I'm finding myself between a rock and a hard place and need help. This is the history of my disease:
I was diagnosed in Aug 2010 with kappa light chain multiple myeloma at 46 yrs old. I did 4 cycles of Revlimid Dex and Velcade, then had an autologous transplant in Dec. 2010. After the transplant I was in a "very good, partial remission" and then approx 100 days post-transplant, I lost my graft most likely due to adenovirus. I received a stem cell boost to correct this, which sent me into a complete remission. My maintenance drugs are Velcade, Revlimid and aredia. At my 1 yr workup my kappa light chain had gone up and have since gone up twice more 3 - 5 - 7. So I am trying to figure out my best option from here. As my remission was so short another autologous transplant on its own is not an option. The only option really I have been given is a tandem auto then allo. I'm having both my sisters checked for a match but have been told that even if they don't match my doctor would advise a non related donor. This sounds pretty scary to me and I know the stats are not good. My doctor also said to speak to other specialists who agree and disagree with him to get a full picture to any other options out there. I am considering a watch and wait approach hoping that my numbers will plateau and I can live with a partial remission. However if regular testing shows that is not an option and the multiple myeloma is growing what then?
So my question is: Is there anyone out there who has gone through a tandem that will share there experience good and bad? Is there anyone you would advise me to see. At the moment I see Dr McGuirk at Kansas University hospital and Dr Richardson at Dana Farber. The names I have been given to go and get a second/third opinion are Bart Barlogi - Uni of Arkansas, Raj Kumar - Mayo and Jim Berenson - Cedar Sinai. If anyone has come out of remission this early and is following another plan please let me know.
When I was diagnosed I was pretty fit running and riding my bike, I'm still pretty active and in good shape, my kidneys bounced back after the Melphalan and my Creatinine is at 1.5 which is probably about my baseline. I have kids that are 5 and 3 and I really want to find a way of being around long enough so they remember me.
Any help with information would be much appreciated.
Forums
-
BPHD - Name: Brian
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Friday 13th August 2010
- Age at diagnosis: 46
Re: Needing information.
Brian,
Very sorry to hear you are going through this. One of Dr. Libby's colleagues at the Seattle Cancer Care Alliance, Dr. William Bensinger, is considered one of the top Doctors in the world with regard to Reduced Intensity Allo transplantation. Sloan Kettering has been having success with a TCell depleted Allo approach followed by DLI's for relapsed patients.
http://ash.confex.com/ash/2011/webprogram/Paper42075.html
The Doctors you list are all top Myeloma experts, so you will recieve great advice from any of them. I wanted to mention the Doctors/Institutions above because they are two who I associate with Allo transplants.
I ended up doing a Tandem Auto-Allo as part of my upfront therapy. I am nine months out and I am doing great. Try to get your disease to a low level if you decide to go the Allo route. I was in CR when I did mine. It is a very difficult situation if you come out of your Allo with active disease. The Sloan Kettering study uses ATG to help prevent GVHD - I used it and have had no problems with GVHD. You mention that your Creatinine is 1.5. One of the anti-rejection meds I used was Tacrolimus. My baseline is in the .5 range and mine went up to 1.8 while I was taking Tacrolimus. It has gone back down since I have been off the Tacrolimus, but I would be a little concerned if you had the same type of increase I had. Hope that helps.
Good luck,
Mark
Very sorry to hear you are going through this. One of Dr. Libby's colleagues at the Seattle Cancer Care Alliance, Dr. William Bensinger, is considered one of the top Doctors in the world with regard to Reduced Intensity Allo transplantation. Sloan Kettering has been having success with a TCell depleted Allo approach followed by DLI's for relapsed patients.
http://ash.confex.com/ash/2011/webprogram/Paper42075.html
The Doctors you list are all top Myeloma experts, so you will recieve great advice from any of them. I wanted to mention the Doctors/Institutions above because they are two who I associate with Allo transplants.
I ended up doing a Tandem Auto-Allo as part of my upfront therapy. I am nine months out and I am doing great. Try to get your disease to a low level if you decide to go the Allo route. I was in CR when I did mine. It is a very difficult situation if you come out of your Allo with active disease. The Sloan Kettering study uses ATG to help prevent GVHD - I used it and have had no problems with GVHD. You mention that your Creatinine is 1.5. One of the anti-rejection meds I used was Tacrolimus. My baseline is in the .5 range and mine went up to 1.8 while I was taking Tacrolimus. It has gone back down since I have been off the Tacrolimus, but I would be a little concerned if you had the same type of increase I had. Hope that helps.
