Tuesday, November 3, 2009

Quick blood results, and HURRAY FOR TOTAL THERAPY!

Very quick update, as I've been busy with a wonderful visit from my brother Pete who was kind enough to visit me in Arkansas during far more dire times. It's great to spend time with him while healthy!

At any rate: quick and uneventful visit to the doctor's today. Counts are good! White count is 5.1, hemoglobin 13.9, platelets 140. Solid in all respects, and in the event of the WBC and platelets, a tick up. Hemoglobin can be reduced due to water retention from the dex, which I took this morning, so I'm not concerned about that too much.

No news on protein or other stuff...probably not for another two weeks.

Now...I know we have had a bit of back-and-forth on Total Therapy on this and other blogs recently. I want to restate my beliefs very clearly:

1. For newly-diagnosed patients that have not undergone other treatment, and who are young and healthy enough to withstand it (i.e. 40 and healthy = a good candidate, 78 and sick = not a good candidate), this program is the right choice. Clearly, as I'm about to explain.

2. 15% or so of patients have high-risk disease which is not as responsive to Total Therapy as the other 85%; and some people are allergic to one of the three long-term agents (Velcade, Revlimid and Dex) that are used over a period of years as part of the TT protocol, so it is not for everybody -- just for newly-diagnosed young patients that are low-risk.

3. For folks that have been treated elsewhere, or who have high-risk disease, there is still hope from new treatments and new research. Total Therapy is not the answer for everybody.

Now..having said that, let me just cite a few statistics from the recent briefing I received from Arkansas.

1. NINETY PERCENT of low-risk patients in Total Therapy 3 REMAIN IN COMPLETE REMISSION AT FIVE YEARS. Compare this with American Cancer Society statistics stating that five year survival is 34%.

2. After five years post-diagnosis, the likelihood that a random person in Total Therapy 3 is still alive is HIGHER THAN THE AVERAGE FOR A US CITIZEN OF THE SAME AGE.

3. Statistics being built over five years indicate that SEVENTY FOUR PERCENT OF LOW-RISK PATIENTS UNDER TOTAL THERAPY THREE WILL BE CURED OF THE DISEASE. Compare with other programs that still claim it is incurable!!!

4. The median survival rate of patients under Total Therapy 3 is projected (based on statistics) to be FIFTEEN YEARS. The median age at diagnosis is 71. Do the math: people are being cured and dying of something else!

5. Ultimately, these and other data allow Arkansas to publish the following statemenst: "Cure is anticipated for the majority of genomically defined low-risk myeloma." And: "The newly diagnosed multiple myeloma patient can expect to live more than 10 years." Where else in the world would this statement be true?

I reiterate: I will beat this disease. Any others out there reading this, if you are newly-diagnosed, without drug-resistant disease, and in good health: go to Arkansas. Go there. Get Total Therapy. Keep a positive attitude. And be thankful that you were diagnosed early enough, and in a position, to receive this type of treatment. We are unlucky to have this diagnosis, but we still only represent about a third of patients seen there. I've met, and become friends with, a great many good people who were not so lucky...some of whom are no longer with us, some of whom are resilient and upbeat in the face of their disease. BB is a scientific atheist...so I will save my prayers for those that aren't able to receive the full benefit of BB's program. The rest of you: get there!


  1. Nick, you are positive and confident with the treatment you have chosen. This alone will increase your quality of life.

    Concerning the statistics you have cited from your recent trip to Arkansas. In number 1 you are comparing a low risk myeloma patient group receiving TT3 with the total myeloma patient group. Are there any clinical trials with low risk myeloma patient groups receiving some of the other treatment programs to compare with?

    I am not sure what number 2 is saying. I think it means the average health of the general population is pretty poor which is not surprising. You are saying that the low risk myeloma patients that have TT3 treatment will outlive the average population, amazing. I think this says more about the health of our general population than this myeloma treatment method.

    In number 3 I am not sure how 5 years of statistics can prove something beyond 5 years. If you live 7 years beyond start of treatment and die of another cause is that a cure? But, you would need more than 5 years of statistics. I assume the 5 years may be the collection period and it includes patients with more than 5 years of data. Do you know what percentage would be for one of the other popular treatment methods with low risk myeloma patients?

    In number 4 are you saying the average age at diagnose of low risk myeloma patients receiving TT3 are 71 years old. I thought it was the young and healthy myeloma patient recommended for this treatment method.

    I hope you have continued success with your treatment. My wife's oncologist told her she was not a candidate for even just one auto stem cell transplant due to her general health and her negative reaction to some of the chemos she has had. Concerning quality of life I tend to agree with him. However, just being told this takes away from quality of life.


  2. Jerry -

    Thanks very much for your comments and questions. I'll answer them as best I can, understanding that I'm just a patient (albeit a pretty educated one) and neither a doctor not researcher. Regardless, I certainly hope that your wife benefits greatly from whatever treatment option she chooses. If she is in poor general health, a stem cell transplant might not be the right way -- has she seen another specialist for a second opinion, at the very least?

    Let me do a new post to clarify, since at least one is helped by a graph and I can't post those in follow-up comments!

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