Dear Brian,
I agree that 75% mortality would be hard to swallow... Is this what your oncologist thinks of your personal chances? I would definitely seek another opinion. I was never given such poor statistics. My doctor told me there was about a 15% chance of mortality from the lower-dose mini-haplo (perhaps this is just from Johns Hopkins), and that she didn't think it applied to me. The first time I met with her after the transplant, I said, "Well, looks like I made it!" and she laughed and replied, "If I had thought otherwise, I would not have suggested it!" I did not have kidney disease, but my liver numbers were of concern the entire time.
I haven't yet read the study that Mark sent but from some of his comments, it sounds similar to my allo: low-dose chemo designed to suppress my immune system, not to wipe everything out. I was very relieved not to have melphalan again. I agree with what Mark said about the timing; my doctor didn't recommend that I wait until relapsing after the auto sct, as then I would have had to repeat the use of the stronger, more difficult-to-take chemotherapy, rather than the immunosuppressive drugs. There was also one session of low dose radiation, by the way; I was told it was the lowest amount possible, intended not to kill cancer cells but to suppress my immune system so that the donor system could graft more effectively.
When we met two days ago, I asked her about giving me DLIs preemptively, and I handed her the study that was just published in the Beacon. She accepted it gratefully and promised to investigate, but from her experience, DLIs often cause very debilitating gvhd. She doesn't favor using them unless she has to (i.e., for relapsed patients), but she said she'd look into it.
You are doing the right thing by questioning and researching! One of my dear friends, who was diagnosed just a few months before I was, was treated by the local doctor with whom I started my treatments. The difference was that I only allowed him to give me what my specialist at Johns Hopkins approved. When they came into my room to give me radiation (at the time of my diagnosis), I immediately phoned her, and she said, "Absolutely not! I want to work with that bone marrow!" I was verbally abused for refusing the treatment, but fortunately stood my ground. My friend didn't have the benefit of that advice. After her asct at Johns Hopkins (where she also later transferred) the stem cells refused to graft, and she never recovered. Many specialists believed it was from the radiation she had (and this was not the first time our local hospital has been accused of botched/misused radiation treatments).
Because of this, and many other, experiences, I am adamant that patients should only go to a specialist. You are doing the right thing by seeking advice! Also remember that you are not a statistic. Statistics can be helpful, but they almost never apply to an individual. I read a wonderful quote by Michael J. Fox that said not to even try to predict the future, because (1) there is a 99% chance it won't happen exactly that way, and (2) in the event that it does, you'll have to live through it twice! There is so much hope for myeloma patients, and so much to try. Keep braving that big hill!! And I am so happy to help in any way I can. There is a lot of wisdom in this forum--you are on the right track! Blessings, Dana
Forums
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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: Needing information.
Dana,
I was going to write to you directly but it sounded like you were leaving for vacation. I was going to ask if they were planning on doing DLI's. Here is some research you may have interest in. Combining DLI with low dose Thalidomid has shown lower chance of GVHD. Also, using the DLI's to "treat up" to a higher level response shows long remissions.
http://bloodjournal.hematologylibrary.org/content/104/10/3361.abstract?ijkey=ee4badc213d4466f83a192bdea7ef5e4c64a650c&keytype2=tf_ipsecsha
http://www.exphem.org/article/S0301-472X(09)00116-7/abstract
Also, there is a clinical trial in Germany going on that is using DLI's right after transplant. Maybe there would be a way your Doctor could find out if they are having problems with GVHD so far in the study. It started in late 2008 so they must have a decent amount of data.
http://clinicaltrials.gov/ct2/show/NCT00777998?term=myeloma+allogeneic+germany&rank=5
As you can see I do a lot of reading on this!
Our paths after transplant are almost exactly the same. I had a mild acute GVHD skin rash for 2 weeks about one month earlier than you did. I also had inflammed gums for about 2 weeks about 6 months after transplant. I hope yours clear up as quick as mine did. One more mild skin rash about 7 months out (2 weeks and gone) and now I have no problems.
Have a great vacation!
