Additional evining reading .....
https://myelomabeacon.org/news/2010/06/16/treatment-of-myeloma-with-novel-agents-may-be-as-effective-as-stem-cell-transplantation-part-2-revlimid-velcade-dexamethasone-asco-2010/
Ron
Forums
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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
Still digesting and weighing all the great inputs on this thread. In the meantime, allow me to ask another question that I have been pondering since I found out that there may be a question regarding whether or not I truly have lytic lesions and to get scheduled for a PET scan in the coming days (please remember that this was the recommendation of both Dr. Valent and Terry1 in a different thread...thanks).
As I read through all the recent dialogue on whether or not to treat Smoldering multiple myeloma, I keep on coming across the somewhat nebulous definition of what "High Risk" is for SMM. If I read Stan W's latest post on his visit to the NIH, it sounds like they have their own criteria for defining "High Risk". I also read about the threshold of "60% involvement in plasma cells" as being the threshold for when SMM patients should seek treatment. Based on this calculator http://www.qxmd.com/calculate-online/calculate, my current level of a 1.6 g/dl (16g/l) Monoclonal Paraprotein (M-Spike) and the presence of 11% plasma cells would make me "intermediate risk" SMM, if my PET scan indeed comes back and confirms no bone lesions (I have none of the other CRAB challenges going on with me). As stated previously, my cytogenetics show no anomalies and I have an abnormally low K/L Light Chain ratio of 0.05.
As I read these articles below, am I truly considered "High Risk" and should I seriously consider chemo in the eyes of these authors if my PET scan shows I have no CRAB complications?
Also, just what criteria need to met in order for the NIH to consider one "high risk" SMM?
https://myelomabeacon.org/news/2012/01/09/revlimid-lenalidomide-dexamethasone-combination-delays-disease-progression-in-patients-with-smoldering-multiple-myeloma-ash-2011/
https://myelomabeacon.org/news/2012/01/13/smoldering-myeloma-what-do-the-latest-research-findings-mean-a-discussion-with-dr-ola-landgren/
Again, let me underscore that I have yet to be downgraded to a smoldering status (but keeping my fingers crossed), so this is somewhat speculative in me asking this question right now.
As I read through all the recent dialogue on whether or not to treat Smoldering multiple myeloma, I keep on coming across the somewhat nebulous definition of what "High Risk" is for SMM. If I read Stan W's latest post on his visit to the NIH, it sounds like they have their own criteria for defining "High Risk". I also read about the threshold of "60% involvement in plasma cells" as being the threshold for when SMM patients should seek treatment. Based on this calculator http://www.qxmd.com/calculate-online/calculate, my current level of a 1.6 g/dl (16g/l) Monoclonal Paraprotein (M-Spike) and the presence of 11% plasma cells would make me "intermediate risk" SMM, if my PET scan indeed comes back and confirms no bone lesions (I have none of the other CRAB challenges going on with me). As stated previously, my cytogenetics show no anomalies and I have an abnormally low K/L Light Chain ratio of 0.05.
As I read these articles below, am I truly considered "High Risk" and should I seriously consider chemo in the eyes of these authors if my PET scan shows I have no CRAB complications?
Also, just what criteria need to met in order for the NIH to consider one "high risk" SMM?
https://myelomabeacon.org/news/2012/01/09/revlimid-lenalidomide-dexamethasone-combination-delays-disease-progression-in-patients-with-smoldering-multiple-myeloma-ash-2011/
https://myelomabeacon.org/news/2012/01/13/smoldering-myeloma-what-do-the-latest-research-findings-mean-a-discussion-with-dr-ola-landgren/
Again, let me underscore that I have yet to be downgraded to a smoldering status (but keeping my fingers crossed), so this is somewhat speculative in me asking this question right now.
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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 probably was the unfortunate poster boy for what constitutes high risk for progression SMM. I also was (SMM study) and am a patient at the NIH (Crd). I was dx. last summer as having smoldering SMM and I was monitored concurrently by the NIH and UPenn. After about 8 months, I progressed to active myeloma with a bang....I had a pulmonary embolism which damn near killed me. People with cancer, especially blood cancers, have a much higher rate of DVT and PE's than the general population. At the same time, my FLC's exploded and my hemoglobin dropped like a stone. After being released from UPenn, it was time to treat. I weighed my options: ASCT at UPenn or CRd at the NIH. I chose the latter as my course. I just completed 8 cycles---my stem cells were collected and frozen for a rainy day---and I just found out this Tuesday that my marrow was CLEAN!
