The Colon Club

Just bumping this same thread as an update rather than create a new one. Been on Keytruda as monotherapy for 18 months now (with SIRT somewhere in the middle of it). PET-CT last Saturday still read as NED. Stretching intervals in between doses now a week at a time. GI and I wondering what to do with my biliary stent which is still there. Good problem to have since I don’t think my GI was expecting I would live long enough for us to discuss removing it when he put it in to relieve my obstructive jaundice last December 2016. There is always hope. Hoping for the best for everyone here still fighting.

You have come a long way plastikos. Immunotherapy a BIG DEAL...a real success story thus far & @ a young age. I hope you continue to update regarding dosing frequency (not clear on that) & decision re: stent.
Sometimes I'm of the mind - If it ain't broke, don't fix it, however maybe you don't want to retire w/it.

Best Wishes
BS

Brilliant news and dilemmas of that nature are welcome . I am sure you are giving the surgeon much to smile about .
It has been fantastic following your story and seeing how far you have come .
Take care,
Stu

bitchslapped wrote:You have come a long way plastikos. Immunotherapy a BIG DEAL...a real success story thus far & @ a young age. I hope you continue to update regarding dosing frequency (not clear on that) & decision re: stent.
Sometimes I'm of the mind - If it ain't broke, don't fix it, however maybe you don't want to retire w/it.

Best Wishes
BS

Thanks BS. I get what you mean. But of course cost is an issue. Also I think everyone wants to be off treatment eventually. My onc and I are playing it by ear like I assume all other people on this treatment are due to the la k of definite protocols. Increasing dosing intervals by a week at a time now. Approaching 2 years on the drug. Will examine options then. Stop cold turkey? Half doses? Nothing definite yet.

stu wrote:Brilliant news and dilemmas of that nature are welcome . I am sure you are giving the surgeon much to smile about .
It has been fantastic following your story and seeing how far you have come .
Take care,
Stu

Thanks Stu.

bitchslapped wrote:Sometimes I'm of the mind - If it ain't broke, don't fix it, however maybe you don't want to retire w/it.

Plastikos....I was actually referring to the stent in that statement. How long one needs to stay on chemo or any kind of cancer meds, especially some that are looking @ chemo for life, side effects well just not something I would make that kind of comment on. We want all cancer patients cured & OFF chemo!

plastikos wrote:Thanks BS. I get what you mean. But of course cost is an issue. Also I think everyone wants to be off treatment eventually. My onc and I are playing it by ear like I assume all other people on this treatment are due to the la k of definite protocols. Increasing dosing intervals by a week at a time now. Approaching 2 years on the drug. Will examine options then. Stop cold turkey? Half doses? Nothing definite yet.

You pose an interesting issue re: d/c of Keytruda immunotherapy! Please keep us informed. New territory & you are a success story here.

Congratulations, Best Wishes
BS

@bitchslapped: Re stent. Sorry missed that. Yup we are also debating on what to do with the stent. I think everybody would feel better if its there so the endoscopist who put it in says we can leave it there as long as its patent.

Great news Plastikos,
Even my oncologist is increasing duration between fusions by a week every 3 months or so after a year of infusions every 2 weeks.
It started with once every 2 weeks. It is now at once a month.

henry123 wrote:Great news Plastikos,
Even my oncologist is increasing duration between fusions by a week every 3 months or so after a year of infusions every 2 weeks.
It started with once every 2 weeks. It is now at once a month.

Great to hear that Henry. Looks like we are kind of in the same boat right now. If it’s ok please do keep us updated on your treatment from time to time as well. The way I see it there’s really no right or wrong answer when it comes to how to stop or continue immunotherapy. I wouldn’t mind doing it indefinitely really if it weren’t for the cost of treatment.

plastikos wrote:

henry123 wrote:Great news Plastikos,
Even my oncologist is increasing duration between fusions by a week every 3 months or so after a year of infusions every 2 weeks.
It started with once every 2 weeks. It is now at once a month.

Great to hear that Henry. Looks like we are kind of in the same boat right now. If it’s ok please do keep us updated on your treatment from time to time as well. The way I see it there’s really no right or wrong answer when it comes to how to stop or continue immunotherapy. I wouldn’t mind doing it indefinitely really if it weren’t for the cost of treatment.

I dont have internet access much lately, but lurk occasionally.
Signing in to give an update. I havent had treatment in about 15 months, and as of my last scan (2weeks ago) I was still NED. My onc is going to continue to scan every 3 months for now since she doesnt know how long it will last.!
Its a bit nerve wracking, but at the same time enjoying the respite.
Best wishes for all!
Wonderfullymade

Wonderfullymade wrote:

plastikos wrote:

henry123 wrote:Great news Plastikos,
Even my oncologist is increasing duration between fusions by a week every 3 months or so after a year of infusions every 2 weeks.
It started with once every 2 weeks. It is now at once a month.

Great to hear that Henry. Looks like we are kind of in the same boat right now. If it’s ok please do keep us updated on your treatment from time to time as well. The way I see it there’s really no right or wrong answer when it comes to how to stop or continue immunotherapy. I wouldn’t mind doing it indefinitely really if it weren’t for the cost of treatment.

I dont have internet access much lately, but lurk occasionally.
Signing in to give an update. I havent had treatment in about 15 months, and as of my last scan (2weeks ago) I was still NED. My onc is going to continue to scan every 3 months for now since she doesnt know how long it will last.!
Its a bit nerve wracking, but at the same time enjoying the respite.
Best wishes for all!
Wonderfullymade

That is amazing news and very encouraging. Thank you for sharing Wonderfullymade.

Wonderfullymade wrote:

plastikos wrote:

henry123 wrote:Great news Plastikos,
Even my oncologist is increasing duration between fusions by a week every 3 months or so after a year of infusions every 2 weeks.
It started with once every 2 weeks. It is now at once a month.

Great to hear that Henry. Looks like we are kind of in the same boat right now. If it’s ok please do keep us updated on your treatment from time to time as well. The way I see it there’s really no right or wrong answer when it comes to how to stop or continue immunotherapy. I wouldn’t mind doing it indefinitely really if it weren’t for the cost of treatment.

I dont have internet access much lately, but lurk occasionally.
Signing in to give an update. I havent had treatment in about 15 months, and as of my last scan (2weeks ago) I was still NED. My onc is going to continue to scan every 3 months for now since she doesnt know how long it will last.!
Its a bit nerve wracking, but at the same time enjoying the respite.
Best wishes for all!
Wonderfullymade

If my calculation is correct, you took pembro for 2 years.
Please do keep updating regularly. It keeps us in positive frame of mind.

I should be returning to more internet time in the fall. I have been using my time to RV, so I don’t always have access.
I took Pembro for 20 months. I was battling colitis and then started having some breathing problems (turns out it was asthma-never had it before...side effect..dunno), so Dr did a CT and. PET to discover no evidence of disease.
I am so happy to bring positive news!!!
Next scan is December.
I continue my prayers for us all,
Wonderfully made

December scan update...
Still NED, next scan March.
Happy Holidays everyone!
Wonderfullymade

Plastikos,
Regarding removal of stent. I assume it involves surgery to remove it. If so , as per my understanding surgery of any type should be avoided if you are undergoing immunotherapy.
This is because surgery can cause autoimmune reaction by the immune system.
I was forbidden explicitly even the root canal.
Take care.
Recent scan shows NED . CEA 1.1
Duration between infusions is being increased every 3 months.