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by Steph20021
Tue Dec 12, 2017 1:04 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSS and Nivolumab (Opdivo)
Replies: 9
Views: 514

Re: MSS and Nivolumab (Opdivo)

Thanks Leon. Yes I used to follow Tom’s blog. It’s very sad he is no longer with us. I know Henry to be MSI but I am following his journey with opdivo and will continue to do so!!! Also following KElizabeth who is MSS and just had a combination trial fail her unfortunately. Hi Steph, Tom Marsilje, n...
by Steph20021
Tue Dec 12, 2017 1:03 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSS and Nivolumab (Opdivo)
Replies: 9
Views: 514

Re: MSS and Nivolumab (Opdivo)

No I haven’t but I’m in Canada and not sure that my province would cover that? But I am meeting with my first hipec surgeon on Jan 8 for him to reconsider his position of no second hipec that he made after my hipec recurrence with lymph nodes. Hi Steph, Have you ever consulted with Dr. Sugarbaker? I...
by Steph20021
Mon Dec 11, 2017 9:07 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Nephrostomy tube
Replies: 1
Views: 136

Nephrostomy tube

I got my nephrostomy tube today so another bag to empty along with my ileostomy.
It’s still quite painful and feels like I put my back out. I’ll have home care coming to change the bandage and teach me about it but I hope the tube is temporary and this back pain short lived.
by Steph20021
Sat Dec 09, 2017 6:00 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Peri mets
Replies: 7
Views: 432

Re: Peri mets

Sounds like you need to get an opinion on having HIPEC. I would do that with the hope of getting to NED before chemo. Hi everybody - just found out I have several tiny peritoneal mets (SRC), so they didnt do my planned resection. Am scared out of my mind. Any advice on best treatment options/centers...
by Steph20021
Fri Dec 08, 2017 1:34 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda? What else is new?
Replies: 20
Views: 1596

Re: Keytruda? What else is new?

Hey Henry, I suspect you are at the head of the pack on this, a forerunner, and you will be sharing the answers you are looking for with US soon enough. So cool Opdivo is working for you. I’m MSS but applying to a combination trial with Opdivo in Toronto. I’m looking for info on how other MSS folks ...
by Steph20021
Thu Dec 07, 2017 11:20 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSS and Nivolumab (Opdivo)
Replies: 9
Views: 514

Re: MSS and Nivolumab (Opdivo)

Thank you Lee. Folfori kept me stable just over a year, and now I have a new mass protruding off my sigmoid stump and interfering with my ureter. I will have a Nephrostomy tube out in on Monday to alleviate the stress on my kidney until a stent can be done. I don’t know what answers I’m seeking here...
by Steph20021
Wed Dec 06, 2017 12:05 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Anothe milestone reached in my journey
Replies: 8
Views: 210

Re: Anothe milestone reached in my journey

Congrats on the milestone Mike and enjoy your new truck :)
by Steph20021
Tue Dec 05, 2017 3:10 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Immunotherapy
Replies: 16
Views: 2315

Re: Immunotherapy

I just wanted to echo Andry below as I am also very inspired by Tim’s progress in the trial. Thanks for sharing and keeping us updated on how it is going for you Tim. As a fellow MSS I just feel so lost when it comes to clinical trial options to try. Nothing seems very hopeful but you give me hope. ...
by Steph20021
Tue Dec 05, 2017 3:02 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Durvalumab and Cediranib Clinical trial - I'm in!
Replies: 21
Views: 1167

Re: Durvalumab and Cediranib Clinical trial - I'm in!

I hope you get a new plan B trial very soon. I am sorry the last one didn’t help :(
by Steph20021
Mon Dec 04, 2017 5:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: MSS and Nivolumab (Opdivo)
Replies: 9
Views: 514

MSS and Nivolumab (Opdivo)

Sorry if this is discussed elsewhere but I’m MSS and my oncologist is suggesting I try a clinical trial where I’ll get either nivolumab or Nivo plus something.
Has anyone had luck with Nivo who is MSS??

Thanks
Steph -getting desperate as folfiri no longer working
by Steph20021
Thu Oct 12, 2017 9:17 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Looking for HIPEC Experiences
Replies: 15
Views: 911

Re: Looking for HIPEC Experiences

I had hipec in Toronto and was NED and off chemo for 9 months before the cancer came back. Tough recovery but no regrets, Id do it again if I could.
Happy to answer any questions.
by Steph20021
Thu Oct 12, 2017 9:09 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Calling ALL Colorectal CANUCKS !
Replies: 310
Views: 55658

Re: Calling ALL Colorectal CANUCKS !

Tobermory is such a beautiful area!!! Henry, here is the link about Keytruda, not sure if it answers your question: https://lungdiseasenews.com/2017/09/26/metastatic-non-small-cell-lung-cancer-nsclc-therapy-keytruda-approved-canada/ Steph20021, last summer I went to Tobermory, what a beutyfull place...
by Steph20021
Thu Oct 05, 2017 12:54 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: A friend who passed formCRC
Replies: 8
Views: 837

Re: A friend who passed formCRC

I am so sorry for the loss of your friend. I've read peri mets are bad in terms of prognosis. Im in a similar boat. *hug* please don't have survivors guilt, I know easier said than done.
by Steph20021
Thu Oct 05, 2017 12:47 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Deciding if I should take Irinotecan and Cyramza
Replies: 7
Views: 484

Re: Deciding if I should take Irinotecan and Cyramza

Irinotecan is not giving me any diarrhea trouble, and very little tingles in my hands, usually it's with warm or hot water that I may feel a bit of tingles. Mostly it's sleepiness for me. My vision has also gotten worse, but I've been on it for a year now. I didn't notice change in vision right away...

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