Why was I high risk for progression to active myeloma? I had over 60% plasma cell infiltration, a skewed FLC ratio, immuneparesis, etc. For me, I got dealt a bad hand of cards upfront. However, I am doing well now and thank God I got a slot in the NIH CRd trial. It sounds like you may not be high risk for progression based on what you have outlined, but check with your specialist. The criteria are pretty much established as I outlined above. Good luck. Terry L,
Why was I high risk for progression to active myeloma? I had over 60% plasma cell infiltration, a skewed FLC ratio, immuneparesis, etc. For me, I got dealt a bad hand of cards upfront. However, I am doing well now and thank God I got a slot in the NIH CRd trial. It sounds like you may not be high risk for progression based on what you have outlined, but check with your specialist. The criteria are pretty much established as I outlined above. Good luck. Terry L,
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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: Looking for Feedback on Recommended First Round Treatmen
Hi Multibilly, I just remembered your last line that you may in fact have active myeloma. Hopefully, a PET CT or MRI will be done in addition to plain radiographic xrays. There are many cases where xrays show no lesions but they are picked up by more advanced imaging. I was a case in point. In May, before starting my trial, I had a baseline radiographic skeletal survey which was normal. However, a baseline PET CT the same day showed a lytic lesion on the back of my skull. It seems ill-advised to just rely on plain xrays and many people with lesions and bone involvement are thereby missed. Terry L.
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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: Looking for Feedback on Recommended First Round Treatmen
Multibilly,
Between my oncologist, the NIH and Dr. Jagannath I've had 2 skeletal surveys, a CAT Scan, PET scan, an MRI and 2 bone density tests. No bone lesions. I wasn't anemic nor did I have any CRAB issues.
I went with Dr. Jagannath's findings. When I went to the NIH, I was still pretty much shell shocked from being diagnosed. Many people on another forum said "not to poke the tiger". Meaning I have no symptoms so don't do the trials at NIH. Then again, had this same trial been in NYC, I might have considered it. At the time it was just too much for me to swallow. I made the decision not to and, don't regret it.
When I need treatment I'll get it. Right now, I'm riding it out as long as possible. And, I'm looking into other trials that are coming up should I need treatment. There's a trial with a vaccine at Mass General in Boston. Right now I'm in a trial with a bone strengthening drug (BHQ880). It made sense to me because multiple myeloma attacks the bones. And, no side effects from the drug. I'm halfway through the trial.
All the choices, all the different ways multiple myeloma effects us and all the different side effects and how they do or don't effect us makes the choice that much more stressful.
Between my oncologist, the NIH and Dr. Jagannath I've had 2 skeletal surveys, a CAT Scan, PET scan, an MRI and 2 bone density tests. No bone lesions. I wasn't anemic nor did I have any CRAB issues.
I went with Dr. Jagannath's findings. When I went to the NIH, I was still pretty much shell shocked from being diagnosed. Many people on another forum said "not to poke the tiger". Meaning I have no symptoms so don't do the trials at NIH. Then again, had this same trial been in NYC, I might have considered it. At the time it was just too much for me to swallow. I made the decision not to and, don't regret it.
When I need treatment I'll get it. Right now, I'm riding it out as long as possible. And, I'm looking into other trials that are coming up should I need treatment. There's a trial with a vaccine at Mass General in Boston. Right now I'm in a trial with a bone strengthening drug (BHQ880). It made sense to me because multiple myeloma attacks the bones. And, no side effects from the drug. I'm halfway through the trial.
All the choices, all the different ways multiple myeloma effects us and all the different side effects and how they do or don't effect us makes the choice that much more stressful.
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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
I was diagnosed may first 2010, my treatment was Velcade and Revlimid 25 mg for 16 weeks then I went to Vanderbuilt for a transplant. My transplant was Oct 15 2010. I am now in remission.If I had it to do over I would do the same thing again. They also took enough stem cells for my second transplant at the time. I was at Vanderbuilt for 45 days. I live Knoxville Tn. And Nashville was my 1st choice. Good Luck I hope and pray for the best.
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Butter
Re: Looking for Feedback on Recommended First Round Treatmen
Well, I saw a third specialist today. I'm now waiting on a second and now third interpretation of my PET-CT scan results to see whether I do have any myeloma involvement in some demineralization that "may" be present in my femur. He suggested a DEXA scan (bone density test) to help confirm just what is going on in, if anything...yet another opportunity to pick up some more rads 
My next course of action first hinges on determining whether I have bone involvement with my multiple myeloma condition, so I will likely be waiting a couple of weeks for additional opinions on the PET-CT and DEX scan results.
