Kansas,
Stem Cell collection is generally done to collect enough cells for two transplants at most facilities. You need 2 Million minimum for one and most prefer to transplant in the 3-4 Million range. Any myeloma left untouched during the collection chemotherapy phase dies in the freezing process. When they are infused back to you, they are free and clear of multiple myeloma cells and are not the treatment but part of the treatment in that they are used to help you "recover" your immune system and get your WBC from 0 to 2.0 quicker to be able to have a fighting chance against infections.
In Little Rock (UAMS), they attempt to collect standardly enough for six transplants. I personally met two patients who had survived tandem transplants over 10 years but had developed leukemia as a result of the chemotherapy treatment, also a potential side effect - developing "other cancers" from the drugs used. Both patients were able to have treatment using their own stem cells, which were collected 10 years earlier. With leukemia you can't collect your own stem cells, which is why they need donor cells for transplant. For these multiple myeloma patients to have their own cells to help in their leukemia treatment was, of course miraculous, and a terrific "planning ahead" on the part of Dr. Barlogie.
My understanding of this difference is that
1) most multiple myeloma doctors don't believe having more than two SCT is of any value in combatting multiple myeloma and
2) storage of stem cells is not part of their budget.
UAMS being a research facility evidently has accommodated this storage issue to accommodate the researchers/physicians desire to have patient's stem cells in years to come to help deal with combatting further health issues related to multiple myeloma or their treatment, or perhaps potential new medical breakthroughs. There may be other more comprehensive reasoning behind why they collect for six, but that is what I was able to learn while I was there. I hope this helps.
Best,
Lori
Forums
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habubrat - Name: Lori
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2008
- Age at diagnosis: 48
Re: Tandem Autologous Transplant vs. Auto/Mini-Allo Combinat
I had a full auto in may 2004 and a mini allo in sept. 2004. 8 yrs later still in remisssion and in the best shape of my life> I play basketball 3 days a week and I am a single parent with four kids that live with me seven days a week. I still have my own stem cells frozen along with my sisters(perfect match) just in case. But hopefully will never need them. Best of Luck
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PC
Re: Tandem Autologous Transplant vs. Auto/Mini-Allo Combinat
PC,
Great story. I am just a little over 11 months from my Allo and I feel great. I am jogging and starting to lift weights again. You feel much better when you are not taking Myeloma drugs. My Doctor would think the fact that you held Remission so long after an Allo from a Female Donor means it is very unlikely that you relapse. You have a great Sister. Stem cell Donors are real heroes. Best of luck.
Mark
Great story. I am just a little over 11 months from my Allo and I feel great. I am jogging and starting to lift weights again. You feel much better when you are not taking Myeloma drugs. My Doctor would think the fact that you held Remission so long after an Allo from a Female Donor means it is very unlikely that you relapse. You have a great Sister. Stem cell Donors are real heroes. Best of luck.
Mark
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Mark
Re: Tandem Autologous Transplant vs. Auto/Mini-Allo Combinat
Dear Mark,
Every single time you post I learn something new! Can you tell me why your doctor would say that about a female donor in an allo transplant? Are there statistics to support a lasting remission like that? My doctor says she cannot give me a prognosis for how long this remission is likely to last. She says that I'm a "trailblazer" (tandem auto/mini allo with a half-match). Statistics aren't always comforting, but I prefer not to be totally surprised the way I was at the time of diagnosis! Thanks again, Dana
P.S. PC, you are certainly blessed! So, so happy for you!!
Every single time you post I learn something new! Can you tell me why your doctor would say that about a female donor in an allo transplant? Are there statistics to support a lasting remission like that? My doctor says she cannot give me a prognosis for how long this remission is likely to last. She says that I'm a "trailblazer" (tandem auto/mini allo with a half-match). Statistics aren't always comforting, but I prefer not to be totally surprised the way I was at the time of diagnosis! Thanks again, Dana
P.S. PC, you are certainly blessed! So, so happy for you!!
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Tandem Autologous Transplant vs. Auto/Mini-Allo Combinat
Dana,
I am responding to a couple of your different posts here. I am so thrilled that the donor immune system put you in remission. It really is amazing - you had mentioned that you had done Chemo for so long and the drugs/steroids could not get you into remission but the donor immune system did. Your Brother is a tremendous person to go into the Be The Match Registry. It is great that he did it for you and that he would be willing to do it for a total stranger. I used a Matched Unrelated Donor - I cannot believe there are such generous, selfless people in the world. I know I am blessed with how smooth things have gone for me.