Mark
I was going to write to you directly but it sounded like you were leaving for vacation. I was going to ask if they were planning on doing DLI's. Here is some research you may have interest in. Combining DLI with low dose Thalidomid has shown lower chance of GVHD. Also, using the DLI's to "treat up" to a higher level response shows long remissions.
http://bloodjournal.hematologylibrary.org/content/104/10/3361.abstract?ijkey=ee4badc213d4466f83a192bdea7ef5e4c64a650c&keytype2=tf_ipsecsha
http://www.exphem.org/article/S0301-472X(09)00116-7/abstract
Also, there is a clinical trial in Germany going on that is using DLI's right after transplant. Maybe there would be a way your Doctor could find out if they are having problems with GVHD so far in the study. It started in late 2008 so they must have a decent amount of data.
http://clinicaltrials.gov/ct2/show/NCT00777998?term=myeloma+allogeneic+germany&rank=5
As you can see I do a lot of reading on this!
Our paths after transplant are almost exactly the same. I had a mild acute GVHD skin rash for 2 weeks about one month earlier than you did. I also had inflammed gums for about 2 weeks about 6 months after transplant. I hope yours clear up as quick as mine did. One more mild skin rash about 7 months out (2 weeks and gone) and now I have no problems.
Have a great vacation!
Mark
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Mark
Re: Needing information.
Dana
I just contacted my doctor who corrected me to say mortality rate is 25%. In the meeting last Wednesday I picked it up wrong, I think the stress of the situation etc. I mixed things up, this sounds a lot better odds and changes everything. I am very relieved to be the better side of 50%!
I am very encouraged by what I'm reading here and am creating a long list of questions for my doctors.
Thanks
I just contacted my doctor who corrected me to say mortality rate is 25%. In the meeting last Wednesday I picked it up wrong, I think the stress of the situation etc. I mixed things up, this sounds a lot better odds and changes everything. I am very relieved to be the better side of 50%!
I am very encouraged by what I'm reading here and am creating a long list of questions for my doctors.
Thanks
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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.
Dear Brian,
I am so happy! What a relief that must be for you! Armed with better odds and all of the great links that Mark has sent should give you a much better long-term vision. Please be sure to let us know what you decide and how it turns out for you. I'll be praying for you!
And Mark, I can't thank you enough for the information! We are leaving shortly, but I took the time to print everything out and plan to read it on the trip. The day after we return, I have an appointment with my oncologist to check the gvhd, and I'll put all this before her. To see the words "five-year progression free survival" is more than I could have dreamed of. I would love to hear about your experience some time; just hearing that you had another rash at about 7 months helps me; I won't be as alarmed if I see that now. It is really encouraging to know that others have walked this path, or, to use Brian's analogy, have climbed the hill and made it to safely to the top, in spite of being run over along the way. Thank you for being such a diligent researcher and for sharing the information with the rest of us. Blessings, Dana
I am so happy! What a relief that must be for you! Armed with better odds and all of the great links that Mark has sent should give you a much better long-term vision. Please be sure to let us know what you decide and how it turns out for you. I'll be praying for you!
And Mark, I can't thank you enough for the information! We are leaving shortly, but I took the time to print everything out and plan to read it on the trip. The day after we return, I have an appointment with my oncologist to check the gvhd, and I'll put all this before her. To see the words "five-year progression free survival" is more than I could have dreamed of. I would love to hear about your experience some time; just hearing that you had another rash at about 7 months helps me; I won't be as alarmed if I see that now. It is really encouraging to know that others have walked this path, or, to use Brian's analogy, have climbed the hill and made it to safely to the top, in spite of being run over along the way. Thank you for being such a diligent researcher and for sharing the information with the rest of us. Blessings, 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: Needing information.
Mark
When you said "It would be great if you could avoid that Auto." With the Sloan Kettering TCD HSCT would I not get my own cells back in a auto first? As I understand at the moment the Tandem auto/allo my doctor is proposing would mean RVD until they got my kappa light chains down, then harvest my cells. Melphlan at the time of auto and then immunosuppression before the allo but not chemo.
