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We Need To Be Open & Honest About All Multiple Myeloma Therapies–No Matter How Radical Or "Out There" They May Seem!

Posted on February 22 2010 by Pat Killingsworth | 931 views

I have been recieving e-mails about Saturday’s Total Therapy post. Actually, I am starting to hear about and learn about many different forms of alternative multiple myeloma treatments–some minor “tweaking” of conventional “standard of care” type therapies–some all out, radical, kamikazi style protocols. Most who correspond aren’t willing to go “on the record” and let me write about their experiences–probably because they are reluctant to be exposed to ridicule. That’s unfortunate! How are we to learn if we don’t explore all available options–no matter how radical?

I will share these testimonials whenever I can–and I encourage my readers to do the same!
Feel good and keep smiling!  Pat

2 Comments For This Post

  1. Nick Says:

    Hey Pat!

    I do feel compelled to make one correction to the Total Therapy post — I bet you were waiting for me to pop by! 🙂

    Joking aside, one observation and one potential correction. Remember, first, that the cure rate for low risk myeloma is MUCH higher than the cure rate for high risk myeloma (15% of newly diagnosed patients). Also, of the 60% that achieve CR under Total Therapy, the cure rate is higher still (87.5%). On a blended basis, across all newly diagnosed patients, it is 55%. I have written on my blog and elsewhere that if one has high risk myeloma, I think the jury is out whether it's worth the hassle of the tandem transplant when it may or may not be any better than new drugs.

    Now, as to your statement that "five years means nothing", I'm sorry but that simply isn't true and I think it's important enough to correct it. Going back fifty years, to studies at St. Jude for childhood leukemia, the recurrence curve flattens out. That means that at some point (in childhood leukemia it is around five years, in MM it's more like six years) the likelihood of recurrence is very, very small.

    Put another way, a patient might have a 30% chance of recurrence in the first five years, and after that a 1% chance. That's close enough to cure for me.

    Going back to the first Total Therapy program, which used only old fashioned chemo cocktails plus the tandem transplant, there is about 20 years of data. The "cure curve" flattened out at around 10%. Meaning with that program, only about 10% looked like they would be cured. But these patients are now 20 years out with no recurrence.

    The second Total Therapy program involved Thalidomide, and I believe the cure curve is more like 30%. This data is only about ten or so years old, but those people aren't getting the disease any more.

    The current Total Therapy program is now five years old. The curve is flat at that point, just as it was with the other Total Therapies. In ten years' time, we will see the same dynamics.

    This is more than just sustained, temporary remission. This is a totally different approach to the disease.

    Why do others not talk about it more? I can tell you what I was told by the very best and brightest non-transplant doctors. Some are concerned about long-term damage to bone marrow. In twenty years of data, they have not seen this in Little Rock, but it is a valid question. Others are concerned about the potential long-term leukemic affects of some of the chemo agents used. Again, there is no data to support this but I understand where the question comes from.

    Most of the non-transplant doctors are still looking for a cure that is MUCH less invasive than tandem ACST. It will be a wonderful day when a Gleevec comes around and Little Rock is put out of business. And these doctors don't want to detract from their mission — there is ego at work, funding, availability of patients for clinical trials, etc. PLUS philosophy. Doctors, also, are not gods. I've had dinner with some that are educated but very simple-minded when it comes to this stuff — even ignorant. And that's from hematologists! Some people think it's "inconvenient" to have to move to Little Rock for six months. Hell yeah, it is! But this is a disease that claims a LOT of lives…there's very little less convenient than DEATH. 🙂

    Anyhow, that's enough babbling out of me. But you, and your readers, should understand that five years of remission from Arkansas is a path; five years of remission elsewhere is a happy accident. The likelihood of recurrent Myeloma after Total Therapy and six years (say) of remission is extremely low; the likelihood of it recurring after other therapy remains high.

  2. Pat Killingsworth Says:

    Hi Nick-
    Gee, I thought I was being "fair and balanced" while dealing with this subject! Hey–five years isn't "nothing," especially for those who are fortunate to be experiencing it! My point was just the five year mark isn't as significant for myeloma patients as some other cancers. Read Tuesday's post and go to Dr. Rajkumar's article about "cure vs control." For a concervative Mayo Clinic doc, I thought this was a breakthrough. Wednesday I am writing about how we all need to stop arguing over symantics. You are passionate, but civil. As we both know, that isn't always the case when dealing with these life and death issues. I will take the time to "call you out" and disagree with your last point: You write: "The likelihood of recurrent Myeloma after Total Therapy and six years (say) of remission is extremely low; the likelihood of it recurring after other therapy remains high." Not true! Novel therapies like Velcade and Revlimid are extending most otherwise healthy myeloma patients lives well past the five year mark. It's a win/win! Patients are living longer, no matter which informed therapy decision they make! The key is to get more aggressive options out there so patients can make up their own minds. That is why articles like "Cure vs Control" or the most recent Total Therapy article in the Myeloma Beacon, or comments like this or blogs like yours are so important! Thank you for your contributions to this important debate! Pat

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