There are so many factors that there really is no answer to the question which, for me, makes it worse.
I am recently married and want to have a family. I was diagnosed 2 years ago and have been through the treatment routine. I was 52 years old and stage one when they found the myeloma. I have never had symptoms except one singular plasmacytoma and 20% cell involvement.
Waiting today to hear the results of my bone marrow biopsy/one year follow up on transplant.
Last week at Duke one of my doctors commented on how their approach to dealing with myeloma has changed in just the two years I've had it. Most recently, last summer, Dr. G told me that the standard for using Revlimid for maintenance was about 3 years. Now she says stats say lifetime, or until remission ends.
If myeloma is really about 8 different diseases all mixed up in some form in each of us, the one thing I know for sure is you better be dealing with a specialist. The average, day to day oncologist cannot keep up with the changes; there is just not enough time in the day!
Forums
Re: Life Expectancy
I was researching the latest regarding life expectancy for multiple myeloma'ers and came upon this site. The reason being is that my local oncologist commented that I would only need to see him once a year from now on - just send in blood work every 4 mos. Yikes!!! Never thought I would see that day.
I was enrolled in TT2 at UAMS in 2000 (2 SCT's). I was 45 at that time and diagnosed with Stage 1 IgG Kappa Light Chain - good chromosome profile. The road was not easy, and I was diagnosed with 3rd stage B Cell Lymphoma in 2004 ( caused by immune suppression; Rutuxan took care of that critter). I also have ulcerative colitis because my body does not produce enough IgG IgA etc. I know that Barlogie's protocol has been revised significantly since then, based on experiences such as mine. In spite of all this, I am out 14 years and have not had any treatment for multiple myeloma since 2003. I live in Marin County, CA. Most of the multiple myeloma patients from our regional cancer center go back to LR. We are all out 5 plus years.
The purpose of this e-mail is not to tout UAMS. Rather I want to tell people that multiple myeloma is not a death sentence. In 2000, I was given at the most, 8 years with transplant. Not good to hear as I was a mom of three sons 13 and younger. Obviously those numbers were wrong in my case.
Nonetheless, I caution anyone who had been diagnosed with multiple myeloma to seek out a specialist from a university treatment center. Now acolytes of such rock stars as Bart Barlogie are scattered all over the US. Seek out students of pioneers in the field if you cannot get to the pioneers themselves. The expertise is what gives patients a fighting chance. A local oncologist cannot manage this disease because of it's complexity. And, do not wait. The disease is cagey and early administration of an effective drug protocol will maximize your chances of survival. As I was told, Bart loves "virgins" (translate: an untreated patient)! If you follow my advice, chances are your doctor may tell you someday to also go away!
PS Have been going back every year to LR to participate in their clinical study. Do not know if I have the courage to give that up. Once an multiple myeloma'er always a multiple myeloma'er.
PPS I should clarify that I know many people who were diagnosed at later stages than me and are doing very well. But like myself, as soon as they were diagnosed, their local oncologist sought out care at a university treatment center; and the local onc did not attempt to treat the disease by himself.
I was enrolled in TT2 at UAMS in 2000 (2 SCT's). I was 45 at that time and diagnosed with Stage 1 IgG Kappa Light Chain - good chromosome profile. The road was not easy, and I was diagnosed with 3rd stage B Cell Lymphoma in 2004 ( caused by immune suppression; Rutuxan took care of that critter). I also have ulcerative colitis because my body does not produce enough IgG IgA etc. I know that Barlogie's protocol has been revised significantly since then, based on experiences such as mine. In spite of all this, I am out 14 years and have not had any treatment for multiple myeloma since 2003. I live in Marin County, CA. Most of the multiple myeloma patients from our regional cancer center go back to LR. We are all out 5 plus years.
The purpose of this e-mail is not to tout UAMS. Rather I want to tell people that multiple myeloma is not a death sentence. In 2000, I was given at the most, 8 years with transplant. Not good to hear as I was a mom of three sons 13 and younger. Obviously those numbers were wrong in my case.
