Immunotherapy

Please feel free to read, share your thoughts, your stories and connect with others!
TrojanGirlie
Posts: 16
Joined: Sun Jan 08, 2017 4:17 pm
Facebook Username: Emily Ochoa

Immunotherapy

Postby TrojanGirlie » Mon May 15, 2017 10:42 pm

Hi,

My husband and I just recently found out that the FOLFIRI/Erbitux chemo combination he began in Oct. 2016 is no longer effective. His doctor at Kaiser Permanente would like to switch him to FOLFOX/Erbitux. We went to get a second opinion at UCLA medical center and the oncologist there (Dr. Rosen) said while that is not a wrong thing to do, it is not what he would do. He recommends doing immunotherapy (Keytruda or Opdivo) plus oxaliplatin and 5FU). We are torn on whose opinion to go with, because our Kaiser oncologist seems very surprised at how aggressive this cancer is, but he also does not want to use immunotherapy until we have exhausted all options since there are only a limited amount of treatment options available for colorectal cancer. We feel the UCLA oncologist has more experience and we should go with his opinion. Does anyone on this message board have any experience with doing immunotherapy and chemotherapy at the same time? Any opinions on which oncologist to trust more?

Thank you for all feedback!
31 year old Husband DX Stage 3 rectal cancer - 5/16
Xeloda and Radiation (6 weeks) - 8/16
mets to liver, Stage 4 - 10/16
5FU-Erbitux-Irinotecan - 10/16-4/17
Keytruda and XELOX- 5/17-now
Lynch Syndrome positive and MSI-high

User avatar
peanut_8
Posts: 2105
Joined: Sun May 25, 2014 1:31 pm
Location: Capital of Texas

Re: Immunotherapy

Postby peanut_8 » Tue May 16, 2017 9:46 am

Hi Trojangirlie,

I think the UCLA dr. is on to something. I noticed your husband is Luynch positive and MSI, so I was reminded of one of our members, BeansMama. She is also Lynch+ and MSI, and has tried many combinations of chemo. She recently switched to Keytruda, and is having excellent results.

I'm linking a few threads so you can track her experiences.

viewtopic.php?f=1&t=57882&hilit=beansmama

viewtopic.php?f=1&t=57375&hilit=beansmama

viewtopic.php?f=1&t=57187&hilit=beansmama

Best Wishes,
peanut
Terri aka peanut
diagnosed Jan 14, RC stage 2a, age 56
permanent colostomy
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

ACPdiddy
Posts: 28
Joined: Wed Apr 12, 2017 4:01 pm
Facebook Username: Albert Pierce

Re: Immunotherapy

Postby ACPdiddy » Tue May 16, 2017 12:20 pm

That's a tough one. Do you go for two lines of therapy (FOLFOX, then immunotherapy), hoping they'll last longer? Or do you do one "nuclear option" therapy (FOLFOX + immunotherapy), hoping that it wipes the cancer out?

I don't think there's much known about combining FOLFOX with immunotherapy. At least not from clinical trials; maybe UCLA has tried on some patients and had good luck with it. I think it would be worth asking UCLA doc what he knows about the combination that is making him recommend it. FOLFOX/Erbitux followed by immunotherapy would be the standard, clinically proven path, I think.

Also, in thinking about a nuclear option to wipe the cancer out, have you ruled out the possibility of surgically clearing the liver mets. That's another good topic for second opinions, as what looks unresectable to one surgeon may look entirely possible to another. And MSKCC in NY is basically the ultimate in liver clearing, with Dr Kemeny & associates, if you might manage a trip there.

