The Cure Panel broadcast to discuss multiple myeloma cure vs. control which was co-hosted by Pat Killingsworth was conducted on October 29, 2012. You can listen to the program at the attached link: http://trialx.com/curetalk/2012/11/listen-here-to-the-myeloma-cure-panel-discussion-with-pat-killingsworth-on-myeloma-cure-versus-control/http
Pat did a great job of pulling out some excellent information from this impressive group of myeloma bloggers, authors, and advocates. All of the panelist are in Complete Remission or Complete Response and have been able to beat the current projections for average Life Expectancy and Survival Rate with Jack Aiello being a 17 year survivor. Some of the major takeaways that were noted by the panel members were as follows:
Jack Aiello's Takeaways:
- Actually Gary, I’m not sure we (at least me) all agree with the headline phrase “Yes, myeloma can be cured...”. It strongly suggest that an MM patient has the option to cure or control their MM and that’s just not true IMHO. What a patient can choose to do is treat their MM either more or less aggressively.
-The four panelists are experienced Myeloma patients sharing our knowledge, views and opinions but none of us are medically trained Myeloma experts. While myeloma treatments continue to expand and evolve, it’s still an open-ended question of which treatment is best for which patient, both in terms of response rates and side effects.
-The best advice we can offer is for patients to get an expert MM hematologist-oncologist as part of their team, either as their primary doctor or via second opinions.
-Patients (and the caregiver) are their own best advocate and it’s important to get educated about their Myeloma via various ways such as listening to these types of discussions, asking their doctors questions, taking advantage of the many excellent webinars & seminars, and sharing experiences via support groups both in person and on-line.
Gary Petersen's Takeaways:
- There is cure, however it is a result of either allo or auto transplants with long term maintenance, and there is control as well, and it is really the choice of an educated well informed multiple myeloma patient. But you must have a myeloma specialist on your team! Jack's first point is well taken, in that high risk patients and highly pretreated patients who are now refractory have a very low probability of either having a curable or controllable disease. This subset of patients is the next hurdle in multiple myeloma care and treatment.
-The general trend in treatment seems to be going in the direction of more aggressive treatment with new drug combinations like VRD induction, transplant, and longer term maintenance therapy. The difference between the standard treatment protocol and that of Total Therapy seem to be moving closer and closer together.
-Older patients may choose the control route, if they believe they will outlive the average life expectancy for someone their age.
The younger healthy patient may choose to go aggressive with a Total Therapy type program, because 10 to 15 years of additional life is not enough for a 30 year old.
-The allo was thought to be too dangerous with a 30 to 50% TRM(treatment related mortality) and as a result only used as a last resort. The exception would be a sibling exact match which has a 5% TRM, and has been known to be curative.
All of the panel members had a multiple myeloma specialist as part of their team and would recommend that all myeloma patients have one on their team as well.
Nick Van Dyk's Takeaways:
- Given that there isn't a consensus about how to treat the disease, patients must unfortunately educate themselves about their options -- the patient must be his/her own advocate, beginning with learning about the disease and different treatment choices.
- It's critical to get a Myeloma specialist -- of which there are 50-100 in the country at most. A run-of-the-mill hem/onc will not provide the same knowledge base to help patients make decisions
- While the data is not yet universally accepted, UAMS does make a case that its Total Therapy cures over 50% of newly-diagnosed patients
- This approach is not without risks, both from short-term TMT and long-term IMID (e.g., Revlimid) use
Priya Menon's Takeaways:
-Having read about myeloma treatments, heard about all your myeloma experiences on Cure vs Control panel and Dr. Hari's panel, in my opinion, a myeloma specialist can do wonders to your case. If I am right, Gary, you have time and again made this point.
-A myeloma specialist and a myeloma specialist treatment center would certainly open up access to latest treatment ideas, clinical trials, and the best in the field.
-The discussion was really good and informative. Especially for someone like me, who continues to learn about various aspects of myeloma.
Pat Killingsworth's Takeaways:
Pat has provided his take on the broadcast at his recent blog post on the Myeloma Beacon. He indicates that in mid discussion he was moving towards the cure approach, however he thought that by the end of the discussion he was back to control. He felt the new drugs and treatments may make control the correct course to follow. He feels that cure will be achieved in this time-frame. You can read his entire Beacon article at: http://www.myelomabeacon.com/headline/2012/11/01/pats-place-how-many-ways-are-there-to-remove-a-band-aid/
Please take the time to listen to this very valuable discussion. What is obvious is that all of the panelists have become their own best advocates, have become educated in myeloma treatment options, and made sure they have the best possible myeloma specialist on their team. And one that matches their educated treatment choices.
