I believe that debates are a positive. Readers on this site can view the experiences and input from others who are farther along the road in dealing with the scourge of multiple myeloma. Frequently, questions or debates spark new opportunities for discussion, and based on the thoughtful and respectful input of the participants, others can learn from the process. The "Enemy" is not other posters on an internet site, who might have a different opinion, the "Enemy" is multiple myeloma.
Researching the latest treatment is an important part of dealing with a new diagnosis of multiple myeloma. In the beginning, you are slapped in the face with this, it takes time, and is a learning process. From my own experience, I learned information and facts from this forum regarding dealing with the stem cell transplant process, which allowed me to help my wife in dealing with this. I also learned about different philosophies out there with the approach to treatment, which was an input in guiding some decisions we were obliged to make. Speaking for myself, I would like to give back to others, to the extent I can, regarding education of available options, as others, I feel have done for me. There are many posters who have very civilly and respectfully, without insult, insinuation, or condescension, discussed many issues, though not all. There are many good examples of respectful disagreements and good natured discussions. I would personally like to keep it at that level. HOWEVER;
The idea of thought police slapping other posters around regarding what is "on topic", or "off topic", I find WACKY. OF COURSE, what I said was potentially of interest to some newly diagnosed patients. There are NEW ideas. People want to know are they doing the best for themselves or their loved ones. It is quite clear me from reading the original post and the very title of the thread, that input on the latest treatment options was THE VERY POINT OF THE QUESTION!.
Some of these new ideas are: KRD (high response rate); adding a monoclonal anbitbody to the existing triplet (attacking the multiple myeloma with a "quadlet")s; treat to MRD negativity; add consolidation; add maintenance; go on a clinical trial, if you cannot have access to the existing drugs, pembrolizumab, atezolizumab, optimizing combinations of recently approved drugs, and others. How to incorporate a stem cell transplant. What are the leading doctors, and the leading research centers saying regarding TOMORROW'S PARADIGM? Several cancer researchers have pointed out that leaving the best treatments to end stage cancer, as we do now, is a disaster. We have to push these out faster!
It is important, Jonah, to get these ideas out there, not cover them up! To argue that the treatment options from 5 years ago is what should be used today, is not right. Today's patients in my view have a RIGHT to the best available treatments TODAY, and should not be relegated to yesterday's!
Pointing these out as OPTIONS are good things, things that newly diagnosed persons SHOULD HEAR, SOONER, RATHER THAN LATER. I would imagine that, seeing an option here on the forum, that a newly diagnosed patient, his or her spouse or caregiver, could then research further, and make up their own mind as to what to do, upon discussion with their doctor. I have stated in the past that I am not a doctor so many times that other posters have mentioned I say that too much!
So Jonah, I previously noted that you and I disagree (which we do), I will now point out that you are 100% wrong. My comment was that IN THE US, there are certain NEW OPTIONS, POTENTIALLY available, if not at initial induction, then at consolidation or first relapse.
It is CERTAINLY TRUE that these options are potentially available in the US! To argue the contrary (or to twist the statement, as you did) is simply wrong. And as I mentioned before, suppressing or withholding important information, is not my idea of "sensitivity".
Taking the point one step further, these new options are actually being actively discussed and recommended by leading myeloma specialists. These are not concepts that I have dreamed up myself! I will speculate that, although, I do not know the specifics, that the treatment approach will not be the same in one year; and in two years it will be different than in one year. And if I am right, this will be a good thing for all of the consumers of the forum. Specifically, some of the new ideas, it is speculated could get the MRD- rate much higher, to above 90%! Achieving an MRD- response at initial diagnosis is something that in the past was not realistic, but today, may very will be!!
It does not bother me at all that there are others out there that have a different opinion. That is what makes the world go round. I hope we can both keep our "disagreements" on a more constructive level, going forward.
Forums
Re: Will starting initial treatment preclude other options?
Hi JPC,
You wrote:
You must think the long-term readers and posters here at the Beacon are really "forward thinkers"! We used to talk about things like treating to MRD negativity and using Kyprolis (carfilzomib), Revlimid, and dexamethasone for newly diagnosed patients back in 2011!