Good luck,
Mark
-
Mark
Re: Needing information.
Hi, I was diagnosed with myeloma 10 years ago, at the age of 42. I have had both auto and allo transplants, as well as other treatments, such as various chemos and radiation. My experience with the transplants wasn't too bad. The first auto was in 2002 and I got just 16 months remission. In 2007, I had another auto followed directly by allo with my brother's cells. I got 2 and a half years remission here. I had a reasonable amount of GVH, which is a good thing, however I didn't need to be admitted to the hospital. My main trouble was gvh in the eyes, liver, skin, mouth,and stomach. All are treatable with anti-rejection drugs,other meds and steroids. I know I made the right decision, however having the 2 transplants together is difficult, but manageable.Unfortunately, after 2 and a half years, the myeloma returned with tumors in many areas. However after 2 cycles of Velcade and just a few radiation treatments, I am in remission ever since 2010. I also had my brother's leukocytes infusion in July 2010. I presently have no active myeloma, however I just had spinal fusion, one month ago, for several collapsed fractures in my spine, due to myeloma over the years. However, I am doing fine and hope the myeloma stays away for a very long time. It has been 2 years since I've had any treatment, such as chemo.I hope this gives you some insight, and wish you every success in your treatment decisions.
-
cathysharpe
Re: Needing information.
I'm sure others in this group are willing to share their experiences. Not sure how you get to Boston for Dana Farber but a close specialist is Dr Noopur Raje at Mass General. I think there are some in this group currently being treated by her. Wishing you successful treatment.
Re: Needing information.
Thank you so much for the responses, as much information as I can get is great. I am overwhelmed by having to make some big decisions in the near future. Just a few weeks ago I thought I was looking at years more in CR and now the best option I have at the moment seems to have 25% chance of working, crazy.
Mark, thanks I’m passing questions on to my doc regarding the T-cell link. My kidneys have always been involved and I guess there is a question as to how much they can take. I ended up in hospital after getting melphalan because my creatinine went up and peaked at 6.1. Luckily I did not need dialysis. But I guess living on dialysis is still living if that is the only option.
Cathy, wow, I’m glad you are doing well, it sounds like you have been through the ringer. Do you have normal kidney function? Long may your remission continue.
I will be in Boston in May for what was going to be a 6 month check up visit, though now I guess it will be a lot more important.
The concerns that are keeping me up at night at the moment are:
Next week it is proposed to do start 2 cycles of RVD with a view to harvesting more stem cells. After all the Revlimid and the other drugs I’ve had I worry that harvesting will be very difficult. I needed neupogen and mozabil the first time.
Getting though my autologous transplant was not as smooth as I was hoping for so a tandem is very daunting.
I’m told GVHD can happen for a couple of years post transplant. My wife just happens to be a nurse in a transplant ICU and I made her describe what GVH looks like and it sounds like it’s not a pretty death.
I’m not looking for answers here just anyone’s experiences. .
Mark, thanks I’m passing questions on to my doc regarding the T-cell link. My kidneys have always been involved and I guess there is a question as to how much they can take. I ended up in hospital after getting melphalan because my creatinine went up and peaked at 6.1. Luckily I did not need dialysis. But I guess living on dialysis is still living if that is the only option.
Cathy, wow, I’m glad you are doing well, it sounds like you have been through the ringer. Do you have normal kidney function? Long may your remission continue.
I will be in Boston in May for what was going to be a 6 month check up visit, though now I guess it will be a lot more important.
The concerns that are keeping me up at night at the moment are:
Next week it is proposed to do start 2 cycles of RVD with a view to harvesting more stem cells. After all the Revlimid and the other drugs I’ve had I worry that harvesting will be very difficult. I needed neupogen and mozabil the first time.
Getting though my autologous transplant was not as smooth as I was hoping for so a tandem is very daunting.
I’m told GVHD can happen for a couple of years post transplant. My wife just happens to be a nurse in a transplant ICU and I made her describe what GVH looks like and it sounds like it’s not a pretty death.
I’m not looking for answers here just anyone’s experiences. .
-
BPHD - Name: Brian
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Friday 13th August 2010
- Age at diagnosis: 46
Re: Needing information.
Hi Brian, I am doing reasonably well and yes, I do have normal kidney function.