My Doctor went over matched pairs of Donors a lot with me because I do have a Brother. He was not a match. There was a fully matched Female Donor in the Registry and she was my Donor. Female to Male is associated with higher incidence of GVHD and a lower risk of relapse in Myeloma and all blood cancers. Here is a study from the European Bone Marrow Transplant Registry from 2005 that was looking for “big picture” statistics about matched Donors for Myeloma patients. Here is a part of the conclusion:
“This study clearly demonstrates that transplantation of a male patient with a graft from a female donor involves a graft vs myeloma effect. This donor gender-specific effect has not been seen in previous studies of myeloma transplants, probably because of lack of detectable advantageous effect on OS, masked by increased transplant-related mortality, and inadequate follow-up.”
“Recent studies in chronic myelocytic leukemia and acute leukemia have shown a similar gender-dependent effect, that is, lower REL and higher transplant-related mortality in female to male as compared to male to male transplants and this was assumed to be due to the presence of female donor T cells that are specific for recipient minor histocompatibility antigens (H-Y) encoded by Y chromosome genes.24, 33 H-Y antigens have been shown to be present in a variety of male cells and anti H-Y peptide-specific cytotoxic T cells as well as H-Y-directed antibodies have been identified in male patients who received marrow from female donors.”
http://www.nature.com/bmt/journal/v35/n6/full/1704861a.html
You do not have the same antigens that are contributing to the GVM effect as Female to Male does, but you have clear evidence that the Donor Immune System is identifying the Myeloma cells as foreign and killing them due to the fact that you have gone into Remission without the aid of any drugs and that is the most important thing. The fact that your brother is not a perfect match means the same concept applies to you. Just like the Female to Male applies to Myeloma and all blood cancer patients, so the does the fact that patients that hold Remission for 5 years have a very low chance of relapse. Here are 2 different Myeloma studies that show the same thing. This is a Canadian study from 2007 comparing Allo to Auto:
“The overall survival (OS) of the alloSCT cohort was 48.1% at 5 years and 39.9% at 10 years compared to 46.2% at 5 years and 30.8% at 10 years for the ASCT cohort (P = .94). The event-free survival of the alloSCT cohort was 33.3% at 5 years and 31.4% at 10 years compared to 32.9% and 15.2%for the ASCT cohort (P = .64).”
http://www.myelomacanada.ca/docs/long-term%20outcome%20of%20myeloablative%20082407.pdf
Notice the relapses are very low for the Allo patients after year 5, while unfortunately, they continue for the Auto patients. Here is a Swiss Study from 2011 ASH comparing Allo as upfront therapy to Allo in relapsed patients. If you look at the PFS curves on the bottom, they are flat at 5 years – the relapses are infrequent at 5 years but in this study those that did it upfront had a 50% chance of not relapsing.
https://ash.confex.com/ash/2011/webprogram/Paper37067.html
I would think if you asked your Doctor a question like “If I hold this remission for 5 years, what would my chance of relapse be?”, she would answer that it was low. I got 3 opinions and while the Doctor I choose was the only one that recommended an upfront Allo, I did ask the other two that same question and both agreed that the chance of patient relapsing off an Allo that held Remission for 5 years was very low. My Doctor thought my chance of relapsing in the first 5 years was higher if my Brother was my Donor as opposed to the Unrelated Donor I used.
I just did a quick search on Pubmed about Haploidental transplants. You are indeed a “trailblazer” with respect to Haploidentical transplants for Myeloma. You have truly done “cutting edge” therapy. I checked Pubmed and I only saw reference to 4 patients that did it for Myeloma. There was a study that was just published about haploidentical related donor transplantation (HRD HSCT) for intermediate- or high- risk acute myeloid leukemia in first complete remission. The study compared HRD HSCT as Consolidation to Chemotherapy. I have become friends with a couple of AML patients and relapses are faster and tougher to treat than Myeloma. Check out how great the results for HRD HSCT were for AML.