He did mention a trial that I might be interested in considering for treating asymptomatic smoldering multiple myeloma patients. This is the E3A06 study http://ecog-acrin.org/wp-content/uploads/2012/10/E3A06_physician_fact_sheet.pdf that is trying to prove out some of the earlier Spanish team's findings regarding proactively treating smoldering multiple myeloma instead of just monitoring it https://myelomabeacon.org/news/2012/09/07/higher-progression-risk-for-smoldering-myeloma-patients-with-high-percentage-of-plasma-cells-in-bone-marrow/ Is anybody on this forum participating in this trial? I was a bit surprised that I qualified for the trial given I hadn't considered myself "high risk" for progression given my 11% plasma cell count, 1.6 M-Spike and good cytogenetics.
My next course of action first hinges on determining whether I have bone involvement with my multiple myeloma condition, so I will likely be waiting a couple of weeks for additional opinions on the PET-CT and DEX scan results.He did mention a trial that I might be interested in considering for treating asymptomatic smoldering multiple myeloma patients. This is the E3A06 study http://ecog-acrin.org/wp-content/uploads/2012/10/E3A06_physician_fact_sheet.pdf that is trying to prove out some of the earlier Spanish team's findings regarding proactively treating smoldering multiple myeloma instead of just monitoring it https://myelomabeacon.org/news/2012/09/07/higher-progression-risk-for-smoldering-myeloma-patients-with-high-percentage-of-plasma-cells-in-bone-marrow/ Is anybody on this forum participating in this trial? I was a bit surprised that I qualified for the trial given I hadn't considered myself "high risk" for progression given my 11% plasma cell count, 1.6 M-Spike and good cytogenetics.
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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
Mark wrote:
> Hi Multibilly,
>
> Sorry to see that you have joined the club. It seems like you were
> diagnosed fairly recently. Quite a bit of info was thrown at you in this
> thread. A lot of the posters in the thread have used a proteasome
> inhibitor (bortezomib or carfilzomib) combined with an IMID (Revlimid is
> most common, thalidomide and pomalidomide are also in this class of drug)
> and DEX (a steriod, another steroid less commonly used is prednisone). An
> auto transplant is a high dose of melphalan. Melphalan is in a class of
> drugs called alkylators. The other alkylators we typically use in myeloma
> are Cytoxan and bendumustine. There is one other class of drugs that I
> used that is not commonly used called these days called anthracyclines. I
> used a drug in that class called Doxil during my induction and it worked
> well with Velcade and DEX for me.
>
> Many of the previous posters in this thread have used very long cycles of
> proteasome inhibitor/IMID and steroid. That is generally considered the
> most active combination but IMO it is a very risky strategy. Here is why.
> A recent study showed the outcomes for patients that are relapsed and are
> not responding to these drugs:
>
> "Promising new drugs are being evaluated for treatment of multiple
> myeloma (multiple myeloma), but their impact should be measured against the
> expected outcome in patients failing current therapies. However, the
> natural history of relapsed disease in the current era remains unclear. We
> studied 286 patients with relapsed multiple myeloma, who were refractory to
> bortezomib and were relapsed following, refractory to or ineligible to
> receive, an IMiD (immunomodulatory drug), had measurable disease, and ECOG
> PS of 0, 1 or 2. The date patients satisfied the entry criteria was defined
> as time zero (T0). The median age at diagnosis was 58 years, and time from
> diagnosis to T0 was 3.3 years. Following T0, 213 (74%) patients had a
> treatment recorded with one or more regimens (median=1; range 0–8). The
> first regimen contained bortezomib in 55 (26%) patients and an IMiD in 70
> (33%). A minor response or better was seen to at least one therapy after T0
> in 94 patients (44%) including partial response in 69 (32%). The median
> overall survival and event-free survival from T0 were 9 and 5 months,
> respectively. This study confirms the poor outcome, once patients become
> refractory to current treatments. The results provide context for
> interpreting ongoing trials of new drugs."
> http://www.nature.com/leu/journal/v26/n1/full/leu2011196a.html
>
> A whole 9 months of overall survival once you become refractory to these
> classes of drugs. Long cycles of them can get you resistant to them
> earlier in disease course. The reality is that the Doctors that are
> prescribing this type of therapy have no good therapy to use once the
> patients stop responding to IMIDs and proteasome inhibitors. It is easy to
> just prescribe the 2 best classes of drugs to their patients as soon as
> they are diagnosed. A skilled Doctor has a strategy to keep thier patients
> from becoming resistant to these 2 classes of drugs in the first place.
>
> Mark
Hey Mark, if you are reading this, may I ask just who is your doctor and where he is located? Your comments resonate with me and I'd like to follow through. If you prefer to contact me privately, that is certainly fine.
