Bone Marrow Biopsy is back! I skipped my last round of chemo because my M spike dropped from 8.9 to 0.1. I was at 80% cancer cells in the marrow when diagnosed 8/4/11. My Bone marrow biopsy now shows 2%. Freakin AWESOME! I kick ass!
-Chris
Forums
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
laetetia wrote:
> I'm a bit confused as to why you would still need to undergo a SCT if your
> M spike has dropped to .01. I guess it would be a good idea to collect the
> stem cells while the M spike is so low in case of need for future use but
> we were told in Australia that we didn't have any worries about having to
> consider more treatments until the paraprotein level was over 10. My
> partner is nowat 15.2 and just started the Velcade. He has enough cells
> harvested for a second SCT but its not something that will be done while
> his levels can be dropped with medication and by natural means. We
> actually had quite a bit of success with Vitamin B12 too. He takes a 1000
> mg tablet twice a day.
Not sure if you made a typo or misread, my M-spike is now at .1 not .01.
Most studies show it's better to do SCT after first round due to Revlimid's damage to stem cells. I think that is what is driving us towards an SCT at this point. Would it not be recommended?
-Chris
> I'm a bit confused as to why you would still need to undergo a SCT if your
> M spike has dropped to .01. I guess it would be a good idea to collect the
> stem cells while the M spike is so low in case of need for future use but
> we were told in Australia that we didn't have any worries about having to
> consider more treatments until the paraprotein level was over 10. My
> partner is nowat 15.2 and just started the Velcade. He has enough cells
> harvested for a second SCT but its not something that will be done while
> his levels can be dropped with medication and by natural means. We
> actually had quite a bit of success with Vitamin B12 too. He takes a 1000
> mg tablet twice a day.
Not sure if you made a typo or misread, my M-spike is now at .1 not .01.
Most studies show it's better to do SCT after first round due to Revlimid's damage to stem cells. I think that is what is driving us towards an SCT at this point. Would it not be recommended?
-Chris
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
suzierose wrote:
> ....
> What a great response! You are on a 14 day cycle vs. 21 day cycle? How
> did your physician decide to use 14 day vs 21 day. Are you in a clinical
> trial exploring this dosage regimen? This is wonderful news, shorter
> therapy with a great outcome.
==> 21 day cycle, 2 weeks on 1 week off.
> I was wondering like Latetia, is your doctor recommending a BSCT despite
> your great M spike after 5 cycles?
==> Yes, due to continued use of rRvlimid harming stem cells if I to have a relapse and have to go thru chemo again.
> What factors are driving his decision is it serum or other bone marrow
> results ? e.g. FISH results, light chain assay ratios, immunophenotyping,
> depth of response ,positive immunofixation, or aggressiveness of the tumor
> given how you initially wrote:
>
> "80% cancer in the marrow, 8.9 M-Spike. Luckily I have no bone
> involvement and no kidney issues. "
==> The only driving force is the information available that says it is best to do it after 1 or 2 chemo treatments. And there is a possibility that response to SCT is worse as you progress thru more replapses.
> You mentioned you have no bone involvement, did they ever determine what
> your initial rib pain was due to?
==> Oncologists says it was due to bone expansion due to the high percentage (80%) in the initial biopsy.
> Or if you are in a clinical trial is the BSCT part of the protocol?
==> No, I am not in any trails.
> ....
> What a great response! You are on a 14 day cycle vs. 21 day cycle? How
> did your physician decide to use 14 day vs 21 day. Are you in a clinical
> trial exploring this dosage regimen? This is wonderful news, shorter
> therapy with a great outcome.
==> 21 day cycle, 2 weeks on 1 week off.
> I was wondering like Latetia, is your doctor recommending a BSCT despite
> your great M spike after 5 cycles?
==> Yes, due to continued use of rRvlimid harming stem cells if I to have a relapse and have to go thru chemo again.
> What factors are driving his decision is it serum or other bone marrow
> results ? e.g. FISH results, light chain assay ratios, immunophenotyping,
> depth of response ,positive immunofixation, or aggressiveness of the tumor
> given how you initially wrote:
>
> "80% cancer in the marrow, 8.9 M-Spike. Luckily I have no bone
> involvement and no kidney issues. "
==> The only driving force is the information available that says it is best to do it after 1 or 2 chemo treatments. And there is a possibility that response to SCT is worse as you progress thru more replapses.
> You mentioned you have no bone involvement, did they ever determine what
> your initial rib pain was due to?