“HRD HSCT resulted in superior survival compared to chemotherapy alone (4-year DFS, 73.1% ± 7.1% vs. 44.2% ± 6.2%; P < 0.0001; 4-year OS, 77.5% ± 7.1% vs. 54.7% ± 6.3%; P = 0.001).”
http://www.ncbi.nlm.nih.gov/pubmed/22535659
73.1% of a group of intermediate and high risk AML patients not relapsing in 4 years is tremendous and much better than anything we have for high risk Myeloma. Hopefully the same percentage of Myeloma patients will hold Remission like that. I pray you will not relapse and all the GVHD clears up. While I do not have a problem with GVHD at this time, I look at it like all Myeloma therapy causes side effects, but GVHD gives you the best chance of long term remission so it is worth it. You have been through a lot of Chemo/therapy and you really deserve a long remission.
Mark
I am responding to a couple of your different posts here. I am so thrilled that the donor immune system put you in remission. It really is amazing - you had mentioned that you had done Chemo for so long and the drugs/steroids could not get you into remission but the donor immune system did. Your Brother is a tremendous person to go into the Be The Match Registry. It is great that he did it for you and that he would be willing to do it for a total stranger. I used a Matched Unrelated Donor - I cannot believe there are such generous, selfless people in the world. I know I am blessed with how smooth things have gone for me.
My Doctor went over matched pairs of Donors a lot with me because I do have a Brother. He was not a match. There was a fully matched Female Donor in the Registry and she was my Donor. Female to Male is associated with higher incidence of GVHD and a lower risk of relapse in Myeloma and all blood cancers. Here is a study from the European Bone Marrow Transplant Registry from 2005 that was looking for “big picture” statistics about matched Donors for Myeloma patients. Here is a part of the conclusion:
“This study clearly demonstrates that transplantation of a male patient with a graft from a female donor involves a graft vs myeloma effect. This donor gender-specific effect has not been seen in previous studies of myeloma transplants, probably because of lack of detectable advantageous effect on OS, masked by increased transplant-related mortality, and inadequate follow-up.”
“Recent studies in chronic myelocytic leukemia and acute leukemia have shown a similar gender-dependent effect, that is, lower REL and higher transplant-related mortality in female to male as compared to male to male transplants and this was assumed to be due to the presence of female donor T cells that are specific for recipient minor histocompatibility antigens (H-Y) encoded by Y chromosome genes.24, 33 H-Y antigens have been shown to be present in a variety of male cells and anti H-Y peptide-specific cytotoxic T cells as well as H-Y-directed antibodies have been identified in male patients who received marrow from female donors.”
http://www.nature.com/bmt/journal/v35/n6/full/1704861a.html
You do not have the same antigens that are contributing to the GVM effect as Female to Male does, but you have clear evidence that the Donor Immune System is identifying the Myeloma cells as foreign and killing them due to the fact that you have gone into Remission without the aid of any drugs and that is the most important thing. The fact that your brother is not a perfect match means the same concept applies to you. Just like the Female to Male applies to Myeloma and all blood cancer patients, so the does the fact that patients that hold Remission for 5 years have a very low chance of relapse. Here are 2 different Myeloma studies that show the same thing. This is a Canadian study from 2007 comparing Allo to Auto:
“The overall survival (OS) of the alloSCT cohort was 48.1% at 5 years and 39.9% at 10 years compared to 46.2% at 5 years and 30.8% at 10 years for the ASCT cohort (P = .94). The event-free survival of the alloSCT cohort was 33.3% at 5 years and 31.4% at 10 years compared to 32.9% and 15.2%for the ASCT cohort (P = .64).”
http://www.myelomacanada.ca/docs/long-term%20outcome%20of%20myeloablative%20082407.pdf
Notice the relapses are very low for the Allo patients after year 5, while unfortunately, they continue for the Auto patients. Here is a Swiss Study from 2011 ASH comparing Allo as upfront therapy to Allo in relapsed patients. If you look at the PFS curves on the bottom, they are flat at 5 years – the relapses are infrequent at 5 years but in this study those that did it upfront had a 50% chance of not relapsing.
https://ash.confex.com/ash/2011/webprogram/Paper37067.html
I would think if you asked your Doctor a question like “If I hold this remission for 5 years, what would my chance of relapse be?”, she would answer that it was low. I got 3 opinions and while the Doctor I choose was the only one that recommended an upfront Allo, I did ask the other two that same question and both agreed that the chance of patient relapsing off an Allo that held Remission for 5 years was very low. My Doctor thought my chance of relapsing in the first 5 years was higher if my Brother was my Donor as opposed to the Unrelated Donor I used.
