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High Risk Smoldering Myeloma
I was recently diagnosed with smoldering. My first hematologist wanted to start me on a Revlimid-Dexamethasone combination to delay the disease progression to active multiple myeloma. I received a 2nd opinion with a second hematologist that suggested that I don't start any medication treatment. My non expert research seems to differentiate the need for medication treatment is you are a "high risk" vs. "low risk" for progression. I have a 35% plasma cell and a very high immunoglobulin free light chain ratio. These are 2 of the 4 risk factors. My bone marrow biopsy could not determine the level of the monoclonal protein. The 4th risk factor is a "95% or higher of abnormal plasma cells as assessed by a technique called immunophenotyping". I'm not sure if I've been tested for this 4th risk factor. Is immunophenotyping a test that I should request or is this result somewhere in the blood work that is typically done?
Re: High Risk Smoldering Myeloma
My history is similar to yours. My advice to you is to go to a myeloma expert, not a general hem/onc, at a major NCI-accredited cancer center. Smoldering myeloma is generally not treated but you watch and wait. However, in the context of clinical trials, there are several SMM trials in the US. The NIH in Bethesda, Md has a couple utilzing experimental meds.and I know that Mass General in Boston is starting one with a non-chemo cocktail of peptides developed at Dana Farber to halt progression. Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: High Risk Smoldering Myeloma
I'm in the same boat as you. I've been smoldering since March 2012. I have none of the CRAB issues (as of my last tests). Hoping the tests done this week show no bone lesions.
I'm in a clinical trial at Mt. Sinai in NYC. It's using a drug to strengthen bones. And, they're hoping it might slow plasma cells in the bone marrow.
2 months ago my local oncologist saw my the results of blood work I gave him from the trial. He said it's time to start treatment. Freaked me out as the doctor at Mt. Sinai (Dr. Jagannath) sees my results every month and there was no red flag raised. He said no treatment at this time. I've left the local oncologist.
I also went to the NIH and was offered the Carfilzomib trial for SMM. I turned it down. I was recently offered a spot with the MLN9708 clinical trial. It's the oral version of Velcade and Dex. I'm considering this. But, Dr. Jagannath, who's a leader in this field doesn't believe in the treatment of SMM patients. He said, in a joking sort of way, that the NIH makes claims that just aren't realistic. Treat SMM patients that don't need treatment with chemo before they really need it isn't a good idea. Wait until they need it and then treat it with the same drugs the trial would use. That's his opinion and I need to sit and speak with him. Im still on the fence about this.
There's a statement that somebody has made about using chemo to treat SMM - "Don't poke the Tiger".
All in all, go to a multiple myeloma specialist. A local oncologist may see half a dozen multiple myeloma patients and will treat them all the same. multiple myeloma is not a disease that effects us all the same way. A specialist that has seen 100's or 1000's of multiple myeloma patients will have a much better grasp on how to treat the individual.
Terry, do you have more info on the non-chemo trial at Dana Farber?
I'm in a clinical trial at Mt. Sinai in NYC. It's using a drug to strengthen bones. And, they're hoping it might slow plasma cells in the bone marrow.
2 months ago my local oncologist saw my the results of blood work I gave him from the trial. He said it's time to start treatment. Freaked me out as the doctor at Mt. Sinai (Dr. Jagannath) sees my results every month and there was no red flag raised. He said no treatment at this time. I've left the local oncologist.
I also went to the NIH and was offered the Carfilzomib trial for SMM. I turned it down. I was recently offered a spot with the MLN9708 clinical trial. It's the oral version of Velcade and Dex. I'm considering this. But, Dr. Jagannath, who's a leader in this field doesn't believe in the treatment of SMM patients. He said, in a joking sort of way, that the NIH makes claims that just aren't realistic. Treat SMM patients that don't need treatment with chemo before they really need it isn't a good idea. Wait until they need it and then treat it with the same drugs the trial would use. That's his opinion and I need to sit and speak with him. Im still on the fence about this.
There's a statement that somebody has made about using chemo to treat SMM - "Don't poke the Tiger".
All in all, go to a multiple myeloma specialist. A local oncologist may see half a dozen multiple myeloma patients and will treat them all the same. multiple myeloma is not a disease that effects us all the same way. A specialist that has seen 100's or 1000's of multiple myeloma patients will have a much better grasp on how to treat the individual.
Terry, do you have more info on the non-chemo trial at Dana Farber?
