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What About The Patients That Aren’t Doing So Well?

Posted on October 10 2009 by Pat Killingsworth | 54,880 views

I want to take a time-out today and stop and remember the patients that aren’t doing so well – that aren’t responding to Revlimid, or Velcade, or who suffer a re-lapse after only a few short moths or years after undergoing a painful and risky stem cell transplant.
Patients like Rebbecca from a suburb of Tampa, Florida. Rebbecca has already lost kidney function and is undergoing renal failure from the effects of multiple myeloma. She has very little bone involvement and her bone marrow numbers are good. Unfortunately, since her kidneys are already damaged, her doctors don’t feel they can use Revlimid or Velcade, so she is forced to endure a chemotherapy treatment of Cytoxan, will probably loose her beautiful long hair, just in time for her transplant. (Where she probably would have lost the hair anyway) Yuk! Then there is my friend Karl, who is allergic to Revlimid and Velcade. And what about Ardy, a delightful, thoughtful young woman who, while undergoing her initial chemotherapy prior to transplant, suffered a reaction with an anti-fungal medication she was taking and is now legally blind. Survivors like Nick and I should stop and remember that all myeloma patients don’t respond as successfully as we have to therapy. That some are already sick or have other pre-existing conditions which take away the hope of using optimum therapy options. We should remember the average myeloma patient is still 68 years old when they are diagnosed and, what works for someone under fifty in relatively good health, may not work for a 74 year old with high blood pressure, arthritis ;peripheral neuropathy or drug allergies. Still, our philosophical debate is too important not to explore. I have written in the past about the added complication newly diagnosed myeloma patients are forced to endure. Options. Therapy options. Lots of them. You have just been told you have cancer. You aren’t thinking straight. You don’t understand the ramifications of your diagnosis. You don’t have enough information to make an informed decision. All you want is for you doctor to tell you what to do and get started. But this is the wrong way to proceed after a diagnosis of multiple myeloma. That is why our debate is so important. Because the initial therapy choices a patient makes today can effect their quality of life and life expectancy later. Complicating all of this: NO ONE KNOWS WHAT THERAPY WORKS BEST! KNOW ONE KNOWS WHEN THE BEST TIME IS TO USE VELCADE OR REVLIMID OR GET A STEM CELL TRANSPLANT. The docs are all just guessing! Nick’s physicians are guessing. My Mayo team is guessing. A patient’s oncologist somewhere in central Indiana is just guessing. They read something. They try something. Then they try again. A patient moves, dies, changes docs. Did the therapy work? Why? For how long? WE DON’T HAVE ENOUGH INFORMATION! IT IS SO FRUSTRATING!
So feel good, keep smiling and take time to remember the patients who aren’t going to make it. Feel good, keep smiling and hold on to the hope that your oncologist will guess right and you will live to fight another day! Pat

2 Comments For This Post

  1. Elizabeth Says:

    Wow! That is a great essay. Thank you for remembering us. My husband and I are taking it a day at a time now… but we are grateful for each day.
    Thank you.
    Elizabeth

  2. debbie Says:

    I really enjoy your site Pat. I was diagnosed with Multiple Myeloma late June of this year and am undergoing Velcade treatment at Dana Farber. Obvisouly I am very scared but hopeful that my Dr. Will have made the right decision of stem cell collection and bone marrow transplant. I see on many sites so many patients that have to have more than one operation and it makes me wonder why, Thanks for helping all of us with MM.
    Debbie

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