Hello,
Im a 35 year old with multiple myeloma, was diagnosed in March 2010 and have gone through tandem auto transplants. Ive gotten 3 years from remission, but my light chains are slowly creeping up. My doctor, who is one of the best and is talked about on here, has suggested I seriously think about going through with an allo transplant in the future. My question is, is it the actual transplant which is risky or is it after tye transplant? Im in very good health and want to go with the best option that allows me to live a VERY long life.
Forums
Re: Allo General Questions
Free K+L Lt Chains,Qn,S
Test Low Normal High Reference Range Units
Free Lambda Lt Chains,S 5.87 5.71-26.30 mg/L
Free Kappa Lt Chains,S 39.36 3.30-19.40 mg/L
Kappa/Lambda Ratio,S 6.71 0.26-1.65 1
Comp. Metabolic Panel (14)
Test Low Normal High Reference Range Units
Glucose, Serum 112 65-99 mg/dL
Potassium, Serum 4.5 3.5-5.2 mmol/L
Sodium, Serum 139 134-144 mmol/L
Globulin, Total 2.4 1.5-4.5 g/dL
Bun/Creatinine Ratio 11 8-19 1
Alkaline Phosphatase, S 79 25-150 IU/L
A/G Ratio 1.8 1.1-2.5 1
Egfr If Africn Am 125 >59 mL/min/1.73
Ast (Sgot) 31 0-40 IU/L
Albumin, Serum 4.4 3.5-5.5 g/dL
Creatinine, Serum 0.92 0.76-1.27 mg/dL
Calcium, Serum 9.6 8.7-10.2 mg/dL
Protein, Total, Serum 6.8 6.0-8.5 g/dL
Bilirubin, Total 0.4 0.0-1.2 mg/dL
Alt (Sgpt) 35 0-44 IU/L
Egfr If Nonafricn Am 108 >59 mL/min/1.73
Carbon Dioxide, Total 25 20-32 mmol/L
Bun 10 6-20 mg/dL
Chloride, Serum 99 97-108 mmol/L
Ldh
Test Low Normal High Reference Range Units
Ldh 147 0-225 IU/L
Immunofixation, Serum
Test Low Normal High Reference Range Units
Immunoglobulin G, Qn, Serum 720 700-1600 mg/dL
Immunoglobulin M, Qn, Serum 41 40-230 mg/dL
Immunoglobulin A, Qn, Serum 104 91-414 mg/dL
Immunofixation Result, Serum Comment:
Protein Elec + Interp, Serum
Test Low Normal High Reference Range Units
Albumin 4.4 3.2-5.6 g/dL
Gamma Globulin 0.6 0.5-1.6 g/dL
Globulin, Total 2.4 2.0-4.5 g/dL
M-Spike Not Observed Not Observed
Beta Globulin 0.9 0.6-1.3 g/dL
P E Interpretation, S The SPE pattern appears essentially unremarkable. Evidence of monoclonal protein is not apparent.
A/G Ratio 1.8 0.7-2.0 1
Alpha-2-Globulin 0.7 0.4-1.2 g/dL
Alpha-1-Globulin 0.2 0.1-0.4 g/dL
Ife+Protein Electro, 24-Hr Ur
Test Low Normal High Reference Range Units
M-Spike, Mg/24 Hr 11 Not Observed mg/24 hr
M-Spike, % 56.8 Not Observed %
Protein,Total,Urine 4.7 0.0-15.0 mg/dL
Alpha-2-Globulin, U 6.8 %
Albumin, U 21.1 %
Alpha-1-Globulin, U 1.0 %
Immunofixation Result, Urine Bence Jones Protein positive; kappa type.
Beta Globulin, U 61.7 %
Gamma Globulin, U 9.5 %
Prot,24hr Calculated 18.8 30.0-150.0 mg/24 hr
Venipuncture
Test Low Normal High Reference Range Units
Creatinine Clearance
Test Low Normal High Reference Range Units
Creatinine Clearance 19 97-137 mL/min
Creatinine, Ur 24hr 245.2 1000.0-2000.0 mg/24 hr
Creatinine, Urine 61.3 24.0-392.0 mg/dL
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CMolinaro
Re: Allo General Questions
Hi Chris,
Sorry to hear that your myeloma may be returning. I did an allo in my first CR and I am doing great. It will be two years since my allo this month. I was in my early 40's when I did my allo and it was the best decision I ever made.
A couple of general comments. Allos are less likely to work the longer you wait to do it. If you think you may need one the sooner you do it the better. A good person to ask would be Dr. Goodman since he did his in a relapsed setting. Unfortunately he did not get into a deep enough remission to allow the donor immune system time to mature and be able to kill the myeloma cells. The longest remission is usually the first CR. That is one reason why allos work best when done in CR1.