TrojanGirlie
Posts: 16
Joined: Sun Jan 08, 2017 4:17 pm
Facebook Username: Emily Ochoa

Re: Immunotherapy

Postby TrojanGirlie » Tue May 16, 2017 10:38 pm

Thank you so much for the feedback. We appreciate it. We will look into MSKCC because we were told that we couldn't operate on the liver mets because of their location, so it would be good to get a second opinion on that as well.
31 year old Husband DX Stage 3 rectal cancer - 5/16
Xeloda and Radiation (6 weeks) - 8/16
mets to liver, Stage 4 - 10/16
5FU-Erbitux-Irinotecan - 10/16-4/17
Keytruda and XELOX- 5/17-now
Lynch Syndrome positive and MSI-high

mariane
Posts: 541
Joined: Sun Sep 13, 2015 6:16 pm

Re: Immunotherapy

Postby mariane » Tue May 16, 2017 11:17 pm

I am MSKCC patient and I am NED now.
However even Dr. K first thing she did 2 years ago was checking my microsatellite status (MSS/MSI). I was MSS. I would try Keytruda/ Opdivo. Wishing you all the best!
mom of 8 years old twins, dx @ 40 with upper rectal cancer, 10+ liver mets in 6/2015, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

BIG ROB 69
Posts: 54
Joined: Sun Aug 28, 2016 2:00 am
Location: Long Island, NY

Re: Immunotherapy

Postby BIG ROB 69 » Tue May 16, 2017 11:21 pm

viewtopic.php?f=1&t=55586
I don't know if this link will work. I am doing very well on immunotherapy, and I think the cost is the determining factor for some oncs. Also, I don't think they do immuno and chemo at the same time. Good luck to Nedville.
3/18/2015 DX CC Stage3/4 49YO MALE IN NEW YORK
Inoperable...hepatic artery
11/15 oper to rem block...colon bypass
4/16 oper to remove scar tissue
5/16 Lynch pos.
10/16 Two bile tubes installed to relieve jaundice
So far I have done the three main chemo drug rounds and on 12/19/16 start Keytruda.
No chemo after 8/3/16 CEA: 10/14/16-409 12/19/16- 887 Mostly my CEA was in the 140-180 range.
CEA: 1/9/17-415 1/30/17-156.2 2/20/17-120.8 3/13/17-98 4/21/17-83.6 5/12/17-64.7 6/1/17-32.1
7/25/17-32.6

Tim UK
Posts: 59
Joined: Fri Jun 12, 2015 1:05 am

Re: Immunotherapy

Postby Tim UK » Wed May 17, 2017 4:32 am

I have been on an immunotherapy combination trial (NCT02650713) since Oct 16. It follows previous treatments with (1) folfoxiri + avastin, then (2) targeted therapy with trametinib, dabrafenib, panitumumab. I'm stage 4 and MSS. It feels like the results from immuno can be slow in coming. In my case I saw decent reduction on the most recent CT scan after months of steady state. I would explore the immuno option; the side effects have been minimal compared with chemo or the triplet, and his MSI status makes effectiveness more likely.

Best wishes,
Tim
https://www.youtube.com/watch?v=qoQbY4A5RNA
05/15 L hemi-colectomy - robotic, laparoscopic
05/15 Dx st 3 T4N2M0 @43
kids: 11,7
BRAFm mucinous - KRASw
06/15 2 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
11/15 CRS+HIPEC
1-8/16 BRAF therapy (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: 1/16 16;650 | 2/16 3;690 | 3/16 1;36 | 4/16 2;46 | 5/16 1;29 | 6/16 1;42 | 7/16 2;44 | 8/16 3;72 and 4;135
8/16 progression (PET)
10/16 Trial: NCT02650713

Tim UK
Posts: 59
Joined: Fri Jun 12, 2015 1:05 am

Re: Immunotherapy

Postby Tim UK » Wed May 17, 2017 4:38 am

By the way, a message to Big Rob (and others with tricky inoperable liver mets), I had SBRT (cyber knife) radiotherapy on one of my liver mets 4 weeks ago. The first follow up scans show 50% shrinkage in that site but, quite interesting, a distantly located met in my peritoneum under my left ribs has also shrunk by 50% having been stable for 6 months, suggested evidence of the elusive "abscopal effect", which has been observed in other patients undergoing radio + immuno. Might be worth raising the idea of CK with your onc ...?

