Ten days ago we learned that the latest chemo regime of velcade/dex is no longer working. My IGGs jumped from 4500 to 6900 and the M spike jumped to 5.0--while being treated with velcade. No more velcade. We have now moved to a regime of bendamustin, revlimid, dex, and prednisone. We'll know in about 2 to 3 weeks if this is working.
The discussion with Rifkin was yet another sobering event. He again emphasized that I did not need to continue with treatment and that it would be very reasonable if I elected to forgo any further treatment and just receive palliative care. This is the 4th time I've been given this option, going back to my first visit to MDAnderson in November 2009. As with each of those previous "offers" I turned him down. But I think we all know that at some point the chemo won't work and then the decision will probably be different. There are no more new drugs; I've had them all. No more transplants as my blood would likely never recover--i.e., produce white and red cells and platelets. As it is now I need platelets every 3 to 4 days and blood every 10 days. And this is just the effects from revlimid. So we continue in this alternate reality of seeing a train coming down the tracks heading straight for us and wondering if, once again, I can jump out of the way.
And just to insure that I don't get too comfortable, my right arm decided to take a vacation, so to speak. As you know the left arm is broken and can't be treated. About 10 days ago, while pulling something from the freezer my right arm snapped and has left me unable to lift anything. I also can no longer drive. That is what we all feared when I first started having pain there about 2 months ago. What are they doing about it? Nothing. As Rifkin said, we can't do anything with the arm we know is broken, we certainly can't do anything with your right arm.
Susan and the girls are rallying in support, of course. And we continue to enjoy our lives. In fact I think we laugh more now than we ever did. What are you gonna do? We will enjoy our every minute together.
Susan and I celebrated our 30th wedding anniversary this month. What a wonderful event. We are as much in love as ever and just enjoy each other's company. I have dragged her through the worst of times with this disease yet she continues to care for me and treat me like a king.
I wish I had better news to impart but, who knows, maybe I'll be able to report good news on the next post.
Best to all,
Dan
This blog was initially created in 2005 to track my progress through a stem cell transplant for my recently diagnosed multiple myeloma. Like so many things in life it has grown into so much more and is now a worldwide support network for me and my family as we travel the path of living with myeloma. Read or comment if you wish and welcome to our journey.
15 comments:
Dan -
You and your family remain in our prayers. Stay strong -- if anybody can continue to shuck and jive and beat this, you can! You have an excellent and dedicated doctor and an amazing partner in Susan -- I am inspired by the joy you continue to find in each other's company and by the grace and dignity with which you continue to stare down this disease.
I hope and pray the latest cocktail will give you relief from your symptoms and stop the MM in its tracks.
God bless you all!
Warmly,
Nick
Praying for you and watching your blog every day. I totally agree with Nick... God bless you all!!!
Dan...
My family continues to keep you in our prayers. Thank you for the inspiration...
- Bob
Thanks for the update Ol' Pal. You are in the minds and hearts of many, many of us out here in the cloud. We all know you by and for your courage, bravery, love, strength, friendship, family, friends, tenacity and intelligence. You have touched us all by sharing so openly these past years your battle (and enjoy the few you've started too :).
May God continue to Bless you and yours. All of you remain in my prayes. Take good care of yourself ol' bud.
The Dakota Kid ...
Prayers and support coming your way from Jersey. You and Susan are an inspiration to so many of us who have followed your lives. Hope the new protocol will help and that you continue to enjoy every moment. Peace and love to you all,
Denise
Dear Dan,
PLEASE!!! Don't delete me :)
Dear Dan,
You are facing this latest trial with your usual courage and dignity. Our love and prayers, Sigun.
The good news is that you and Susan were able to celebrate 30 years of partnership and love, and we know that love never ends, even if the train ride does.
Sigh... as Sigun said you demonstrate courage and dignity in the face of an unrelenting condition and my intention is that you are knowing in these coming days and weeks and months how much you are loved and valued and that when the day comes when you have to take an 'offer' you cannot refuse, you are at peace with the timing of everything.
I intend this for the highest and best good of all concerned, so be it and so it is... may these coming days be filled with the laughter and joy you so deserve. and you and your family are in my prayers.
Dan,
be strong. its not easy to deal with this roller-coaster, especially when the car is heading down.
Be strong!
Shay
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