Wednesday, December 23, 2009

Delayed update!

Happy holidays to all of you -- I'm sorry to take so long with this but I am happy to report that I am very busy at work! :)

Quick highlights:

* I got rid of my cold on the 21st day. That's a LONG time to have a cold. Longer than I ever want to have one. I'm looking askance at my bottle of Revlimid right now...but in the grand scheme of things, I'd rather be alive with a cold than dying from cancer, so once again, not much to complain about.

* I am still in complete remission. The visit to Arkansas in four weeks will hopefully indicate improvement in the MRI as that is really the last piece before BB will be relatively confident in saying that I am cured.

* Arkansas just presented its most recent data two weeks ago at the ASH conference in New Orleans. Of those newly-diagnosed patients who reach complete remission, NINETY PERCENT remain in complete remission FIVE YEARS OUT. The plateau in the recurrence curve is reached by then. That means a "cure signature" of about 90% -- pretty remarkable. I'm on the track and will hopefully stay there.

In light of this, it occurs to me that what is most important now is not so much the data coming out of Arkansas -- but the data elsewhere. I do believe Arkansas can cure the majority of newly diagnosed Myeloma patients. The issue is now: what can be accomplished without going through all that? We don't yet fully understand just how powerful Velcade and its derivatives are. Hopefully everyone with this disease will enjoy a very, very long remission!

Happy holidays once again, and I will be posting more in a few days!


  1. Hi, Nick!

    Great post - always good to hear from you. It was intersesting to learn of your musical endeavors - rock on, Renaissance Man!

    My apologies, but please allow me to vent. I've never had a local oncologist look at me. I was initially diagnosed by a very in-tune D.O. and, in a whirlwind of two weeks, decided to check out Mayo, MD Anderson, Sloan-Kettering, Dana Farber, etc. I chose UAMS because I felt it was a better fit for me. This morning, before having my 7th maintenance chemo (VDR), I met with the local onc/hematologist, from China, to introduce myself and let him know what I was doing at his infusion center. He proceeded, in a surprisingly unveiled manner, to let me know that Arkansas was brutalizing me and that no where else in the world would treat me in such a callous manner. I greatly appreciated his honesty and educated opinions, but Sheeeesh!

    I'm 51 years old, have two children to raise (both adopted from China, it threw the doc for a loop when I spoke to him in Mandarin), a wife I love and want to grow old and cantankerous with (and be there for her as much as she has held me up through this MM mess) and a career I'm itching to get back at. And, oh BTW doc, I'm in CR, M-spike at 0.0 for six months in a row and I am feeling a thousand percent better than when I was diagnosed in Nov. 2008. I thought this was good news?!

    Is UAMS the best bet for everyone seeking a cure? Probably not. But I am seeking a cure and the program is working for me - and obviously for you, Nick. I don't have any delusions - I chug through the peer-to-peer journals with a medical dictionary, read the abstracts, visit the official websites, talk with professionals smarter than I will ever be and understand that the 'cure' word is avoided like a plague. I pray that the next several years continue to be favorable for all of us in this battle with MM- no matter where treatment is being sought. If things go south we'll adjust and hit it head on. Nothing like hindsight to figure out just how smart we were. Never give up, right?

    I love the tact that guys like your cyber-pal Pat Killingsworth and his highly informative blog take - wish there were more like him out there. He may not agree with a certain position, but his presentation is constructive, edifying and hopeful.

    In the meantime, I'm not letting anybody pee in my Christmas Cheerios. Last Christmas Day I had two sessions of chemo, tremendous pain from collapsed vertebrae and didn't know if I was going to see the the next Christmas.Right now, life is good!

    Anyway, keep going strong, Nick. You have a lot of important things yet to do. Thanks for

    Blessings to you and yours, my left coast friend. 2010 is going to be an incredible year!

    Sean M.

  2. Sean -

    Shoot me your email when you get a chance -- mine is artisannvandyk at earthlink dot net. Would love to chat about this offline.

    Short strokes of it:

    *I am so happy your therapy has gone as well as mine has!!!

    * I have yet to hear a convincing argument from anti-Arkansas people for patients in our age range. All they can say is "Velcade might work really well." Well, it might, but we don't know. And the leading non-transplant guy in the world, Ken Anderson, told me personally that "we aren't there yet." So that's good enough for me. If your local onc was a jerk about it, get a new one. My original local hem/onc was a great guy but didn't believe in maintenance therapy, so I found one who BB knew who would carry out maintenance therapy. I want somebody who believes in that they are doing for me.

    Everybody would like to see BB go out of business -- meaning other less drastic treatments achieve a cure -- but that might be 10 or 20 years out. Meanwhile, the WORST that might happen is you and I will need further treatment with the next-gen versions of Velcade and Revlimid, both of which are already available for refractory patients, and that's in all likelihood where we would have been ANYWAY had we not gone to Arkansas. So I'm very comfortable that we made the right choice.

    It's not the right choice for everybody, as I have taken pains to note time and time again. But for a young, previously-untreated patient, I have to imagine this is EXACTLY where the should go as it gives them a 74% chance of being cured!

    Merry Christmas and Happy New Year to you and your family, my friend!



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  4. Nick Great post! It is fabulous news isn't it! Dave is doing GR8 and he feels that the "brutalizing" treatment (as Sean's Onc said) was more than worth it for the projected outcome now in his future. He only has to recover more from the fatigue and begin to get his body back. Remember he WORKED all the way thru his brutalizing treatment! I know its not like that for everyone, but he was 48 at dx and had no other health issues. Aggressively attacking the problem was definitely the way to go for us. It is really awesome though to keep seeing the data coming out, that for now, shows its still the right choice for us. Moving to a less aggressive approach with same results down the road will be great, but we did not have that choice.

    Merry Christmas Nick! Glad you continue to do so well!


  5. Great post St. Nick!

    Did you get a chance to see the results of the RVDD clinical study that I am in that were presented at ASH? The results show adding Doxil (yes, yet another chemo) may be statistically more effective in achieving VGPR/CR than VRD.

    I find it interesting that I chose to be treated by Dr. J at U of M (UMHS) and I am ending up on what may be an even more aggressive emerging protocol!

    I think what may help the discussion is removing the boundaries that surround what is considered Arkansas protocol versus what everyone else is doing. I think the science is moving very quickly and there seems to be an openness and sharing going around with some of the major figure heads who are pushing for better results for us MM survivors and the newly diagnosed.

    I liked your point, "In light of this, it occurs to me that what is most important now is not so much the data coming out of Arkansas -- but the data elsewhere."

    At the age of 29, although I am hopeful that this aggressive therapy will bring about a CR that will lead to many years of remission and a possible cure; I am hopeful that there is a much easier way to get to this place :)

    Merry Christmas to you guys and thanks for keeping the discussion going!


  6. I found the following article on UAMS's website to be weird. They say that MM in incurable: