Well, we saw Berenson yesterday. And it definitely gave me some hope. He talked about getting me to the point where I live a complete life....not quality of life. He was surprised we waited this long to change things up, given it was clear that doxil/velcade isn't doing anything. So he's got me on a whole different regime....starting today basically. He says we ought to see some quick results.
My kidneys worried him....more on that in a second. He couldn't believe that fuckhead Warner went on vacation, without following up with us. We need to be seeing a kidney doc once or twice a week. But, other than my anemia and bad kidneys, he said you couldn't guess that I have myeloma. However lab work shows it progressing.
He sees no need to do a kidney or bone marrow biopsy. We have enough information already and need to go after the myeloma. He doesn't see the benefit of the stem cell transplant....that all you are doing is treating a symptom and not really killing the myeloma. His goal is to kill the myeloma. Leslie and I left Dr B's office feeling pretty good about things.
Then last night Phan called, we got the results from the morning blood work. Fucking kidneys....even more jacked up. We need to act quick and need to avoid dialysis. That was kind of a bummer. I was going to go to work today, but the plan instead is to see a kidney doctor this morning. Warner is absolutely out of the picture, so it'll be a new doctor who hopefully actually cares about their patients. Warner had me do the 4 day in a row saline drip and ran some tests. And then he never he followed up with us.
And I think that is the gist of yesterday. There's hope and hopefully I'll see progress in the next week or two. I need some positive results.
Gary Peterson is a fellow myleoma patient. He has a website that discusses myeloma survival rates; comparing doctors, hospitals, etc. It...
I no longer work, but I did work for over 6 years while managing my disease. For a while, I had some real challenges with human resources. I...