The Colon Club

So happy to see you here, Stephen! Great to know about the insurance!

Cee Cee/ Maia

Maia wrote:So happy to see you here, Stephen! Great to know about the insurance!

Cee Cee/ Maia

Thanks Maia, I am currently NED as of last scan on 1/23/17 and am currently on Adapt protocol. I have my next scan coming up at the end of April!! I have no side effects from the xeloda and celebrex. I have been feeling great, almost back to normal, whatever that is now!!

More than happy to hear that : ) : ) : )

That's right, the regimen should be almost imperceptible, it's metronomic, very low dose chemo. Just enough to keep any potential baddies at bay : )

....currently NED as of last scan on 1/23/17 and am currently on Adapt protocol. I have my next scan coming up at the end of April!! I have no side effects from the xeloda and celebrex. I have been feeling great, almost back to normal, whatever that is now!!

That's great Stephen. There seems to be some large variations in the Xeloda dose people have been getting for Lin's Adapt protocols. Any insights or dose history you could share?

Also you've mentioned cimetidine use on or off in previous years. Any timeline of cimetidine use or CA19-9 background results you could comment on? For pancreatic cancer, 37 units of CA19-9 is the important single use cutoff at dx for pancreatic cancer. For colon cancer, ~19 units of CA19-9 is potentially a stickiness factor that is notable and shouldn't be ignored but it doesn't necessarily show CRC either.

Everyone that I have spoken to (including Dr. Lin) regarding dosage of Xeloda on Adapt is 1000mg twice a day or 2000mg/day while on the Celebrex. I have tried to use cimetidine before and after my surgeries but haven't had any luck with it so far. I have had several lung reoccurances every time. The last two being one spot on each lung twice so maybe it is keeping the quantity down but no way to know for sure.

I had this surgery in January, June and August 2014. It was difficult lonely and expensive but I have been NED since.

Sophy

And should say - started ADAPT August 2014 after last surgery

Happily, I’m part of the club. 11 mets removed, 8 in the right lung, 4 in the left.

So happy for you zephyr! Hope all does well and a speedy recovery. Which Dr. did your surgery?

So happy to hear that, Zephyr, great result! Hope you will be continuing NED

I had routine CT last week and I am still NED since last lung laser surgery August 2014. Hope you are doing well too Stevieb.

Great to see you all doing so well . Amazing results coming through .
Stu

stevieb wrote:So happy for you zephyr! Hope all does well and a speedy recovery. Which Dr. did your surgery?

Dr. Kern did my right lung and Dr. Drewes did my left lung. Dr. Drewes was ill at the time of the first surgery so Dr. Kern took over. They are both beyond wonderful!

Stevieb: if you don’t mind sharing, would you mind PMing me more information about what you wrote to your insurance company? I obviously didn’t get pre-approval and don’t have a lot of hope but it’s a lot of money and worth a shot.

Sophy: if you happen to see this, Cindy (PT) and Carla (nurse) are still there. What treasures. They remember and speak well of you.

Anyone who would like more information, please free to PM me. I’m so happy to be part of the LAPM club.

Hi Zephyr,

I would love to know more information regarding the laser surgery you had done. My father is stage 4 with multiple bilateral mets in his lungs. He is currently finishing up chemo (last round will be in December) with positive results (lung nodules along with primary tumor have all shrunk). Unfortunately, his oncologist told him his "type" of cancer is extremely aggressive and the mets will be back at some point, most likely earlier than later. I would like to know of alternative methods other than another go at chemo or potential immunotherapy (which most likely won't work for his mutation). My parents currently live in the US, but coincidentally have both lived in Germany and speak German. So travel and language would not be an issue for us (father is also in very good health, active every day).

Unfortunately, it won't let me PM you (I think it's because I haven't been active enough on the site?) but I would really like to have a side bar with you regarding the specifics of what documents need to be sent, the process, etc. I have done some basic research into it, but it would be nice to hear from someone who has gone through it. Perhaps we can figure out a way to get in contact.

Thanks!

~WorriedDaughter~ wrote:Hi Zephyr,

I would really like to have a side bar with you regarding the specifics of what documents need to be sent, the process, etc. I have done some basic research into it, but it would be nice to hear from someone who has gone through it. Perhaps we can figure out a way to get in contact.

Hi WorriedDaughter - I sent you a PM with my contact info.

zephyr wrote:

~WorriedDaughter~ wrote:Hi Zephyr,

I would really like to have a side bar with you regarding the specifics of what documents need to be sent, the process, etc. I have done some basic research into it, but it would be nice to hear from someone who has gone through it. Perhaps we can figure out a way to get in contact.

Hi WorriedDaughter - I sent you a PM with my contact info.

Hi zephyr,

I am going to see dr drewes in early August for my lung mets as well. Would it be ok if I had your contact info as well? Just want to ask you how it went ect and if I am bringing my wife how the guest house is?

Thanks!