The Colon Club

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

I don't have any real answers for you, butt am bumping this thread back up to the top in hopes someone can answer your question.

Good luck,

Lee

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, maybe just looking for hope. I’m scared things might progress quickly now.
Not sure any trial will buy me much time. It seems strange at 36 years old to wait and let cancer ravage my system in due course. I have no liver or lung involvement and Jan 31 will be 4 years from diagnosis.
Like everyone is like a cure so I too can live a long life.

Hi Steph,

Have you ever consulted with Dr. Sugarbaker? I know he did a second HIPEC operation on someone with lymph node involvement. I just had a second HIPEC with him although I had no lymph node involvement. It might be worth a shot to contact him. He is very responsive!

Hi Steph,

Tom Marsilje, no longer with us now, often shared his expert knowledge on MSS treatments, incl Opdivo. See today's post by Henry123.

Henry's signature says that he started Opdivo in June 2016.
We'll miss Tom
Leon

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.

Writingdoc2 wrote:Hi Steph,

Have you ever consulted with Dr. Sugarbaker? I know he did a second HIPEC operation on someone with lymph node involvement. I just had a second HIPEC with him although I had no lymph node involvement. It might be worth a shot to contact him. He is very responsive!

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.

LeonW wrote:Hi Steph,

Tom Marsilje, no longer with us now, often shared his expert knowledge on MSS treatments, incl Opdivo. See today's post by Henry123.

Henry's signature says that he started Opdivo in June 2016.
We'll miss Tom
Leon

Steph20021 wrote: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.

LeonW wrote:Hi Steph,

Tom Marsilje, no longer with us now, often shared his expert knowledge on MSS treatments, incl Opdivo. See today's post by Henry123.

Henry's signature says that he started Opdivo in June 2016.
We'll miss Tom
Leon

Hi Steph,

I don't have any advice to offer but I am also MSS and one year from diagnosis today. I'm sorry to hear the KElizabeth's trial failed and also very saddened that we lost Tom. I hope you get some answers and will be following this post for future needs. Best of luck to you!

Shana

Steph20021,
I am msi-h and am just learning about this drug . But I think that some MSS patients do respond when it is taken in combination with other drugs. I can only share my experiences.
There used to be a lot of bodyache (bones?) especially in legs and back in the first few cycles during infusion. I read in one of Dr. Tom's blog that it may actually be a symptom that body is responding.
sorry , couldn't be of more help. Best of luck.
Every day I pray that affordable solution is found for every patient. I am sure soon it will be.

Steph20021 wrote: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.

Writingdoc2 wrote:Hi Steph,

Have you ever consulted with Dr. Sugarbaker? I know he did a second HIPEC operation on someone with lymph node involvement. I just had a second HIPEC with him although I had no lymph node involvement. It might be worth a shot to contact him. He is very responsive!

Hi Steph, I'm not sure how insurance would work, but I know he sees patients from all over the world. His wife Ilse runs his office and books all his appointments. She also will check on insurance issues for you. It might be worth a call. My first HIPEC surgeon w asnt willing to do a second HIPEC on me, but Sugarbaker was, and it was successful (knock on wood). http://www.sugarbakeroncology.com