell transplant are versus continuing chemotherapy.
Without question, and in spite of several well done trials, we do not know if the risk / benefit ratio is in favor of allogeneic stem cell transplantation whether it is performed in a newly diagnosed patient or in a relapse. For this reason allogeneic stem cell transplantation should be performed in the context of a clinical trial.
Best of luck in all things and particularly in your battle with this terrible disease!
This is a very big decision and needs to be weighed carefully. I would tend to agree with some of the other repondents that a second opinion could be valuable. However, you might first ask your current myeloma physician to spend some more time with you going over your case. If you still need more information and explanation then visiting a large transplant center for a second opinion should help you to gain a better understanding of what the pros and cons of an allogeneic stem cell transplant are versus continuing chemotherapy.
Without question, and in spite of several well done trials, we do not know if the risk / benefit ratio is in favor of allogeneic stem cell transplantation whether it is performed in a newly diagnosed patient or in a relapse. For this reason allogeneic stem cell transplantation should be performed in the context of a clinical trial.
Best of luck in all things and particularly in your battle with this terrible disease!
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Donor (allo) bone marrow transplant
I have decided to go ahead with an allogeneic transplant, I will go into hospital in the next few weeks. I have an identical match donor. I was hugely deflated when the myeloma came back after two years following a transplant using my own cells. I needed radiotherapy for bone destruction. . At 51 years I was given the option of an allogeneic SCT and I am aware of the risks but know that I would regret it if I didn't go for it.
I can only hope that I have made the right decision. I am lucky that I have a sibling with the ID match and that this has been offered. I was recently told that a fellow patient sailed through it and was discharged after only 4 weeks, so it is good news.
I can only hope that I have made the right decision. I am lucky that I have a sibling with the ID match and that this has been offered. I was recently told that a fellow patient sailed through it and was discharged after only 4 weeks, so it is good news.
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Andi
Re: Donor (allo) bone marrow transplant
Good Luck Andi. My thoughts and prayers are with you and your family. Please keep us informed on your progress as your info can certainly help others with their decisions.
Best of Luck
Art
Best of Luck
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Donor (allo) bone marrow transplant
Thanks Art.
My last message was my first submission to any forum.
It's incredibly hard for our families, the discisions we make are difficult, and the toxic treatments are hell. So I will try to update.
The next procedure I will have is to have a line installed. In the first week in hospital I will be given anti-rejection drugs with chemo, followed by a doze of methalan, then given the donor cells.
Hopefully all goes well and I don't suffer too much with "Graft v Host".
Wishing you all good health and strength
Andi
My last message was my first submission to any forum.
It's incredibly hard for our families, the discisions we make are difficult, and the toxic treatments are hell. So I will try to update.
The next procedure I will have is to have a line installed. In the first week in hospital I will be given anti-rejection drugs with chemo, followed by a doze of methalan, then given the donor cells.
Hopefully all goes well and I don't suffer too much with "Graft v Host".
Wishing you all good health and strength
Andi
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Andi
Re: Donor (allo) bone marrow transplant
I understand Andi. I am smoldering / early myeloma and there is not much time that goes by that it's not on my mind. So you are obviously you are much further along than me. I call it the "best friend I wish i never had" because its always right there with me. My favorite saying is "I cant say not a minute goes by, but certainly not 15 minutes go by, that I don't think about it".
I am 40 years old with three kids 10,12,14, but we are lucky to have this now and not 10 or 20 years ago. We will be alright! I had a doctor that suggested a tandem auto / allo for me when the time came. At the time I thought he was crazy. The more I read the more I wonder about that?
Keep posting Andi, It will become more and more comfortable for you. I was very uncomfortable at first.
Good Luck and God Bless
Art
I am 40 years old with three kids 10,12,14, but we are lucky to have this now and not 10 or 20 years ago. We will be alright! I had a doctor that suggested a tandem auto / allo for me when the time came. At the time I thought he was crazy. The more I read the more I wonder about that?
Keep posting Andi, It will become more and more comfortable for you. I was very uncomfortable at first.
Good Luck and God Bless
Art
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Art - Name: Art
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2011
- Age at diagnosis: 40
Re: Donor (allo) bone marrow transplant
Andi,
Best of luck with the procedure. I was diagnosed in the same time frame you were - I was in my 40's. My allo went very smooth. I actually decided after my second cycle of Induction to do an allo. I was responding well to the therapy but the thought of pumping the poison in my body long term sounded a lot worse than doing an allo. As far as I am concerned, doing the allo as soon as I achieved remission was the best decision I could have possibly made. I hope the allo turns out as well for you as it has for me.
Do you know if they are using ATG prior to transplant? It is usually given Days -3 through -1. Patients that use it have less chance of having GVHD. Worked great for me - I only had a mild Acute GVHD skin rash for 2 weeks and than a real mild skin rash for about 2 weeks 7 months after the procedure. No other problems. ATG actually kills Myeloma cells as well - so that is an added bonus. Also, do you know if they are using marrow or peripheral blood stem cells? Use of marrow is associated with less GVHD and is more responsive to treatment if GVHD occurs.
Just make sure to report to the nurses / doctors any minor change or anything that seems different to you as soon as it occurs. Catching any problem early is vital.
Mark
Best of luck with the procedure. I was diagnosed in the same time frame you were - I was in my 40's. My allo went very smooth. I actually decided after my second cycle of Induction to do an allo. I was responding well to the therapy but the thought of pumping the poison in my body long term sounded a lot worse than doing an allo. As far as I am concerned, doing the allo as soon as I achieved remission was the best decision I could have possibly made. I hope the allo turns out as well for you as it has for me.
Do you know if they are using ATG prior to transplant? It is usually given Days -3 through -1. Patients that use it have less chance of having GVHD. Worked great for me - I only had a mild Acute GVHD skin rash for 2 weeks and than a real mild skin rash for about 2 weeks 7 months after the procedure. No other problems. ATG actually kills Myeloma cells as well - so that is an added bonus. Also, do you know if they are using marrow or peripheral blood stem cells? Use of marrow is associated with less GVHD and is more responsive to treatment if GVHD occurs.
Just make sure to report to the nurses / doctors any minor change or anything that seems different to you as soon as it occurs. Catching any problem early is vital.
Mark
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Mark
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