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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: High Risk Smoldering Myeloma
Hi Stan, these are difficult and scary decisions to make. My case is one where watching and waiting damn near killed me. I suffered a pulmonary embolism while being monitored as a smolderer at both UPenn and the NIH. Those with cancer in general and hematological cancers in particular are at incresed risk of these as the cancer cells wreck havoc on the marrow and body. Unfortunately, I became one of those statistics. In a matter of weeks, my hemaglobin also plummeted to below CRAB levels. I was shocked at the rapidity of the progression and I was closely monitored. I chose to be treated at the NIH in the CRd trial for newly diagnosed and I am doing well and last month my marrow was found to be clean. Whatever approach you take, you have fine doctors. I love Dr. Landgren and his approach and that is why I chose the NIH. Obviously, others differ...that's life in the myeloma world.
As far as the peptides SMM trial is concerned. It involves a non-chemo treatment developed by Dana Farber researches including Nikhil Munshi. Oncopep is the company. Mass General is one of the spots. They contacted me recentyl, but, alas, I had already progressed. Try calling the research nurse for the myeloma dept. at Mass General for more info. Good luck.
As far as the peptides SMM trial is concerned. It involves a non-chemo treatment developed by Dana Farber researches including Nikhil Munshi. Oncopep is the company. Mass General is one of the spots. They contacted me recentyl, but, alas, I had already progressed. Try calling the research nurse for the myeloma dept. at Mass General for more info. Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: High Risk Smoldering Myeloma
terryl1 wrote:
> Hi Stan, these are difficult and scary decisions to make. My case is one
> where watching and waiting damn near killed me. I suffered a pulmonary
> embolism while being monitored as a smolderer at both UPenn and the NIH.
> Those with cancer in general and hematological cancers in particular are at
> incresed risk of these as the cancer cells wreck havoc on the marrow and
> body. Unfortunately, I became one of those statistics. In a matter of
> weeks, my hemaglobin also plummeted to below CRAB levels. I was shocked at
> the rapidity of the progression and I was closely monitored. I chose to be
> treated at the NIH in the CRd trial for newly diagnosed and I am doing well
> and last month my marrow was found to be clean. Whatever approach you take,
> you have fine doctors. I love Dr. Landgren and his approach and that is why
> I chose the NIH. Obviously, others differ...that's life in the myeloma
> world.
>
> As far as the peptides SMM trial is concerned. It involves a non-chemo
> treatment developed by Dana Farber researches including Nikhil Munshi.
> Oncopep is the company. Mass General is one of the spots. They contacted me
> recentyl, but, alas, I had already progressed. Try calling the research
> nurse for the myeloma dept. at Mass General for more info. Good luck.
Terry,
Good to here that it's worked for you. It appears you weren't in the trial for SMM. But, the trial for newly diagnosed. I think that's the big difference. I'm lucky to have one of the best doctors regarding multiple myeloma. And, even luckier to still be in contact with the NIH. Dr. Roschewski (Dr. Landgren's team mate) contacted me a couple of weeks ago to see how I was doing. As I said the oral Veclade trial sounds really interesting. Especially since I don't have to go down to the NIH every week. Also, it's only 2 drugs (MLN9708 & Dex). And, Dr. R guaranteed me a spot should I choose to do so but, I can't participate until the BHQ880 trial I'm in is done. And, hopefully it's working and I don't have any bone involvement (which would eliminate me from the MLN trial).
So, I'll continue being watched but, I do want to get Jagannath's opinion on "chemo" trials on SMM patients.
> Hi Stan, these are difficult and scary decisions to make. My case is one
> where watching and waiting damn near killed me. I suffered a pulmonary
> embolism while being monitored as a smolderer at both UPenn and the NIH.
> Those with cancer in general and hematological cancers in particular are at
> incresed risk of these as the cancer cells wreck havoc on the marrow and
> body. Unfortunately, I became one of those statistics. In a matter of
> weeks, my hemaglobin also plummeted to below CRAB levels. I was shocked at
> the rapidity of the progression and I was closely monitored. I chose to be
> treated at the NIH in the CRd trial for newly diagnosed and I am doing well
> and last month my marrow was found to be clean. Whatever approach you take,
> you have fine doctors. I love Dr. Landgren and his approach and that is why
> I chose the NIH. Obviously, others differ...that's life in the myeloma
> world.
>
> As far as the peptides SMM trial is concerned. It involves a non-chemo
> treatment developed by Dana Farber researches including Nikhil Munshi.
> Oncopep is the company. Mass General is one of the spots. They contacted me
> recentyl, but, alas, I had already progressed. Try calling the research
> nurse for the myeloma dept. at Mass General for more info. Good luck.
