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Re: return of m-spike
Thanks for all the responses about the stem cell transplant. I personally feel that it is one of the few options that we have. I do feel that the positive responses outweigh the negative responses. If I could avoid it, I would but I feel that I must use all the weapons that are available to me to fight this disease.
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blustein - Name: Richard Blustein
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: July 2009
- Age at diagnosis: 58
Re: return of m-spike
There are very few treatment protocols in cancer that aren't 20+ years old. We had Tandem in Arkansas in '09. My husband is doing well and there are many who are. It is different for everyone and you have to look at the totality of the data and not a few of us here and there. Good luck with your decision, treatment and outcome. I'm sorry to hear of your relapse.
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habubrat - Name: Lori
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2008
- Age at diagnosis: 48
Re: return of m-spike
Dana,
I had the same experience as you did with regard to Allogeneic transplantation. I am in the same age range you are. My form of multiple myeloma typically goes into remission quickly but remission is short. My Doctor and I decided to go the Allo route after my 2nd cycle of Induction. The Induction was working well, as she expected, so we were planning on doing Induction until I got to CR and than do the Allo. Unfortunatley, my Insurance Co. pays for Tandem Auto-Allo but would not pay for Allo first. My Allo was not a RIC, but I recovered from it quicker than I did from my Auto. In my case I think it had to do with the fact that both my Doctor and I saw no benefit to doing the Auto in my case. I was in a much more positive frame of mind when I did my Allo.
Good luck with your future treatment. I was fortunate - I had a Molecular response to my Allo, so we are not planning on treating at this point. I am 9 months out from my Allo and I too feel better than I have at any time since diagnosis. It is great to get a break from the Poison! I feel so lucky that I had a progressive thinking Doctor - the others I got opinions from discussed the "same old, same old" treatments like Tandem Autos, long term Maintenance programs, etc. Your Brother is a great person to donate. I actually used a Matched Unrelated Donor. Anyone reading this should encourage anyone they know to contact the Be the Match registry - marrow.org on the web. Anyone reading here knows that a healthy donor provides something medical science cannot currently offer - a potential cure to this disease. Those Donors are truly exceptional people and real heroes.
Mark
I had the same experience as you did with regard to Allogeneic transplantation. I am in the same age range you are. My form of multiple myeloma typically goes into remission quickly but remission is short. My Doctor and I decided to go the Allo route after my 2nd cycle of Induction. The Induction was working well, as she expected, so we were planning on doing Induction until I got to CR and than do the Allo. Unfortunatley, my Insurance Co. pays for Tandem Auto-Allo but would not pay for Allo first. My Allo was not a RIC, but I recovered from it quicker than I did from my Auto. In my case I think it had to do with the fact that both my Doctor and I saw no benefit to doing the Auto in my case. I was in a much more positive frame of mind when I did my Allo.
Good luck with your future treatment. I was fortunate - I had a Molecular response to my Allo, so we are not planning on treating at this point. I am 9 months out from my Allo and I too feel better than I have at any time since diagnosis. It is great to get a break from the Poison! I feel so lucky that I had a progressive thinking Doctor - the others I got opinions from discussed the "same old, same old" treatments like Tandem Autos, long term Maintenance programs, etc. Your Brother is a great person to donate. I actually used a Matched Unrelated Donor. Anyone reading this should encourage anyone they know to contact the Be the Match registry - marrow.org on the web. Anyone reading here knows that a healthy donor provides something medical science cannot currently offer - a potential cure to this disease. Those Donors are truly exceptional people and real heroes.
Mark
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Mark
Re: return of m-spike
Wow I am reading all the bad experiances with stem cell. I had an autologus stem cell and did great. I went through the heavey chemo for 2 days. I was inpatient for 4 weeks 1 week out patient and went home. I ran 5 miles the next day. I am not bragging but i am not sure why all the issues. I went home on Revlimid maintenance med by mouth.
I have more stem cells stored to get another if needed. My blood work is fine and has been I am getting PET scan in March. I get 24 hour urine and they take about 10 viles of blood.
