I was wondering how many of the Myeloma Beacon readers have not had a stem cell transplant and have been told they will never have one?
I have had multiple myeloma for over ten years and have never had a stem cell transplant or ever even had it discussed with me. So I thought I would ask my oncologist about what my options were if I should have bad readings - M or light chains on my 6 months blood tests. Would stem cell transplant be an option for me?
I was told No. Upon further inquiry, I was told that the chemo might be a problem?
I have had no other treatment in 10 years except the first 10 months, when I received thalidomide, dex & morphine.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: No stem cell transplant?
Nippon Ginko, what I find fascinating about the stem cell transplant / no stem cell transplant / early stem cell transplant discussion is the amount of rhetoric it creates.
At 49 and just after 9 months of treatment, I had a autologous stem cell transplant (ASCT). Did I need it that early or even at all? I'm located near a cancer facility and a multiple myeloma specialist who encourages an early ASCT. I was and still am in pain from bone damage and anything offered was better than none in my mind. I desperately sought advice but never a second opinion and wonder if I made the right choice. Fellow posters can cite previous articles/posts but this to me is like forwarding emails. I want a direct answer to a direct question. I have doctors who can talk over me already, I don't need fellow multiple myeloma patients to add to it.
Was a transplant worth it? I'm not sure but moving forward, I'll again lean on my fellow cancer warriors and hope to find answers to deliver peace of mind.
I hope you and all others do too!
Kully
At 49 and just after 9 months of treatment, I had a autologous stem cell transplant (ASCT). Did I need it that early or even at all? I'm located near a cancer facility and a multiple myeloma specialist who encourages an early ASCT. I was and still am in pain from bone damage and anything offered was better than none in my mind. I desperately sought advice but never a second opinion and wonder if I made the right choice. Fellow posters can cite previous articles/posts but this to me is like forwarding emails. I want a direct answer to a direct question. I have doctors who can talk over me already, I don't need fellow multiple myeloma patients to add to it.
Was a transplant worth it? I'm not sure but moving forward, I'll again lean on my fellow cancer warriors and hope to find answers to deliver peace of mind.
I hope you and all others do too!
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: No stem cell transplant?
Hi Nipon Ginko,
I'm not sure if you've ever seen some of these guidelines / considerations for transplant eligibility. This is just one commentary that I've seen on the subject:
http://www.uptodate.com/contents/multiple-myeloma-treatment-beyond-the-basics
And, of course, even if one is eligible, they may simply decide that they just don't want one
I'm not sure if you've ever seen some of these guidelines / considerations for transplant eligibility. This is just one commentary that I've seen on the subject:
Because of the risk of toxic and even fatal complications related to stem cell transplantation, not everyone with multiple myeloma is a candidate for stem cell transplantation. Eligibility varies across countries and across institutions. In most European countries, stem cell transplantation for multiple myeloma is offered primarily to patients less than 65 years of age. In the United States, a strict age-limit is not used. Instead, decisions are made on a case-by-case basis based upon a person's health and vary across institutions.
In most centers in the United States, patients with multiple myeloma who have one or more of the following factors are NOT considered eligible for transplantation:
Age >77 years
Direct bilirubin >2.0 mg/dL (an elevated bilirubin level indicates that the liver may not tolerate the high dose chemotherapy required before transplantation)
Serum creatinine >2.5 mg/dL (221 µmol/liter) unless on chronic stable dialysis (creatinine is a reflection of kidney function; those with poor kidney function may not tolerate high dose chemotherapy)
Eastern Cooperative Oncology Group (ECOG) performance status 3 or 4 unless due to bone pain (table 1)
New York Heart Association functional status Class III or IV (table 2)
However, these factors are guidelines; the decision regarding transplant eligibility should be made by the patient and physician after discussing the potential risks, benefits, and the needs and wishes of the patient
http://www.uptodate.com/contents/multiple-myeloma-treatment-beyond-the-basics
And, of course, even if one is eligible, they may simply decide that they just don't want one
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: No stem cell transplant?
Thanks for the guidelines.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: No stem cell transplant?
