Immunotherapy Questions

Please feel free to read, share your thoughts, your stories and connect with others!
Posts: 92
Joined: Mon Jul 14, 2014 12:13 am

Immunotherapy Questions

Postby FindTheBestHelp » Sun Apr 07, 2019 6:53 pm

Has anyone ever gone on Immunotherapy, was then later found NED (maybe after a cleanup surgery), and then off of immunotherapy for some time now? If so, is there any limitation on being able to revisit the immunotherapy in the future if needed? Does it lose its effectiveness?

User avatar
Posts: 637
Joined: Wed Dec 21, 2011 1:08 pm
Location: Columbus, OH

Re: Immunotherapy Questions

Postby Jack&KatiesMommy » Mon Apr 08, 2019 12:08 pm

Immunotherapy has not been used long enough on CRC to have been on it for the recommended period (24 months) and off it long enough to answer your questions. MY oncologist, who has used the Keytruda since its FDA approval in 2015, said that in other types of cancer after stopping the drug, in some cases the cancer comes back and generally, the recurring cancer does not respond to immunotherapy again. In other instances, where the patient has terminated use of the immunotherapy (often times prior to the 2-year recommended treatment period) the cancer has not returned at all. Obviously, these are antidotal accounts of patient experiences by my oncologist but I don't think we've had a lot of experience with the immunology treatments yet to know how the patients and the cancer will respond over the long term.
Mommy to Jack (8) now (18) and Katie (4) now (14)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

User avatar
Posts: 214
Joined: Sun Oct 08, 2017 3:25 am

Re: Immunotherapy Questions

Postby henry123 » Tue Apr 09, 2019 2:30 pm

Even my oncologist doesn't want to stop my immunotherapy even though I am approaching 2 year mark as no protocol is in place yet.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
6/19 .9 CT clear
1/20 NED Opdivo stop

Posts: 92
Joined: Mon Jul 14, 2014 12:13 am

Re: Immunotherapy Questions

Postby FindTheBestHelp » Tue Apr 09, 2019 10:06 pm

Thanks Jack&KatiesMommy and henry123 for your replies. Looks like one of you is taking Keytruda and the other Opdivo. Apparently Keytruda and Opdivo are said to be more or less about equivalent, although there may be some differences not yet fully understood well enough to choose one over the other for CRC. the choice becomes harder with the availability of Opdivo + Yurvoy which is a combination or dual immunotherapy that in limited studies has shown to give a higher % of response amongst patients in the study, but it's also more toxic and could potentially lead to more damage done. What makes the choice hard is not knowing how much greater response it would have on a specific individual and for how long. And some of the side effects could be a higher grade than mono-therapies. I guess one just makes the best choice possible based on personal philosphy and hope it's the right one.

Posts: 34
Joined: Sun Apr 22, 2018 7:11 pm

Re: Immunotherapy Questions

Postby dauofcamom » Fri Apr 12, 2019 6:25 pm

My mom is MSI high. Her first round of chemo put her in the hospital for 15 days. So onc did not continue. After four months she was having pain and CT scan showed new 3 cm tumor on her colon at surgery site. She went on Keytruda and after three weeks her pain was gone. At three months onc did another CT scan and her tumor was completely resolved. She had another CT scan a couple weeks ago and still all clear. Onc moved her infusions from every three weeks to every four weeks.

It’s my understanding there’s really not enough data to determine how long one needs to stay on immunotherapy. But she is absolutely back to her “old” self with zero side effects from the keytruda. So she’s going to stay on this regime until something changes.
Long Distance Caregiver to 75 year old Mom
3/2018 - colonoscopy, DX malignant cecum mass
4/2018 - right hemi
Stage IIIC - T4bN1aM0
MSI High
5/2018 - Xelox Regime
10/2018 - peri Mets discovered
10/2018 - Start Keytruda every 3 weeks
12/2018 - scan all clear

Posts: 92
Joined: Mon Jul 14, 2014 12:13 am

Re: Immunotherapy Questions

Postby FindTheBestHelp » Mon Apr 15, 2019 5:30 am

That is good news that she got a response and the tumor completely resolved. It's probably a good idea in that it probably killed things that couldn't be caught in scans or detected also.

I was curious though if other immunotherapy options were on the table and discussed by the oncologist, such as Opdivo (nivolumab) instead of Keytruda (pembrolizumab), or a combination of Opdivo & Yervoy (ipilimumab) since that combination would tackle two different pathways to fight cancer but with increased risk of higher grade of side effects.

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

Who is online

Users browsing this forum: TiredandTroubled and 3 guests