Wonderfullymade wrote:December scan update...
Still NED, next scan March.
Happy Holidays everyone!
Wonderfullymade
Big Congratulations to you Wonderfullymade !
Wonderful news
Wonderfullymade wrote:December scan update...
Still NED, next scan March.
Happy Holidays everyone!
Wonderfullymade
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.
Wonderfullymade wrote:December scan update...
Still NED, next scan March.
Happy Holidays everyone!
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.
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.
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.
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