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Close to a myeloma cure? Depends how you define “cure”

Posted on January 18 2013 by Pat Killingsworth | 2,364 views

Who knew?  Defining a “cure” for multiple myeloma may be as difficult as actually achieving it!  Watch this short Patient Power video and see if you can figure it out…

Andrew Schorr

http://www.youtube.com/watch?v=Mxr2-gFZ2c8&feature=player_detailpage

My friend, Andrew Schorr, does such a good job with these video interviews.  But in this case, I think we needed more.  Dr. Craig Hofmeister and Sagar Lonial explain their optimism for a myeloma cure in the near future.  Or do they?

Yes, As Dr. Lonial describes, we are close to “curing” a 75 year old, newly diagnosed multiple myeloma patient.  Doctors will be able to pump them full of enough drugs to keep him/her alive until they die from something else at age 84.  My younger readers would argue THAT’S NOT A CURE!

I recently heard from a long-lived survivor that is developing soft tissue tumors after years of treatment.  Tumors like these don’t respond well to drugs like Velcade or Revlimid, since both are designed to attack myeloma in the bone marrow.

No problem, right?  Kyprolis or POMALYST (pomalidomide) will save the day, right?  WRONG!  Like Velcade, Kyprolis is a proteasome inhibitor.  And like Revlimid, POMALYST is an IMiD.  MLN9708?  Nope.  A proteasome inhibitor.  Hope drug companies are working hard to help him and his soft tissue complications.  I will do some checking, but don’t hold your breath!

For me, this highlights the flaw in the “cure” argument.  Dr. Barlogie at UAMS says if low risk patients that achieve CR after five years of grueling treatment for at least 3 years are cured.  So be it!  Even if that’s true–and I’m skeptical–that is a very small subset of patients.  What about everyone else?

I have written from time to time that I don’t think curing 10-15% of patients is a “cure.”  Neither is treating a 75 year old man or woman long enough for them to die from something else that may or may not be related to the toll all of those meds have taken on their bodies over the years.

Hematologists are making commendable progress to help keep leukemia, lymphoma and multiple myeloma patients (Like me!) alive for months or even years longer than just a few years ago; the best record in all of oncology.

But what about our brothers and sisters with amyloidosis and MDS?  More and more of us will be developing AML from exposure to years of treatment.  What about that?  Or readers like the one I mentioned above whose myeloma has morphed into something no one knows how to deal with?

So much work and so little time–especially if you are living on borrowed myeloma time.  Wasn’t that a country song?  You remember, Don Williams sang it:

“Living on myeloma time, living on borrowed myeloma time.  I left Oklahoma riding in a Pontiac, Just about to loose my mind.  On my way to California, where the people all live so fine.  Because they were young, rich, lucky and stayed in CR after camping-out in Arkansas for five years, living on myeloma time….”

Getting punchy on a dex day!  Sometimes all you can do is laugh.  I think I’m ready for the weekend!

Feel good and keep smiling!  Pat

32 Comments For This Post

  1. Nancy Shamanna Says:

    Well, it was an ‘upbeat’ video, although being in remission for 10 years after age 65, long enough for something ‘else’ to get you (stroke, heart disease, diabetes), as a definition of a cure, seems a bit odd! Seems that having myeloma and it’s treatments puts one at risk for other problems too, which is the truth of it I guess. Hope you and Pattie do have a nice weekend!

  2. Holt Says:

    Being kept alive by toxic drugs may be as good as it gets for now, and we’re grateful for the extra months and years, but it certainly isn’t a cure whether you’re 35 or 75. As for the song, thanks for the welcome laugh, but don’t quit your day job!

  3. JC Says:

    The video, made me smile to see those cans of Diet Coke…those docs must not have got the memo. :)
    Your song was funny…and we do need humor to walk this walk.

  4. Pat Killingsworth Says:

    I noticed the Diet Coke, too! Pattie and I quite cold turkey last week after I posted the flurry of articles and links. Haven’t had one since. Mmmm. Sounds good though…

    I would have added some notes but I could never read or write music. And I would have/should have posted an audio link but I’m not that clever. Glad you got it!

  5. Ram Says:

    Hello,

    I absolutely agree, curing 10-15% of patients is not a cure, but it is a start! Hopefully, something better will come out of it!