Nonetheless, I caution anyone who had been diagnosed with multiple myeloma to seek out a specialist from a university treatment center. Now acolytes of such rock stars as Bart Barlogie are scattered all over the US. Seek out students of pioneers in the field if you cannot get to the pioneers themselves. The expertise is what gives patients a fighting chance. A local oncologist cannot manage this disease because of it's complexity. And, do not wait. The disease is cagey and early administration of an effective drug protocol will maximize your chances of survival. As I was told, Bart loves "virgins" (translate: an untreated patient)! If you follow my advice, chances are your doctor may tell you someday to also go away!
PS Have been going back every year to LR to participate in their clinical study. Do not know if I have the courage to give that up. Once an multiple myeloma'er always a multiple myeloma'er.
PPS I should clarify that I know many people who were diagnosed at later stages than me and are doing very well. But like myself, as soon as they were diagnosed, their local oncologist sought out care at a university treatment center; and the local onc did not attempt to treat the disease by himself.
Re: Life Expectancy
Hi MHayden2,
Happy Mothers Day! Your story is great to read. You are at the point of the progression free survival curve that is starting to go flat for patients that do autos, meaning you have a good chance of never relapsing.
"The reason being is that my local oncologist commented that I would only need to see him once a year from now on - just send in blood work every 4 mos. Yikes!!! Never thought I would see that day."
"In spite of all this, I am out 14 years and have not had any treatment for multiple myeloma since 2003."
Few patients diagnosed in 2014 could hope to go 10 years plus DRUG FREE and in remission. Most doctors do not even try to get that for their patients - they just keep them on drugs until they relapse. Your doctors did a great job for you. Congratulations!
Mark
Happy Mothers Day! Your story is great to read. You are at the point of the progression free survival curve that is starting to go flat for patients that do autos, meaning you have a good chance of never relapsing.
"The reason being is that my local oncologist commented that I would only need to see him once a year from now on - just send in blood work every 4 mos. Yikes!!! Never thought I would see that day."
"In spite of all this, I am out 14 years and have not had any treatment for multiple myeloma since 2003."
Few patients diagnosed in 2014 could hope to go 10 years plus DRUG FREE and in remission. Most doctors do not even try to get that for their patients - they just keep them on drugs until they relapse. Your doctors did a great job for you. Congratulations!
Mark
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Mark
Re: Life Expectancy
I was diagnosed in 1998, stage IV, given less than 1 year to live. Found the maddest of all mad scientist doctors in Little Rock, AR. Did 2 years of chemo, 2 stem cell transplants, and have had mini-relapses in the last 7 years, but as of today I am cancer free!! I was 30 when I was diagnosed, which is very young for this disease. I am now 47 and live a full rewarding life. Stay strong.
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Mark
Re: Life Expectancy
My name is Diane. I was diagnosed with multiple myeloma in 1988 and received a treatment for it called Cytoxan [cyclophosphamide]. Since then, I have been well and happy and healthy.
I am not 100% sure that they correctly diagnosed me, but I have been doing very well for the past 27 years. I am now 68 years old. I LOVE to laugh and watch comedy. Perhaps that is why I am alive.
Right after the treatments I found out for sure that my husband was having affairs with other women and divorced him. This change in my life also made me feel healthy.
I can't say that it was because any of those life changes that made me healthy, but I do think that perhaps it was a misdiagnose when I was in the hospital with viral pneumonia and the bone marrow test was not 100% positive. But they still diagnosed me with multiple myeloma and said that I had tops of 5 years to live.
YEAH ... they were wrong ...
PS - I am white and live in a small town (Reno, NV)
LOVIN LIFE
I am not 100% sure that they correctly diagnosed me, but I have been doing very well for the past 27 years. I am now 68 years old. I LOVE to laugh and watch comedy. Perhaps that is why I am alive.
Right after the treatments I found out for sure that my husband was having affairs with other women and divorced him. This change in my life also made me feel healthy.
I can't say that it was because any of those life changes that made me healthy, but I do think that perhaps it was a misdiagnose when I was in the hospital with viral pneumonia and the bone marrow test was not 100% positive. But they still diagnosed me with multiple myeloma and said that I had tops of 5 years to live.
YEAH ... they were wrong ...