I know right now you are probably totally overwhelmed with all this crazy myeloma stuff. But remember there are treatments for just about every problem that pops up with myeloma. Don't think of it as life being over....think of this as a new beginning with many new treatments to make you well again, so you may enjoy many long years with your boys. Also, whatever option you decide with respect to transplants, remember, you have a great team of doctors that will make the best decision for you. Don't feel you are alone, and fighting myeloma by yourself, because that's not the case. Every hospital has a wonderful support team, which include terrific nurses and doctors who you will come to trust, as you will see them as being very knowledgeable and caring. I do wish you all the best, take each day as it comes, and try to be positive. There are thousands of people around you with myeloma and living normal lives. When the myeloma becomes active, they treat it. And the time in between treatments, is yours to enjoy to the fullest!! Remission feels great!!!! Good luck!!
I know right now you are probably totally overwhelmed with all this crazy myeloma stuff. But remember there are treatments for just about every problem that pops up with myeloma. Don't think of it as life being over....think of this as a new beginning with many new treatments to make you well again, so you may enjoy many long years with your boys. Also, whatever option you decide with respect to transplants, remember, you have a great team of doctors that will make the best decision for you. Don't feel you are alone, and fighting myeloma by yourself, because that's not the case. Every hospital has a wonderful support team, which include terrific nurses and doctors who you will come to trust, as you will see them as being very knowledgeable and caring. I do wish you all the best, take each day as it comes, and try to be positive. There are thousands of people around you with myeloma and living normal lives. When the myeloma becomes active, they treat it. And the time in between treatments, is yours to enjoy to the fullest!! Remission feels great!!!! Good luck!!
-
cathysharpe
Re: Needing information.
Dear Brian,
I can't be as helpful as Cathy, as yesterday was only the 6-month anniversary of my auto-allo tandem transplant. However, in my experience the allo was much easier to take than the auto. (I am 45 years old and was diagnosed two years ago.) It was very discouraging that the Rev-Velcade-Dex only worked for 6 months for me. The next year was spent trying to get my numbers low enough for a successful transplant. When not even two rounds of VDT-PACE in the hospital brought me where my doctor wanted me to be (she wanted me to have an m-protein of under 1, and I was still at about 2.5...) she decided to go for it anyway, but felt strongly that, given my history, I should go right into an allo three months later. She was afraid that if I relapsed after the auto sct, she wouldn't be able to bring my numbers low enough for the allo. She also believed that I needed a new immune system to put up a better fight. This was a very difficult decision for us to make, especially after completing the auto and finding myself with the lowest numbers I had ever had (but still with residual). I wrote to many other doctors and spoke with many other patients, but ultimately I decided to trust the instincts of my oncologist at Johns Hopkins (who has admitted that the treatment is part science and part art!).
My brother was a half-match, so I had a mini-haplo allogeneic transplant (also called myloablative, I think??), and it went very smoothly. The chemos used were not nearly as difficult to take as melphalan, in my experience, and I can count on one hand the number of times I felt queasy during the entire process. It was all out-patient, and I was even able to walk across the street to every single appointment (something I could not do during the auto, when I needed a wheelchair!). My GVHD occurred on Day 100 as acute gvhd, but it was just a body rash on the arms and legs that cleared up quickly. (Like Cathy, I had taken Tacrolimus, but it was stopped very early as part of a trial I was in, and also because my doctor wanted to "release" the new immune system asap). Yesterday, though, at my 6-month appointment, I mentioned to my doctor that my toothpaste has been stinging lately. She quickly determined that I have gvhd in the mouth, and has me swishing 6x a day with a steroid mouthwash. She likes to see a bit of mild gvhd, I guess to have proof that the new immune system is alive and well.