I just did a quick search on Pubmed about Haploidental transplants. You are indeed a “trailblazer” with respect to Haploidentical transplants for Myeloma. You have truly done “cutting edge” therapy. I checked Pubmed and I only saw reference to 4 patients that did it for Myeloma. There was a study that was just published about haploidentical related donor transplantation (HRD HSCT) for intermediate- or high- risk acute myeloid leukemia in first complete remission. The study compared HRD HSCT as Consolidation to Chemotherapy. I have become friends with a couple of AML patients and relapses are faster and tougher to treat than Myeloma. Check out how great the results for HRD HSCT were for AML.
“HRD HSCT resulted in superior survival compared to chemotherapy alone (4-year DFS, 73.1% ± 7.1% vs. 44.2% ± 6.2%; P < 0.0001; 4-year OS, 77.5% ± 7.1% vs. 54.7% ± 6.3%; P = 0.001).”
http://www.ncbi.nlm.nih.gov/pubmed/22535659
73.1% of a group of intermediate and high risk AML patients not relapsing in 4 years is tremendous and much better than anything we have for high risk Myeloma. Hopefully the same percentage of Myeloma patients will hold Remission like that. I pray you will not relapse and all the GVHD clears up. While I do not have a problem with GVHD at this time, I look at it like all Myeloma therapy causes side effects, but GVHD gives you the best chance of long term remission so it is worth it. You have been through a lot of Chemo/therapy and you really deserve a long remission.
Mark
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Mark
Re: Tandem Autologous Transplant vs. Auto/Mini-Allo Combinat
Dear Mark,
Wow, have you ever done your research. Not only that, but you know how to present it to "lay people" like me, who really struggle with processing some of the data. I'm so grateful that you would take the time to organize it and post it for me. And I'm amazed at how well-informed you were before you made your treatment decisions. When I began treatment, I felt so horrible that I didn't really care what happened to me as long as they could make the pain go away! It was only after I began to recover that I could actually face all the options.
I do have a few more questions for you.... While I'm hesitant to post them on this forum because I've been such a "forum hog" this week, your answers and the studies that you reference are so helpful, that maybe someone else would benefit from reading them, too.
How long after you were diagnosed did you go to transplant? I think you mentioned that you had a CR before, so what other drugs did you take? I think I told you that I could not get better than a PR (my m-spike started at 7.5) after several months of RVD, then Cytoxan/RV, and then two VDT-PACE treatments. I did come out of the AUTO with a VGPR (m-spike 0.15) and then following the allo it trended downward the 3rd, 4th, and 5th months out (0.08, 0.06, 0.03) until this past April (6 1/2 months out) the blood work showed "no evidence". So, I'm not sure where that would put me on the scale for an Allo as upfront therapy vs. Allo in relapsed patients. I relapsed continuously while trying to get within range for a transplant.
I know of a couple of other patients who had a tandem auto/full-matched unrelated donor allo who went on Revlimid afterward as maintenance therapy. Did your doctor give you any guidelines for this? My doctor is adamant that I should not be on anything that will suppress the immune system. Perhaps those patients did not reach a CR? Do you know whether this happens often, or what the statistics are for reaching a CR after an allo? Honestly, I had assumed that everyone who went through an allo would reach CR. I'm glad I didn't know otherwise before I made the tough decision to have one!
A couple of months ago, you shared information with me about DLIs. Are you currently receiving these? I was pushing my doctor for those after I read your research, but she wanted to wait and see what the Donor Immune System could do before introducing anything more that could increase the GVHD. She was actually very pleased when I showed signs of GVH and doesn't seem concerned about it. I'm still having my blood tested every two weeks, as initially my liver numbers were high, but last month those numbers also returned to the normal range. Did your hospital freeze lymphocytes from your donor for future use?
As far as the GHVD goes, I agree with you that so far it has been no worse than other side effects. I do wish tears wouldn't run down my face when I bend over and that I could wear eye makeup once in awhile, but even that is worth the exercise I can do, the amazing energy I have (more than I have had in several years, since I was probably anemic a long time before I was diagnosed), and the freedom from weekly infusions. Honestly, now that I have been off treatment for several months, I can empathize with cancer patients who make the difficult decision to stop chemotherapy for a few months of QOL. And our drugs are usually much easier to handle than those for other cancers.