==> Oncologists says it was due to bone expansion due to the high percentage (80%) in the initial biopsy.
> Or if you are in a clinical trial is the BSCT part of the protocol?
==> No, I am not in any trails.
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
You GO Ninja!!
Kick butt!!
Awesome news!!
Kick butt!!
Awesome news!!
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
So, with an M-Spike of 0.1 and marrow at 2%, should I be thinking about not getting the SCT?
-Chris
-Chris
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
Hi Chris!
Were you posing that query to me?
If so, I honestly do not know.
I am flummoxed by the data while it shows that there is longer PFS in patients that undergo SCT with conventional chemo, they also show that OS is not better than with new 'novel agents'
So, it is difficult to make a decision on clinical evidence.
Additionally, there are the caveats based on cytogenetics which basically rule out SCT as it is so grueling with poor outcomes for those with TP53/del 17p, 13q gain..etc.
http://www.nature.com/bmt/journal/v36/n9/full/1705131a.html
I think one of the multiple myeloma experts may be able to give better insight as to the risks/benefits of SCT with your present labs.
I get the sense that as long as the multiple myeloma is not progressing using the new novel agents, it is OK to delay SCT. But that is a highly individualistic decision.
Is your doctor recommending BSCT now or harvesting your stem cells now, prior to more Revlimid therapy?
One thing for sure is that you can always harvest your stem cells, as it seems you are at a minimal residual disease stage at this point, and then they will be there for you if your multiple myeloma should begin to progress again, if you decide to delay SCT.
Were you posing that query to me?
If so, I honestly do not know.
I am flummoxed by the data while it shows that there is longer PFS in patients that undergo SCT with conventional chemo, they also show that OS is not better than with new 'novel agents'
So, it is difficult to make a decision on clinical evidence.
Additionally, there are the caveats based on cytogenetics which basically rule out SCT as it is so grueling with poor outcomes for those with TP53/del 17p, 13q gain..etc.
http://www.nature.com/bmt/journal/v36/n9/full/1705131a.html
I think one of the multiple myeloma experts may be able to give better insight as to the risks/benefits of SCT with your present labs.
I get the sense that as long as the multiple myeloma is not progressing using the new novel agents, it is OK to delay SCT. But that is a highly individualistic decision.
Is your doctor recommending BSCT now or harvesting your stem cells now, prior to more Revlimid therapy?
One thing for sure is that you can always harvest your stem cells, as it seems you are at a minimal residual disease stage at this point, and then they will be there for you if your multiple myeloma should begin to progress again, if you decide to delay SCT.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
Chris,
Awesome news on the great response you are getting. I was diagnosed last year and I am in my early 40's. One of the big problems patients like you and I have is that so much of the treatment/research in multiple myeloma is geared toward older patients. I am surprised when I see multiple myeloma Doctors treating patients in their 40's and 60's in a similar manner.
Suzierose made some great points (as usual) in her response. Each patient needs to make a treatment decision they are comfortable with. You are the one that has to live with the side effects, etc. of your therapy choices. Maybe you could check and see if there are any Clinical Trials in your area that involve newer therapies. If you decide to do an Auto, I think you should consider a clinical trial that adds another type of therapy or new drug into it. The "old standy" for an Auto (Melphalan mg/m 2) with its average 20 some months of remission is one area of multiple myeloma therapy that really needs to be improved upon.
Best of luck. All this new research means you and I are going to be around a LONG time.
Mark
Awesome news on the great response you are getting. I was diagnosed last year and I am in my early 40's. One of the big problems patients like you and I have is that so much of the treatment/research in multiple myeloma is geared toward older patients. I am surprised when I see multiple myeloma Doctors treating patients in their 40's and 60's in a similar manner.
Suzierose made some great points (as usual) in her response. Each patient needs to make a treatment decision they are comfortable with. You are the one that has to live with the side effects, etc. of your therapy choices. Maybe you could check and see if there are any Clinical Trials in your area that involve newer therapies. If you decide to do an Auto, I think you should consider a clinical trial that adds another type of therapy or new drug into it. The "old standy" for an Auto (Melphalan mg/m 2) with its average 20 some months of remission is one area of multiple myeloma therapy that really needs to be improved upon.
Best of luck. All this new research means you and I are going to be around a LONG time.
Mark
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Mark
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
I am glad to here that your induction has been so successful with a Very Good Partial Response (>90% reduction in the disease). A number of questions were posed in this last post. I think that the one that is most relevant to your current situation is: Should you undergo transplant or not?
