So it was quite a day for tests. We picked up our packet of information at 11, went to get my blood drawn and my dressing changed where they still had my old orders from post-transplant (asking them to do peripheral sticks to run obscure anti-viral cultures that I don't need since I have an immune system again). I explained they didn't need to do that and they eventually go it.
Then we ran over to the MRI, where we waited for 30 minutes and then I was slid into the tube for two full hours. My God is that boring. I popped an Ativan in the vain hope it would let me sleep a bit but it's hard do with the endless BEEP BEEP BEEP BLAM BLAM BLAM CLACK CLACK CLACK going on at 10db past the threshold of pain all around your head. I need to do some research on the sonics of magnetic resonance imaging because I can't understand why the BEEP BEEP BEEP needs to happen. CLACK CLACK CLACK I could rationalize as the magnets being spun around on a track, but BEEP BEEP BEEP?
Anyhow, after we got out of there, we ran off to the clinic for my pre-anesthesia consult. I reiterated that if they don't show up with the right kind of drugs, I am outta there. BB's assistant seemed preoccupied so he didn't say much, but I'm ready for bear if the Faith Healer shows up without the Propofol.
Then it was off to the PET scan. I always love these. Locked in a lead chamber, the woman enters with a lead thermos, says "this won't do anything to you" then removes a syringe from the thermos with tongs, injects it into me, flushes it out with water and runs for the hills, closing the lead door behind her. :)
After stewing in radioactive juices for about 40 minutes, it was back to the PET scan. I think I dozed off a bit on this one -- it's not nearly as noisy.
Jill and I went to get some sushi and now we are tired out, ready to hit the hay. The bone marrow work is being done at 8AM and we need to be there by 7, so it's going to be early to bed and early to rise.
I did speak briefly with Dr. SF this evening. Highlights:
* VTD in induction achieves CR in about 70% of patients, which is better than it used to be.
* He doesn't know that fractionated Melphalan is any less strong than regular Melphalan, so that's probably not the root of the issue.
* He isn't sure if, at this point, CR will be achieved with one round of consolidation, one round plus maintenance, two rounds, two rounds plus maintenance, or maintenenace only. Or, in fact, if it isn't going to be achieved at all, which he agrees would be a disappointment given that I don't want to control the disease but rather to get rid of it.
* He agrees that the right questions for BB are the ones I have outlined.
So...there you have it. More news as it becomes available.
Wednesday, July 8, 2009
Back in Little Rock with renewed resolve...
I returned to Little Rock yesterday afternoon following four weeks or so in Los Angeles. The culture shock was palpable.
Nonetheless, weather here yesterday was nice (87 degrees, not too humid, sunny) and we are supposedly in for another day or two of that before the dewpoint goes haywire and the heat index takes off. By that time, hopefully, I'll be spending most of my time indoors.
Before reporting on Little Rock, though, I wanted to share some exasperation at trying to get lab results out of SH's office. Mind you, I last had blood drawn there on June 30th -- a week ago. I had called on Monday of this week, so six days after the blood draw, and left a message asking specifically for the M-spike, and saying that if I couldn't be reached on my cell phone, try my home phone, and if you have to leave a message, please just leave the M-spike data.
My cell phone had died by the time the woman called Monday night at 6:30. The message, which I retrieved early Tuesday, said "I'm returning your call. It's 6:30. I'll be here for two more minutes. Otherwise we can talk tomorrow." No mention of the data.
So I called the next day -- yesterday -- and left a detailed message, saying that I was travelling and my phone would likely not be on, but PLEASE leave the M-spike data. I landed in Dallas and checked voicemail as we were waiting for our flight to Little Rock. I had a message. "All your data is normal. Have a good day." I was ready to put my head through the plate glass window of the airport tram. I called back "I NEED, TO TWO SIGNIFICANT DIGITS, THE M-SPIKE DATA TO COMPARE IT WITH PREVIOUS FIGURES OF .27, .29, .32 and .30. PLEASE GIVE ME THE DATA TO THE HUNDREDTH OF A POINT."
FINALLY they called back. 0.32. Now, leaving aside that this ISN'T normal...why did it take so long for them to simply respond to my question? Grrrr....
Anyhow, although I hoped for some 11th hour improvement, the fact remains that I stopped responding to this transplant (or rather, received the full benefit of it) about a week after receiving it. Which brings us to where we are now: heading into consolidation with residual M-spike of 0.3 or thereabouts.
We ran into BB's wife and son at dinner last night -- BB himself is in Ann Arbor for some reason. We will likely all have dinner this weekend once they get their schedule worked out. I explained my concern over my remaining M-protein to BB's wife but what it boils down to is this: I responded to induction, so there's no reason to believe I won't respond to consolidation. I only have a little protein to eradicate. If I need a second cycle to eradicate it, then we'll do a second cycle to eradicate it. And if THAT doesn't do it, then I'll still have maintenance, although BB's wife seemed to agree that it would be better to have it gone before beginning maintenance therapy.