PS - I am white and live in a small town (Reno, NV)
LOVIN LIFE
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dibj
Re: Life Expectancy
I am an almost 17 year survivor of multiple myeloma. That includes 13 years of complete remission. I'm going to be 60 and now have 2 grandchildren. When I was diagnosed, because my disease was so aggressive, they gave me two years. I was 43.
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Regina
Re: Life Expectancy
Thank you so much for sharing your experiences. It helps a lot to read long-term survivors' testimonies! I am 45 and was diagnosed two years ago with IgG kappa multiple myeloma stage III. I am now in VGPR and still so scared.
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jane84 - Name: jane84
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 11,2012
- Age at diagnosis: 44
Re: Life Expectancy
This from a 2011 Czech report,
http://www.eonkologie.cz/cs/2011-suppl/2011-suppl-hajek
"Prognosis: Average length of life of untreated patients is 14 months; the median of survival on standard therapy is 3–4 years after diagnosis; transplantation protocols increased life to 6–7 years and about 20% of patients live longer than 10 years. Using the newest treatment protocols, life expectancy has been increased to 5 years for about 80% of patients and it is possible that in 30–40% of patients will survive more than 10 years. Unfortunately, about 10% of patients are high-risk, and the disease is newly active within a year, usually signaling worst prognosis. Following treatment may increase life expectancy no more than 2–5 years [4]. Many prognostic factors are used in multiple myeloma: clinical (age, type of IgG paraprotein, absence of renal insufficiency, complete remission), conventional laboratory markers (albumin, beta2microglobulin, lactate dehydrogenasis, morphology of plasmoblasts, light chains, …), molecular biological markers (normal karyotype, presence of hyperdiploidy, risk gene panel etc). Detailed description of significance of each prognostic factor is beyond the scope of this text."
So while it is great to hear these stories of long remissions and disease free states, it is expected in a certain percentage. Typically those patients are patients treated early with asymptomatic presentation.
This may not be true in all complete responses, but I believe it is the reason that they are trying to determine criteria for earlier treatment ... because it provides a better outcome!
Also, keep in mind statistics are a bell curve, so while 10% live beyond ten years, these survivors are increasing the stats for the 5 year survival rate.
Best
http://www.eonkologie.cz/cs/2011-suppl/2011-suppl-hajek
"Prognosis: Average length of life of untreated patients is 14 months; the median of survival on standard therapy is 3–4 years after diagnosis; transplantation protocols increased life to 6–7 years and about 20% of patients live longer than 10 years. Using the newest treatment protocols, life expectancy has been increased to 5 years for about 80% of patients and it is possible that in 30–40% of patients will survive more than 10 years. Unfortunately, about 10% of patients are high-risk, and the disease is newly active within a year, usually signaling worst prognosis. Following treatment may increase life expectancy no more than 2–5 years [4]. Many prognostic factors are used in multiple myeloma: clinical (age, type of IgG paraprotein, absence of renal insufficiency, complete remission), conventional laboratory markers (albumin, beta2microglobulin, lactate dehydrogenasis, morphology of plasmoblasts, light chains, …), molecular biological markers (normal karyotype, presence of hyperdiploidy, risk gene panel etc). Detailed description of significance of each prognostic factor is beyond the scope of this text."
So while it is great to hear these stories of long remissions and disease free states, it is expected in a certain percentage. Typically those patients are patients treated early with asymptomatic presentation.
This may not be true in all complete responses, but I believe it is the reason that they are trying to determine criteria for earlier treatment ... because it provides a better outcome!
Also, keep in mind statistics are a bell curve, so while 10% live beyond ten years, these survivors are increasing the stats for the 5 year survival rate.
Best
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jhorner - Name: Magpie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 49
Re: Life Expectancy
Thank you, WW3, it's always good to hear long-term survivors' stories.
Can you tell us a bit more? What were your dad's treatments? Did he have stem cell transplant?
All the best to you and your family
Can you tell us a bit more? What were your dad's treatments? Did he have stem cell transplant?
All the best to you and your family
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jane84 - Name: jane84
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 11,2012
- Age at diagnosis: 44