Twisted Kenny! Scan results??

[justAfterTEM]

Hi Kenny, did you do a full 6 months of regular chemo before trying ADAPT? I was under the impression that people first underwent surgery (if possible) + 6 months of standard 5fu based chemo (like Folfiri) first, then did ADAPT as maintenance after the standard chemo. Just curious about the options, because my mother just had HIPEC.

[KWT]

Hi Kenny, did you do a full 6 months of regular chemo before trying ADAPT? I was under the impression that people first underwent surgery (if possible) + 6 months of standard 5fu based chemo (like Folfiri) first, then did ADAPT as maintenance after the standard chemo. Just curious about the options, because my mother just had HIPEC.

I'm unofficially on adapt. dr lin did want me to do Folfiri first. But my local onc wanted me to just do xeloda as he wasn't sure what was going on due to recent surg and radiation. I think if things start growing I'll do Folfiri.

[justAfterTEM]

Is your original local oncologist working closely with Dr Lin, I assume remotely over the phone? How did they decide on ADAPT before Folfiri, and why was Dr Lin OK with skipping Folfiri for now even though he suggested it? (just very curious)

[janderson]

I am tempted to stop Irinotecan and just to ADAPT. I think that made the most difference in my most recent scan reports. I cant do Irinotecan half the time because it is destroying my blood counts anyway. Have you told Dr. Lin the results. He was happy to hear about me.

[janderson]

I'm envious Julie, I looked at wine spires on summit post it looks cool I love finger cracks the most. I've been to busy to climb I want to get my ostomy reversed and then start climbing more.

Get back out there Kenny doing what you love. Mountain biking is by far the best medicine for me and I think rock climbing is just as beneficial for you mentally, physically, and emotionally. Everytime I get on my mountain bike which isnt enough, I am amazed how good I feel after 9 years of poison getting pumped into my body. It is a big FU to cancer

[juliej]

I'm envious Julie, I looked at wine spires on summit post it looks cool I love finger cracks the most. I've been to busy to climb I want to get my ostomy reversed and then start climbing more.

I thought about stopping off in Oregon and talking you into going with me! You have a lot more climbing experience than I do, so I could have used the advice. You should head up there next summer. They close the road in the winter, but I'm going back when it opens in the spring.

When is your reversal? I had mine at the same time as my double-lung surgery. Believe me there's nothing like having your bowels wake up and trying to make it to the bathroom with two lung drainage tubes hanging off of you! Hopefully, your experience will be a lot less exciting.

[KWT]

Julie,I meet with the surgeon nov 4th so probably mid nov. You should have stopped off in oregon I'm 1.5 miles from I-5 next time. Smith rock is good for sport climbing I'd go there anytime. Hit me up.

[KWT]

I am tempted to stop Irinotecan and just to ADAPT. I think that made the most difference in my most recent scan reports. I cant do Irinotecan half the time because it is destroying my blood counts anyway. Have you told Dr. Lin the results. He was happy to hear about me.

Jeff haven't talked to Lin yet I don't think it's necessary. But I'll let them know about the scan. I don't think I want Folfiri unti really necessary.

[WifeOfMike]

CONGRATS KENNY TWISTED!
STABLE is a GOOD THING...... a VERY GOOD THING
Wishing you stability and shrinkage in your future
Kick the Crap out of Cancer, then climb baby climb!

(((BIG HUG)))
Vicki

[Cb75]

Kenny,

What was Dr. LIn's reasoning for wanting you to do FOLFIRI first? I have an appointment to see him at the end of November. I'm contemplating. I'm having a hard time committing and travelling. Although, I"ve already paid. LOL

Carm

[KWT]

Kenny,

What was Dr. LIn's reasoning for wanting you to do FOLFIRI first? I have an appointment to see him at the end of November. I'm contemplating. I'm having a hard time committing and travelling. Although, I"ve already paid. LOL

Carm

I think he just wanted to get some shrinkage if possible. He said "shock and awe" then adapt as maintenance. He said he didn't recommend taking out lung stuff until it started to become a problem, he felt as soon as you messed with them the cells just traveled to a new location. You should try to make that appt. if at all possible.

[chrissyrice]

Kenny, so glad things are twisting your way... stable is so good right now.

Chrissy

[eleven11]

hi kenny, does your onc think that the "Stable" stuff are mets or post surgical? do you have any confirmed mets that you are watching?

[KWT]

Thanks Chrissy.

Eleven they won't really commit but it seems one is most likely a met. Doc just wants another scan in two months.

[Maia]

"Yeah, stable"

You're so cool about that, mr Kenny, that I want to slap you. You should be celebrating, my dear friend!
Not too bad for a rebel who asks for a protocol and then doesn't follow it, not too bad (I had to say you that, ha! ; )
Keep living and enjoy and climbing, sire.