Wednesday, March 10, 2010

Reved Up

Sue started on Revlimid (thalidomide/lenalidamide) Monday night.  She is getting the highest daily dose they make, which is 25 mg.  They dose her one time a day at night, because the stuff wears you out and makes you tired.  The high dose Dexamethasone treatments (40 mg/day, administered at 10 mg every six hours) started over the weekend.  This combination of drugs, known in the myeloma medical community as "Rev-Dex,"  is now commonly prescribed for myeloma patients who've had at least one prior course of chemotherapy with a different drug than Revlimid. The FDA has only conditionally approved the use of Revlimid for patients who've had at least one other drug therapy.

Everything now hinges on whether the Rev-Dex combination will bring the myeloma under control again, and if so, for how long.  They will be testing Sue's blood to see if the cancer goes back into remission.  Myeloma is one of the cancers for which there is not really a cure, so a typical history of treatment, or management of the disease, is drug therapy to bring the cancer into remission or partial remission, followed by an inevitable relapse, followed by more drug therapy, and so on.  The patient's prognosis for long-term survival usually depends on the amount of time they remain in remission.  According to an aritcle in Wikipedia, median survival for myeloma patients is 50-55 months.  I have seen other articles indicating a lower median survival time of approximately 3 years, but those articles may have been based on older studies.  Some patients remain in remission for years. In Sue's case, she has never remained in remission for more than a couple of months following any course of therapy, and her current symptoms are rather dramatic.  I believe that is why the doctors are not optimistic.

The Dexamethasone has brought up her energy levels and puffed her face back up.  The Revlimid will now knock her energy levels back down.  The potential side effects of Revlimid are many.  One negative side effect, birth defects, is a non-issue for Sue.  The most common and potentially most dangerous is blood clotting.  One of the questions Sue asked Dr. Wolf in our initial meeting with him was, what does death from Multiple Myeloma look like?  My recollection of his answer was that it would be a slow wasting away and that eventually some of her internal organs would stop working.  We remain hopeful but grounded.  We are investigating hospice care options.

The one drug that has the best effect on Sue these days is endorphins, and she gets them from the many visits, phone calls, cards etc. that you have been giving her. She is not reading her emails lately, so that is not the best way to communicate with her.  You all have been so kind and shown so much love that, notwithstanding her crummy circumstances, Sue's cup is running over.

12 comments:

  1. What a hard road you travel! Up and down and around so many twists and turns. I guess that's why God only gives us one day at a time, because that's all we can handle... "good" days or "bad" ones. Even if we had all "good" days, we'd overdose and wouldn't appreciate them, anyway. ;)

    I'm glad there are at least some "ups" in your road... and that Sue gets a regular dose of those precious endorphins. Give her a hug from me, okay? I know... neither of you even know me... but I just feel like hugging her, anyway... your whole family, in fact.

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  2. I join the many who are praying for a positive outcome of the Rev-Dex combo. Like Grandma G, you don't know me, but I want to let you know that I belong to the group that might be identified as the "UPs" - Unknown Prayers.

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  3. George and Sue, I am so glad they have started treatment. I finished your blog and Sue's blog from the beginning last night and than started praying the Rosary for the both of you. How I wish I could do more.
    I agree with Sandy above; I believe there are many unknown prayer participants for you and Sue.

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  4. The Greenchair GuyMarch 10, 2010 at 2:46 PM

    How incredible it is that George is willing to spend the time to keep us informed and up to date on Sue's condition. Thank you, thank you.
    We, in turn can have something very specific to pray about each day. I know for a fact that our very Personal Savior is listening and interceding as we pray.
    We love you both.

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  5. Susan, George,Jessica and Valerie,
    I am praying for you. Thank you George for keeping us informed.
    MaryLyn

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  6. I love Sandy's comment about the UPs group. I thought I could be in that group too and then I thought, wait a minute I'm a "known prayer". So I guess I'll do K.P. duty! Ha! Love and prayers, Janice

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  7. Amazing that a drug related to one that brought so much pain to parents over birth defects might be the one that helps Sue.

    Good luck with the treatment, I hope it brings some relief.

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  8. George, Susan, Jessica & Valerie
    My heart goes out to all of you. You have all been so courageous and Sue is putting up such a great fight. Your faith and humor are amazing. You are in my thoughts and prayers daily.

    Love and hugs and kisses.
    Aunt Polly

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  9. Throughout each day and into every evening you all are in our minds and prayers up north here. For months now, several groups of Christians up here have been praying regularly for Sue and your entire family.

    We send our best love and encouragement down to our courageous Sue, her loving George, and precious Jess and Val. We pray that God would pour His abundant mercy and comfort onto you.

    -- Cyndi, Wade and the girls

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  10. I hope Sue will respond beautifully to the rev/dex. Rev is a miracle drug and is doing wonders for pateints, and it will do great work for Sue. Hang in there, the sun will shine!

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  11. When I read your earlier posts, I thought you had exhausted all the drug possibilities. I have heard good things about the power of Revlamid. I hope it buys you more quality time together.

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  12. UNTIL WE MEET AGAIN

    In the silence of your slumber
    There's a low-lit burning fuse
    Your journeys almost over
    And you've paid your final dues

    Your sun will now be setting
    From a view I cannot see
    A prism of crystal colors
    That plays a beautiful symphony

    You'll finally have the option
    To soar on the eagles wing
    To fly from near the mountain tops
    Down to the nearest stream

    No more burdens of this life
    You'll not find them around
    You'll finally be released
    Of the chains that held you down

    And I won't hold you back
    Being selfish with my tears
    By dwelling on your life
    That you had when you were here

    With unconditioned love
    I send with thee my friend
    And holding memories dear
    Until we meet again.

    Written by Leslie Plyler
    with Dennis Coty 1948-2002

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