I saw Berenson yesterday. I told him he bumped me from Inside Edition. He didn't seem too interested. He's a great doctor, but not the best at small talk. Anyhow, it was my monthly visit. For my myeloma, which is of the light chain variety, we track the protein in my 24 hour urine and then test for paraprotein and get a % of total protein that is the bad paraprotein. Several months ago we had those numbers way down. The total protein and % were looking great. But for the past few months, they have been moving up. Neither Berenson nor Phan seemed worried.
We were worried a few months ago when I was sick and getting fevers. But it turned out I had a bad flu and it wasn't the myeloma. Right now I still feel real good. No symptoms. But those numbers had me thinking. This month was another jump in my numbers. Something in my gut told me it was the myeloma regaining momentum. And if so, in my mind I figured we ought to jump on it. Nip it in the bud.
At Berenson, normally I wait for him to suggest something or say we keep doing what we're doing. But I jumped the gun yesterday and told him I thought perhaps we need to change things up. At the LLS blood conference last week, a doctor mentioned that there are times you can go back to previous successful treatments if you relapse. Save the new big gun drugs for later. When I was diagnosed neither velcade, doxil nor thalidomide worked. So we tried Treanda (bendamustine), not a standard myeloma treatment in the U.S. It worked like a charm. So at Berenson, we discussed going back to it, to beat the myeloma back down. He agreed that would be the way to go. He recommended it, after I suggested it, if that makes sense. I don't think he would recommend something unless he thought it was the way to go. Right?
I've been fortunate with maintenance. One short infusion every two weeks. Few side effects and I am leading a normal life. For nearly two years, this has been my routine and not a big deal. Last night, I realized that going back to Treanda means some changes. Do I get my port put back in? I'll have chemo twice a week, two weeks in a row. Then I get a two week break. I'll have to miss a bit more work. I'll actually be tired after chemo, which means I can't drive myself home from treatment and I'll need a nap when I get home. I've been making plans for the next few months, I need to now redo my calendar.
A bunch of inconveniences come with going back on Treanda. So now I am wondering if we jumped the gun on making the switch off of maintenance. I read Pat Killingsworth's blog on the Myeloma Beacon, how he took a watchful waiting approach recently and how perhaps he should of attacked earlier. Pat has bone involvement. I have kidney issues. My bones have been good. I have avoided dialysis this whole time. Dialysis scares the living shit out of me. Much scarier than chemo for me. And talk about a life changer. That is dialysis. So I think my decision to go back to heavy duty treatment partly had my kidneys in mind. I'm eating regular foods and my creatinin number has been good for months. I want to keep things that way.
We'll see Phan on Monday and talk this all out. I was planning on starting the new old treatment Tuesday. Maybe it clearly is time to change. Maybe we can wait. That is something that I've told people and they've told me. There is no clear cut way to go with myeloma. It's a weird cancer. But you choose a path and don't look back. You go all in. You have to. You have to believe it's going to work. I do believe. But it's the timing that has me a pondering.
We've gained some traction with our petition for Oral Parity. The Senate has now proposed a bill that mirrors HR 1409. Fresh off the pr...