Also, when you said, "If they thought they could do it in the way Sloan Kettering was doing it, you would not need to harvest new cells," can you explain this? From what I understood when I read your link, I thought it sounded like they did an auto-allo transplant (and therefore would need to use my cells)...do you understand it differently?
Thanks again for all of your help and research - it is really helping me to get my head around all of this!
Brian
When you said "It would be great if you could avoid that Auto." With the Sloan Kettering TCD HSCT would I not get my own cells back in a auto first? As I understand at the moment the Tandem auto/allo my doctor is proposing would mean RVD until they got my kappa light chains down, then harvest my cells. Melphlan at the time of auto and then immunosuppression before the allo but not chemo.
Also, when you said, "If they thought they could do it in the way Sloan Kettering was doing it, you would not need to harvest new cells," can you explain this? From what I understood when I read your link, I thought it sounded like they did an auto-allo transplant (and therefore would need to use my cells)...do you understand it differently?
Thanks again for all of your help and research - it is really helping me to get my head around all of this!
Brian
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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,
I know things with Allos can get confusing. Being able to not do the Auto is dependent on you being able to get your disease under control with standard Chemo/Novel Agents. Note this sentence from the Sloan study:
"All pts achieved at least a partial response from preceding chemotherapy or second auto HSCT."
You should never do an Allo transplant with progressing disease. If your disease is stable you could consider doing the TCell depleted Allo first. In this study they are giving a total of 140 MEL (Melphalan) given over 2 days plus Busulfan and Fludarabine. The total amount of this conditioning seems very similar to an Auto though I have never used Busulfan. A standard Auto is 200 MEL. Fludarabine is a drug commonly used for Allo transplants to knock the immune system. I used more of it at my Allo than this study uses.
The reason for using a Tandem Auto - Allo is you want to break up the high dose Chemo and the Immunotherapy from the Allo. The Standard Auto-Allo method:
1. High Dose Chemo to kill Myeloma cells
2. Give patient back his/her own stem cells for recovery. These stem cells are contaminated with disease.
3. After 2-3 months, patient gets another, lower level of Chemo/Immunosuppressive Conditioning
4. Patient recieves Donor Stems Cells
It is at this point the patient can get the Immunotherapy and the GVHD from the Donor Cells
Sloan Kettering Study method (if your disease is stable from say Velcade/Revlimid/Dex)
1. High Dose Chemo to kill Myeloma cells and Conditioning to allow for Donor Stem Cells.
2. Give patient Donor TCell depleted Cells. That means you recieving a graft that is not contaminated with Myeloma. The chance is very low (only 1 of 13 in this study) for GVHD. The downside to the TCell depletion is that you did not get any Immunotherapy.
3. A minimum of 5 months later, the patient recieves low dose DLI's. DLI's are Donor Stem Cells. These cells are not TCell depleted. They give the Immunotherapy and can cause GVHD. No conditioning or Chemo is required to give DLI's.
The way I am reading your situation is that they think they can have your disease under control with V/R/D. You then have to harvest more cells because they think the ones you have left over are contaminated. I think the Sloan Kettering method may make sense in your case because all the high dose chemo at the traditional Auto is immunosuppressive. The Sloan method puts all the Immunosuppression and Conditioning at once and gives back Donor TCell depleted cells that are not contaminated with Myeloma. It may be more friendly to your kidneys to not have to use the immunosuppressive regimine at the Allo used in the traditional Tandem Auto-Allo method.
There are a lot of "Big If's" and certainly this method is experimental. Only an experienced Allo Transplant Doctor would be qualified to determine if this method is one that could be beneficial to you. Hopefully that better explains it.
Mark
I know things with Allos can get confusing. Being able to not do the Auto is dependent on you being able to get your disease under control with standard Chemo/Novel Agents. Note this sentence from the Sloan study:
"All pts achieved at least a partial response from preceding chemotherapy or second auto HSCT."
You should never do an Allo transplant with progressing disease. If your disease is stable you could consider doing the TCell depleted Allo first. In this study they are giving a total of 140 MEL (Melphalan) given over 2 days plus Busulfan and Fludarabine. The total amount of this conditioning seems very similar to an Auto though I have never used Busulfan. A standard Auto is 200 MEL. Fludarabine is a drug commonly used for Allo transplants to knock the immune system. I used more of it at my Allo than this study uses.