An example of each:
"Are CR and PFS suboptimal surrogate endpoints?", Beacon forum discussion started Sep 28, 2011
"Carfilzomib, Revlimid & dex for newly diagnosed myeloma", Beacon forum discussion started Dec. 22, 2011
With regard to "TOMORROW'S PARADIGM", it sounds like "the myeloma thought leaders" are trying to move to what I did in 2010 – combine immunotherapy with the currently used treatments to get to MRD negative status and hopefully cure the patient. As someone who used that paradigm, it can lead to a great result – a long term drug-free remission.
Just out of curiosity, do you have any examples of the "leading centers" USING MRD testing to give the patient a therapy break so they can enjoy the excellent quality of life the DRUG FREE remission period provides? Running the test is one thing, USING the information to make treatment decisions is another.
If you go back to 2011, we discussed more aggressive therapies like I used (7 different classes of therapy in 8 months) and Total Therapy at UAMS that used a 7-drug combo upfront and for consolidation as compared to less aggressive therapies like Kyprolis or Velcade with Revlimid, and dexamethasone, with or without an auto, and single-drug maintenance, etc. "Cure vs. Control" was one of the most popular topics back than.
Can you think of any "new" topics that we were not discussing back in 2011?
Mark
You wrote:
Some of these new ideas are: KRD (high response rate); adding a monoclonal anbitbody to the existing triplet (attacking the multiple myeloma with a "quadlet")s; treat to MRD negativity; add consolidation; add maintenance; go on a clinical trial, if you cannot have access to the existing drugs, pembrolizumab, atezolizumab, optimizing combinations of recently approved drugs, and others. How to incorporate a stem cell transplant. What are the leading doctors, and the leading research centers saying regarding TOMORROW'S PARADIGM?"
You must think the long-term readers and posters here at the Beacon are really "forward thinkers"! We used to talk about things like treating to MRD negativity and using Kyprolis (carfilzomib), Revlimid, and dexamethasone for newly diagnosed patients back in 2011!
An example of each:
"Are CR and PFS suboptimal surrogate endpoints?", Beacon forum discussion started Sep 28, 2011
"Carfilzomib, Revlimid & dex for newly diagnosed myeloma", Beacon forum discussion started Dec. 22, 2011
With regard to "TOMORROW'S PARADIGM", it sounds like "the myeloma thought leaders" are trying to move to what I did in 2010 – combine immunotherapy with the currently used treatments to get to MRD negative status and hopefully cure the patient. As someone who used that paradigm, it can lead to a great result – a long term drug-free remission.
Just out of curiosity, do you have any examples of the "leading centers" USING MRD testing to give the patient a therapy break so they can enjoy the excellent quality of life the DRUG FREE remission period provides? Running the test is one thing, USING the information to make treatment decisions is another.
If you go back to 2011, we discussed more aggressive therapies like I used (7 different classes of therapy in 8 months) and Total Therapy at UAMS that used a 7-drug combo upfront and for consolidation as compared to less aggressive therapies like Kyprolis or Velcade with Revlimid, and dexamethasone, with or without an auto, and single-drug maintenance, etc. "Cure vs. Control" was one of the most popular topics back than.
Can you think of any "new" topics that we were not discussing back in 2011?
Mark
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Mark11
Re: Will starting initial treatment preclude other options?
Hello Mark:
Very well done post. Very interesting information on the arduous process of getting the new treatments approved and actually used (its been five years in the case of the start of the Kyprolis for newly diagnosed patients, and its still not approved). Thank you for posting.
However: You really didn't need to quote back to me what I just said; it was only two days since I said it, I didn't forget it so soon!
Good luck to you.
Very well done post. Very interesting information on the arduous process of getting the new treatments approved and actually used (its been five years in the case of the start of the Kyprolis for newly diagnosed patients, and its still not approved). Thank you for posting.
However: You really didn't need to quote back to me what I just said; it was only two days since I said it, I didn't forget it so soon!
Good luck to you.
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JPC - Name: JPC
13 posts
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