Forums
Looking for Feedback on Recommended First Round Treatment
I was diagnosed in early November with "asymptomatic" Stage 1 multiple myeloma, even though I was clearly symptomatic due to small lesions present in my Xray skeletal survey. My initial diagnosing doc said to just wait and get re-tested in 3 months. I got a second opinion today at the at the University of Colorado Hospital. Pending their own analysis of my Xrays and potentially a follow-on PET scan to confirm the lesions, their pending recommendation would be to begin a treatment regime of RVD, followed by an auto transplant in 3 months (they aren't twisting my arm to do the transplant, but that is their recommendation for the best possible results). Since I'm still new to all this, I was just wondering what others thought of this as a recommended initial first course of treatment?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Looking for Feedback on Recommended First Round Treatmen
If you do have lesions that have cancer in them (plasmacytoma) they will want to get rid of it with radiation first probably. Everything else is standard these days. Exactly what I am working towards now. Good luck, you are early and you should do well!!
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bluemountain
Re: Looking for Feedback on Recommended First Round Treatmen
The regimen recommended for you is reasonable. Some debate in the myeloma community about use of 2 drug versus 3 drug regimens as initial treatment in transplant eligible patients but the biggest thing ultimately is the deepest response possible.
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Dr. Jason Valent - Name: Jason Valent, M.D.
Beacon Medical Advisor
Re: Looking for Feedback on Recommended First Round Treatmen
Thanks, Dr. Valent, for the feedback. Is there general agreement on what the alternative combo of 2 drugs would be versus the combo of the three drugs in RVD?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Looking for Feedback on Recommended First Round Treatmen
Multibilly,
If you want to reduce the risk of peripheral neuropathy you would switch from Velcade to Krypolis, aka bortezomib vs carfilzomib.
Hope this helps.
If you want to reduce the risk of peripheral neuropathy you would switch from Velcade to Krypolis, aka bortezomib vs carfilzomib.
Hope this helps.
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suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Looking for Feedback on Recommended First Round Treatmen
VRD has been shown to produce great responses on initial treament. Many people reach a Complete Response or VGPR within 3 or 4 cycles. If that is the case, you may want to hold off on the SCT but have your stem cells harvested. You then can have the SCT performed at first relapse.
Some patients on Velcade have had issues with peripheral neuropathy, but that risk has been reduced significantly when it is administered through a subcutaneous shot as opposed to infusion.
Ron
Some patients on Velcade have had issues with peripheral neuropathy, but that risk has been reduced significantly when it is administered through a subcutaneous shot as opposed to infusion.
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: Looking for Feedback on Recommended First Round Treatmen
I'd wait on the SCT.
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Stan W. - Name: Stan
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: SMM-April 2012
- Age at diagnosis: 58
Re: Looking for Feedback on Recommended First Round Treatmen
Wow. Two people suggesting to wait on the SCT (assuming that I harvest my stem cells after the RVD treatment). What are the downsides, if any, on postponing the SCT in this scenario?
I love this forum. It such a huge help. Thanks all.
I love this forum. It such a huge help. Thanks all.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Looking for Feedback on Recommended First Round Treatmen
Hi Multibilly!
I agree with Ron and Stann, the Beacon did a post on delayed vs. early SCT.
https://myelomabeacon.org/news/2011/10/31/study-finds-early-and-delayed-stem-cell-transplants-have-comparable-efficacy-in-newly-diagnosed-multiple-myeloma-patients/
With the new agents today you can get deep responses without SCT, which has many other challenges you may not wish to have/endure.
You write:
" I was clearly symptomatic due to small lesions"
Lesions, not to quibble, are not symptomatic, they are signs of disease. A symptom would be pain or other issues that are limiting your QOL. My question would be what was occurring that made your clinician discover multiple myeloma...what were you complaining of (symptoms), if anything? What you complain about to your physician are typically symptoms, i.e. .pain, fatigue etc. Many of us are asymptomatic when diagnosed. It sounds like you were also. What lab values made your clinician look further?