So now i need to ask what M-spike is. I will post my blood work on here. maybe i am missing something.
1/10/2012 Absolute Neutrophil - Outside Result Test Results: 1.6 K/uL -
1/10/2012 Hematocrit - Outside Result Test Results: 39.9 Percent (%) -
1/10/2012 Hemoglobin - Outside Result Test Results: 14 g/dL -
1/10/2012 Platelet Count - Outside Result Test Results: 102 K/uL -
1/10/2012 WBC - Outside Result Test Results: 4.1 K/uL -
1/10/2012 Albumin - Outside Result Test Results: 4.2 g/dL -
1/10/2012 Alkaline Phosphatase - Outside Result Test Results: 47 Units/L -
1/10/2012 ALT (SGPT) - Outside Result Test Results: 21 Units/L -
1/10/2012 AST (SGOT) - Outside Result Test Results: 29 Units/L -
1/10/2012 BUN - Outside Result Test Results: 18 mg/dL -
1/10/2012 Calcium - Outside Result Test Results: 8.7 -
1/10/2012 Chloride - Outside Result Test Results: 103 mmol/L -
1/10/2012 CO2 - Outside Result Test Results:24 mmol/L -
1/10/2012 Creatinine - Outside Result Test Results: 0.85 mg/dL -
1/10/2012 Glucose - Outside Result Test Results:96 mg/dL -
1/10/2012 Potassium - Outside Result Test Results: 3.9 mmol/L -
1/10/2012 Sodium - Outside Result Test Results: 139 mmol/L -
1/10/2012 Total Bilirubin - Outside Result Test Results: 0.6 mg/dL
12/12/2011 Urine Kappa/Lambda Light Chains Ratio Test Results: 12.80 -
12/12/2011 Urine Kappa Light Chains Test Results: 7.17 -
12/12/2011 Urine Lambda Light Chains Test Results: 0.56
I have more stem cells stored to get another if needed. My blood work is fine and has been I am getting PET scan in March. I get 24 hour urine and they take about 10 viles of blood.
So now i need to ask what M-spike is. I will post my blood work on here. maybe i am missing something.
1/10/2012 Absolute Neutrophil - Outside Result Test Results: 1.6 K/uL -
1/10/2012 Hematocrit - Outside Result Test Results: 39.9 Percent (%) -
1/10/2012 Hemoglobin - Outside Result Test Results: 14 g/dL -
1/10/2012 Platelet Count - Outside Result Test Results: 102 K/uL -
1/10/2012 WBC - Outside Result Test Results: 4.1 K/uL -
1/10/2012 Albumin - Outside Result Test Results: 4.2 g/dL -
1/10/2012 Alkaline Phosphatase - Outside Result Test Results: 47 Units/L -
1/10/2012 ALT (SGPT) - Outside Result Test Results: 21 Units/L -
1/10/2012 AST (SGOT) - Outside Result Test Results: 29 Units/L -
1/10/2012 BUN - Outside Result Test Results: 18 mg/dL -
1/10/2012 Calcium - Outside Result Test Results: 8.7 -
1/10/2012 Chloride - Outside Result Test Results: 103 mmol/L -
1/10/2012 CO2 - Outside Result Test Results:24 mmol/L -
1/10/2012 Creatinine - Outside Result Test Results: 0.85 mg/dL -
1/10/2012 Glucose - Outside Result Test Results:96 mg/dL -
1/10/2012 Potassium - Outside Result Test Results: 3.9 mmol/L -
1/10/2012 Sodium - Outside Result Test Results: 139 mmol/L -
1/10/2012 Total Bilirubin - Outside Result Test Results: 0.6 mg/dL
12/12/2011 Urine Kappa/Lambda Light Chains Ratio Test Results: 12.80 -
12/12/2011 Urine Kappa Light Chains Test Results: 7.17 -
12/12/2011 Urine Lambda Light Chains Test Results: 0.56
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greg matthews - Name: Greg Matthews
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 12-28-2010
- Age at diagnosis: 48
Re: return of m-spike
Greg
Look for SPEP on blood work results...that is M spike
Look for SPEP on blood work results...that is M spike
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: return of m-spike
Rajkumar on ASCT:
"Our approach at Mayo Clinic follows a risk-adapted strategy (as described on the website msmart.org). In standard-risk patients (~75% of myeloma cases), the timing of ASCT (early vs delayed) is guided by patient choice (and other factors). This requires that stem cells be collected and cryopreserved early in the disease course. Many patients wish to have a choice of early vs delayed ASCT based on their life situation. They need to know that there are no data on overall survival to support one approach over the other. My rough estimate is that approximately 50% of eligible patients in the United States are currently deciding to adopt a delayed ASCT strategy.