Otherwise I feel WONDERFUL! I walk 4 miles every day, am off all my pain medicine for the compression fractures I had upon diagnosis, and am very active with the kids. (I have had pneumonia twice but it was easily handled and didn't require hospitalization.) We went on a cruise just 4 months after the allo, and on Saturday we are leaving for Mexico for a week. My doctor doesn't really encourage these vacations, but she places a high priority on family time, and so she makes it work for me (although I do have strict instructions not to leave the resort, and not to sunbathe). I tell you this just to encourage you never to stop living! Even a month after my auto, we spent a week at the beach with all our family, and then right between transplants we went to Alaska for 10 days (the plane ride was of most concern to my doctor, but she let me go). Having something to look forward to is great medicine, not just for you, but for the kids as well. As soon as we make a special memory, we plan another one (budget providing, of course, but our last cruise was a gift from friends to celebrate my first vgpr!). I don't know how long this remission will last (it's still not a CR, by the way, but going down steadily at about 0.06 right now), but I try to live in the moment and to plan great memories for the future! Blessings, Dana
I can't be as helpful as Cathy, as yesterday was only the 6-month anniversary of my auto-allo tandem transplant. However, in my experience the allo was much easier to take than the auto. (I am 45 years old and was diagnosed two years ago.) It was very discouraging that the Rev-Velcade-Dex only worked for 6 months for me. The next year was spent trying to get my numbers low enough for a successful transplant. When not even two rounds of VDT-PACE in the hospital brought me where my doctor wanted me to be (she wanted me to have an m-protein of under 1, and I was still at about 2.5...) she decided to go for it anyway, but felt strongly that, given my history, I should go right into an allo three months later. She was afraid that if I relapsed after the auto sct, she wouldn't be able to bring my numbers low enough for the allo. She also believed that I needed a new immune system to put up a better fight. This was a very difficult decision for us to make, especially after completing the auto and finding myself with the lowest numbers I had ever had (but still with residual). I wrote to many other doctors and spoke with many other patients, but ultimately I decided to trust the instincts of my oncologist at Johns Hopkins (who has admitted that the treatment is part science and part art!).
My brother was a half-match, so I had a mini-haplo allogeneic transplant (also called myloablative, I think??), and it went very smoothly. The chemos used were not nearly as difficult to take as melphalan, in my experience, and I can count on one hand the number of times I felt queasy during the entire process. It was all out-patient, and I was even able to walk across the street to every single appointment (something I could not do during the auto, when I needed a wheelchair!). My GVHD occurred on Day 100 as acute gvhd, but it was just a body rash on the arms and legs that cleared up quickly. (Like Cathy, I had taken Tacrolimus, but it was stopped very early as part of a trial I was in, and also because my doctor wanted to "release" the new immune system asap). Yesterday, though, at my 6-month appointment, I mentioned to my doctor that my toothpaste has been stinging lately. She quickly determined that I have gvhd in the mouth, and has me swishing 6x a day with a steroid mouthwash. She likes to see a bit of mild gvhd, I guess to have proof that the new immune system is alive and well.
Otherwise I feel WONDERFUL! I walk 4 miles every day, am off all my pain medicine for the compression fractures I had upon diagnosis, and am very active with the kids. (I have had pneumonia twice but it was easily handled and didn't require hospitalization.) We went on a cruise just 4 months after the allo, and on Saturday we are leaving for Mexico for a week. My doctor doesn't really encourage these vacations, but she places a high priority on family time, and so she makes it work for me (although I do have strict instructions not to leave the resort, and not to sunbathe). I tell you this just to encourage you never to stop living! Even a month after my auto, we spent a week at the beach with all our family, and then right between transplants we went to Alaska for 10 days (the plane ride was of most concern to my doctor, but she let me go). Having something to look forward to is great medicine, not just for you, but for the kids as well. As soon as we make a special memory, we plan another one (budget providing, of course, but our last cruise was a gift from friends to celebrate my first vgpr!). I don't know how long this remission will last (it's still not a CR, by the way, but going down steadily at about 0.06 right now), but I try to live in the moment and to plan great memories for the future! Blessings, Dana
-
Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Needing information.
Dear Brian,
I forgot to mention one more thing (forgive me for so much posting!). My oncologist was pretty convinced that a mini-haplo using my brother would be just as effective as a full, unrelated match. There was also some research sent my way about how a half-match might even be more effective in the long run, due to the gvh effect (and the nurses all rejoiced when I finally showed signs of that). She also mentioned the benefit of using a family member so that there would always be "fresh" lymphocytes available for future possible infusions. (Johns Hopkins does not freeze stem cells, so perhaps that has something to do with it.) Another doctor that I spoke to said he would have pursued a second auto sct before the allo, but I decided to trust my original doctor on that one, since she had already brought my case in front of so many of her colleagues. She does not usually pursue such an aggressive approach and said it was an unusual recommendation from her (and scts are not her front-line treatment preference). I'll say some prayers for you to find peace in your own decision-making. Best of luck, Dana
I forgot to mention one more thing (forgive me for so much posting!). My oncologist was pretty convinced that a mini-haplo using my brother would be just as effective as a full, unrelated match. There was also some research sent my way about how a half-match might even be more effective in the long run, due to the gvh effect (and the nurses all rejoiced when I finally showed signs of that). She also mentioned the benefit of using a family member so that there would always be "fresh" lymphocytes available for future possible infusions. (Johns Hopkins does not freeze stem cells, so perhaps that has something to do with it.) Another doctor that I spoke to said he would have pursued a second auto sct before the allo, but I decided to trust my original doctor on that one, since she had already brought my case in front of so many of her colleagues. She does not usually pursue such an aggressive approach and said it was an unusual recommendation from her (and scts are not her front-line treatment preference). I'll say some prayers for you to find peace in your own decision-making. Best of luck, Dana
-
Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Needing information.