You also may find this information, at the most recent ASH 2012, useful as well:
"carfilzomib (CFZ) is an irreversible proteasome inhibitor with potent anti-MM effects and significantly decreased peripheral neuropathy rates compared with bortezomib. In this single stage phase II trial, we plan to treat 45 newly diagnosed multiple myeloma patients with 8 cycles of CRd followed by 1 year of lenalidomide (LEN) maintenance. Unique to this study, transplant eligible patients default to “delayed” ASCT per protocol and depth of molecular responses are assessed using studies of minimal residual disease (MRD) (flow cytometry, PCR, and FDG PET-CT). Using this approach, we report the first n=18/45 patient results, showing that CRd induces rapid and deep remissions....snip....
Using an approach that merges functional imaging with molecular responses beyond traditional clinical biomarkers, we show that CRd followed by LEN maintenance and delayed ASCT is a highly potent and tolerable combination regimen in newly diagnosed multiple myeloma patients."
http://myeloma.org/ArticlePage.action?tabId=0&menuId=0&articleId=3860&aTab=-1&tBack=&tDisplayBack=true
Do you have a good/full understanding of peripheral neuropathy and what it means for your QOL? It can make a real difference in terms of what therapeutic agents are chosen. Particularly, as a NDMM pt. You have choices.
If you have questions about any acronyms, please don't hesitate to ask. We are here to be as helpful as you need and NO question is stupid. These are our LIVES....and y ou are not alone, many NDMM pts. are not familiar with the acronyms we use for shorthand. What you need to know is ASK AWAY!! We have all been there and will willingly help you.
You have picked a one of the most knowlegable forums between patients and multiple myeloma experts. You will get the full spectrum of all our experience and you will learn a lot.
Sometimes it may be more than you can digest, but if you are being pressed to choose, ASK!!!
so that you may
Choose wisely and know your options.
Good Luck!
I agree with Ron and Stann, the Beacon did a post on delayed vs. early SCT.
https://myelomabeacon.org/news/2011/10/31/study-finds-early-and-delayed-stem-cell-transplants-have-comparable-efficacy-in-newly-diagnosed-multiple-myeloma-patients/
With the new agents today you can get deep responses without SCT, which has many other challenges you may not wish to have/endure.
You write:
" I was clearly symptomatic due to small lesions"
Lesions, not to quibble, are not symptomatic, they are signs of disease. A symptom would be pain or other issues that are limiting your QOL. My question would be what was occurring that made your clinician discover multiple myeloma...what were you complaining of (symptoms), if anything? What you complain about to your physician are typically symptoms, i.e. .pain, fatigue etc. Many of us are asymptomatic when diagnosed. It sounds like you were also. What lab values made your clinician look further?
You also may find this information, at the most recent ASH 2012, useful as well:
"carfilzomib (CFZ) is an irreversible proteasome inhibitor with potent anti-MM effects and significantly decreased peripheral neuropathy rates compared with bortezomib. In this single stage phase II trial, we plan to treat 45 newly diagnosed multiple myeloma patients with 8 cycles of CRd followed by 1 year of lenalidomide (LEN) maintenance. Unique to this study, transplant eligible patients default to “delayed” ASCT per protocol and depth of molecular responses are assessed using studies of minimal residual disease (MRD) (flow cytometry, PCR, and FDG PET-CT). Using this approach, we report the first n=18/45 patient results, showing that CRd induces rapid and deep remissions....snip....
Using an approach that merges functional imaging with molecular responses beyond traditional clinical biomarkers, we show that CRd followed by LEN maintenance and delayed ASCT is a highly potent and tolerable combination regimen in newly diagnosed multiple myeloma patients."
http://myeloma.org/ArticlePage.action?tabId=0&menuId=0&articleId=3860&aTab=-1&tBack=&tDisplayBack=true
Do you have a good/full understanding of peripheral neuropathy and what it means for your QOL? It can make a real difference in terms of what therapeutic agents are chosen. Particularly, as a NDMM pt. You have choices.
If you have questions about any acronyms, please don't hesitate to ask. We are here to be as helpful as you need and NO question is stupid. These are our LIVES....and y ou are not alone, many NDMM pts. are not familiar with the acronyms we use for shorthand. What you need to know is ASK AWAY!! We have all been there and will willingly help you.
You have picked a one of the most knowlegable forums between patients and multiple myeloma experts. You will get the full spectrum of all our experience and you will learn a lot.
Sometimes it may be more than you can digest, but if you are being pressed to choose, ASK!!!
so that you may
Choose wisely and know your options.
Good Luck!