> Hi Multibilly,
>
> Sorry to see that you have joined the club. It seems like you were
> diagnosed fairly recently. Quite a bit of info was thrown at you in this
> thread. A lot of the posters in the thread have used a proteasome
> inhibitor (bortezomib or carfilzomib) combined with an IMID (Revlimid is
> most common, thalidomide and pomalidomide are also in this class of drug)
> and DEX (a steriod, another steroid less commonly used is prednisone). An
> auto transplant is a high dose of melphalan. Melphalan is in a class of
> drugs called alkylators. The other alkylators we typically use in myeloma
> are Cytoxan and bendumustine. There is one other class of drugs that I
> used that is not commonly used called these days called anthracyclines. I
> used a drug in that class called Doxil during my induction and it worked
> well with Velcade and DEX for me.
>
> Many of the previous posters in this thread have used very long cycles of
> proteasome inhibitor/IMID and steroid. That is generally considered the
> most active combination but IMO it is a very risky strategy. Here is why.
> A recent study showed the outcomes for patients that are relapsed and are
> not responding to these drugs:
>
> "Promising new drugs are being evaluated for treatment of multiple
> myeloma (multiple myeloma), but their impact should be measured against the
> expected outcome in patients failing current therapies. However, the
> natural history of relapsed disease in the current era remains unclear. We
> studied 286 patients with relapsed multiple myeloma, who were refractory to
> bortezomib and were relapsed following, refractory to or ineligible to
> receive, an IMiD (immunomodulatory drug), had measurable disease, and ECOG
> PS of 0, 1 or 2. The date patients satisfied the entry criteria was defined
> as time zero (T0). The median age at diagnosis was 58 years, and time from
> diagnosis to T0 was 3.3 years. Following T0, 213 (74%) patients had a
> treatment recorded with one or more regimens (median=1; range 0–8). The
> first regimen contained bortezomib in 55 (26%) patients and an IMiD in 70
> (33%). A minor response or better was seen to at least one therapy after T0
> in 94 patients (44%) including partial response in 69 (32%). The median
> overall survival and event-free survival from T0 were 9 and 5 months,
> respectively. This study confirms the poor outcome, once patients become
> refractory to current treatments. The results provide context for
> interpreting ongoing trials of new drugs."
> http://www.nature.com/leu/journal/v26/n1/full/leu2011196a.html
>
> A whole 9 months of overall survival once you become refractory to these
> classes of drugs. Long cycles of them can get you resistant to them
> earlier in disease course. The reality is that the Doctors that are
> prescribing this type of therapy have no good therapy to use once the
> patients stop responding to IMIDs and proteasome inhibitors. It is easy to
> just prescribe the 2 best classes of drugs to their patients as soon as
> they are diagnosed. A skilled Doctor has a strategy to keep thier patients
> from becoming resistant to these 2 classes of drugs in the first place.
>
> Mark
Hey Mark, if you are reading this, may I ask just who is your doctor and where he is located? Your comments resonate with me and I'd like to follow through. If you prefer to contact me privately, that is certainly fine.
-
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
not too much on feedback on 1st round treatment, but i have been thru most treatments that are available from metphalen, Velcade, thom.plus anything else they had in the pharm.
i have been under,over.and around every test machine in the hosp. in my new treatment i have been infused with genetically engineered t-cells. it has been a long road of ten+ years
but i still have a hard time when i see young people just starting their treatments having some idea what they are facing and decisions they will have to make.i havehad some of the greatest health care providersin the world. and the finest ocon. but i take heart in that somwhere around the corner a cure will be found and myeoloma will be treated and cured just like polio.
marty
i have been under,over.and around every test machine in the hosp. in my new treatment i have been infused with genetically engineered t-cells. it has been a long road of ten+ years
but i still have a hard time when i see young people just starting their treatments having some idea what they are facing and decisions they will have to make.i havehad some of the greatest health care providersin the world. and the finest ocon. but i take heart in that somwhere around the corner a cure will be found and myeoloma will be treated and cured just like polio.
marty
Re: Looking for Feedback on Recommended First Round Treatmen
Hi Beacon Staff,
This is a really informative thread. I am glad that you took out the misinformative posts early in the thread. They were not helpful. You may find this funny. The author of those posts was unable to discuss therapy issues with me in another forum so she resorted to saying I could not read and needed glasses. What a class act!!! You all do a great job with these forums. It is hard work to keep them going and you all are to be commended for all of the great work you do.
Mark
This is a really informative thread. I am glad that you took out the misinformative posts early in the thread. They were not helpful. You may find this funny. The author of those posts was unable to discuss therapy issues with me in another forum so she resorted to saying I could not read and needed glasses. What a class act!!! You all do a great job with these forums. It is hard work to keep them going and you all are to be commended for all of the great work you do.
Mark
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Mark