For all my patients (young to more mature and a transplant candidate) I recommend induction therapy with the goal of acheiving at least a VGPR and considering high dose therapy (HDT) with autologous stem cell transplant (ASCT) at that time.
The prevailing data/dogma states that the success of transplant -- measured using either progression free survival (PFS) or overall survival (OS) -- is equal whether you undergo HDT-ASCT at first response (you currently) or at second response (so responding after you have relapsed the first time). The caveat, however, is that you respond as well after relapse.
There are data that suggest that response before transplant and response after transplant are important predictors of longer PFS and OS. VGPR and better equate to longer PFS and OS. So, I tend to recommend HDT-ASCT upfront. However, this remains patient preference dependent.
Regarding the novel agents therapy (Revlimid- and Velcade-containing regimens) vs HDT-ASCT ... We all have to be careful about using response to therapy and making direct correlations with PFS or OS. The novel agents have changed our ability to control disease without HDT-ASCT. For the first time novel agents allow us to acheive VGPRs and CRs at rates as good if not better then HDT-ASCT in cases of multi-agent combinations. But the question of whether novel therapies can take the place of HDT-ASCT has not yet been answered. There are a number of studies in the US, Europe, and the rest of the world going on to answer this question. However, my feeling is that the strides made in disease modification requires the combination of both. And some of the preliminary data in these studies support this hypothesis. To this end, HDT-ASCT will improve your response following induction therapy.
Another comment that was brought up is that of allogeneic vs autologous transplant. This remains an interesting topic. With allo (using a matched related or unrelated stem cell donor) there is the potential for lasting control of the disease, with the new immune system recognizing the disease as foreign and controlling or eradicating it. This is something that should be considered only under a clinical trial and only in appropriate candidates. I recommend that patients under 60 give this option some thought. However, it is not for everyone.
On the subject of 1 vs. 2 stem cell transplants ... In the US, a single transplant is in order unless the response is sub-optimal (<Partial response with HDT-ASCT), in which case a tandem transplant may be utilized, or based on doctor-patient discussions.
A comment about clinical trials in HDT-ASCT ... As a myeloma physician, I am always in favor of my patients enrolling in clinical trials. At the same time, I recognize that it does not always work out for patients in terms of availability, drive times, etc due to the extra lab work and the need to be treated at the academic center / trial site.
On the subject of maintenance therapy ... Although it is not a "new concept," the success and tolerability of Revlimid maintenance have made it very attractive after transplant. It has been shown to prolong progression free survival in two large studies, but there is an overall survival benefit in only one of the studies.
Maintenance also has inherent risks. You are taking a pill -- a chemo pill -- everyday that may affect you immune competence, your energy, and may (not confirmed) increase your risk for second primary malignancies. These are all important issues for all patients, and lately even more so for individuals with a longer life expectancy.
To this end, I recommend maintenance to patients with residual disease after transplant or high risk disease (based on cytogenetics, FISH, MyPRS, etc.).
One also has to remember that studies have demonstrated that populations (up to 25% of patients in some retrospective studies) of folks treated and transplanted prior to novel agents can have overall survival of greater than 10 years without maintenance.
I have touched on some of the important questions that you face with the next lines of therapy. Congratulations on meeting your first hurdle with great success. We wish continued success.
To state again- participation in clinical trials is how we have acheived what we have to date.
Happy Thanksgiving.
For all my patients (young to more mature and a transplant candidate) I recommend induction therapy with the goal of acheiving at least a VGPR and considering high dose therapy (HDT) with autologous stem cell transplant (ASCT) at that time.
The prevailing data/dogma states that the success of transplant -- measured using either progression free survival (PFS) or overall survival (OS) -- is equal whether you undergo HDT-ASCT at first response (you currently) or at second response (so responding after you have relapsed the first time). The caveat, however, is that you respond as well after relapse.
There are data that suggest that response before transplant and response after transplant are important predictors of longer PFS and OS. VGPR and better equate to longer PFS and OS. So, I tend to recommend HDT-ASCT upfront. However, this remains patient preference dependent.
