Hi dee777,
You mentioned somewhere earlier that you had four months of treatment with Revlimid. Did you also take dexamethasone during that treatment?
Forums
Re: High risk myeloma? If so, please share your story.
I started a new thread on diet and dairy, which I think is a great topic...didn't want to disrupt the flow on Lizzie's discussion on high-risk treatments/stories.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: High risk myeloma? If so, please share your story.
Does anyone know how to get in touch w/ Mark, who has posted on this thread? I'd like to ask him about his allo transplant. Thank you!
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Lizzie - Name: Lizzie
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 43
Re: High risk myeloma? If so, please share your story.
I tried to get in touch with him as well, but I have no clue how to on this forum
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Guest1
Re: High risk myeloma? If so, please share your story.
Mark posts to the forum as a guest. Because he posts as a guest, there is no way to send him either an email or a private message via the forum.
The forum's search functionality doesn't work, unfortunately, with the names that people use when they post as a guest. However, you can find many of Mark's postings here in the forum through a Google search, such as this one:
http://www.google.com/search?q=mark+allo+site%3Amyelomabeacon.com%2Fforum
The forum's search functionality doesn't work, unfortunately, with the names that people use when they post as a guest. However, you can find many of Mark's postings here in the forum through a Google search, such as this one:
http://www.google.com/search?q=mark+allo+site%3Amyelomabeacon.com%2Fforum
Re: High risk myeloma? If so, please share your story.
Terry, I did not take Dex. After diagnosis I was drug free for about 4 months and went on a vegan diet. It caused my cancer to progress. I then realized thru research multiple myeloma patients need to be on a carnivore diet as we are too alkaline, and I was making my body more alkaline eating vegan. I had to have 3 blood transfusions from the lack of iron, vit. B12 and cancer progression. I found an oncologist who put me on the 10 mg of Rev. and it stabilized me but didn't do much. I canceled my appointments in late Aug.
I then went to NY and started seeing a Naturopath doctor the middle of October. Since then I have been taking pancreatic enzymes, eating a high animal fat and animal protein diet, red meat twice a day, many supplements, and I have continued to improve.
With 1;14 translocation, and 13 deletion I would not have had much time on the chemos. The fact that I am improving with no drugs is amazing in it self. I should be getting worse. I am optimistic about the future and plan to die at age 100 from hiking 30 more miles then I should have the day before.
I then went to NY and started seeing a Naturopath doctor the middle of October. Since then I have been taking pancreatic enzymes, eating a high animal fat and animal protein diet, red meat twice a day, many supplements, and I have continued to improve.
With 1;14 translocation, and 13 deletion I would not have had much time on the chemos. The fact that I am improving with no drugs is amazing in it self. I should be getting worse. I am optimistic about the future and plan to die at age 100 from hiking 30 more miles then I should have the day before.
Re: High risk myeloma? If so, please share your story.
If you are +1q, you might want to take heed of this article and question the use of Velcade with your doc if you are on it or considering it.
https://myelomabeacon.org/resources/mtgs/ash2013/abs/1992/
The key takeaway is:
Gains of 1q21 had no impact on survival in patients receiving thalidomide-based treatment but conferred a significantly inferior prognosis in patients under bortezomib-based chemotherapy and was an independent adverse prognostic factor for progression free survival (HR 3.831; 95%CI: 2.125–6.XXXX; P<0.001) and overall survival (HR 3.245; 95%CI: 1.555–6.773; P=0.002).
https://myelomabeacon.org/resources/mtgs/ash2013/abs/1992/
The key takeaway is:
Gains of 1q21 had no impact on survival in patients receiving thalidomide-based treatment but conferred a significantly inferior prognosis in patients under bortezomib-based chemotherapy and was an independent adverse prognostic factor for progression free survival (HR 3.831; 95%CI: 2.125–6.XXXX; P<0.001) and overall survival (HR 3.245; 95%CI: 1.555–6.773; P=0.002).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: High risk myeloma? If so, please share your story.
Hi Lizzie! Do you mean high-risk SMM? or high-risk myeloma? I just posted about high-risk SMM and am looking to share the journey with someone in my situation.
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: High risk myeloma? If so, please share your story.
Hi Lizzie,
I will try and answer your question about what a molecular response/remission is. After you complete a line of therapy (induction, consolidation, etc) your doctor may run a series of tests on you to assess you responded the therapy. Based on the reduction (hopefully!) of the myeloma they say you had a certain response to the therapy. The International Myeloma Working Group (IMWG) does not recognize a "molecular response" as a standardized response to therapy. Here is a link to the responses that are the standards for myeloma.
http://bloodjournal.hematologylibrary.org/content/117/18/4691.full.pdf
The tests that determine if a patient had a complete response or a stringent complete response are not considered very sensitive for detecting MRD (minimal residual disease). The reason for that is that few myeloma patients outside of allo transplant could get to MRD negative status prior to the novel agents so there was little need to test most patients using the more sensitive tests. PCR actually stands for polymerase chain reaction. The important point is that the PCR test is considered the most sensitive test to for MRD but it is expensive, time consuming and has to be set up for each individual patient. Here are a couple of paragraphs from a paper written by well known myeloma experts Dr. Nikhil Munshi and Dr. Kenneth Anderson of Dana Farber that discuss this.
