MSS and Nivolumab (Opdivo)

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Steph20021
Posts: 503
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

MSS and Nivolumab (Opdivo)

Postby Steph20021 » Mon Dec 04, 2017 5:17 pm

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
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Currently stable suce Aug/16- on folfiri

Lee
Posts: 5297
Joined: Sun Apr 16, 2006 4:09 pm

Re: MSS and Nivolumab (Opdivo)

Postby Lee » Wed Dec 06, 2017 4:58 pm

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
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

Steph20021
Posts: 503
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: MSS and Nivolumab (Opdivo)

Postby Steph20021 » Thu Dec 07, 2017 11:20 pm

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.
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Currently stable suce Aug/16- on folfiri

Writingdoc2
Posts: 5
Joined: Mon Jul 25, 2016 8:41 pm

Re: MSS and Nivolumab (Opdivo)

Postby Writingdoc2 » Sat Dec 09, 2017 10:52 pm

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!

User avatar
LeonW
Posts: 318
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: MSS and Nivolumab (Opdivo)

Postby LeonW » Sun Dec 10, 2017 8:15 am

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
Dec 2012 - Dx CC; MM 65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen (IVa T3N1bM1a) 2/26 nodes, MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (liver failure, bad delirium, emboli, encephalopathy) pCR; cancer gone
2014/15 - recovery; benign polyp
Apr 2016 - new house/town/life
clean CTs and 1.3/1.4 CEAs: 4x2014, 4x2015/16, 2x2017
next: June 2018 w scopy - 5yr getting close

Steph20021
Posts: 503
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: MSS and Nivolumab (Opdivo)

Postby Steph20021 » Tue Dec 12, 2017 1:03 am

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!
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Currently stable suce Aug/16- on folfiri

Steph20021
Posts: 503
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: MSS and Nivolumab (Opdivo)

Postby Steph20021 » Tue Dec 12, 2017 1:04 am

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
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Currently stable suce Aug/16- on folfiri

User avatar
Shana
Posts: 156
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: MSS and Nivolumab (Opdivo)

Postby Shana » Tue Dec 12, 2017 1:16 am

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
DX - 12/16
MSS - KRAS wild
Stage IV colon cancer with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17 - 2 wks on, 1 wk off to lessen side effects
CEA 12/17 - 37.8! Finally a measurable number down from the thousands!
CT-Scan 9/1/17. Shrinkage of liver mets (4 measurable) and no bowel blockage
CT=Scan 12/1/17 Shrinkage of liver mets continue, no blockage
Removal of primary tumor and resection to be discussed next Spring 2018 based on continued positive progress

henry123
Posts: 31
Joined: Sun Oct 08, 2017 3:25 am

Re: MSS and Nivolumab (Opdivo)

Postby henry123 » Wed Dec 13, 2017 7:51 am

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.
46yo M
5/16 lap AR 14/21 L nodes +ve
T4N2M1
cea 80
6/16 Ext Rt hemicolectomy
7/16 Capox 9 cyc
9/16 cea 2
1/17 cea 550
pet shows mets in lung & peri
iri+ avastin failed
3/17 cea 10577
msi-high, lynch+ve
4/17 regro failed
5/17 cea 28800
5/17 CT increase in size of mesentric nodes , new onset of multiple nodules in liver.
6/17 Opdivo start
7/17 cea 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT shows all clear exc a nodule in Lung. liver normal
opdivo to continue
Vegan+ yoga +juicing +apricot seeds

Writingdoc2
Posts: 5
Joined: Mon Jul 25, 2016 8:41 pm

Re: MSS and Nivolumab (Opdivo)

Postby Writingdoc2 » Thu Dec 14, 2017 9:15 pm

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


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