For intermediate-risk patients (~10% of those with myeloma, characterized primarily by the t[4;14] translocation), induction with bortezomib-based regimen, early ASCT, and routine bortezomib (Velcade)-based maintenance is our preference and is supported by data from the Arkansas group. I am ambivalent about the role of ASCT in high-risk patients (~15% of myeloma cases defined either by gene expression profiling or the presence of t[14;16], t[14;20], or 17p-). High-risk patients appear to have a median survival of 2 to 3 years despite tandem ASCT. Our preference is that these patients are treated on clinical trials as much as possible. Selected high-risk patients may wish to consider allogeneic approaches."
"Our approach at Mayo Clinic follows a risk-adapted strategy (as described on the website msmart.org). In standard-risk patients (~75% of myeloma cases), the timing of ASCT (early vs delayed) is guided by patient choice (and other factors). This requires that stem cells be collected and cryopreserved early in the disease course. Many patients wish to have a choice of early vs delayed ASCT based on their life situation. They need to know that there are no data on overall survival to support one approach over the other. My rough estimate is that approximately 50% of eligible patients in the United States are currently deciding to adopt a delayed ASCT strategy.
For intermediate-risk patients (~10% of those with myeloma, characterized primarily by the t[4;14] translocation), induction with bortezomib-based regimen, early ASCT, and routine bortezomib (Velcade)-based maintenance is our preference and is supported by data from the Arkansas group. I am ambivalent about the role of ASCT in high-risk patients (~15% of myeloma cases defined either by gene expression profiling or the presence of t[14;16], t[14;20], or 17p-). High-risk patients appear to have a median survival of 2 to 3 years despite tandem ASCT. Our preference is that these patients are treated on clinical trials as much as possible. Selected high-risk patients may wish to consider allogeneic approaches."
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: return of m-spike
Greg,
Hopefully I'm not stating something you're already familiar with, but here's an excerpt from a short article I wrote for my personal webpage to explain M-Spike to family and friends reading my webpage..
... M-Spike is a term used to categorize the level of M-Proteins in the patient's blood, because the test shows up as a spike in the immunoglobulin levels.
M-Protein tests are performed using one of two methods, serum protein electrophoresis (SPE), or immunofixation electrophoresis (IFIX). Both produce similar results, but the immunofixation test is a bit more accurate, though as I understand it, more expensive, so they typically use the SPE first and when that no longer shows an M-Spike, they'll do the IFIX.
Electrophoresis is performed by depositing blood serum on a specially treated surface and exposing it to an electric current. Because proteins in blood have different sizes and electrical characteristics, the electrical charge separates the serum blood proteins into one of five regions:
1. serum albumin
2. alpha-1 globulins
3. alpha-2 globulins
4. beta globulins
5. gamma globulins
The immunoglobulins (IgA, IgD, IgE, IgG and IgM) are the only proteins that separate into the gamma region. If the gamma region shows an increase (or spike), further analysis is performed to determine the cause. A narrow spike is representative of a monoclonal gammopathy (i.e., abnormal immunoglobulin production) of a single protein - such as the M-Proteins associated with multiple myeloma. A proportional increase of all immunoglobulins is a polyclonal gammopathy. A low wide "mound" represents a normal pattern or distribution. ...
On lab results, I've seen the serum electrophoresis test labeled as SPE, SPEP, or TPE. Values are typically specified in grams per deciliter (e.g., 2.7 g/dL).
