OK, so there was this post where I found out I had the very beginning of a tumor on my left hip. I was bumming. Up to now I have been asymptomatic. And I have been very happy about that. So to hear that there was some actual damage as opposed to just numbers on a blood test......no fun.
So today was a followup Dr. Hochstin appointment so I could ask all the questions I had accumulated between meeting Dr. Miller and all the reading and the MRI and Dr. Oliver.
First thing is while I am at the insurance/referral/billing desk the phone rings. Elizabeth answers and gives the phone to me. What? How am I getting phone calls there? LOL I take the phone, it is Central Scheduling, can I come in for a contrast MRI at 1345 on Friday? My primary wants it to happen ASAP. Sure, I say.
Then we go into his office. The first question out of my mouth is "Did you see the MRI?" He smiles and says "Yes....Wasn't that where we did your bone marrow biopsy? Let's call Dr. Kelly." He calls, I ask more questions in the meantime. Dr. Kelly comes on the line. They discuss the bone marrow biopsy. Dr. Hochstin concludes by saying "Do you see any value in a contrast MRI?"
It's not a tumor! LOL I look at Jen, I see my astonishment reflected there.
Then we went on to discuss my visit with Dr. Miller. My type of myeloma, how fast could I get going on treatment. He is pushing me to get going. He pointed out the Dana Farber will likely recommend the same cocktail. That if it's different, the difference will likely be to add a 3rd drug which they can do after September 17th anyway.
I also figured out why both Miller and Hochstin are so hot to have me do the bone marrow transplant. While my type of myeloma is not aggressive (aka - lazy), it is also somewhat non-responsive to drug therapy. As Dr. Hochstin put it "IGA doesn't behave well." Jen and I looked at each other and laughed. Suits me, doesn't it? IGA only occurs in 20% of MM cases.
Then he talked about one of the more perplexing aspects of my case. I have a normal Beta-2 microglobulin. It's very unusual that it's not elevated. I'll have to read up on that.....
So, I still have to meet with Dr. Schlossman on the 17th, but I think I will begin treatment before that. Dr. Hochstin feels that it will not impact what Dana Farber may want to do, should I choose them. If they change anything it will be to add a third drug.
So, it looks like we will go with Revlimid, the derivative of Thalidomide - which BTW I thought affected a lot more than 17 American babies. I thought it was some kind of epidemic, but it was bad in Europe and Africa not here. Although 17 is 17 too many. Anyway, back to the topic, lol. I will take Revlimid every day for 21 days, then a week off. My blood will be tested to assess effectiveness. I will also take 4 days of steroids every two weeks.
Anyway.....the important thing for now......IT'S NOT A TUMOR!!
4 years ago