Visit with Rikin this week. I've built up anxiety about my need to discuss continuing the carfilzomib trial. The drug has been very hard on my muscles and bones. But Rifkin is three steps ahead of me. He's already concluded the drug is not working and has an abstract of another new drug he wants me to start on (bentamustin). My Doc from MDA who moved to NYC talked with us about that drug when we were in NYC in August. It's new in its application to myeloma, but has shown some success in treating lymphoma. Since giving it to me would be "off label" we have to get preapproval from my insurance company. Off label merely means it would be used for a purpose other than that approved by the FDA--treating myeloma rather than lymphoma.
The last month I've had to deal with a significant lesion in my upper left arm. The lesion is a result of the myeloma eating away at my bones. Cancer cells essentially replace bone, making the bones weak, to the point of fracture. That was the concern as they xrayed my arm, put me in a sling, and subjected me to 5 days of radiation to kill some of the myeloma and make way for bone growth. Getting on and off the steel table for the radiaion treatments was the most difficult part of this, given my messed up back. But, like all these treatments, I survived and am very glad that is over.
These are difficult times as we continue to search for some longer term relief and try to ignore my decline as well as the short list of new drugs that might be available.
Thank you everyone for your continued support.
Love,
Dan
7 comments:
Dan, I'm so glad you posted. I've been worried about you. Your
doc who moved from MDA to NYC was also my doc at MDA (broke my heart when he left), and I've felt a kinship with your journey. Just know that so many of us out here in the MM blogosphere are pulling for you.
Yes... Lovey is right we were worried. Glad you posted and we are pulling for you....
Holding you and your family in prayers and intentions for the new combinations to do the trick for relief and sustainability...
Dear Dan:
Although we have not seen you recently, Doris and I hold you close in our daily prayers. Our hopes for you remain undiminished. Love, Doris & Devraj
Hi Fuzz,
Haven't been here for awhile so had some catching up to do. My thoughts and prayers are with you and your battle. Remembering the Titan days and Herb encouraging you to be tough and battle it out.
I guess it was good training but nothing like what you've had to now go thru. After Jan. 1 we'll have to start putting together Fuzz Fest II.
Haven't been here for awhile so had some catching up to do. My thoughts and prayers are with you and your battle. Remembering the Titan days and Herb encouraging you to be tough and battle it out.
I guess it was good training but nothing like what you've had to now go thru. After Jan. 1 we'll have to start putting together Fuzz Fest II.
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