Terry,
Good to here that it's worked for you. It appears you weren't in the trial for SMM. But, the trial for newly diagnosed. I think that's the big difference. I'm lucky to have one of the best doctors regarding multiple myeloma. And, even luckier to still be in contact with the NIH. Dr. Roschewski (Dr. Landgren's team mate) contacted me a couple of weeks ago to see how I was doing. As I said the oral Veclade trial sounds really interesting. Especially since I don't have to go down to the NIH every week. Also, it's only 2 drugs (MLN9708 & Dex). And, Dr. R guaranteed me a spot should I choose to do so but, I can't participate until the BHQ880 trial I'm in is done. And, hopefully it's working and I don't have any bone involvement (which would eliminate me from the MLN trial).
So, I'll continue being watched but, I do want to get Jagannath's opinion on "chemo" trials on SMM patients.
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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: High Risk Smoldering Myeloma
Hi ajdlaw (and everyone else),
As best I understand it, the current standard of care when it comes to smoldering myeloma is that the disease should be observed but not treated.
However, there is a lot of research going on about whether or not it makes sense to actively treat at least some smoldering myeloma patients -- those which, as you mention, are at a high risk of progressing to active myeloma.
There is at least one clinical trial that has shown that actively treating high-risk smoldering myeloma patients (with Revlimid) statistically improved their overall survival. The trial, and a discussion of its potential implications, is discussed in this interview with Dr. Landgren at the NIH:
https://myelomabeacon.org/news/2012/01/13/smoldering-myeloma-what-do-the-latest-research-findings-mean-a-discussion-with-dr-ola-landgren/
There is one problem though, which you allude to in your posting. There is no generally agreed upon definition of what a "high risk" smoldering patient is. There is a nice discussion of this issue here:
https://myelomabeacon.org/forum/formal-risk-of-progression-classification-for-smoldering-multiple-myeloma-t1542.html
As best I understand it, the current standard of care when it comes to smoldering myeloma is that the disease should be observed but not treated.
However, there is a lot of research going on about whether or not it makes sense to actively treat at least some smoldering myeloma patients -- those which, as you mention, are at a high risk of progressing to active myeloma.
There is at least one clinical trial that has shown that actively treating high-risk smoldering myeloma patients (with Revlimid) statistically improved their overall survival. The trial, and a discussion of its potential implications, is discussed in this interview with Dr. Landgren at the NIH:
https://myelomabeacon.org/news/2012/01/13/smoldering-myeloma-what-do-the-latest-research-findings-mean-a-discussion-with-dr-ola-landgren/
There is one problem though, which you allude to in your posting. There is no generally agreed upon definition of what a "high risk" smoldering patient is. There is a nice discussion of this issue here:
https://myelomabeacon.org/forum/formal-risk-of-progression-classification-for-smoldering-multiple-myeloma-t1542.html
Re: High Risk Smoldering Myeloma
I agree, Terry. Differing protocols and different effects multiple myeloma has on people makes things that more confusing.
Thanks for the info on the PVX-410 vaccine. I've emailed Dr. Anderson at Dana Farber.
Thanks for the info on the PVX-410 vaccine. I've emailed Dr. Anderson at Dana Farber.
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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: High Risk Smoldering Myeloma
Hi Stan, even though Dana Farber is connected to the SMM trial, I think Mass General is the actual site. I would call the research nurse at Mass General or the contact number at Oncopep. Good luck. It would be awesome if it worked and halted progression. Who knows?
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
Re: High Risk Smoldering Myeloma
terryl1 wrote:
> Hi Stan, even though Dana Farber is connected to the SMM trial, I think
> Mass General is the actual site. I would call the research nurse at Mass
> General or the contact number at Oncopep. Good luck. It would be awesome if
> it worked and halted progression. Who knows?
Thanks. I've contacted Oncopep via email and will call Mass General.
Update: Oncopep just called me. About half an hour after I sent email! Will speak with rep tomorrow.
> Hi Stan, even though Dana Farber is connected to the SMM trial, I think
> Mass General is the actual site. I would call the research nurse at Mass
> General or the contact number at Oncopep. Good luck. It would be awesome if
> it worked and halted progression. Who knows?
Thanks. I've contacted Oncopep via email and will call Mass General.
Update: Oncopep just called me. About half an hour after I sent email! Will speak with rep tomorrow.
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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: High Risk Smoldering Myeloma
Hi Stan, the squeaky wheel gets the oil! When I contacted them last year, the actual CEO called me back. I can't remember her name but she was very nice and knowledgeable and knew of my doctor and his myeloma research, Dr. Landgren of the NIH. Good luck.
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terryl1 - Name: Terry
- Who do you know with myeloma?: self
- When were you/they diagnosed?: August 10, 2011
- Age at diagnosis: 49
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