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Arkansas Rebuttal – My Thoughts

Posted on November 30 2009 by Pat Killingsworth | 599 views

There is no right or wrong answer here, and there certainly isn’t anything wrong with attacking myeloma and being aggressive with one’s therapy. Likewise, making a decision to choose a less invasive, more conservative therapy approach is OK too. The important and exciting news is that myeloma patients have therapy choices!

That’s great! But patients and their physicians also need to remember that the choices each of us make have consequences. Following a conservative approach may delay an invasive and potentially dangerous procedure like a stem cell transplant, for example. But what if the Total Therapy approach is correct? What if by not hammering the myeloma early, hard and often, a patient blows the chance of a longer event-free survival or even a cure? Likewise, what if an aggressive approach leads to serious complications? Or, buy exposing the myeloma to all of the available drugs from the start, there aren’t any viable options to use if and when the myeloma returns, resistant to those drugs?

The oh so frustrating point I am trying to make is this: MYELOMA RESEARCHERS DON’T HAVE THE ANSWERS YET! They can’t be sure which approach is going to work best, and we won’t know for at least a decade. For now we are all just guessing. But don’t despair! Dr. Rajkumar from the Mayo Clinic recently concluded his presentation to a large group in Minneapolis by reminding the audience that “At this point there are no right or wrong therapy choices.” His point: Keep trying different therapies until you find one that is working, then stick with it until it stops. The important thing is that we are all trying something–doing something–and it is working–even if only for today!
Feel good and keep smiling! Pat

3 Comments For This Post

  1. Nick Says:

    Well said, Pat. Let's take a step back: ten years ago, the outlook for people with this disease was truly despairing. Now, we have one doctor who believes he can cure people, and we have a host of other doctors saying "maybe, maybe not, but we've got a bunch of drugs that can prolong life without all that trouble." This constitutes a HUGE improvement in the outlook for people with our diagnosis, and all the work that is being done on novel agents will only improve the situation. With all this in mind, the important thing to keep focused on while we debate the merits of different approaches is that there is more hope than ever for someone confronting this diagnosis.

    Thanks for continuing to post thought-provoking commentary. I hope you are enjoying New Orleans!!

  2. Sean Murray Says:

    Hello, Pat.

    Thank you for your interesting, thought provoking and IMPORTANT blog. I have received much benefit from your hard work.

    I am one of seven Myeloma patients in my small, southwestern Missouri town of 2000 people. Scary numbers, hunh? Four of us are transplants (pardon the pun) to the area in the last five years, the rest are longer term residents. On face value, I don't have much in common with these guys – except Myeloma. I would have perferred to have met them at the Rotary Club.

    I am 50 years young, newly diagnosed in Nov. 2008 as low risk and IgG kappa. My local doctor quickly funneled me to Arkansas, but I took a deliberate look at Mayo, MD Anderson, Dana Farber, etc. and armed myself with as much information as I could digest to make sure that I made a reasonable decision.

    I chose to go through Total Therapy 4 at UAMS and am currently in CR. This week I will take my 4th of 156 weekly chemotherapy treatments (Velcade/Dex/Revlemid) in the 3 year maintenance portion of the plan. I'm feeling pretty darned good.

    Of the seven MM patients in my area, three of us are being treated in Arkansas and four have been treated elsewhere. All but one patient is in CR. It's obvious to me that there is more than one way to skin a cat in Myeloma treatment. As the years tick by, I suppose we'll all learn the value of our individual decisions.

    As in everything, good information is key.Thanks for exuberantly and intelligently helping us to see the options on the table. You are making a positive difference in the Myeloma world. Thank you, again.

    BTW- Nick and I met at UAMS during recovery from a stem cell transplant. He's an extraordinary guy. I listen to him with both ears!

    Cheers and great health to you.

    Sean M.

  3. Pat Killingsworth Says:

    Wonderful comment, Sean! So, so glad you are doing well! It is scary, isn't it, that so many myeloma patients could be found in such a small town? Does make you wonder if there may be enviornmental triggers or causes too subtle for us to identify at his time. E-mail me with your progress sometime, would you please! Sounds like we have a lot in common! Pat

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