A lot of what your experience will be like will pertain to how the allo is done. There are different ways to do an allo. As a male patient it could make a big difference if your donor is male or female. The problems that come from an allo is graft vs host disease and an increased risk of infection in the short run. A little GVHD is a great thing (Grade 1 Acute GVHD and/or limited chronic GVHD) since it is a sign that the donor immune system may be active and attacking the cancer while a lot of GVHD can be detrimental to QOL.
I did a partially T Cell depleted allo with myeloablative conditioning. I used ATG (antithymocyte globulin) for T cell depletion and it worked great at preventing problematic GVHD. There are other methods of T cell depletion that work as well. However, you Doctor may think you need all the immunotherapy you can get and may not think you can do a T cell depleted allo. I had an unrelated female donor which is typically associated with a high chance of GVHD and low chance of relapse. At this point it looks like my Doctor may have "nailed it" with respect to her dose of ATG. I had Grade 1 acute GVHD for a couple of weeks and had (very) limited chronic GVHD for one month after I discontinued my immunosuppressive drug (Prograf). I also had a molecular response which gives me the best chance of never relapsing.
As a patient it is your responsibility to avoid infection. You need to be committed to getting to all of your appointments and staying away from crowds until your immune system recovers. It is a team effort to have a successful allo transplant. It is a time commitment upfront, but the reward is great. I now have a well functioning immune system, have no restrictions on travel, great QOL and may be cured of myeloma. IMO the allo was well worth the effort. Allo remains the only therapy that the vast majority of Doctors agree is potentially curative, so by definition it is the therapy with the best chance to give you a long life.
If you have any more specific questions I will try and answer them.
Mark
Sorry to hear that your myeloma may be returning. I did an allo in my first CR and I am doing great. It will be two years since my allo this month. I was in my early 40's when I did my allo and it was the best decision I ever made.
A couple of general comments. Allos are less likely to work the longer you wait to do it. If you think you may need one the sooner you do it the better. A good person to ask would be Dr. Goodman since he did his in a relapsed setting. Unfortunately he did not get into a deep enough remission to allow the donor immune system time to mature and be able to kill the myeloma cells. The longest remission is usually the first CR. That is one reason why allos work best when done in CR1.
A lot of what your experience will be like will pertain to how the allo is done. There are different ways to do an allo. As a male patient it could make a big difference if your donor is male or female. The problems that come from an allo is graft vs host disease and an increased risk of infection in the short run. A little GVHD is a great thing (Grade 1 Acute GVHD and/or limited chronic GVHD) since it is a sign that the donor immune system may be active and attacking the cancer while a lot of GVHD can be detrimental to QOL.
I did a partially T Cell depleted allo with myeloablative conditioning. I used ATG (antithymocyte globulin) for T cell depletion and it worked great at preventing problematic GVHD. There are other methods of T cell depletion that work as well. However, you Doctor may think you need all the immunotherapy you can get and may not think you can do a T cell depleted allo. I had an unrelated female donor which is typically associated with a high chance of GVHD and low chance of relapse. At this point it looks like my Doctor may have "nailed it" with respect to her dose of ATG. I had Grade 1 acute GVHD for a couple of weeks and had (very) limited chronic GVHD for one month after I discontinued my immunosuppressive drug (Prograf). I also had a molecular response which gives me the best chance of never relapsing.
As a patient it is your responsibility to avoid infection. You need to be committed to getting to all of your appointments and staying away from crowds until your immune system recovers. It is a team effort to have a successful allo transplant. It is a time commitment upfront, but the reward is great. I now have a well functioning immune system, have no restrictions on travel, great QOL and may be cured of myeloma. IMO the allo was well worth the effort. Allo remains the only therapy that the vast majority of Doctors agree is potentially curative, so by definition it is the therapy with the best chance to give you a long life.
If you have any more specific questions I will try and answer them.
Mark
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Mark
Re: Allo General Questions
Thank you for responding. Is going with an allo at my age the best idea for living a long life or do I bypass an allo, go back on meds and hope that something works to hold this off for years?
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CMolinaro
Re: Allo General Questions
The allo question is not a simple one with a simple answer. As far as your numbers are concerned, it is hard to comment on these as you really need to compare and graph those with your earlier numbers over the past months and years.
I'd recommend talking with a couple of other doctors with different views on the topic. You will find an entire spectrum of views out there on this topic, including those that will advise never doing a transplant under just about every circumstance.