"Along with these improvements in therapeutic strategy, the definition of CR has evolved over time. Studies 30 years ago, before the advent of transplantation, defined CR as greater than 75% reduction in myeloma paraprotein, which was achieved in only a small fraction of patients. With high-dose therapy significant cytoreduction was achieved, and the definition of CR evolved to include not only disappearance of clonal plasma cells in bone marrow, but also absence of paraprotein in urine and serum by immunofixation, which was achieved in up to 30% patients. Stringent CR, as more recently defined by the International Myeloma Workshop,8 includes these parameters along with a normal kappa:lambda free light chain ratio. However, the fact that all patients achieving CR, as defined in this way, go on to experience relapse suggests that clinically meaningful residual disease is not detectable by these parameters. Molecular complete responses (mCR), defined as absence of detectable disease by polymerase chain reaction for Ig gene rearrangement, was until recently observed only in a fraction of patients undergoing allogeneic transplantation and was associated with prolonged PFS and OS.9,10 These allogeneic transplantation studies suggested the clinical importance of achieving mCR, but this extent of response was not achievable in the autologous setting."
"The incorporation of novel therapies into the initial management of newly diagnosed myeloma has transformed therapy, with increased frequency and extent of response. It was therefore necessary to develop reproducible sensitive assays for detecting and monitoring minimal residual disease (MRD) and to define its prognostic value in predicting for PFS and OS, to allow for informing consolidation and maintenance strategies, and to evaluate the comparative efficacy of novel therapies. These methods include allele-specific oligonucleotide PCR (ASO-PCR) capable of detecting up to one clonal cell in 105 normal cells and immunophenotypic assays detecting one clonal cell in 104 normal cells by use of ≥ seven-color multiparameter flow cytometry (MPF)11–13 Although the ASO-PCR method may provide greater sensitivity, it remains a difficult assay to be performed, as it requires the generation of patient-specific primers. The advantages of MPF include the ready ability to perform the assay, as well as short turnaround time. In MPF, quantitating residual myeloma cells requires sophisticated analysis but is automated to promptly obtain objective results."
http://jco.ascopubs.org/content/31/20/2523.short?rss=1
The way things seem to be moving is that the standard test for MRD will be the slightly less sensitive flow cytometry test. They usually use the term "Immunophenotypic Response" if a patient is negative for MRD via flow cytometry.
I will try to answer any questions I can with respect to allo transplant. The Beacon Staff made a great suggestion to search for my older posts. You will notice I post a lot of links to peer reviewed studies. The reason I do that is so that patients that are considering the therapy can read the study/paper and decide if the therapy is something they would consider. Remember that most myeloma doctors are not allo transplant experts. If you are considering one you need an opinion from an expert in allo transplant, not just a myeloma specialist that only uses drugs and autos and does not make use of immunotherapy. I would prefer writing the answers here so that more patients could read my response as it may be helpful to them.
Every patient has a different risk tolerance and goal of therapy. My goal of therapy was to have a long term drug free remission with an excellent quality of life. All of the research I did in 2010 after my diagnosis suggested to me that allo transplant in first complete response (CR1) was the only way a high risk patient could do that in 2010. I would point out that all 3 myeloma specialists I met with agreed that an allo in CR1 could accomplish that, though only 2 of the 3 recommended the allo in CR1. "Mission accomplished" with respect to the excellent QOL part - it remains to be seen if I get the long term drug free remission I am looking for.
Mark
I will try and answer your question about what a molecular response/remission is. After you complete a line of therapy (induction, consolidation, etc) your doctor may run a series of tests on you to assess you responded the therapy. Based on the reduction (hopefully!) of the myeloma they say you had a certain response to the therapy. The International Myeloma Working Group (IMWG) does not recognize a "molecular response" as a standardized response to therapy. Here is a link to the responses that are the standards for myeloma.
http://bloodjournal.hematologylibrary.org/content/117/18/4691.full.pdf
The tests that determine if a patient had a complete response or a stringent complete response are not considered very sensitive for detecting MRD (minimal residual disease). The reason for that is that few myeloma patients outside of allo transplant could get to MRD negative status prior to the novel agents so there was little need to test most patients using the more sensitive tests. PCR actually stands for polymerase chain reaction. The important point is that the PCR test is considered the most sensitive test to for MRD but it is expensive, time consuming and has to be set up for each individual patient. Here are a couple of paragraphs from a paper written by well known myeloma experts Dr. Nikhil Munshi and Dr. Kenneth Anderson of Dana Farber that discuss this.