You are such an encouragement, Mark. I can't thank you enough for sharing your wisdom. I have to chuckle, though, when you tell me that I "deserve" this remission, as I certainly don't feel deserving at all, and especially not more than any one else who suffers with this. It's all grace. Just like finding all these kind, warmhearted patients on this site is such a gift! Blessings and peace, Dana
Wow, have you ever done your research. Not only that, but you know how to present it to "lay people" like me, who really struggle with processing some of the data. I'm so grateful that you would take the time to organize it and post it for me. And I'm amazed at how well-informed you were before you made your treatment decisions. When I began treatment, I felt so horrible that I didn't really care what happened to me as long as they could make the pain go away! It was only after I began to recover that I could actually face all the options.
I do have a few more questions for you.... While I'm hesitant to post them on this forum because I've been such a "forum hog" this week, your answers and the studies that you reference are so helpful, that maybe someone else would benefit from reading them, too.
How long after you were diagnosed did you go to transplant? I think you mentioned that you had a CR before, so what other drugs did you take? I think I told you that I could not get better than a PR (my m-spike started at 7.5) after several months of RVD, then Cytoxan/RV, and then two VDT-PACE treatments. I did come out of the AUTO with a VGPR (m-spike 0.15) and then following the allo it trended downward the 3rd, 4th, and 5th months out (0.08, 0.06, 0.03) until this past April (6 1/2 months out) the blood work showed "no evidence". So, I'm not sure where that would put me on the scale for an Allo as upfront therapy vs. Allo in relapsed patients. I relapsed continuously while trying to get within range for a transplant.
I know of a couple of other patients who had a tandem auto/full-matched unrelated donor allo who went on Revlimid afterward as maintenance therapy. Did your doctor give you any guidelines for this? My doctor is adamant that I should not be on anything that will suppress the immune system. Perhaps those patients did not reach a CR? Do you know whether this happens often, or what the statistics are for reaching a CR after an allo? Honestly, I had assumed that everyone who went through an allo would reach CR. I'm glad I didn't know otherwise before I made the tough decision to have one!
A couple of months ago, you shared information with me about DLIs. Are you currently receiving these? I was pushing my doctor for those after I read your research, but she wanted to wait and see what the Donor Immune System could do before introducing anything more that could increase the GVHD. She was actually very pleased when I showed signs of GVH and doesn't seem concerned about it. I'm still having my blood tested every two weeks, as initially my liver numbers were high, but last month those numbers also returned to the normal range. Did your hospital freeze lymphocytes from your donor for future use?
As far as the GHVD goes, I agree with you that so far it has been no worse than other side effects. I do wish tears wouldn't run down my face when I bend over and that I could wear eye makeup once in awhile, but even that is worth the exercise I can do, the amazing energy I have (more than I have had in several years, since I was probably anemic a long time before I was diagnosed), and the freedom from weekly infusions. Honestly, now that I have been off treatment for several months, I can empathize with cancer patients who make the difficult decision to stop chemotherapy for a few months of QOL. And our drugs are usually much easier to handle than those for other cancers.
You are such an encouragement, Mark. I can't thank you enough for sharing your wisdom. I have to chuckle, though, when you tell me that I "deserve" this remission, as I certainly don't feel deserving at all, and especially not more than any one else who suffers with this. It's all grace. Just like finding all these kind, warmhearted patients on this site is such a gift! Blessings and peace, Dana
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Tandem Autologous Transplant vs. Auto/Mini-Allo Combinat
Dana,
Just so you know I am a "lay person" like you - my educational background is in Economics. I did not know what an Allo transplant was before I got diagnosed. I was in a lot of pain (3 compression fractures in my back at diagnosis) so I know what you mean when you say all you cared about was getting rid of the pain. As soon as I was diagnosed I was admitted to the closest IMF listed Hospital because I had 90% marrow involvement, could not move because of the compression fractures, pnemonia, etc - I was a mess!