If your primary goal is a long life, are you willing to take on the very significant 20%-30% mortality rate to get there? I assume QOL must come into play at some point and you therefore need to consider the very real possibility (50/50) of developing GVHD associated with allos. Even if I personally wanted to do this option for some reason in the future, my family would likely be arguing me out of it unless there were some extenuating circumstance that demanded an allo. I've also talked to two respected doctors (one of which is the director of a transplant center) at two major transplant centers in Colorado and they are also generally opposed to allos for the same reasons outlined in the following links. There are, of course, exceptions to this and mini allos have saved people's lives.
You might find these links to be insightful:
https://www.youtube.com/watch?v=zTwcR0DZ2mI&feature=youtube_gdata_player
http://asheducationbook.hematologylibrary.org/content/2012/1/251.full
http://www.medscape.com/viewarticle/733682
And just posted by Gary P, see slide #44 of overall survival for auto, sibling and unrelated donor allos: http://www.cibmtr.org/ReferenceCenter/SlidesReports/SummarySlides/Pages/index.aspx#DownloadSummarySlides
There is never a perfect answer to any of these multiple myeloma issues. Read all the opinions carefully, consider all the historical data and investigate all the recent developments and trials. I wish you the best of luck.
I'd recommend talking with a couple of other doctors with different views on the topic. You will find an entire spectrum of views out there on this topic, including those that will advise never doing a transplant under just about every circumstance.
If your primary goal is a long life, are you willing to take on the very significant 20%-30% mortality rate to get there? I assume QOL must come into play at some point and you therefore need to consider the very real possibility (50/50) of developing GVHD associated with allos. Even if I personally wanted to do this option for some reason in the future, my family would likely be arguing me out of it unless there were some extenuating circumstance that demanded an allo. I've also talked to two respected doctors (one of which is the director of a transplant center) at two major transplant centers in Colorado and they are also generally opposed to allos for the same reasons outlined in the following links. There are, of course, exceptions to this and mini allos have saved people's lives.
You might find these links to be insightful:
https://www.youtube.com/watch?v=zTwcR0DZ2mI&feature=youtube_gdata_player
http://asheducationbook.hematologylibrary.org/content/2012/1/251.full
http://www.medscape.com/viewarticle/733682
And just posted by Gary P, see slide #44 of overall survival for auto, sibling and unrelated donor allos: http://www.cibmtr.org/ReferenceCenter/SlidesReports/SummarySlides/Pages/index.aspx#DownloadSummarySlides
There is never a perfect answer to any of these multiple myeloma issues. Read all the opinions carefully, consider all the historical data and investigate all the recent developments and trials. I wish you the best of luck.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Allo General Questions
Hi Multtibilly,
" I assume QOL must come into play at some point and you therefore need to consider the very real possibility (50/50) of developing GVHD associated with allos."
Actually QOL is the strength of the T cell depleted according to this NIH published study.
"Most survivors beyond 5 years had an excellent performance status with no difference in physical and mental health and higher HRQL scores (P = .02) compared with population norms. Although physical and psychologic symptom distress was low, those with higher symptom distress experienced inferior HRQL. These results show that 5 or more years after T cell-depleted HSCT for hematologic malignancy most individuals survive disease free with an excellent performance status, preserved physical and psychological health, and excellent HRQL."
http://www.ncbi.nlm.nih.gov/pubmed/20302959
Any published studies showing QOL on par with population norms that are taking novel agents? I 100% agree with well known myeloma Doctor James Berenson on this point about QOL.
"Despite recent advances in the treatment of multiple myeloma, the disease
remains incurable and many of the most effective, newer
combination therapies are accompanied by significant side
effects that have a major negative impact on the patient’s quality
of life."
http://myeloma.org/pdfs/Berenson_8134.pdf
Mark
" I assume QOL must come into play at some point and you therefore need to consider the very real possibility (50/50) of developing GVHD associated with allos."
Actually QOL is the strength of the T cell depleted according to this NIH published study.
"Most survivors beyond 5 years had an excellent performance status with no difference in physical and mental health and higher HRQL scores (P = .02) compared with population norms. Although physical and psychologic symptom distress was low, those with higher symptom distress experienced inferior HRQL. These results show that 5 or more years after T cell-depleted HSCT for hematologic malignancy most individuals survive disease free with an excellent performance status, preserved physical and psychological health, and excellent HRQL."
http://www.ncbi.nlm.nih.gov/pubmed/20302959
Any published studies showing QOL on par with population norms that are taking novel agents? I 100% agree with well known myeloma Doctor James Berenson on this point about QOL.
"Despite recent advances in the treatment of multiple myeloma, the disease
remains incurable and many of the most effective, newer
combination therapies are accompanied by significant side
effects that have a major negative impact on the patient’s quality
of life."
http://myeloma.org/pdfs/Berenson_8134.pdf
Mark
-
Mark
Re: Allo General Questions
Hi Chris,
Only you can answer that question. Your Doctor should be able to give you estimates of outcomes based on your individual case. Averages are just averages. I do not view myself as the "average" patient.