My first round of induction took it the M-spike from 8 to 4. All I need is to get from 0.3 to 0.0. They (well, one of the APNs -- who presided over my first transplant) say it's considered a success if a given round of treatment reduces the M-spike by 50% or more. So 8 to 4 was a success. My first transplant took it from 4 to 0.7 -- a tremendous success. The second transplant from 0.7 to 0.3. At least 50%. So if one cycle of induction takes it to .15, and another takes it to 0.07, that gets pretty close, and that's the least meaningful response I would expect.
I go back to what Dr. EA, a colleague of BB, told me when I was in the hospital: the response of the tumors as shown on the first post-Velcade pet scan was exactly what they hoped to see, and was consistent with a very good long-term prognosis. There's no reason I shouldn't get into remission. I just need to get myself there by hook or crook.
Today I pick up my scheduling packet, get blood drawn (huzzah!) at the infusion center where I can get a full set of labs (and results in less than a week!) and then tonight another PET scan. Tomorrow will be bone marrow and fine needle aspiration from the religious extremist. Unless he's out planning the bombing of a Planned Parenthood clinic somewhere.
More news as it becomes available. And thanks for taking a break from watching the non-stop coverage of Michael Jackson's funeral to check in! :)
Nonetheless, weather here yesterday was nice (87 degrees, not too humid, sunny) and we are supposedly in for another day or two of that before the dewpoint goes haywire and the heat index takes off. By that time, hopefully, I'll be spending most of my time indoors.
Before reporting on Little Rock, though, I wanted to share some exasperation at trying to get lab results out of SH's office. Mind you, I last had blood drawn there on June 30th -- a week ago. I had called on Monday of this week, so six days after the blood draw, and left a message asking specifically for the M-spike, and saying that if I couldn't be reached on my cell phone, try my home phone, and if you have to leave a message, please just leave the M-spike data.
My cell phone had died by the time the woman called Monday night at 6:30. The message, which I retrieved early Tuesday, said "I'm returning your call. It's 6:30. I'll be here for two more minutes. Otherwise we can talk tomorrow." No mention of the data.
So I called the next day -- yesterday -- and left a detailed message, saying that I was travelling and my phone would likely not be on, but PLEASE leave the M-spike data. I landed in Dallas and checked voicemail as we were waiting for our flight to Little Rock. I had a message. "All your data is normal. Have a good day." I was ready to put my head through the plate glass window of the airport tram. I called back "I NEED, TO TWO SIGNIFICANT DIGITS, THE M-SPIKE DATA TO COMPARE IT WITH PREVIOUS FIGURES OF .27, .29, .32 and .30. PLEASE GIVE ME THE DATA TO THE HUNDREDTH OF A POINT."
FINALLY they called back. 0.32. Now, leaving aside that this ISN'T normal...why did it take so long for them to simply respond to my question? Grrrr....
Anyhow, although I hoped for some 11th hour improvement, the fact remains that I stopped responding to this transplant (or rather, received the full benefit of it) about a week after receiving it. Which brings us to where we are now: heading into consolidation with residual M-spike of 0.3 or thereabouts.
We ran into BB's wife and son at dinner last night -- BB himself is in Ann Arbor for some reason. We will likely all have dinner this weekend once they get their schedule worked out. I explained my concern over my remaining M-protein to BB's wife but what it boils down to is this: I responded to induction, so there's no reason to believe I won't respond to consolidation. I only have a little protein to eradicate. If I need a second cycle to eradicate it, then we'll do a second cycle to eradicate it. And if THAT doesn't do it, then I'll still have maintenance, although BB's wife seemed to agree that it would be better to have it gone before beginning maintenance therapy.
My first round of induction took it the M-spike from 8 to 4. All I need is to get from 0.3 to 0.0. They (well, one of the APNs -- who presided over my first transplant) say it's considered a success if a given round of treatment reduces the M-spike by 50% or more. So 8 to 4 was a success. My first transplant took it from 4 to 0.7 -- a tremendous success. The second transplant from 0.7 to 0.3. At least 50%. So if one cycle of induction takes it to .15, and another takes it to 0.07, that gets pretty close, and that's the least meaningful response I would expect.
I go back to what Dr. EA, a colleague of BB, told me when I was in the hospital: the response of the tumors as shown on the first post-Velcade pet scan was exactly what they hoped to see, and was consistent with a very good long-term prognosis. There's no reason I shouldn't get into remission. I just need to get myself there by hook or crook.
Today I pick up my scheduling packet, get blood drawn (huzzah!) at the infusion center where I can get a full set of labs (and results in less than a week!) and then tonight another PET scan. Tomorrow will be bone marrow and fine needle aspiration from the religious extremist. Unless he's out planning the bombing of a Planned Parenthood clinic somewhere.
More news as it becomes available. And thanks for taking a break from watching the non-stop coverage of Michael Jackson's funeral to check in! :)
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