Hopefully I'm not stating something you're already familiar with, but here's an excerpt from a short article I wrote for my personal webpage to explain M-Spike to family and friends reading my webpage..
... M-Spike is a term used to categorize the level of M-Proteins in the patient's blood, because the test shows up as a spike in the immunoglobulin levels.
M-Protein tests are performed using one of two methods, serum protein electrophoresis (SPE), or immunofixation electrophoresis (IFIX). Both produce similar results, but the immunofixation test is a bit more accurate, though as I understand it, more expensive, so they typically use the SPE first and when that no longer shows an M-Spike, they'll do the IFIX.
Electrophoresis is performed by depositing blood serum on a specially treated surface and exposing it to an electric current. Because proteins in blood have different sizes and electrical characteristics, the electrical charge separates the serum blood proteins into one of five regions:
1. serum albumin
2. alpha-1 globulins
3. alpha-2 globulins
4. beta globulins
5. gamma globulins
The immunoglobulins (IgA, IgD, IgE, IgG and IgM) are the only proteins that separate into the gamma region. If the gamma region shows an increase (or spike), further analysis is performed to determine the cause. A narrow spike is representative of a monoclonal gammopathy (i.e., abnormal immunoglobulin production) of a single protein - such as the M-Proteins associated with multiple myeloma. A proportional increase of all immunoglobulins is a polyclonal gammopathy. A low wide "mound" represents a normal pattern or distribution. ...
On lab results, I've seen the serum electrophoresis test labeled as SPE, SPEP, or TPE. Values are typically specified in grams per deciliter (e.g., 2.7 g/dL).
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Kevin J - Name: Kevin J
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Jan 2011
- Age at diagnosis: 52
Re: return of m-spike
I just spent the last ten minutes reading through all of this insightful information. Amazing! Like I always say "If you want to really know what's going on, ask a patient!"
I have interviewed hundreds of auto and allo transplant patients. Sometimes it works, sometimes not. Leukemia and lymphoma patients often go into the process with the hope of a cure. I don't know a single myeloma patient who has lived myeloma free for longer than ten or twelve years following either an auto or allo transplant. There may be some--but I haven't found them yet--and they are certainly anomalies
But hey--that's two times longer than stats say a myeloma patient should even live. An auto transplant is an excellent option for Richard. Hopefully he will emerge on the other side of the process myeloma free. And if he does, I think he should skip maintenance and enjoy years of drug free life--and then worry about drug combos later, when more are available.
What a great group! Richard, these people understand what you're going through. So many people in this world don't have that. Best of luck Richard! You will know what's right for you when the time comes...
I have interviewed hundreds of auto and allo transplant patients. Sometimes it works, sometimes not. Leukemia and lymphoma patients often go into the process with the hope of a cure. I don't know a single myeloma patient who has lived myeloma free for longer than ten or twelve years following either an auto or allo transplant. There may be some--but I haven't found them yet--and they are certainly anomalies
But hey--that's two times longer than stats say a myeloma patient should even live. An auto transplant is an excellent option for Richard. Hopefully he will emerge on the other side of the process myeloma free. And if he does, I think he should skip maintenance and enjoy years of drug free life--and then worry about drug combos later, when more are available.
What a great group! Richard, these people understand what you're going through. So many people in this world don't have that. Best of luck Richard! You will know what's right for you when the time comes...
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Pat Killingsworth - Name: Pat Killingsworth
- Who do you know with myeloma?: I am a multiple myeloma patient
- When were you/they diagnosed?: April, 2007
- Age at diagnosis: 51
Re: return of m-spike
Thanks Kevin on the info very helpful, i am aking questions now. Also Pat I did the autologus Transplant. I have really thought hard about going off Revlimid maintenance medicine. They also have me on bacctrum for my lungs to protect them. I never had issues with my lungs. Also on acyclevere, this is to protect me from shingles. Also Bone strength med. I have thought deeply and still some what torn on what to do. In march i am going back for a 3 month check up and pet scan. Talk to them about going off everything. Also i am not gett new vacsination shots again.
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greg matthews - Name: Greg Matthews
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 12-28-2010
- Age at diagnosis: 48
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