    Ram
    Social Security Disability Help

  6. Susan M Says:

    I’ve enjoyed reading everyone’s comments here, and I agree with you, Pat, a cure isn’t a cure if you’re living on toxic drugs and hoping to stay alive just long enough for something else to kill you. I’m one of the “young” ones who’d like to live to see 60, at this point, and would LOVE to see 70! But just like all our current treatments, we each respond differently, and I am one that saw a plasmacytoma disappear from the top of my head after receiving 4 rounds of Velcade/Thalidomide/Dex. I’m not saying there doesn’t need to be a discovery of something that will do it for everyone, but that’s our “cure” issue pure and simple–it’s got to work for everyone.

  7. Pat Killingsworth Says:

    Thanks, Susan. I can live with the “toxic drugs. But I want there to be something that helps most everyone. TOXIC DRUGS FOR EVERYBODY! CHEERS!

  8. STEVE Says:

    Our current armamentarium of drugs will NEVER

  9. Pat Killingsworth Says:

    Should I try and finish your sentence, Steve? Bet I can!

  10. STEVE Says:

    “Our current armamentarium of drugs will NEVER…” he started to say…”provide us with a cure.” Longer PFS maybe, but not a cure… perhaps a slightly longer OS… but with toxicities that can and will wear down even the healthiest among us. What we need are some MAJOR ADVANCES in gene therapy…then maybe we can talk cure.

  11. STEVE Says:

    Pat, I have no doubt you could have finished that sentence for me! ;)

    Steve

  12. suzierose Says:

    Steve,
    As usually you hit the bullseye! BINGO!

    Ours is a capitalistic society and there is no more in cure. There is LOTS of money in chronic maintenance. Like hypertension, diabetes, osteoarthritis, HIV, etc. Big money making demographics.

    Ninety percent of drug research in this country is funded by the pharmaceutical industry. I don’t think they are funding cures! :)

    Academic centers sometimes hit the jackpot along with NIH, but then big pharma buys the discovery and makes a gazillion bucks on it. Like compound taxol discovered by NIH-NCI original source was the Pacific Yew bark…it is marketed as paclitaxel and effective in lung, ovarian and breast cancers. Our government tax dollars funded the discover but the industry made the profits.

    I do think we are going to see some major advances with the modified viruses as vectors to genetic change our own T cells. That would be really awesome!

  13. suzierose Says:

    ..geez…typing to fast…
    that should read…money in cure.

  14. SouthernYankee Says:

    Maybe North Korea, Cuba, or Venezuela will have a cure soon.

  15. Pat Killingsworth Says:

    For the most part, I agree with suzierose. Except I come at it from a different angle. I think it is the concern about research and production costs (clinical trials, etc) that lead these companies to continue to go down a safe, known path, meaning more of the same (IMiDs, proteasome inhibitors) Any “cure” in our lifetimes (HA! Doesn’t give them very much time!) will be “chronic.” Company(s) that come out with this will make big $$$ without a doubt. Because meds will need to be taken continually. Even modifying viruses or using immunotherapy will need to be ongoing. So no worries for big pharma! And I’ll take that! My new normal isn’t easy, but as I/others often say: “IT BEATS THE ALTERNATIVE!”

  16. suzierose Says:

    Hey SouthernYankee!

    I just love your dry wit! lol….there the thing that bugs me is that they only let us have cars from Japan & Korea and electronics & everything else from China. But when it comes to drugs from say, medicinal mushrooms…nope…we can’t have that….arrrgh….cause big pharma can’t patent it and make money so we don’t even get to use the drugs they discover as effective either.

    I think it is peculiar how we hear nothing about the effective drugs in China for myeloma despite China having the most myeloma patients in the world.

    Just follow the money:

    http://www.visiongain.com/Press_Release/265/'Multiple-Myeloma-Drug-market-will-reach-9-9-billion-in-2015'-predicts-Visiongain-report

  17. SouthernYankee Says:

    Maybe I’m naive but I have faith in my fellow man and feel that researchers and drug companies really are trying to find a cure for MM. I know capitalism isn’t perfect but I don’t know of a better system anywhere in the world. I believe the VERY HIGH standard of living here in the US is due in large part to capitalism. Of course much of today’s capitalism is ‘crony capitalism’ where government decides/subsidizes the ‘winners’.

  18. Pat Killingsworth Says:

    I also believe that everyone is trying hard to find a cure. Never doubt that. The system is skewed to promote quick results, so easier to improve what’s sort of working than start from scratch. No system is perfect. I agree ours is tough to beat!

