The Colon Club

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

Big Congratulations to you Wonderfullymade !
Wonderful news

henry123 wrote: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.

Hi Henry. Sorry went on vacation. Just read this. Yeah removal would require an endoscopy to access the stent. I will keep this in mind. Thanks.

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

Amazing news! As for me I am approaching mg 2 year mark on Pembro. Onc and I will decide what to do then.

Keeping you in my thoughts for a clean scan! Let us know whats decided treatment wise!
Wonderfullymade

Hi,

I have been NED since June 2018 . I am Lynch positive.
Two thoughts regarding future course of action are going on by my oncologists .

1. Stop infusions at two year mark in June 19. Logic: further infusions don't have much effect other than increased chances of toxicity.

2. Continue maintenance dose indefinitely at 4 or 6 week interval . Logic : young patient and toxicity normally happens in initial couple of months.

No study is there for either decisions.

Any thoughts/inputs in this regard would be appreciated.

Hi Henry,
My onc with option #1based on toxicity. I was starting to have colitis issues and she said we can always start it back up again if we need to...so far so good.
I am not lynch so I don’t know if that would make a difference.
I am getting scans every 3 months still.
My thoughts are with you! Wonderfullymade

henry123 wrote:Hi,

I have been NED since June 2018 . I am Lynch positive.
Two thoughts regarding future course of action are going on by my oncologists .

1. Stop infusions at two year mark in June 19. Logic: further infusions don't have much effect other than increased chances of toxicity.

2. Continue maintenance dose indefinitely at 4 or 6 week interval . Logic : young patient and toxicity normally happens in initial couple of months.

No study is there for either decisions.

Any thoughts/inputs in this regard would be appreciated.

I don’t know if cost is an issue (it is where I am from) but I would prefer to continue maintenance at the least frequent and lowest dosing that your onc is comfortable with. Again no evidence to support this. In my case I have been playing around with the idea of stretching out the time in between doses to (if possible) 8-12 weeks. Or maybe stop cold turkey and switch to something cheaper like Xeloda + Avastin (which I have never tried). Where I am from Pembro is not covered by insurance or patient assistance programs.

PET CT from yesterday came back. Still NED. Hoping for the best for us all.

Wonderful news Big Congratulations!

Great news . You made my day .
Stu

This is such great news for you! I am so happy to read this.

It’s been along time since I’ve been on this site but I read occasionally. As with everyone with this diagnosis or a family member who has colon cancer, it’s been a very tough year.

My mom did not respond well to chemo, in fact it almost killed her. Literally. She landed in the hospital for two weeks after her first round and so her oncologist took chemo off the table. Our only hope was to pray that it didn’t come back. Things were great for about four or five months, but the cancer did come back and this time it was in her peritoneum and deemed in operable. She was terminal and was going downhill rapidly.

I flew out to California in October to be with her and my brother and I were making plans for hospice as it didn’t appear she had much more than a few weeks. We had an appointment with her oncologist and because she is MSI high, he put her on immunotherapy (Keytruda). Within two weeks of her first round she was feeling amazing. Her pain was gone and she was putting weight back on. Three months after starting immunotherapy she had a CT scan and it showed that she had a complete response to the immunotherapy as her tumors were completely gone. She has put on 20 pounds and is as energetic and feeling like she did before she ever had cancer. It has been nothing short of a miracle.

Never ever give up.

Oh daufcamom, what a wonderful thing that has happened for your mom So happy for you !! Thank You for sharing this good news with us <3

dauofcamom wrote:This is such great news for you! I am so happy to read this.

It’s been along time since I’ve been on this site but I read occasionally. As with everyone with this diagnosis or a family member who has colon cancer, it’s been a very tough year.

My mom did not respond well to chemo, in fact it almost killed her. Literally. She landed in the hospital for two weeks after her first round and so her oncologist took chemo off the table. Our only hope was to pray that it didn’t come back. Things were great for about four or five months, but the cancer did come back and this time it was in her peritoneum and deemed in operable. She was terminal and was going downhill rapidly.

I flew out to California in October to be with her and my brother and I were making plans for hospice as it didn’t appear she had much more than a few weeks. We had an appointment with her oncologist and because she is MSI high, he put her on immunotherapy (Keytruda). Within two weeks of her first round she was feeling amazing. Her pain was gone and she was putting weight back on. Three months after starting immunotherapy she had a CT scan and it showed that she had a complete response to the immunotherapy as her tumors were completely gone. She has put on 20 pounds and is as energetic and feeling like she did before she ever had cancer. It has been nothing short of a miracle.

Never ever give up.

Hi
Congratulations on wonderful response to immunotherapy by your mother. It is very similar to my own journey.
Can you kindly share protocol and is she still on Keytruda?
Since it is such new treatment , oncologists are still trying to determine best course of treatment. As one of fellow cc member said we are trailblazers and determining protocols for future patients.
Best wishes .

plastikos wrote:

henry123 wrote:Hi,

I have been NED since June 2018 . I am Lynch positive.
Two thoughts regarding future course of action are going on by my oncologists .

1. Stop infusions at two year mark in June 19. Logic: further infusions don't have much effect other than increased chances of toxicity.

2. Continue maintenance dose indefinitely at 4 or 6 week interval . Logic : young patient and toxicity normally happens in initial couple of months.

No study is there for either decisions.

Any thoughts/inputs in this regard would be appreciated.

I don’t know if cost is an issue (it is where I am from) but I would prefer to continue maintenance at the least frequent and lowest dosing that your onc is comfortable with. Again no evidence to support this. In my case I have been playing around with the idea of stretching out the time in between doses to (if possible) 8-12 weeks. Or maybe stop cold turkey and switch to something cheaper like Xeloda + Avastin (which I have never tried). Where I am from Pembro is not covered by insurance or patient assistance programs.

Congrats on clear PET-CT.
Cost is a bit of issue but defintely treatment is more important.
I did not respond at all to Xeloda and Avastin.
Will keep you posted.

Henry:
I have no specific data but antidotally, my oncologist (the one prescribing the Keytruda) stated that if after 2 years on Keytruda I had any potential cancer evident in my body (via CT scan or via CEA) he suggested, based on past experience that we maintain the course and continue treatment indefinitely. He said since he has been prescribing Keytruda (since its original release in 2011) he has had a number of instances where patients that had inactive tumors or CEAs evidencing cancer but who had been stable for months to years, stopped treatment after the 2 year mark only to have their cancer return and they were unable to get it under control again. Again, no scientific evidence of anything but my oncologist with 7 years of experience with immunotherapy's suggestion to me.
Cynthia