-
suzierose - Name: suzierose
- When were you/they diagnosed?: 2 sept 2011
Re: Looking for Feedback on Recommended First Round Treatmen
>
> Do you have a good/full understanding of peripheral neuropathy and what it
> means for your QOL? It can make a real difference in terms of what
> therapeutic agents are chosen. Particularly, as a NDMM pt. You have
> choices.
>
Not really. I am just beginning to explore what the potential implications of the peripheral neuropathy are and that is currently my biggest concern going into initial treatment. My second doc said that most of his patients don't suffer from it on the RVD regimen, but if they do, he can quickly deal with it by dialing down the dose. This will be a topic of follow up discussion with him next week. Note that my first doc said I should just monitor the disease at this point and not do any treatment and that it was better to wait. But, I am definitely getting the impression from this forum and my second doc that one should begin treatment based on my current lab results and having lytic lesions (see further below).
> You write:
> " I was clearly symptomatic due to small lesions"
>
> Lesions, not to quibble, are not symptomatic, they are signs of disease.
> A symptom would be pain or other issues that are limiting your QOL. My
> question would be what was occurring that made your clinician discover
> multiple myeloma...what were you complaining of (symptoms), if anything?
> What you complain about to your physician are typically symptoms, fatigue
> etc. Many of us are asymptomatic when diagnosed. It sounds like you were
> also. What lab values made your clinician look further?
Well, the point I was trying to make is that I meet one of the CRAB criteria, and that combined with my initial paraprotein level (1.67) and clonal plasma level (11%), makes me technically "Symptomatic" Stage 1. I was feeling no symptoms (and I still don't feel any) when I had a routine physical with routine bloodwork done last fall. I had an slightly borderline-low sodium level (still trying to explain that) and an only slightly elevated total protein level that we couldn't explain in the routine physical bloodwork. He was smart enough to then order a follow-up serum protein electrophoresis test and then detected what he called a "beta spike when analyzing my globulin results". He then referred me to an oncologist for more tests, which included a skeletal xray, more blood and urine serum tests and a bone marrow test, which yielded the paraprotein and clonal plasma level results above. Both of my hematologists say I was extremely lucky that my general physician caught this problem based on the subtleties in my initial bloodwork.
>
>
> Choose wisely and know your options.
>
> Good Luck!
Thanks!!
> Do you have a good/full understanding of peripheral neuropathy and what it
> means for your QOL? It can make a real difference in terms of what
> therapeutic agents are chosen. Particularly, as a NDMM pt. You have
> choices.
>
Not really. I am just beginning to explore what the potential implications of the peripheral neuropathy are and that is currently my biggest concern going into initial treatment. My second doc said that most of his patients don't suffer from it on the RVD regimen, but if they do, he can quickly deal with it by dialing down the dose. This will be a topic of follow up discussion with him next week. Note that my first doc said I should just monitor the disease at this point and not do any treatment and that it was better to wait. But, I am definitely getting the impression from this forum and my second doc that one should begin treatment based on my current lab results and having lytic lesions (see further below).
> You write:
> " I was clearly symptomatic due to small lesions"
>
> Lesions, not to quibble, are not symptomatic, they are signs of disease.
> A symptom would be pain or other issues that are limiting your QOL. My
> question would be what was occurring that made your clinician discover
> multiple myeloma...what were you complaining of (symptoms), if anything?
> What you complain about to your physician are typically symptoms, fatigue
> etc. Many of us are asymptomatic when diagnosed. It sounds like you were
> also. What lab values made your clinician look further?
Well, the point I was trying to make is that I meet one of the CRAB criteria, and that combined with my initial paraprotein level (1.67) and clonal plasma level (11%), makes me technically "Symptomatic" Stage 1. I was feeling no symptoms (and I still don't feel any) when I had a routine physical with routine bloodwork done last fall. I had an slightly borderline-low sodium level (still trying to explain that) and an only slightly elevated total protein level that we couldn't explain in the routine physical bloodwork. He was smart enough to then order a follow-up serum protein electrophoresis test and then detected what he called a "beta spike when analyzing my globulin results". He then referred me to an oncologist for more tests, which included a skeletal xray, more blood and urine serum tests and a bone marrow test, which yielded the paraprotein and clonal plasma level results above. Both of my hematologists say I was extremely lucky that my general physician caught this problem based on the subtleties in my initial bloodwork.
>
>
> Choose wisely and know your options.
>
> Good Luck!
Thanks!!
-
Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012