"Along with these improvements in therapeutic strategy, the definition of CR has evolved over time. Studies 30 years ago, before the advent of transplantation, defined CR as greater than 75% reduction in myeloma paraprotein, which was achieved in only a small fraction of patients. With high-dose therapy significant cytoreduction was achieved, and the definition of CR evolved to include not only disappearance of clonal plasma cells in bone marrow, but also absence of paraprotein in urine and serum by immunofixation, which was achieved in up to 30% patients. Stringent CR, as more recently defined by the International Myeloma Workshop,8 includes these parameters along with a normal kappa:lambda free light chain ratio. However, the fact that all patients achieving CR, as defined in this way, go on to experience relapse suggests that clinically meaningful residual disease is not detectable by these parameters. Molecular complete responses (mCR), defined as absence of detectable disease by polymerase chain reaction for Ig gene rearrangement, was until recently observed only in a fraction of patients undergoing allogeneic transplantation and was associated with prolonged PFS and OS.9,10 These allogeneic transplantation studies suggested the clinical importance of achieving mCR, but this extent of response was not achievable in the autologous setting."
"The incorporation of novel therapies into the initial management of newly diagnosed myeloma has transformed therapy, with increased frequency and extent of response. It was therefore necessary to develop reproducible sensitive assays for detecting and monitoring minimal residual disease (MRD) and to define its prognostic value in predicting for PFS and OS, to allow for informing consolidation and maintenance strategies, and to evaluate the comparative efficacy of novel therapies. These methods include allele-specific oligonucleotide PCR (ASO-PCR) capable of detecting up to one clonal cell in 105 normal cells and immunophenotypic assays detecting one clonal cell in 104 normal cells by use of ≥ seven-color multiparameter flow cytometry (MPF)11–13 Although the ASO-PCR method may provide greater sensitivity, it remains a difficult assay to be performed, as it requires the generation of patient-specific primers. The advantages of MPF include the ready ability to perform the assay, as well as short turnaround time. In MPF, quantitating residual myeloma cells requires sophisticated analysis but is automated to promptly obtain objective results."
http://jco.ascopubs.org/content/31/20/2523.short?rss=1
The way things seem to be moving is that the standard test for MRD will be the slightly less sensitive flow cytometry test. They usually use the term "Immunophenotypic Response" if a patient is negative for MRD via flow cytometry.
I will try to answer any questions I can with respect to allo transplant. The Beacon Staff made a great suggestion to search for my older posts. You will notice I post a lot of links to peer reviewed studies. The reason I do that is so that patients that are considering the therapy can read the study/paper and decide if the therapy is something they would consider. Remember that most myeloma doctors are not allo transplant experts. If you are considering one you need an opinion from an expert in allo transplant, not just a myeloma specialist that only uses drugs and autos and does not make use of immunotherapy. I would prefer writing the answers here so that more patients could read my response as it may be helpful to them.
Every patient has a different risk tolerance and goal of therapy. My goal of therapy was to have a long term drug free remission with an excellent quality of life. All of the research I did in 2010 after my diagnosis suggested to me that allo transplant in first complete response (CR1) was the only way a high risk patient could do that in 2010. I would point out that all 3 myeloma specialists I met with agreed that an allo in CR1 could accomplish that, though only 2 of the 3 recommended the allo in CR1. "Mission accomplished" with respect to the excellent QOL part - it remains to be seen if I get the long term drug free remission I am looking for.
Mark
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Mark
Re: High risk myeloma? If so, please share your story
Thanks Mark for your explanation on complete response and MRD.
I have my first bone marrow biopsy since my allo transplant coming up in March. My doctors have told me that I am in sCR. I have asked my transplant doctor and my oncologist about testing for MRD using the more sensitive tests. Their response has me puzzled. They told me that if they found, say 1 myeloma cell in a million, they at this point do not have the clinical information as how to proceed. Do they treat and risk unnecessary treatment for those few cells that may or may not develop into full blown myeloma or do they watch and wait. They don't want to blunt the GVT effect. They feel that knowing that there are a few residual cells would cause unnecessary stress to the patient.
What is your take on this as a high risk patient post transplant?
Susan
I have my first bone marrow biopsy since my allo transplant coming up in March. My doctors have told me that I am in sCR. I have asked my transplant doctor and my oncologist about testing for MRD using the more sensitive tests. Their response has me puzzled. They told me that if they found, say 1 myeloma cell in a million, they at this point do not have the clinical information as how to proceed. Do they treat and risk unnecessary treatment for those few cells that may or may not develop into full blown myeloma or do they watch and wait. They don't want to blunt the GVT effect. They feel that knowing that there are a few residual cells would cause unnecessary stress to the patient.
What is your take on this as a high risk patient post transplant?
Susan
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SVBriggs
37 posts
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