Guts a'suffering today and nothing seems to help. I have absolutely no energy today and have been one with my sofa ever since I went to get the mail for my father. My resting heart rate is 84, but the minute I'm up and trying to walk slowly in the house, my pulse jumps to 110 and I have shortness of breath.
Working hard on the Ancestry stuff, making a timeline is really helping.
My brother, Jeff, is arriving from Colorado this afternoon, but I'm just too tired to go over to Dad's for the official greeting. Jani will take a photo.
We have at least one bomb sniffin' dog check each new arrival out.
Going to Lost Rivers Medical Center tomorrow for a blood check. Although I don't think I'll need platelets because I haven't had any bleeding, I do think I need 1-2 units of packed irradiated red blood cells for ENERGY. I'm quite short of breath with walking right now.
Keep hanging tough girl. I sense you are such a strong-willed woman. Such an inspiration to your followers, with MM or not. You get done whatever you want/need done in your own time. Don't settle for less.
ReplyDeleteI really think your best long-term option is getting access to the current investigational antibodies,elotuzumab or darantumumab, and preferably the latter. They work by a different action and therefore may accomplish the killing you need.
ReplyDeleteI do not know is there is a study center near you - but it couldn't hurt to check it out. And even if you have a profile that precludes enrollment in an official clinical trial, you might still gain access under "compassionate use" - which allow use of an investigational drug outside of a clinical trial to treat a patient with an immediately life-threatening disease who has no comparable or satisfactory alternative treatment options. It is considered case-by-case, but your determination and not bed-ridden condition - even with 100% plasma cell penetration -may go a long way towards access.
Best regards.
Sending you hugs and love from Australia xx
ReplyDeleteTake care
Sharyn
THIS MM IS SO BAD I DO NOT WISH THE PAIN ON MY WORST ENEMY,YOU HANG TOUGH YOU HAVE SO MANY PEOPLE PULLING FOR YOU TOMMOROW WE PICK UP THE PAPER AND READ THEY HAVE A CURE.XOXOXO Joe
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