Yesterday I closed my post with this cryptic statement:
I was going to share the news about my visit with my myeloma specialist, Dr. Alsina today. I will get to that tomorrow.
No tease–the news was sort of no news at all. Let’s just say I’m sentenced to a life of perpetual post SCT chemo. I’m OK with it. Really! Details to follow…
Well, I’m not really sure that I’m “OK with it.” Guess that I should back-up a bit.
Unbeknownst to me, my local medical oncologist sent some blood work in five weeks ago to be SPEP tested. I traditionally rely on M-protein results drawn at Moffitt Cancer Center which is much farther from my home.
Anyway, that test showed no evidence of M-protein. NONE! How exciting!
But I knew better. Past experience for my tests–and those from some other members of my support group who are also treated in both locations–have taught us that the local results tend to run significantly lower than at Moffitt. No one knows why. I do know that Moffitt runs their own labs and has their own pathologists to read and quantify results.
The same thing happened to one of our group members last week. His M-spike locally was 0.5. But it was 0.7 at Moffitt. One way or the other, this is a perfect example of why it is best to be tested at the same lab so everyone gets a consistent picture of which way things are trending.
So. I had no M-spike at one lab, and a 0.1 at Moffitt’s–the same number I had two, six week RVD cycles before.
Shit! Not very gracious of me, but we are all adults here, right?
But hold the phone! There is good and bad news here. As I listened to Dr. Alsina–and what she proposed I take for maintenance–I sat back and started to smile. “But doctor,” I started to say, “There isn’t any difference between my now modified RVD consolidation and maintenance!”
By reaction startled her a bit. “Of course there is!” She replied assertively. “Your full RVD schedule uses Velcade, once a week sub-q, for four weeks, with two weeks off. Your maintenance schedule keeps the four week schedule, but then you get four weeks off.”
REALLY! Let’s celebrate! I thought, sarcastically. But what about Revlimid? “Your neutrophil counts continue to be low.” She continued. ” We will drop you down from 15 mg Revlimid to 10 gm, 21 days on and 7 days off.” “For maintenance?” I asked. “Both.” she responded.
Really? Let’s get this straight. My RVD is going to use 10 mg Revlimid. That’s good–I should be able to tolerate that a lot better. Good news! Once a week Velcade sub-q hasn’t been so bad. And dex. We haven’t addressed dex yet.
“Stay on 40 mg oral dex for this cycle.” Dr. Alsina added.
Although she never said anything about dex and maintenance, I’m assuming we will drop the dex for maintenance.
But dex doesn’t bother me much, either. I like the two day “rush” I get, and my crash is usually only a few hours in the middle of the third day.
But I do believe it breaks-down my muscle mass–and it is a bit harder for me to sleep soundly–although one small Ativan tablet, taken before bed time seems to clear that up.
But is it just me, or did you notice that there is very little difference between my current consolidation and her proposed maintenance schedule? When I pressed her about this, she didn’t say a lot about it.
However, Dr. Alsina did stress that she hoped we could reduce dosing frequency with time. “I have dozens of patients who are doing well with this schedule.” She reassured me.
“But if we reduce frequency, what if the myeloma becomes more active again, Doctor?”
“Since Velcade is a “new” drug to you, we should be able to slow it (the myeloma) down by simply increasing the number of doses we administer per cycle. Every patient I have done this with has been able to stop or reverse it.”
That was very reassuring to me. I forget that Dr. Alsina works with a very large number of myeloma patients at a time. She has real time, anecdotal experience from treating a large number of patients and watching how they respond. The laboratory is important, but it is hard to beet hands-on experience.
“You have some patients who stay in CR for no logical reason.” She explained. I have one patient who has been in CR after using VAD 12 years ago.” (They don’t even use that therapy anymore!) She continued. “Then there are a small group of patients where nothing works. We try everything…” Dr. Alsina finished with the punch-line. “But most patients fall in the middle. Velcade is obviously working for you. You have only used it for a total of six months–some before your transplant and some after. And you transplant seemed to re-set how you respond to Revlimid. There isn’t any reason this therapy shouldn’t work for you for years.”
GREAT! I asked her about the “half life” theory, where if you relapse and get another SCT or re-start a formerly affective therapy–about how that usually mans a remission will only last half as long. “That doesn’t apply here.” She said, assertively. “Velcade is a new drug to you. And Revlimid is working like it’s new…”
We talked shop for ten or fifteen minutes like we always do. I ask her questions about where she came-up with the four weeks on/four weeks off Velcade dosing schedule. “From a Swiss study.” She replied.
Dr. Alsina is very international–and a very bright woman. Pretty attractive, too! But few of her patients or co-workers would describe her as warm or personable. Part of this assessment isn’t fair. Her rather thick, Puerto Rican accent could be a bit oft-putting if a patient or caregiver wasn’t experienced or tuned in to therapy vocabulary.
So I was a bit surprised when she placed her hand on my back in a warm and reassuring way as we ended our 30 minute meeting. I left surprisingly up-beat.
Good news or bad - Get outside and keep smiling!
But tomorrow I would like to share how I feel about my new, perpetual life on chemotherapy. How I’m not recovering as quickly as I did before my SCT. And why I am gong to call my new maintenance therapy “RVD light!” Because that’s all it is–the same pounding which has left me feeling off balance and dragging over the past six months.
But I’m here, I’m alive and the therapy is working! Sure glad I don’t have to pay for it! Maybe I can touch on that a bit tomorrow, too.
Feel good and keep smiling! Pat
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