The Doctor that is treating me works at that Hospital and she treats younger patients like me in a very different manner than how most patients will be treated here in the US. My presentation of Myeloma is that it is aggressive but it typically goes into remission the first time a little faster than most patients. Of the 3 Doctors I spoke with the estimates for remission ranged between 12-20 months if I used drugs and Autos (which is just drug therapy - they are not a real transplant though it is correct medically to call them a transplant). The strategy for me was to get CR and then do an Allo but to not use Revlimid upfront because it works better after an Allo transplant. I ended up doing 4 cycles of double dosed Velcade/Doxil/Dex. That is done in 3 week cycles - 2 weeks on and 1 week off. The Velcade and Doxil were used in doses that are 2X what previous studies used, so I basically did 8 cycles in 12 weeks. I was responding very well and she wanted to just get me a CR and do Induction to Allo - no Auto. Unfortunately my Insurance Co would only pay for tandem Auto-Allo, they viewed Induction to Allo as experimental. I did an Auto 4 weeks after completing my Induction and I did the Allo 4 months later. All my therapy came in an 8 month time period - fast and furious and definitely not a great way to spend 75% of your year!
I am not currently doing any therapy. That is for various reasons. I had a Molecular response (MR) after my Allo. Because my donor was female we have a good chance of my remission being a long one. If you look at Figure 2 in this link, I am at Observation after Allografting. That Figure shows what my treatment plan turned out to be. The paper describes the treatment philosophy. MRD stands for minimal residual disease in these graphs.
http://www.nature.com/leu/journal/v21/n9/full/2404775a.html
My Doctor certainly does not use a graph like this one, but basically these are the type of statistics that I hear from her about my chance of relapse. The idea is to monitor for MR because a sustained MR after an Allo has a low chance of relapse. I am getting all my tests (BMB, PET, MRI, etc) done again this month. If the MR holds this test, I will continue to do no therapy. If there is any sign of disease I will start treatment strength therapy next month.
https://ash.confex.com/ash/2011/webprogram/Paper42900.html
I had an unrelated donor so they did freeze what was left over. It is preferable to have fresh cells but my Donor has done more for me then I could have ever expected a stranger could do. I do not know if you are aware of how this works, but the only knowledge you are given about an unrelated Donor is what their sex is. After a year you can send them a letter. From what I am told quite a few of them never respond back. They are truly exceptional people – they are not looking for anything, they just want to help another person.
The only thing I thought of is that maybe you could ask your Doctor about potentially using Velcade. If you Google “Bortezomib GVHD” you will see a lot of links about Velcade being used in Allo transplant patients for all blood cancers because it can reduce GVHD. They do use Velcade with DLI’s at times hoping to get the effect of killing on the Myeloma with the DLI and Velcade while reducing the GVHD with the Velcade. Revlimid can cause/aggravate existing GVHD. DEX is not a great thing to be using because it really knocks your immune system down. Unlike non-Allo patients our donor immune systems help us out in the fight against the Myeloma. With all the therapy you have done you deserve a break from all of this. I am hoping not to treat because my Doctor absolutely “nailed it” as far as I am concerned – Molecuar Response and my quality of life is great.
These are just 2 suggestions to potentially help out. I take a lot of Vitamin D because of the bone damage I have from the Myeloma. Here are a couple of links about Vitamin D being used for Chronic GVHD. They never mention the amounts of Vitamin D used. I am sure they are very high doses.
http://www.nature.com/bmt/journal/v45/n9/full/bmt2009366a.html
http://www.ncbi.nlm.nih.gov/pubmed/22548720
My Doctor offers Allo patients Culturelle probiotic for 1 year after Allo. The ones that use it seem to get less infections and have less gut GVHD according to her. I am going to start buying it after my current supply runs out since I have had no gut GVHD and have only had 1 “cold” since my Allo.
I hope that helps and I am glad to try and help you out with information. Not many Myeloma patients do Allos so the info from patients can be tough to come by. The Leukemia and Lymphoma Society message boards have a lot of patients discussing GVHD issues post Allo. There may be some good tips in there so you may want to search that message board as well.
http://community.lls.org/community/bloodcancer/transplantation
Mark
Just so you know I am a "lay person" like you - my educational background is in Economics. I did not know what an Allo transplant was before I got diagnosed. I was in a lot of pain (3 compression fractures in my back at diagnosis) so I know what you mean when you say all you cared about was getting rid of the pain. As soon as I was diagnosed I was admitted to the closest IMF listed Hospital because I had 90% marrow involvement, could not move because of the compression fractures, pnemonia, etc - I was a mess!
