My beautiful Mother passed from multiple myeloma April 23, less than two months from diagnosis. Looking back, she had symptoms as long as 7 years ago (rib pain, back pain, chronic illness, and exhaustion to name a few. ) While I am grieving, I find it helpful to educate myself on the disease that stole my mom from me so very quickly.
I am wondering, how long can a person have myeloma before its end stages? Years? It seems to me that is correct, but I am really disturbed by the lack of detailed information out there.
Hoping to hear from many! God bless!
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ForMyMomma - Name: Jessica
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: March 10, 2014, passed April 23, 2014
- Age at diagnosis: 53
Re: How long before myeloma's end stages?
Hello Jessica,
I'm very sorry to hear about your mother's passing. I hope that you and your family are doing well despite the loss you have suffered.
You ask: "how long can a person have myeloma before its end stages?"
Do you mean how long is it typically between when a person has symptoms or signs of myeloma, and when they are diagnosed?
Or do you mean how long after a person is diagnosed do they typically survive?
I'm very sorry to hear about your mother's passing. I hope that you and your family are doing well despite the loss you have suffered.
You ask: "how long can a person have myeloma before its end stages?"
Do you mean how long is it typically between when a person has symptoms or signs of myeloma, and when they are diagnosed?
Or do you mean how long after a person is diagnosed do they typically survive?
Re: How long before myeloma's end stages?
Thank you for responding.
I guess I should have been clearer. I am wondering how long a person can have Myeloma without knowing? Years? Or is this a fast growing cancer which can develop and progress over a short period of time?
From what I know about my mother, her short diagnosis, and years of symptoms, I am guessing that this cancer is one that develops over years.
I guess I should have been clearer. I am wondering how long a person can have Myeloma without knowing? Years? Or is this a fast growing cancer which can develop and progress over a short period of time?
From what I know about my mother, her short diagnosis, and years of symptoms, I am guessing that this cancer is one that develops over years.
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ForMyMomma - Name: Jessica
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: March 10, 2014, passed April 23, 2014
- Age at diagnosis: 53
Re: How long before myeloma's end stages?
Hi Jessica,
I am so sorry to hear about your Mom, and will keep you and your family in my thoughts and prayers.
EJ was diagnosed in 2010 with multiple myeloma, with no symptoms other than a sore rib. By my recollection he started complaining about his rib five years earlier (!!) but assumed that it was from playing too much volleyball.
I think a person can have one of the precursor diseases -- MGUS or smoldering myeloma for years before it becomes active. Some people with MGUS may never develop multiple myeloma. EJ's doctors think he may have been smoldering for a long time.
But sadly, multiple myeloma can also be incredibly swift, especially if it is "high risk" disease.
Hope that helps.
Lyn
I am so sorry to hear about your Mom, and will keep you and your family in my thoughts and prayers.
EJ was diagnosed in 2010 with multiple myeloma, with no symptoms other than a sore rib. By my recollection he started complaining about his rib five years earlier (!!) but assumed that it was from playing too much volleyball.
I think a person can have one of the precursor diseases -- MGUS or smoldering myeloma for years before it becomes active. Some people with MGUS may never develop multiple myeloma. EJ's doctors think he may have been smoldering for a long time.
But sadly, multiple myeloma can also be incredibly swift, especially if it is "high risk" disease.
Hope that helps.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: How long before myeloma's end stages?
I'm sorry to hear of your loss, but I don't think there is an answer to your question.
My sister probably had it for several years before it was diagnosed. Her consistent symptom was pneumonia without any obvious cause. This led eventually to a more in depth search for the cause.
I on the other hand had bi-yearly doctor visits and blood tests for CLL and I went from no symptoms to serious CRA of the CRAB in a 6 month period.
This forum indicates that multiple myeloma doesn't follow a strict pattern in any phase.
My sister probably had it for several years before it was diagnosed. Her consistent symptom was pneumonia without any obvious cause. This led eventually to a more in depth search for the cause.
I on the other hand had bi-yearly doctor visits and blood tests for CLL and I went from no symptoms to serious CRA of the CRAB in a 6 month period.
This forum indicates that multiple myeloma doesn't follow a strict pattern in any phase.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: How long before myeloma's end stages?
Multiple Myeloma is a Hetrogenous disease and as Wayne and others have indicated manifests itself uniquely per individual. More people today are being diagnosed earlier than was the case 20 years ago as family physicians are more in tune with it. Like many, I had no symptoms but a odd result in a urinalysis during an annual physical started me on my journey.
In the past many people did not get annual physicals and if they did, full blood and urine tests were not run that might have uncovered something that would trigger more investigation. So in the not to long ago past many people were already in late stages before the diagnosis occured. I probably had begun to develop multiple myeloma a year before I had my physical since it had been 2 years since my prior physical. Thus the importance of annual physicals with a CBC and full Chemistry panel along with a urinalyis test being performed. Those will not spot eveything but will show if excess protein is in the blood or urine in which case, more detailed tests can be ordered.