Dana
You can't post too much, I'm needing as much information as possible so thanks!
I guess I am trying to work out how dangerous the tandem transplant would be (not that I see an alternative yet). I've been told 75% mortality at the moment. The fact that I am deemed to have 'high risk myeloma', with kidney involvement and a chromosomal 13 abnormality may give me an even smaller chance of survival. Both my sisters are being hla typed so if either one was a match I guess that would give me a better prognosis, than with an unrelated donor. I will be asking questions regarding your type of allo Dana.
The only option I have at the moment - (and on Monday I will be starting the ball rolling on going to see at least a couple of other specialist, who will maybe have more options) to start RVD to get the disease into a place to harvest more stem cells (I have one more transplant frozen, however they think it may have too much myeloma in it so it would be a backup and would not be used for the tandem, as long as I harvest more.) Harvest and then do the tandem. Or continue on maintenance therapy and see how long it would take for the myeloma to run its course. I absolutely do not want to give up but if I have a very small chance surviving a tandem transplant and it killing me in the next 12 months versus living with the disease for the next 3 year and dying then what is the more foolhardy thing to do...I don't know. Going out in a 'blaze of glory' trying everything I can to get to CR is fine but for my kids maybe the best thing is to have 2 more (just guessing) years with them.
Statistics are interesting things, why is the mortality rate so bad for the auto/allo transplant? And are there any contributing factor that help or hurt my situation?
The analogy I tried to focus on with the auto transplant that I have had to help me get through it was related to my experiences of cycling. I used to love finding a long steep hill and riding up it as fast as I could. I felt that at difficult parts of the transplant process I could draw on my fighting spirit, I would remember the pain in my body as I fought up that hill and that would help me. However as I got through the transplant the analogy only made sense and felt similar if as I started the climb on my bike I was hit by a car and when I came to laying in the ditch, I then had to get back on my bike and attack the hill. Way harder that I imagined.
So again any more information can only help me.
You can't post too much, I'm needing as much information as possible so thanks!
I guess I am trying to work out how dangerous the tandem transplant would be (not that I see an alternative yet). I've been told 75% mortality at the moment. The fact that I am deemed to have 'high risk myeloma', with kidney involvement and a chromosomal 13 abnormality may give me an even smaller chance of survival. Both my sisters are being hla typed so if either one was a match I guess that would give me a better prognosis, than with an unrelated donor. I will be asking questions regarding your type of allo Dana.
The only option I have at the moment - (and on Monday I will be starting the ball rolling on going to see at least a couple of other specialist, who will maybe have more options) to start RVD to get the disease into a place to harvest more stem cells (I have one more transplant frozen, however they think it may have too much myeloma in it so it would be a backup and would not be used for the tandem, as long as I harvest more.) Harvest and then do the tandem. Or continue on maintenance therapy and see how long it would take for the myeloma to run its course. I absolutely do not want to give up but if I have a very small chance surviving a tandem transplant and it killing me in the next 12 months versus living with the disease for the next 3 year and dying then what is the more foolhardy thing to do...I don't know. Going out in a 'blaze of glory' trying everything I can to get to CR is fine but for my kids maybe the best thing is to have 2 more (just guessing) years with them.
Statistics are interesting things, why is the mortality rate so bad for the auto/allo transplant? And are there any contributing factor that help or hurt my situation?
The analogy I tried to focus on with the auto transplant that I have had to help me get through it was related to my experiences of cycling. I used to love finding a long steep hill and riding up it as fast as I could. I felt that at difficult parts of the transplant process I could draw on my fighting spirit, I would remember the pain in my body as I fought up that hill and that would help me. However as I got through the transplant the analogy only made sense and felt similar if as I started the climb on my bike I was hit by a car and when I came to laying in the ditch, I then had to get back on my bike and attack the hill. Way harder that I imagined.
