On 5/12/2008 NewGuineaChild wrote:
Thanks for your input, Jan. My mom's doctors are in dialogue with doctors at the Mayo Clinic about her MM: on their recommendation at the Mayo, her oncologist has her on VELCADE - which does seem to be helping. I got a better answer regarding what one of them had said about MM being "merciful". I misunderstood -- I think what was said is that once my mom goes into total renal failure, it's basically something like a 10-to-15-day-countdown-to-heaven...and at that point as her body ceases to be able to rid itself of toxins, they'll build and build and it is this process that causes her to be more or less numb to pain. If I understood that correctly...I'm getting this third hand from another sibling... it still doesn't make any sense to me. The other confusing point is that I've heard one doctor say she has bone cancer, but I looked MM up and it specifically says on MedNet.com that MM is NOT bone cancer... it starts in the blood cells not the bone cells... but another doctor said mom has "secondary bone cancer" because it IS now in her bones. You know, I just want to tear my hair out. Thanks again for taking the time to respond. It helps me not feel so alone to know my family isn't the only one going through what we are with our mom. -B
Dear B,
I fear my comments from my last post were negative, but it was a reaction to what that doctor said. I should have gone on to explain that my husband, too, was very ill when we first found out he has MM. I know the "tear your hair out" feeling because the disease and all the information about it comes at you so fast that your can hardly keep up with it. You said that the Velcade appears to be helping. That's a good sign. My husband has been on Revlimid and Dexamethasone for 9 months and is now pretty much his old self again. He is able to do most everything that he used to do, he just requires more rest than before. It took about 3 or 4 months, then the meds began to work, his blood counts got better and he began feeling better. Each case of MM is different and there are many meds out there, so if one doesn't work, another med might.
My husband had compression fractures of T 6 & 7. He wore a specially fitted back brace for about a month which eased the pain and healed the fractures. This brace was molded to fit his body and was not uncomfortable, after a few minor adjustments. He now takes Zometa to harden his bones.
You spoke of "total renal failure", have the doctors mentioned dialysis to help remove the toxins from her body before total renal failure sets in? Our doctor said that my husband might have to have dialysis if he showed signs of renal failure. It's an option you could discuss with the doctors. When his blood creatinine went up , the doctor put him on a gout med called Allopurinol - 300 mg - and it brought his creatinine back to normal.
Keep the faith and God bless you and your family. Give the meds some time and learn as much as you can about MM. Take care.
Jan