The reason for using a Tandem Auto - Allo is you want to break up the high dose Chemo and the Immunotherapy from the Allo. The Standard Auto-Allo method:
1. High Dose Chemo to kill Myeloma cells
2. Give patient back his/her own stem cells for recovery. These stem cells are contaminated with disease.
3. After 2-3 months, patient gets another, lower level of Chemo/Immunosuppressive Conditioning
4. Patient recieves Donor Stems Cells
It is at this point the patient can get the Immunotherapy and the GVHD from the Donor Cells
Sloan Kettering Study method (if your disease is stable from say Velcade/Revlimid/Dex)
1. High Dose Chemo to kill Myeloma cells and Conditioning to allow for Donor Stem Cells.
2. Give patient Donor TCell depleted Cells. That means you recieving a graft that is not contaminated with Myeloma. The chance is very low (only 1 of 13 in this study) for GVHD. The downside to the TCell depletion is that you did not get any Immunotherapy.
3. A minimum of 5 months later, the patient recieves low dose DLI's. DLI's are Donor Stem Cells. These cells are not TCell depleted. They give the Immunotherapy and can cause GVHD. No conditioning or Chemo is required to give DLI's.
The way I am reading your situation is that they think they can have your disease under control with V/R/D. You then have to harvest more cells because they think the ones you have left over are contaminated. I think the Sloan Kettering method may make sense in your case because all the high dose chemo at the traditional Auto is immunosuppressive. The Sloan method puts all the Immunosuppression and Conditioning at once and gives back Donor TCell depleted cells that are not contaminated with Myeloma. It may be more friendly to your kidneys to not have to use the immunosuppressive regimine at the Allo used in the traditional Tandem Auto-Allo method.
There are a lot of "Big If's" and certainly this method is experimental. Only an experienced Allo Transplant Doctor would be qualified to determine if this method is one that could be beneficial to you. Hopefully that better explains it.
Mark
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Mark
Re: Needing information.
Thanks Mark
It is so difficult to get my head around everything. So I came up with a list of questions for my doctor and he, my wife and I spoke on Sunday. These are my notes from the conversation.
Conference call with Dr. McGuirk Sun. Feb 26th at 11:45am. We asked him about the T-cell depletion transplant, he explained the pros and cons and my feeling is he felt that my myeloma was too aggressive for this approach. He thought there would definitely need to be a good post-transplant plan for introducing lymphocytes. He is proposing a conventional allo because he thought that before the lymphocytes could be introduced to raise the GVHD there would be a high probability of the myeloma coming back; so although it’s easier on the system, it’s also easier on myeloma. The fact that I’m deemed to have high-risk myeloma and that my myeloma has come out of remission on low-dose Velcade, low-dose Revlimid and aredia would point to it being more aggressive. We also asked him about a reduced intensity allo vs. a “mini” allo and he explained that a mini allo is typically for the elderly population that wouldn’t be able to tolerate high dose myeloablative chemo. I can’t remember what exactly he said about the reduced intensity transplant. He gave me some stats on GVHD.
With a conventional allo transplant:
As far as GVHD is concerned, here are the stats:
- Acute GVHD (w/in first 100 days post-transplant):
o Matched sibling donor 35-40%
o Matched unrelated donor (MUD) 50%
- Chronic GVHD (post-100 days after transplant):
o Matched sibling donor 50%
o Matched unrelated donor 75%
Dr. McGuirk noted that for both acute and chronic GVHD, about 50-75% of patients respond to steroids and/or meds.
He has been in touch with Bart Barlogie, Paul Richardson and Sergio Giralt so see if they have any alternatives given my history, or would do things at all differently. I should here more about what they think today. This may lead to me visiting them we'll see.
I was happy to have all the questions answered, we'll see whether the other docs have any better ideas. So the plan at the moment is RVD then hopefully a good harvest and the auto/allo tandem. This may change today, but so far, this is what I have.