Tim
https://www.youtube.com/watch?v=qoQbY4A5RNA
05/15 L hemi-colectomy - robotic, laparoscopic
05/15 Dx st 3 T4N2M0 @43
kids: 11,7
BRAFm mucinous - KRASw
06/15 2 liver mets
06/15 CEA 9, CA19-9 400+
06/15 - 09/15 6 x FOLFOXIRI+Avastin
09/15 markers 4/50
10/15 drain-site met
11/15 CRS+HIPEC
1-8/16 BRAF therapy (dabrafenib, panitumumab, trametinib)
CEA;CA19-9: 1/16 16;650 | 2/16 3;690 | 3/16 1;36 | 4/16 2;46 | 5/16 1;29 | 6/16 1;42 | 7/16 2;44 | 8/16 3;72 and 4;135
8/16 progression (PET)
10/16 Trial: NCT02650713

User avatar
Maia
Posts: 2414
Joined: Fri Aug 24, 2012 8:00 am

Re: Immunotherapy

Postby Maia » Wed May 17, 2017 5:40 pm

Of course, go with immunotherapy in combination with chemo, even if MSS, with more reason if MSI-high, IMHO. Exhausting the lines of chemotherapy will only render a patient not fit enough for a trial, specially an immunotherapy one.

ACPdiddy wrote:
I don't think there's much known about combining FOLFOX with immunotherapy. At least not from clinical trials


Just today, abstract from ASCO annual meeting out:

Pembro + Folfox:

'... Results: Between 4/2015 and 9/2016, 30 subjects were enrolled with following characteristics: 11 female, 26 Caucasian, median age: 45 years (25-75), 3 with dMMR, 22 MMR-proficient, and 5 with no available data. During the safety run in, 2 patients had G3 febrile neutropenia (FN) and 1 G4 neutropenia. ...Best response was recorded as: 1 complete response, 15 partial response (CR +PR = 53%), and 14 stable disease, with 100% DCR at 8 weeks. One patient with dMMR had resection after 2 months of therapy with complete pathologic response. MPFS has not been reached (95% CI: 5.5 months, NR). Conclusions: Based on these preliminary results, PEM/mFOLFOX6 has acceptable toxicity though demonstrated a suggestion of increased neutropenia in the initial cohort. Clinical activity was seen in patients with untreated advanced CRC including those with proficient MMR. Clinical trial information: NCT02375672
http://abstracts.asco.org/199/AbstView_199_183499.html

And this for proficient MMR CRC --that is, MSS. For MSI-high, results have to be even better.

TrojanGirlie
Posts: 16
Joined: Sun Jan 08, 2017 4:17 pm
Facebook Username: Emily Ochoa

Re: Immunotherapy

Postby TrojanGirlie » Fri May 26, 2017 12:10 am

Thank you everyone for all of the information. We received approval to begin FOLFOX with Keytruda next week!
31 year old Husband DX Stage 3 rectal cancer - 5/16
Xeloda and Radiation (6 weeks) - 8/16
mets to liver, Stage 4 - 10/16
5FU-Erbitux-Irinotecan - 10/16-4/17
Keytruda and XELOX- 5/17-now
Lynch Syndrome positive and MSI-high

ladynukem
Posts: 1
Joined: Wed Aug 02, 2017 4:02 pm
Facebook Username: Krystal E Archer

Re: Immunotherapy

Postby ladynukem » Wed Aug 02, 2017 4:18 pm

Hi! My Mother has Kaiser but her Oncologist claims Kaiser does not offer immunotherapy and has refused to discuss it further with me. You say that your husband is with Kaiser and that his Oncologist has him on immunotherapy - are you able to talk with me? I am preparing to have a call with my mother's oncologist and would like to be armed with information such as "Dr. so-and-so, who is a Kaiser oncologist uses immunotherapy to treat cancer patients." I know her insurance plan covers it but am getting nothing but denial and resistance from her care team. Are you getting anywhere with your husband's treatment?