Hi Nipon,
Pretty amazing for you to be in remission for that long with just one treatment. Good for you.
I think it is harder to collect stem cells needed for transplant after you have been exposed to thalidomide or Revlimid. Although I seem to remember reading that might not be true.
I think the majority, dare I say vast majority, of multiple myeloma patients under the age of, say, 65 do get transplants. Just my observations.
Pretty amazing for you to be in remission for that long with just one treatment. Good for you.
I think it is harder to collect stem cells needed for transplant after you have been exposed to thalidomide or Revlimid. Although I seem to remember reading that might not be true.
I think the majority, dare I say vast majority, of multiple myeloma patients under the age of, say, 65 do get transplants. Just my observations.
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stann
Re: No stem cell transplant?
Stann,
Respectfully, I'm not sure I would agree that the majority of patients under 65 get a stem cell transplant.
Please see:
"...There also has been a sizable increase in the share of patients under the age of 65 receiving a stem cell transplant at any point in their therapy (that is, not just within a year of diagnosis). The Beacon’s analysis indicates that this share has increased from about 22 percent in the first period to 40 percent in the last period".
"Trends In The Use Of Stem Cell Transplantation For Multiple Myeloma (ASH 2012)," The Myeloma Beacon, January 22, 2013.
It will also be curious to see what the data looks like for the past 5 years, given the dramatic changes in the multiple myeloma treatment landscape in that time.
Respectfully, I'm not sure I would agree that the majority of patients under 65 get a stem cell transplant.
Please see:
"...There also has been a sizable increase in the share of patients under the age of 65 receiving a stem cell transplant at any point in their therapy (that is, not just within a year of diagnosis). The Beacon’s analysis indicates that this share has increased from about 22 percent in the first period to 40 percent in the last period".
"Trends In The Use Of Stem Cell Transplantation For Multiple Myeloma (ASH 2012)," The Myeloma Beacon, January 22, 2013.
It will also be curious to see what the data looks like for the past 5 years, given the dramatic changes in the multiple myeloma treatment landscape in that time.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: No stem cell transplant?
Multibilly,
I wonder what the current rate is? My guess is that 90% of those under 70 in the US get transplants at some point (those able to handle them). Just my guess.
I think it is important to separate current recommendations by multiple myeloma specialists vs what they see in the near future. At least for patients making those decisions now. After all, the transplant is just one more tool in the shed.
I think it's akin to walking up to the garden shed and not having the mower. You might see it as only missing the edger? ha.
Best regards to you and may your blood be stellar!!
Stann
I wonder what the current rate is? My guess is that 90% of those under 70 in the US get transplants at some point (those able to handle them). Just my guess.
I think it is important to separate current recommendations by multiple myeloma specialists vs what they see in the near future. At least for patients making those decisions now. After all, the transplant is just one more tool in the shed.
I think it's akin to walking up to the garden shed and not having the mower. You might see it as only missing the edger? ha.
Best regards to you and may your blood be stellar!!
Stann
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stann
Re: No stem cell transplant?
Stann wrote:
"Hi Nipon, Pretty amazing for you to be in remission for that long with just one treatment. Good for you."
Stann:
I have never been told that I am in remission, just that my blood test still looks good and I do not need treatment for multiple myeloma. I ask my oncologist: Why am I still alive? He doesn't have a clue.
However, my PSA readings are once again on the rise, got an appointment with a urologist Thursday - if its not one thing, it's another . NG.
"Hi Nipon, Pretty amazing for you to be in remission for that long with just one treatment. Good for you."
Stann:
I have never been told that I am in remission, just that my blood test still looks good and I do not need treatment for multiple myeloma. I ask my oncologist: Why am I still alive? He doesn't have a clue.
However, my PSA readings are once again on the rise, got an appointment with a urologist Thursday - if its not one thing, it's another . NG.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: No stem cell transplant?
My mom's local oncologist has only ever had one patient do a transplant. He said that he thinks it takes away from quality of life. My mom's specialist that she saw yesterday is pushing for an auto, but said he thinks it only benefits upfront.
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