You need to start dressing in red spandex more.
You need to start dressing in red spandex more.
Wishing you the best of luck with this.
For the bad taste, try Mberry (aka Miracle berry, miracle fruit). Disolve it on your tongue, then eat whatever. I've never actually tried it, but my fiance has in school (Masters Food Science program). She said she was able to just eat a spoonful of mustard, and it was sweet and tasty! Tasted like nothing she'd had before, but basically the Mberry makes everything taste sweet.
Thanks, all. This has been an interesting journey (to say the least) and this board has made it more bearable for sure. 
I'll have to check out that Mberry. The doc says I have to go through two 28 day cycles of chemo then another PET scan before he can make any judgment on its success.
Have you looked into any genomic testing? Might be able to match you up to a drug that helps. The technology has advanced a lot in the last few years.
Best of luck to you - have a few family members that have gone through similar trials and I know it's not easy.
Genomic testing? Haven't heard of that one. I'll ask the doc; thanks for the heads up!
you want some light reading ?
http://www.cdc.gov/genomics/gtesting/
This is geared toward lung cancer but has good generally applicable info as well
http://dontguesstestlungcancer.com/
Curmudgeon wrote: so I have had to quit my job with all that entails. then I go COBRA, ACA or possibly on SS disability and/or Medicaid. Whoop de berkeleyin' do.
What about a fund me site.... that what anyone (cough, clearing throat) can chip in to help???
Best of luck
M/Radioactive Man 
- let me know if there is anything I can do - I'm up your way once a month, so if you need someone to come by and do some heavy lifting (if you unzip you're on your own!) let me know.
Sorry you had lousy luck with the first Cancer doc. Glad you fired her and got a new one. Get better soon! Prayers out.
The latest: the new treatment is called MVAC and it really put me on my ass at first, I've now gotten sort of tolerant of it. Not sure if that's good or bad... anyway I was able to make the LeMons 'Shine Country Classic at Barber Motorsports Park and drove 4 hours 45 minutes over two days. Much better than I expected! Did okay, my best lap was a 2:03 flat, the best lap in the same car was a 1:58 and change so I wasn't too far off the pace.
And Uncle Fester came to visit.
Has anyone done an Addams Family theme in LeMons yet?
Uncle Fester ROCKS, but he doesn't drive a race car. Hoping I can see your cousin It impersonation soon . 
GameboyRMH wrote: Has anyone done an Addams Family theme in LeMons yet?
Not yet. 
Curmudgeon wrote:GameboyRMH wrote: Has anyone done an Addams Family theme in LeMons yet?Not yet.
hmmm, maybe you could be Fester...
but drive a more Munsters type car???
Yeah, like 'Drag-u-la', Grandpa's coffin car!
The funny thing is, I don't recall the original 'Addams Family' TV show ever having an 'official' car but the Munsters had three IIRC, all built by George Barris. The 1991 'Addams Family' movie had a Packard Twin Six.
Saw the post that you might move up near Clemson... How are you feeling?
Still doing chemo, that makes me feel like crap; tired and weak mostly, surprisingly little nausea etc but it's necessary. I'm Stage 4 which is a med term that means the tumor metastasized and has spread but it doesn't mean I'll croak immediately, just that I'll probably never be rid of this. I have another kyphoplasty scheduled for July 23 to fix the other three vertebra which are causing me back pain.
I feel good enough that when the move comes off it's very likely that I'll be acting as my own contractor to have a house built. I also feel good enough that I'm driving at the Dragon hillclimb in September and will be doing a NASA track day weekend at VIR in October. I might try to do Weatherly 2 HC, it's a week after the Dragon so just have to see how the chemo schedule runs.
Have you looked into any clinical trials? There are a lot of new options available that haven't ht the market yet. Immunotherapy is very promising for Stage 4 patients - it's not working on every patient, but those it does work on have very durable results.
I understand Duke is doing some stuff, but they are only taking cases which don't respond to conventional treatments. That means I need to complete this regimen and then give them the results, go from there. FWIW, there is not a whole lot of work being done on bladder cancer anywhere. Guess the bladder isn't as sexy as the breast or even the colon.
Take a look at clinicaltrials.gov for an idea of what's currently in play. let me know if you would like me to dig in deeper (I work at a cancer center, serve on the research and protocol committee and may have a contact or two).
oldtin, that's a very interesting site! Thanks for the link. If you have any ideas, I've done 20 radiation treatments, have been on Gemzar and that was booted in favor of MVAC, which I'm on the 6th cycle of that right now. I have two last treatments then a break to get the crap out of my system. Then there will be another PET scan, the last one showed improvement and we are hoping for even more this go-round.
My oncologist mentioned Duke but only if this regimen didn't shrink the tumors; are you familiar with anything they might have in the pipeline?
with the pending Clemson move, will you keep your same doc ? travel to and from .. or is there someone in the Clemson area that your doc would recommend ?
Love the fact that you aren't being denied the motorsports hobby though all this. As far as treatments.. best wishes. Modern medicine can be amazing.
wbjones wrote: with the pending Clemson move, will you keep your same doc ? travel to and from .. or is there someone in the Clemson area that your doc would recommend ?
Working on that. There's a sizeable oncology practice in Greenville, but honestly it wouldn't be much further for me to go back to where I'm going now. A lot of that depends on how this round of MVAC goes. If I'm down to one trip every six months or a year, it's probably best that I stick with the locals. If it needs to be more often, then the Greenville practice is probably the best bet.
OHSCrifle wrote: Love the fact that you aren't being denied the motorsports hobby though all this. As far as treatments.. best wishes. Modern medicine can be amazing.
One of my personal heroes is a guy named Doug Henry. http://www.grindtv.com/moto/paralyzed-moto-x-legend-pulls-off-backflip/#Ovk5IKURhomgMlbi.97
https://www.facebook.com/pages/Doug-Henry/49133322858?fref=nf
If he can keep on after what he's been through, then I have no reason to complain or quit!
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