What I did was look at 2 different future scenarios when deciding. I looked at how I would fell when I relapsed if I did not do the allo. I than compared that how I would fell if I had a problem with GVHD. I would have felt worse when I relapsed thinking that I gave up my opportunity to be cured and have a great QOL. All myeloma therapies have side effects. GVHD is unique in the sense that having some GVHD is positive, not a negative. I looked at it like taking strike 3 with the bases loaded as opposed to swinging for the fences. I would rather "go down swinging".
Do not forget I am in the minority. It really depends on what you are comfortable with. It also depends on how well you tolerate the meds. Some patients have more side effects than others. There is no right or wrong answer. It is definitely not easy being a myeloma patient, that is for sure!
Mark
Only you can answer that question. Your Doctor should be able to give you estimates of outcomes based on your individual case. Averages are just averages. I do not view myself as the "average" patient.
What I did was look at 2 different future scenarios when deciding. I looked at how I would fell when I relapsed if I did not do the allo. I than compared that how I would fell if I had a problem with GVHD. I would have felt worse when I relapsed thinking that I gave up my opportunity to be cured and have a great QOL. All myeloma therapies have side effects. GVHD is unique in the sense that having some GVHD is positive, not a negative. I looked at it like taking strike 3 with the bases loaded as opposed to swinging for the fences. I would rather "go down swinging".
Do not forget I am in the minority. It really depends on what you are comfortable with. It also depends on how well you tolerate the meds. Some patients have more side effects than others. There is no right or wrong answer. It is definitely not easy being a myeloma patient, that is for sure!
Mark
-
Mark
Re: Allo General Questions
Hi Mark,
How long after the transplant were you able to start working and how long until you started to feel better? Also, what are the side effects of GVHD that is so bad? During my last auto sct, i did acquire gvhd but was taken care of with steroids, etc. Im very healthy, never had any side effects other than the gvhd and was back at work two wks after both transplants.
How long after the transplant were you able to start working and how long until you started to feel better? Also, what are the side effects of GVHD that is so bad? During my last auto sct, i did acquire gvhd but was taken care of with steroids, etc. Im very healthy, never had any side effects other than the gvhd and was back at work two wks after both transplants.
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Cmolinaro
Re: Allo General Questions
Mark wrote:
> Hi Multtibilly,
>
> Any published studies showing QOL on par with population norms that are
> taking novel agents? I 100% agree with well known myeloma Doctor James
> Berenson on this point about QOL.
>
> "Despite recent advances in the treatment of multiple myeloma, the
> disease
> remains incurable and many of the most effective, newer
> combination therapies are accompanied by significant side
> effects that have a major negative impact on the patient’s quality
> of life."
> http://myeloma.org/pdfs/Berenson_8134.pdf
>
> Mark
Respectfully, that quote is taking Berenson out of context. Most people familiar with Berenson know that he has went from being an advocate of transplants to one who would never recommend a transplant and instead now focuses on lower-dose chemo approaches tailored specifically to each individual, with an eye to maximizing the patients QOL. In fact, it is this philosophy that motivated me to set up my first appointment with him in just a couple of weeks, so that I can get a more balanced view of the options out there.
http://multiplemyelomablog.com/2012/11/breaking-news-combination-therapy-numbers-including-kyprolis-trending-unexpectedly-high.html
> Hi Multtibilly,
>
> Any published studies showing QOL on par with population norms that are
> taking novel agents? I 100% agree with well known myeloma Doctor James
> Berenson on this point about QOL.
>
> "Despite recent advances in the treatment of multiple myeloma, the
> disease
> remains incurable and many of the most effective, newer
> combination therapies are accompanied by significant side
> effects that have a major negative impact on the patient’s quality
> of life."
> http://myeloma.org/pdfs/Berenson_8134.pdf
>
> Mark
Respectfully, that quote is taking Berenson out of context. Most people familiar with Berenson know that he has went from being an advocate of transplants to one who would never recommend a transplant and instead now focuses on lower-dose chemo approaches tailored specifically to each individual, with an eye to maximizing the patients QOL. In fact, it is this philosophy that motivated me to set up my first appointment with him in just a couple of weeks, so that I can get a more balanced view of the options out there.
http://multiplemyelomablog.com/2012/11/breaking-news-combination-therapy-numbers-including-kyprolis-trending-unexpectedly-high.html
Last edited by Multibilly on Sun May 12, 2013 3:49 pm, edited 1 time in total.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Allo General Questions
When you guys mention quality of life, what specifically are we talking about?
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Cmolinaro
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