Unfortunately the rooms themselves are dismally small. So much for my hopes of writing music, playing video games, working, etc. They look like they are about 150 square feet plus a small bathroom. All of a sudden, a condo in Little Rock looks pretty good...
Which brings us to Big Decision number one. I'm going to do induction in Arkansas. It makes too much sense not to do so. As I may have written, in the words of someone I've encountered who is going through BB's program right now...
It is not just about mirroring the treatment regime. There are many more subtle aspects to the team's approach here that no doubt have a very positive effect on their outcomes. Their resources are unmatchable. They can generate lab results faster than anything I've ever seen. They track everything on an almost daily basis, looking for potential red flags or signs of trouble that can be headed off at the earliest. For example, they routinely do blood cultures from my blood draws, just in case I get sick they will already have something growing in the lab and will know exactly what to treat it with. Typically cultures are only drawn when you are sick, and then it can take up to 4 or 5 days to identify the particular virus or bacteria. Everyone is put on Tamiflu right away, to prevent or lessen any flu events. I've had the flu for the past 3 years, twice developing into pneumonia. No preventative measures were ever taken in my treatment in Denver. Before a new patient is seated in the infusion room the chair is wiped down with alcohol. I'm sure there are many more differences that are unknown to me. But I'm confident the results achieved here are not due solely to the combination of chemo drugs.
So I'm going to do induction there, unless my questioning of BB's resident yields some unwelcome surprises. We spoke with SF about this and he agreed it was smart. He also suggested doing the stem cell collection there, since during collection there are additional elements to the protocol. He did think we could do transplants at City of Hope, and I do think he's an excellent doctor and I believe the quality of care would be excellent -- plus it would be nice not to be away from the kids for such a long period of time. On the other hand, the hospital rooms are like little dungeon cells.
We'll be looking into condos in Little Rock, and then looking into whether or not insurance will be sensible. A condo for a month is less than a hospital room for two days, and if I did the induction at City of Hope, I'd be hospitalized for a week per induction cycle, so if they are sensible, they'll spring for the condo. We'll have to see. Based on previous behavior, I'm not expecting reason to prevail.
Meanwhile, I am compiling my list of 101 questions and will hit Dr. CS (BB's resident) up with them soon.
As an MM patient in stringent complete response after auto transplant, I am curious. If BB achieves that response after the first transplant does he still do the secoud one no matter what? What side effects does he consider 'tolerable' to achieve getting thru the drug and double transplant protocol?
ReplyDeleteNick! I'm doing some research of my own for you.
ReplyDeleteReasons to be excited about a condo in Little Rock:
Sat, Feb 21, 2009 07:30 PM
PBR: Professional Bull Riders
ALLTEL Arena
North Little Rock, AR
February 19 - 21, 2009
14th Annual Bank Travel Conference
February 4 - 14, 2009
Hip-Hop Dance Workshop
River Market Bill & Margaret Clark Room (3rd Floor)
Arkansas Korean War Veterans Memorial
MacArthur Park, 503 E. Ninth St.
Little Rock, AR 72202
Phone: 501-376-4602
This is NOTHING! There's plenty more where this came from. :) xoxo!
Hahaha! Awesome. The hip-hop dance workshop should be amazing. I picture a bunch of people dressed up for country line-dancing saying "you want us to do WHAT?"
ReplyDeleteJan, yes, he always does the second transplant. This is something I used to question, and I know others do, but I've since decided to just do the whole thing. We'll see how horrible the first transplant is, but honestly I don't anticipate it being that unbearable. They evidently don't have a lot of trouble with mouth-sores, and there are a lot of ways to control nausea. Diarrhea is unavoidable but if four days of bad diarrhea (x2) is the price to pay for being cured, I'll take it.
ReplyDeleteWe'll see how rosy I feel after the first transplant, though. :)
The way I look at it is this: one might be in complete remission after the first transplant and say why bother with another. But then one might also be in complete remission after induction and say why bother with the transplant in the first place? The French study that showed early transplant is better than late transplant was done without Velcade and is now being repeated with that drug added. It will take another 7-8 years before we have good data from that, unfortunately.
As for side effects, I have spoken with several who went through BB's protocol and he is not militant about dosing. They run tests and will adjust things on a daily basis for a number of reasons, including managing side effects. The one I am most concerned about is neuropathy given how much BB's protocol uses Thalidomide, but they say they manage around it.
Having said this, he does press forward very aggressively. If the first cycle of induction is done, and you've tolerated it well, he will probably push through with the second cycle immediately rather than wait a weak. Similarly, he'll jump into transplant very quickly after induction.
Hope this helps -- please feel free to ask any other questions! You are also welcome to email me at artisannvandyk at earthlink dot net.
Oooooooh, I also just learned about Little Rock Connie. Wow.
ReplyDeleteNick,
ReplyDeleteThanks for the informative reply. Gosh, I wish I had a crystal ball....At your age, I don't expect the transplant to be that difficult, I had a really messed up disgestive tract for days 8-12, then things improved rather quickly and I was home on day 14. All done out patient.(I walked 3-4 miles everyday during the transplant and grafting) I have a friend who did an auto/allo in a 3 month time frame in 2004 and is doing very well today, no relaspse yet. Allo will never be an option for me because of my kidney damage (I have light chain deposition disease/MM)
Since you are healthy, staying active and walking alot seems to help some with the neuropathy. Best of luck, you have researched this well.
I was at almost complete response with the drug therapy before transplant, so how soon does BB wait before doing the first transplant, is that determined by your numbers or time? From your research, what is the average event free response time BB is getting from the double auto transplant? I not that good at reading the charts...
Jan -
ReplyDeleteFirst, thank you for the kind and encouraging words. You'll see I address your questions partially in the next blog entry, but the long and the short of it is BB does everything as quickly as the body will take it. I will start getting cell mobilization shots as soon as the blood counts recover from the induction, and then as soon as the CD34 counts are sufficient, they will harvest and transplant so the whole thing from the end of induction to the first transplant is probably not going to be more than a week or ten days at the outside.
Event free survival among all low risk people in BB's most recent published protocol is at 80% after four years. This is NET of treatment-related mortality and death from other causes, so figure closer to 90% after those are adjusted for. I like those odds!
Thanks for the advice on walking...I'm a little petrified of doing too much while neutropenic but if I have the energy, I will certainly be doing it as I'm even more scared of neuropathy than I am of sepsis or pneumonia! :)