God Bless each of your who are on this myeloma journey/ Gary Petersen [email protected]
Pat did a great job of pulling out some excellent information from this impressive group of myeloma bloggers, authors, and advocates. All of the panelist are in Complete Remission or Complete Response and have been able to beat the current projections for average Life Expectancy and Survival Rate with Jack Aiello being a 17 year survivor. Some of the major takeaways that were noted by the panel members were as follows:
Jack Aiello's Takeaways:
- Actually Gary, I’m not sure we (at least me) all agree with the headline phrase “Yes, myeloma can be cured...”. It strongly suggest that an MM patient has the option to cure or control their MM and that’s just not true IMHO. What a patient can choose to do is treat their MM either more or less aggressively.
-The four panelists are experienced Myeloma patients sharing our knowledge, views and opinions but none of us are medically trained Myeloma experts. While myeloma treatments continue to expand and evolve, it’s still an open-ended question of which treatment is best for which patient, both in terms of response rates and side effects.
-The best advice we can offer is for patients to get an expert MM hematologist-oncologist as part of their team, either as their primary doctor or via second opinions.
-Patients (and the caregiver) are their own best advocate and it’s important to get educated about their Myeloma via various ways such as listening to these types of discussions, asking their doctors questions, taking advantage of the many excellent webinars & seminars, and sharing experiences via support groups both in person and on-line.
Gary Petersen's Takeaways:
- There is cure, however it is a result of either allo or auto transplants with long term maintenance, and there is control as well, and it is really the choice of an educated well informed multiple myeloma patient. But you must have a myeloma specialist on your team! Jack's first point is well taken, in that high risk patients and highly pretreated patients who are now refractory have a very low probability of either having a curable or controllable disease. This subset of patients is the next hurdle in multiple myeloma care and treatment.
-The general trend in treatment seems to be going in the direction of more aggressive treatment with new drug combinations like VRD induction, transplant, and longer term maintenance therapy. The difference between the standard treatment protocol and that of Total Therapy seem to be moving closer and closer together.
-Older patients may choose the control route, if they believe they will outlive the average life expectancy for someone their age.
The younger healthy patient may choose to go aggressive with a Total Therapy type program, because 10 to 15 years of additional life is not enough for a 30 year old.
-The allo was thought to be too dangerous with a 30 to 50% TRM(treatment related mortality) and as a result only used as a last resort. The exception would be a sibling exact match which has a 5% TRM, and has been known to be curative.
All of the panel members had a multiple myeloma specialist as part of their team and would recommend that all myeloma patients have one on their team as well.
Nick Van Dyk's Takeaways:
- Given that there isn't a consensus about how to treat the disease, patients must unfortunately educate themselves about their options -- the patient must be his/her own advocate, beginning with learning about the disease and different treatment choices.
- It's critical to get a Myeloma specialist -- of which there are 50-100 in the country at most. A run-of-the-mill hem/onc will not provide the same knowledge base to help patients make decisions
- While the data is not yet universally accepted, UAMS does make a case that its Total Therapy cures over 50% of newly-diagnosed patients
- This approach is not without risks, both from short-term TMT and long-term IMID (e.g., Revlimid) use
Priya Menon's Takeaways:
-Having read about myeloma treatments, heard about all your myeloma experiences on Cure vs Control panel and Dr. Hari's panel, in my opinion, a myeloma specialist can do wonders to your case. If I am right, Gary, you have time and again made this point.
-A myeloma specialist and a myeloma specialist treatment center would certainly open up access to latest treatment ideas, clinical trials, and the best in the field.
-The discussion was really good and informative. Especially for someone like me, who continues to learn about various aspects of myeloma.
Pat Killingsworth's Takeaways:
Pat has provided his take on the broadcast at his recent blog post on the Myeloma Beacon. He indicates that in mid discussion he was moving towards the cure approach, however he thought that by the end of the discussion he was back to control. He felt the new drugs and treatments may make control the correct course to follow. He feels that cure will be achieved in this time-frame. You can read his entire Beacon article at: http://www.myelomabeacon.com/headline/2012/11/01/pats-place-how-many-ways-are-there-to-remove-a-band-aid/
Please take the time to listen to this very valuable discussion. What is obvious is that all of the panelists have become their own best advocates, have become educated in myeloma treatment options, and made sure they have the best possible myeloma specialist on their team. And one that matches their educated treatment choices.
God Bless each of your who are on this myeloma journey/ Gary Petersen [email protected]
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