So again any more information can only help me.
-
BPHD - Name: Brian
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Friday 13th August 2010
- Age at diagnosis: 46
Re: Needing information.
Brian,
It is definitely a difficult decision to make. I agree that Dana made some great points in her posts and they were very informative. Do the Doctors think they can get your Cancer levels down using drugs at this point? It would be great if you could avoid that Auto. The Tandem Auto-Allo concept is an attempt to break up the high dose chemo from the Immunotherapy from the Allo. IMO the Sloan Kettering concept in the link I sent is brilliant. The TCell depletion lessens the Immunotherapy but you are getting a "clean" graft. The DLI's that are discussed are given like a blood transfusion - no Chemo necessary - they provide the Immunotherapy. The way I look at it, you would be avoiding a round of chemo, unlike the Tandem Auto-Allo approach where you have to use Chemo twice. That would be great in your case since the Melphalan interfered with your Kidney function the first time. If they thought they could do it in the way Sloan Kettering was doing it, you would not need to harvest new cells. You have some stem cells already stored in case of emergency.
Obviously I cannot comment on what your chances of having a successful Allo are, but IMO in Myeloma the problem with the Allo is that the Doctors are using them at the wrong time. What is happening is they are applying the Allo to relapsed patients (particularly to ones that have relapsed off Autos). I have pointed this stat out before. There is a study from 2004 in which the overall TRM of the Allo is 18%, but:
"In a subgroup of patients with chemosensitivity at transplantation and no relapse after prior high-dose chemotherapy who underwent transplantation with peripheral blood stem cells (n = 46), the cumulative risk of TRM at 1 year was only 8% (95% CI, 1%–54%)."
http://www.bbmt.org/article/S1083-8791(04)00272-1/fulltext
In 2012, IMO the Allo is not a high risk procedure if it is applied at the proper time by an experienced Transplant Doctor.
On the plus side, if one of your Sisters is a match, the pair of a Female Donor to Male Recipient is associated with the lowest relapse rate. If one of them is a match, you should get a great deal of Immunotherapy from the Allo/DLI's.
Keep the mindset you can beat this thing. We are all pulling for you.
Mark
It is definitely a difficult decision to make. I agree that Dana made some great points in her posts and they were very informative. Do the Doctors think they can get your Cancer levels down using drugs at this point? It would be great if you could avoid that Auto. The Tandem Auto-Allo concept is an attempt to break up the high dose chemo from the Immunotherapy from the Allo. IMO the Sloan Kettering concept in the link I sent is brilliant. The TCell depletion lessens the Immunotherapy but you are getting a "clean" graft. The DLI's that are discussed are given like a blood transfusion - no Chemo necessary - they provide the Immunotherapy. The way I look at it, you would be avoiding a round of chemo, unlike the Tandem Auto-Allo approach where you have to use Chemo twice. That would be great in your case since the Melphalan interfered with your Kidney function the first time. If they thought they could do it in the way Sloan Kettering was doing it, you would not need to harvest new cells. You have some stem cells already stored in case of emergency.
Obviously I cannot comment on what your chances of having a successful Allo are, but IMO in Myeloma the problem with the Allo is that the Doctors are using them at the wrong time. What is happening is they are applying the Allo to relapsed patients (particularly to ones that have relapsed off Autos). I have pointed this stat out before. There is a study from 2004 in which the overall TRM of the Allo is 18%, but:
"In a subgroup of patients with chemosensitivity at transplantation and no relapse after prior high-dose chemotherapy who underwent transplantation with peripheral blood stem cells (n = 46), the cumulative risk of TRM at 1 year was only 8% (95% CI, 1%–54%)."
http://www.bbmt.org/article/S1083-8791(04)00272-1/fulltext
In 2012, IMO the Allo is not a high risk procedure if it is applied at the proper time by an experienced Transplant Doctor.
On the plus side, if one of your Sisters is a match, the pair of a Female Donor to Male Recipient is associated with the lowest relapse rate. If one of them is a match, you should get a great deal of Immunotherapy from the Allo/DLI's.
Keep the mindset you can beat this thing. We are all pulling for you.
Mark
-
Mark
21 posts
• Page 1 of 3 • 1, 2, 3