Krystal

BIG ROB 69
Posts: 54
Joined: Sun Aug 28, 2016 2:00 am
Location: Long Island, NY

Re: Immunotherapy

Postby BIG ROB 69 » Wed Aug 02, 2017 11:42 pm

Tim UK wrote:By the way, a message to Big Rob (and others with tricky inoperable liver mets), I had SBRT (cyber knife) radiotherapy on one of my liver mets 4 weeks ago. The first follow up scans show 50% shrinkage in that site but, quite interesting, a distantly located met in my peritoneum under my left ribs has also shrunk by 50% having been stable for 6 months, suggested evidence of the elusive "abscopal effect", which has been observed in other patients undergoing radio + immuno. Might be worth raising the idea of CK with your onc ...?

Tim


I went to cyberknife at Winthrop in Long Island, New York and was told they couldn't do it, probably because the tumor was too big, but now it's down to 7cm×7cm, and I have suggested it to my onc. I have a throat infection/thrush for the past two months, so a hold was put on KEYTRUDA. They also might be looking at surgery.
3/18/2015 DX CC Stage3/4 49YO MALE IN NEW YORK
Inoperable...hepatic artery
11/15 oper to rem block...colon bypass
4/16 oper to remove scar tissue
5/16 Lynch pos.
10/16 Two bile tubes installed to relieve jaundice
So far I have done the three main chemo drug rounds and on 12/19/16 start Keytruda.
No chemo after 8/3/16 CEA: 10/14/16-409 12/19/16- 887 Mostly my CEA was in the 140-180 range.
CEA: 1/9/17-415 1/30/17-156.2 2/20/17-120.8 3/13/17-98 4/21/17-83.6 5/12/17-64.7 6/1/17-32.1
7/25/17-32.6

TrojanGirlie
Posts: 16
Joined: Sun Jan 08, 2017 4:17 pm
Facebook Username: Emily Ochoa

Re: Immunotherapy

Postby TrojanGirlie » Thu Aug 03, 2017 1:35 am

ladynukem wrote:Hi! My Mother has Kaiser but her Oncologist claims Kaiser does not offer immunotherapy and has refused to discuss it further with me. You say that your husband is with Kaiser and that his Oncologist has him on immunotherapy - are you able to talk with me? I am preparing to have a call with my mother's oncologist and would like to be armed with information such as "Dr. so-and-so, who is a Kaiser oncologist uses immunotherapy to treat cancer patients." I know her insurance plan covers it but am getting nothing but denial and resistance from her care team. Are you getting anywhere with your husband's treatment?

Krystal


Hi Krystal,

It was a battle with Kaiser to get immunotherapy started. I have a coworker, who also said Kaiser would not consider immunotherapy for her husband. We had to go to UCLA for a consult (it was affordable). We saw Dr. Rosen. He wrote a rationale which we had to have sent to our oncologist. They still recommended we do FOLFOX on its own, even though UCLA recommended Keytruda and XELOX. We refused any treatment until they agreed with the plan we chose. Then it took almost 2 months for them to put together the treatment protocol. They said it was very complex and they were unfamiliar with it. So that might be one reason they don't want to give it out to you. We are between oncologists right now. Our old oncologist who approved our treatment was Dr. Birhan who is now at Kaiser Harbor City. Hope this helps! Feel free to message me if you need anymore info.
31 year old Husband DX Stage 3 rectal cancer - 5/16
Xeloda and Radiation (6 weeks) - 8/16
mets to liver, Stage 4 - 10/16
5FU-Erbitux-Irinotecan - 10/16-4/17
Keytruda and XELOX- 5/17-now
Lynch Syndrome positive and MSI-high


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: angie1975, anitaw, Beckster and 22 guests