Regarding the novel agents therapy (Revlimid- and Velcade-containing regimens) vs HDT-ASCT ... We all have to be careful about using response to therapy and making direct correlations with PFS or OS. The novel agents have changed our ability to control disease without HDT-ASCT. For the first time novel agents allow us to acheive VGPRs and CRs at rates as good if not better then HDT-ASCT in cases of multi-agent combinations. But the question of whether novel therapies can take the place of HDT-ASCT has not yet been answered. There are a number of studies in the US, Europe, and the rest of the world going on to answer this question. However, my feeling is that the strides made in disease modification requires the combination of both. And some of the preliminary data in these studies support this hypothesis. To this end, HDT-ASCT will improve your response following induction therapy.
Another comment that was brought up is that of allogeneic vs autologous transplant. This remains an interesting topic. With allo (using a matched related or unrelated stem cell donor) there is the potential for lasting control of the disease, with the new immune system recognizing the disease as foreign and controlling or eradicating it. This is something that should be considered only under a clinical trial and only in appropriate candidates. I recommend that patients under 60 give this option some thought. However, it is not for everyone.
On the subject of 1 vs. 2 stem cell transplants ... In the US, a single transplant is in order unless the response is sub-optimal (<Partial response with HDT-ASCT), in which case a tandem transplant may be utilized, or based on doctor-patient discussions.
A comment about clinical trials in HDT-ASCT ... As a myeloma physician, I am always in favor of my patients enrolling in clinical trials. At the same time, I recognize that it does not always work out for patients in terms of availability, drive times, etc due to the extra lab work and the need to be treated at the academic center / trial site.
On the subject of maintenance therapy ... Although it is not a "new concept," the success and tolerability of Revlimid maintenance have made it very attractive after transplant. It has been shown to prolong progression free survival in two large studies, but there is an overall survival benefit in only one of the studies.
Maintenance also has inherent risks. You are taking a pill -- a chemo pill -- everyday that may affect you immune competence, your energy, and may (not confirmed) increase your risk for second primary malignancies. These are all important issues for all patients, and lately even more so for individuals with a longer life expectancy.
To this end, I recommend maintenance to patients with residual disease after transplant or high risk disease (based on cytogenetics, FISH, MyPRS, etc.).
One also has to remember that studies have demonstrated that populations (up to 25% of patients in some retrospective studies) of folks treated and transplanted prior to novel agents can have overall survival of greater than 10 years without maintenance.
I have touched on some of the important questions that you face with the next lines of therapy. Congratulations on meeting your first hurdle with great success. We wish continued success.
To state again- participation in clinical trials is how we have acheived what we have to date.
Happy Thanksgiving.
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Dr. Ken Shain - Name: Ken Shain, M.D., Ph.D.
Beacon Medical Advisor
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
Dr. Shain's response is very helpful. It could be reused for initial questions from new patients.
Thanks.
Thanks.
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David Finkelstein
Re: Newly Diagnosed 43yr old with 8.9 M-Spike
As usual, Dr. Shain's response is both very informative and comes across without the feeling he is pushing you into a direction he feels best.
Having a great response to my first induction, as he stated does not mean I will have the same response should I relapse. Therefore I will go ahead with my planned HDT-ASCT. All my blood numbers are perfect and some even better than the average healthy person. I have even seen HGBs in the 16's, pretty good considering I was 6.3 only 3 months ago and was on chemo for the past 3 months. I even had a good white blood cell count and mature wbc during therapy. The Dr's and nurses ask me, what are you taking at home? Cause it's working. They continued to be dumbfounded with my body's response and recovery from very bad to great in a short amount of time.
I can only think that going in so "clean" and healthy to the HDT-ASCT that my response and recovery will be great!
Man, this disease is a evil. But it can be fought. And you can beat it down! Personally I would highly recommend the supplements I take and adjusting your diet to eat healthy, and exercise.
-Chris
Having a great response to my first induction, as he stated does not mean I will have the same response should I relapse. Therefore I will go ahead with my planned HDT-ASCT. All my blood numbers are perfect and some even better than the average healthy person. I have even seen HGBs in the 16's, pretty good considering I was 6.3 only 3 months ago and was on chemo for the past 3 months. I even had a good white blood cell count and mature wbc during therapy. The Dr's and nurses ask me, what are you taking at home? Cause it's working. They continued to be dumbfounded with my body's response and recovery from very bad to great in a short amount of time.
I can only think that going in so "clean" and healthy to the HDT-ASCT that my response and recovery will be great!
Man, this disease is a evil. But it can be fought. And you can beat it down! Personally I would highly recommend the supplements I take and adjusting your diet to eat healthy, and exercise.
-Chris
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ninja performance - Name: Chris Hill
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 08/04/2011
- Age at diagnosis: 43
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