The Doctor that is treating me works at that Hospital and she treats younger patients like me in a very different manner than how most patients will be treated here in the US. My presentation of Myeloma is that it is aggressive but it typically goes into remission the first time a little faster than most patients. Of the 3 Doctors I spoke with the estimates for remission ranged between 12-20 months if I used drugs and Autos (which is just drug therapy - they are not a real transplant though it is correct medically to call them a transplant). The strategy for me was to get CR and then do an Allo but to not use Revlimid upfront because it works better after an Allo transplant. I ended up doing 4 cycles of double dosed Velcade/Doxil/Dex. That is done in 3 week cycles - 2 weeks on and 1 week off. The Velcade and Doxil were used in doses that are 2X what previous studies used, so I basically did 8 cycles in 12 weeks. I was responding very well and she wanted to just get me a CR and do Induction to Allo - no Auto. Unfortunately my Insurance Co would only pay for tandem Auto-Allo, they viewed Induction to Allo as experimental. I did an Auto 4 weeks after completing my Induction and I did the Allo 4 months later. All my therapy came in an 8 month time period - fast and furious and definitely not a great way to spend 75% of your year!
I am not currently doing any therapy. That is for various reasons. I had a Molecular response (MR) after my Allo. Because my donor was female we have a good chance of my remission being a long one. If you look at Figure 2 in this link, I am at Observation after Allografting. That Figure shows what my treatment plan turned out to be. The paper describes the treatment philosophy. MRD stands for minimal residual disease in these graphs.
http://www.nature.com/leu/journal/v21/n9/full/2404775a.html
My Doctor certainly does not use a graph like this one, but basically these are the type of statistics that I hear from her about my chance of relapse. The idea is to monitor for MR because a sustained MR after an Allo has a low chance of relapse. I am getting all my tests (BMB, PET, MRI, etc) done again this month. If the MR holds this test, I will continue to do no therapy. If there is any sign of disease I will start treatment strength therapy next month.
https://ash.confex.com/ash/2011/webprogram/Paper42900.html
I had an unrelated donor so they did freeze what was left over. It is preferable to have fresh cells but my Donor has done more for me then I could have ever expected a stranger could do. I do not know if you are aware of how this works, but the only knowledge you are given about an unrelated Donor is what their sex is. After a year you can send them a letter. From what I am told quite a few of them never respond back. They are truly exceptional people – they are not looking for anything, they just want to help another person.
The only thing I thought of is that maybe you could ask your Doctor about potentially using Velcade. If you Google “Bortezomib GVHD” you will see a lot of links about Velcade being used in Allo transplant patients for all blood cancers because it can reduce GVHD. They do use Velcade with DLI’s at times hoping to get the effect of killing on the Myeloma with the DLI and Velcade while reducing the GVHD with the Velcade. Revlimid can cause/aggravate existing GVHD. DEX is not a great thing to be using because it really knocks your immune system down. Unlike non-Allo patients our donor immune systems help us out in the fight against the Myeloma. With all the therapy you have done you deserve a break from all of this. I am hoping not to treat because my Doctor absolutely “nailed it” as far as I am concerned – Molecuar Response and my quality of life is great.
These are just 2 suggestions to potentially help out. I take a lot of Vitamin D because of the bone damage I have from the Myeloma. Here are a couple of links about Vitamin D being used for Chronic GVHD. They never mention the amounts of Vitamin D used. I am sure they are very high doses.
http://www.nature.com/bmt/journal/v45/n9/full/bmt2009366a.html
http://www.ncbi.nlm.nih.gov/pubmed/22548720
My Doctor offers Allo patients Culturelle probiotic for 1 year after Allo. The ones that use it seem to get less infections and have less gut GVHD according to her. I am going to start buying it after my current supply runs out since I have had no gut GVHD and have only had 1 “cold” since my Allo.
I hope that helps and I am glad to try and help you out with information. Not many Myeloma patients do Allos so the info from patients can be tough to come by. The Leukemia and Lymphoma Society message boards have a lot of patients discussing GVHD issues post Allo. There may be some good tips in there so you may want to search that message board as well.
http://community.lls.org/community/bloodcancer/transplantation
Mark
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Mark
Re: Tandem Autologous Transplant vs. Auto/Mini-Allo Combinat
Thanks again, Mark, for all your help. I appreciate it so much and am sure that others do as well! I hope you keep us apprised of your progress. Sounds like you have a very positive prognosis and that you are in excellent hands. I wish you all the best! Dana
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
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