  19. STEVE Says:

    In doing a little follow-up to the comment made in an earlier posting above that stated, “Ninety percent of drug research in this country is funded by the Pharmaceutical industry.”, I discovered the following in a 2006 study conducted by the Congressional Budget Office.

    Public and Private R&D Spending

    “Health-related research receives the second largest amount of federal support for R&D (behind only defense-related research). That support has been steadily growing for several decades. Research spending by NIH—by far the primary recipient of government funding for health-related basic research—totaled $5.8 billion (in 2005 dollars) in 1970, more than doubled to $12.3 billion by 1990, and reached $28.5 billion by 2004.

    In comparison, R&D spending reported by the members of the Pharmaceutical Research and Manufacturers of America was just two-thirds the size of NIH’s spending in 1980. PhRMA’s R&D spending surpassed NIH’s in 1987 and has remained higher since then, although both grew at similar rates in the late 1990s and early 2000s.”

    According to this CBO study, public v. private funding for drug R&D, as recently as 2004, was $28 billion and $40 billion, respectively. However the $28 billion of public sector funding does not reflect, in this instance, the additional funding from charities and private donations.

    The study continues by extensively describing the economic synergies between private and public R&D which can be a very interesting read for those of us with some economics background. Having worked in the pharma industry early in my working career (mid `80’s) I found this CBO study to be particularly enlightening.

    You can find it here: http://tinyurl.com/ayhutry

    Best,

    Steve

  20. Pat Killingsworth Says:

    A prime example of how we sometimes make assumptions that turn-out not to be true! I know I’m surprised public funded research numbers are so high. Thanks, Steve!

  21. Nick van Dyk Says:

    I am smart enough not to step in an argument over capitalism or some of the other points made here.

    I do want to point out to Pat that the percentage that Barlogie claims are cured is far more than 10-15%. His claim is that about 85% of low-risk patients are cured, and about 85% of patients are low risk. Consequently it’s more like 60-65% of newly diagnosed patients.

    Again, it depends on whether or not you believe his data. Some do not. Others do.

    It’s also about four years of therapy, of which I would only describe about three months as grueling. But one person’s grueling is another person’s necessary evil. I certainly went through a lot of stuff that no sane person would do if they didn’t believe they had to.

    One thing that can be agreed upon by most is that more therapeutic answers are needed for high-risk myeloma, because even Barlogie would readily admit that high risk patients are rarely cured these days (I think he would say 10-20% of high risk patients fare well under his current protocol). If something works for high risk myeloma, it will likely work for low risk and then we’ll all be in much better shape than we are today. For this reason, most of the new research at UAMS is focused on high risk — he doesn’t believe the outcomes for low-risk can really be improved upon relative to what he’s able to achieve with Total Therapy.

  22. Nancy Shamanna Says:

    Hi Nick, These threads about differing treatment methods got so long and heated last fall that it was difficult sometimes to follow them. Do you mind telling me what your definition of ‘cure’ is? Is it a 10 year survival with no relapses…or something else? What is your definition of ‘low risk’…is there anything apart from unfortunate combinations of cytogenetics that contributes to high risk? In theory, I think I am ‘low risk’, but given a diagnosis at stage3, I don’t think that the cancer was caught particularly ‘early’. Because I have responded well to therapy, (which was probably less than 1/2 but more than 1/3 of what the system you have taken is), I did think initially I might be ‘cured’. Now I am more cautious of that prediction! Wish I did have a crystal ball, as long as it gave me a positive prognosis!
    I am not being facetious, since I don’t live in your country and wouldn’t have had access to your clinic anyways, but I am curious about these ‘cure’ definitions. I am sure we all are, since the future of treating this disease is of vital interest to all of us.

  23. Pat Killingsworth Says:

    Hey Nick! I’ll stick by my percentages. If the TT, low risk cure thing is a fact, it will take a decade to convince myeloma establishment of that (wouldn’t that be a darn shame–so many patients that could be cured not getting TT for so long!) and another 5-10 years to implement it. You will be around then, cured by TT–something I was never given the option of doing. But I will be long gone. At this point, right now, my percentages work. But here’s the big thing. The medical establishment doesn’t believe those patients are cured or they would all be doing TT. Must be a reason. Why the skepticism? Don’t know. I know I don’t believe most of them (you are the exception, Nick!) are cured. Like allo patients that are in cR for a decade or more, the myeloma almost always returns. And speaking of capitalism, no one ever mentions the cost of TT. Could that be another factor? To me, biggest reason is docs don’t think their patients can handle such an aggressive therapy–and they aren’t willing to do the work to get it done. Did I miss anything? One last note. I just received an email from a patient that is in the hospital. Bad reaction to Revlimid. A reminder that even if TT is implemented cross-country, many low risk patients won’t be able to follow protocol. Either can’t afford it, can’t tolerate it, or have co-morbidity factors that don’t allow it.