Ron
In the past many people did not get annual physicals and if they did, full blood and urine tests were not run that might have uncovered something that would trigger more investigation. So in the not to long ago past many people were already in late stages before the diagnosis occured. I probably had begun to develop multiple myeloma a year before I had my physical since it had been 2 years since my prior physical. Thus the importance of annual physicals with a CBC and full Chemistry panel along with a urinalyis test being performed. Those will not spot eveything but will show if excess protein is in the blood or urine in which case, more detailed tests can be ordered.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: How long before myeloma's end stages?
With treatment, I think the future is excellent for many patients. For example, this abstract was just published, looking (over 22 years) at patients who achieved a CR after ASCT. Median PFS in this group was nearly 11 years and median OS was 17 - yes 17 - years. I have never seen such numbers before.
BTW: I don't equate a CR with ASCT; it may not matter how you get to a CR. But the results are noteworthy.
Complete response after autologous stem cell transplant in multiple myeloma
Kumar L, Iqbal N, Mookerjee A, Verma RK, Sharma OD, Batra A, Pramanik R, Gupta R.
Department of Medical Oncology and Laboratory Oncology Institute Rotary Cancer Hospital, All India Institute of Medical Sciences, New Delhi, 11 00 29, India.
We evaluated long-term outcome of patients achieving complete response (CR) after autologous stem cell transplantation (ASCT) for multiple myeloma. Between April 1990 and June 2012 191 patients underwent ASCT. The median age was 53 years (range, 26-68 years), 135 were men. Pretransplant, patients received induction therapy with VAD (vincristine, doxorubicin, dexamethasone; n = 77), novel agents (n = 92), or alkylating agent-based, n = 22); 43% received more than one line of induction regimen. Response to transplant was defined as per EBMT criteria. The median follow-up for the entire group was 85 months (range, 6-232.5 months). Following transplant 109 (57.1%) patients achieved CR. Median progression-free survival (PFS) for patients with CR was higher compared to those with VGPR and PR, (107 vs. 18 vs. 18 months, P < 0.001). Number of lines of therapy pretransplant (one or two vs. more than two lines of therapy (P < 0.001), and absolute lymphocyte count of ≤3000/cmm were predictors of superior PFS. Median overall survival (OS) for patients with CR was higher, (204 months), compared to those with VGPR (71.5 months, P < 0.001) and PR (51.5 months, P < 0.001), respectively. On Cox regression analysis, patients who received one line of induction therapy pretransplant (hazard ratio, HR 2.154, P < 0.001) and those with absolute lymphocyte count of ≤3000/mm3 (HR 0.132, P < 0.001) had superior PFS. For overall survival, induction treatment up to one line (HR 2.403, P < 0.004) and Hb > 7.1 G/dL at diagnosis (HR 4.756, P < 0.01) were associated with superior outcome. On landmark analysis at 12 months, PFS and OS continued to remain superior for patients attaining CR. Achievement of CR post transplant is associated with longer OS and PFS. Among complete responders, those who receive one line of induction therapy pretransplant have superior outcome.
BTW: I don't equate a CR with ASCT; it may not matter how you get to a CR. But the results are noteworthy.
Complete response after autologous stem cell transplant in multiple myeloma
Kumar L, Iqbal N, Mookerjee A, Verma RK, Sharma OD, Batra A, Pramanik R, Gupta R.
Department of Medical Oncology and Laboratory Oncology Institute Rotary Cancer Hospital, All India Institute of Medical Sciences, New Delhi, 11 00 29, India.
We evaluated long-term outcome of patients achieving complete response (CR) after autologous stem cell transplantation (ASCT) for multiple myeloma. Between April 1990 and June 2012 191 patients underwent ASCT. The median age was 53 years (range, 26-68 years), 135 were men. Pretransplant, patients received induction therapy with VAD (vincristine, doxorubicin, dexamethasone; n = 77), novel agents (n = 92), or alkylating agent-based, n = 22); 43% received more than one line of induction regimen. Response to transplant was defined as per EBMT criteria. The median follow-up for the entire group was 85 months (range, 6-232.5 months). Following transplant 109 (57.1%) patients achieved CR. Median progression-free survival (PFS) for patients with CR was higher compared to those with VGPR and PR, (107 vs. 18 vs. 18 months, P < 0.001). Number of lines of therapy pretransplant (one or two vs. more than two lines of therapy (P < 0.001), and absolute lymphocyte count of ≤3000/cmm were predictors of superior PFS. Median overall survival (OS) for patients with CR was higher, (204 months), compared to those with VGPR (71.5 months, P < 0.001) and PR (51.5 months, P < 0.001), respectively. On Cox regression analysis, patients who received one line of induction therapy pretransplant (hazard ratio, HR 2.154, P < 0.001) and those with absolute lymphocyte count of ≤3000/mm3 (HR 0.132, P < 0.001) had superior PFS. For overall survival, induction treatment up to one line (HR 2.403, P < 0.004) and Hb > 7.1 G/dL at diagnosis (HR 4.756, P < 0.01) were associated with superior outcome. On landmark analysis at 12 months, PFS and OS continued to remain superior for patients attaining CR. Achievement of CR post transplant is associated with longer OS and PFS. Among complete responders, those who receive one line of induction therapy pretransplant have superior outcome.
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DanD
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