It is so difficult to get my head around everything. So I came up with a list of questions for my doctor and he, my wife and I spoke on Sunday. These are my notes from the conversation.
Conference call with Dr. McGuirk Sun. Feb 26th at 11:45am. We asked him about the T-cell depletion transplant, he explained the pros and cons and my feeling is he felt that my myeloma was too aggressive for this approach. He thought there would definitely need to be a good post-transplant plan for introducing lymphocytes. He is proposing a conventional allo because he thought that before the lymphocytes could be introduced to raise the GVHD there would be a high probability of the myeloma coming back; so although it’s easier on the system, it’s also easier on myeloma. The fact that I’m deemed to have high-risk myeloma and that my myeloma has come out of remission on low-dose Velcade, low-dose Revlimid and aredia would point to it being more aggressive. We also asked him about a reduced intensity allo vs. a “mini” allo and he explained that a mini allo is typically for the elderly population that wouldn’t be able to tolerate high dose myeloablative chemo. I can’t remember what exactly he said about the reduced intensity transplant. He gave me some stats on GVHD.
With a conventional allo transplant:
As far as GVHD is concerned, here are the stats:
- Acute GVHD (w/in first 100 days post-transplant):
o Matched sibling donor 35-40%
o Matched unrelated donor (MUD) 50%
- Chronic GVHD (post-100 days after transplant):
o Matched sibling donor 50%
o Matched unrelated donor 75%
Dr. McGuirk noted that for both acute and chronic GVHD, about 50-75% of patients respond to steroids and/or meds.
He has been in touch with Bart Barlogie, Paul Richardson and Sergio Giralt so see if they have any alternatives given my history, or would do things at all differently. I should here more about what they think today. This may lead to me visiting them we'll see.
I was happy to have all the questions answered, we'll see whether the other docs have any better ideas. So the plan at the moment is RVD then hopefully a good harvest and the auto/allo tandem. This may change today, but so far, this is what I have.
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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,
Allos are tough to get your head around - my Doctor spent a lot of time explaining the process to me. Dr. Giralt is head of Myeloma at Sloan Kettering and he is a top expert with regard to Myeloma Allo transplantation. If you go the Allo route, Dr. Giralt's input will be most valuable. You have 4 great Doctors looking at your case, so you will end up with an outstanding treatment plan.
Good luck with everything,
Mark
Allos are tough to get your head around - my Doctor spent a lot of time explaining the process to me. Dr. Giralt is head of Myeloma at Sloan Kettering and he is a top expert with regard to Myeloma Allo transplantation. If you go the Allo route, Dr. Giralt's input will be most valuable. You have 4 great Doctors looking at your case, so you will end up with an outstanding treatment plan.
Good luck with everything,
Mark
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Mark
Re: Needing information.
Thanks Mark.
Yes, I believe I'm in good hands.
Yes, I believe I'm in good hands.
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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.
Well I just looked back at these posts and they seem a million months ago. I am sitting in New York day +72 post a T-cell depleted allogeneic transplant, soon to be traveling home to Kansas. My sisters were not a match but I was was able to find a 10/10 MUD. A 41 year old American male who I hope to be able to thank in person in the future.
My transplant took place at Memorial Sloan Kettering and my doctor is Dr Koehne, he works along side Dr Giralt. I was able to get into full remission before transplant and my blood work has shown no Myeloma post transplant.
I left hospital 14 days post transplant and found the T-cell depleted Allo experience much less traumatic than expected.
I've meant to update here for such a long time to conclude my experience so far. So thank you Mark for your heads up on MSK and the 'T-cell depleted', my experience so far has been great!
My transplant took place at Memorial Sloan Kettering and my doctor is Dr Koehne, he works along side Dr Giralt. I was able to get into full remission before transplant and my blood work has shown no Myeloma post transplant.
I left hospital 14 days post transplant and found the T-cell depleted Allo experience much less traumatic than expected.
I've meant to update here for such a long time to conclude my experience so far. So thank you Mark for your heads up on MSK and the 'T-cell depleted', my experience so far has been great!
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BPHD - Name: Brian
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Friday 13th August 2010
- Age at diagnosis: 46
21 posts
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