  24. Nick Says:

    Hi Pat!

    To be clear, I was only trying to call attention to Barlogie’s claims, since they have a much higher percentage of those considered ‘cured’ than 10-15. Many in the medical establishment do not place much faith in these numbers for a variety of reasons. I didn’t want to make this an argument about whether or not TT works — I was only trying to clarify the percentage that Barlogie claims are cured.

    As for the definition of a cure, it means dying of something other than Myeloma. :) I do happen to believe that it also means beinf free of Myeloma and off Myeloma meds until such time as one dies of something else, and that is how Barlogie defines it. So it would not include indefinite maintenance to keep a stable but manageable level of the disease in check.

  25. Nick Says:

    And Nancy, just to answer your other question, in Barlogie’s assessment of risk, 80 genes are looked at which relate to various chromosomal abnormalities. It is his contention that this is a far greater level of detail and much more accurate than a FISH test, as an example.

    Risk is not related to stage. One could have a high risk disease at an early stage, or a low risk disease at a later stage, and the timing of when treatment begins usually shouldn’t have much impact in treatment outcome — it’s more a matter of bone damage being done in the meantime. Of course high risk disease by its nature if often more aggressive and can move through the stages more quickly.

    I am not claiming Barlogie is right or wrong on this page, by the way. Others can decide if they believe his numbers or not.

  26. Pat Killingsworth Says:

    No worries, Nick! I may be a bit more generous with my definition of “cure.” For me, indefinite maintenance should qualify as long as it keeps us alive. I like yours better, though!

  27. Pat Killingsworth Says:

    For me, it isn’t about “believing Dr. Barlogie’s numbers.” I’m just not sure I’m buying that if a patient is in CR for three, four or even ten years that means they are cured. Only time will tell. But I would love to/am looking forward to joining the ten year club!

  28. Nancy Shamanna Says:

    Thanks Nick for your detailed replies! That is the great think about the computer media age we live in too…to be able to communicate with others this way. Hope you are well!

  29. STEVE Says:

    Although I hope I’m wrong, I believe it’s unlikely that any of us will see an conventional “cure” in our lifetimes…more likely the best we can hope for in our is ongoing maintenance until we die of something else, which in many cases will be related to the gradual impact of the maintenance drug toxicities. Remember, given the heterogenity of MM, both within the patient population AND within the patient, MM has a seeminly endless ability to adapt and evolve….we’re going to need gene therapy to ultimately get at this nasty disease and sadly we’re at least several years away from that capability. But together, let us hope!

    Best.

    Steve

  30. Gary Petersen Says:

    Pat, Deja vu, all over again! My definition has always been that cure is when the average myeloma patient at any age who outlives the life expectancy of the average American(USA) of the same age. For example a 70 year old American is projected to live to be 84 based on the Social Security life expectancy tables. Should the average myeloma patient(the average is now 70) lives to an average age of 84 years + 1 minute, that is cure to me. For Nancy, you would have to substitute Canadian for American. When we all finally kick the bucket, we are usually on some form of treatment for diabetes, heart disease, a more normal form of cancer(prostate or breast), blood pressure, et al. Catch everyone next time around! Best Regards and may God Bless our community myeloma journey/ Gary Petersen

  31. Pat Killingsworth Says:

    Seems like a reasonable definition of a cure, Gary. With or without a lot of meds along the way, I can accept that…

  32. Nancy Shamanna Says:

    Statistics Canada gives life expectancies of 79 from men and 82 years for women, for the data from 2007-2009. That’s a good definition Gary, and it’s true, the older we get, the more health problems we can expect to have. In my sixties now (yea! for I almost didn’t make it out of my 50’s), I do have lots of friends suffereing from various ailments, and many take medications for those too. Think high blood pressure, Parkinson’s, diabetes, heart problems and more. So I don’t really feel out of place having health concerns too, in my age group.

    So, we live in good societies, where we have good medical systems, and just have to try to cope up .. I am not going to spend a lot of time worrying about it anymore, since I have a lot to do right here in the present. Thanks for all of your thoughts on this, since it helps to ground me and it is reassuring to know we are in good company. Best wishes to all…hope the whole year of 2013 is a good one!

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