Adjuvant immunotherapy

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FindTheBestHelp
Posts: 91
Joined: Mon Jul 14, 2014 12:13 am

Re: Adjuvant immunotherapy

Postby FindTheBestHelp » Mon Apr 15, 2019 5:49 am

plastikos wrote:I am MSI-H as well. Did FOLFOX + Erbitux as well as FOLFIRI as adjuvant chemo after surgeries. Had recurrences after both. After that I was put on Keytruda and I am about to hit my 2 year mark on the drug. I have been NED for almost the whole time on immunotherapy. I know it’s useless to think about it but if I had to do it all over again I probably would’ve preferred to get immuno instead right after my first surgery. It would’ve probably saved me from 1 major surgery and 28 rounds of chemo. But the data for immunotherapy wasnt there yet during that time so I dont think any onc would’ve recommended it as adjuvant with confidence.


Glad Keytruda has been working for you. I don't recall if you ever mentioned, but was Opdivo discussed by your oncologist as an equivalent alternative? Or Opdivo + Yurvoy as a dual therapy? I read somewhere that Opdivo + low dose Yurvoy is being considered as a first line treatment option.
Last edited by FindTheBestHelp on Mon Apr 15, 2019 5:52 am, edited 1 time in total.

FindTheBestHelp
Posts: 91
Joined: Mon Jul 14, 2014 12:13 am

Re: Adjuvant immunotherapy

Postby FindTheBestHelp » Mon Apr 15, 2019 5:51 am

Wonderfullymade wrote:I am also msi-h and 2 different types of chemo failed me as well! See my sig!
Wonderfullymade


Was the DVT/PE a result of the immunotherapy?

FindTheBestHelp
Posts: 91
Joined: Mon Jul 14, 2014 12:13 am

Re: Adjuvant immunotherapy

Postby FindTheBestHelp » Mon Apr 15, 2019 5:55 am

Wonderfullymade wrote:I think it was about 18 months of treatment before the colitis began. It was treated successfully with prednisone. Although I still have lights bouts of it kinda daily, nothing that stops me! It is not why I stopped. I hit the 2 year mark and had a clean PET and CT scan. It took almost 2 years though for 1 node to go away! 1 evaporated after the first scan. I don’t really know if the 2nd one was just a dead thing or not...
I have another scan in about 3 weeks. Im praying the trend continues!
Wonderfullymade
Eta :my onc got thedrug off label through my insurance co as a matter of life or death. He was a pretty remarkable Dr.


Did you get the prednisone in a low dosage while keeping the immunotherapy going, or did you stop immunotherapy while on the steroid?

FindTheBestHelp
Posts: 91
Joined: Mon Jul 14, 2014 12:13 am

Re: Adjuvant immunotherapy

Postby FindTheBestHelp » Mon Apr 15, 2019 5:58 am

Majaelisestrand wrote:Thank you everyone. Such great stories! I was just months from being treated with immunotherapy in the first line setting... But, I’m so greatful for being NED. Just wish I could have immunotherapy now, not wait for it to show up again...


Are you still on folfox or stopped at 5 cycles? i sometimes wonder if it's better to get some immunotherapy after NED thru chemo just as another measure to take to kill off what possibly can't be scanned or indicated thru CEA.

FindTheBestHelp
Posts: 91
Joined: Mon Jul 14, 2014 12:13 am

Re: Adjuvant immunotherapy

Postby FindTheBestHelp » Mon Apr 15, 2019 6:00 am

Pyro wrote:Anyone get Keytruda on Medicare?


Yes. If you have any question about it feel free to ask, either in thread or PM in case I don't catch the update in thread.

FindTheBestHelp
Posts: 91
Joined: Mon Jul 14, 2014 12:13 am

Re: Adjuvant immunotherapy

Postby FindTheBestHelp » Mon Apr 15, 2019 6:03 am

I really wish that cancer treatments such as immunotherapies would be granted to all viable candidates, especially since it gives a relatively good chance of response and durability. It's a shame that cancer patients who already have enough to worry about would also have to worry about footing the bill with prices being as high as they are for these drugs.

Pyro
Posts: 238
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Adjuvant immunotherapy

Postby Pyro » Mon Apr 15, 2019 7:38 am

FindTheBestHelp wrote:
Pyro wrote:Anyone get Keytruda on Medicare?


Yes. If you have any question about it feel free to ask, either in thread or PM in case I don't catch the update in thread.


Thanks but Merck covered it.
Aug 2015- Diag Stage 4 CC with mets to liver (38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not a surgery candidate for liver
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery, Dr. Vauthey
Mar 2016 -30% of left lobe rem, PVE
May 2016 - 70% of liver rem
Jun 2016-Rad
Jan 2017-perm colost @MDA
Jul 2017-Erb/FOLFURI
Nov 2017 -Lung & Liver ablations@MDA
Jan 2018 -Xeloda & Avastin mx
Jul 2018-Avast/FOLFURI
Sep 2018-Rad
Mar 2019 - Keytruda, CEA @36, treatment failure

User avatar
henry123
Posts: 186
Joined: Sun Oct 08, 2017 3:25 am

Re: Adjuvant immunotherapy

Postby henry123 » Thu May 02, 2019 9:56 am

It is good that you got Merck to cover it.
Anyone have experience in Canada with Compassionate care from BMS , manufacturer of Opdivo .
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
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 2.0
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
4/19 1.1
6/19 .9 CT clear
Vegan yoga juicing
Still on opdivo

User avatar
henry123
Posts: 186
Joined: Sun Oct 08, 2017 3:25 am

Re: Adjuvant immunotherapy

Postby henry123 » Sat May 04, 2019 1:04 pm

FindTheBestHelp wrote:I really wish that cancer treatments such as immunotherapies would be granted to all viable candidates, especially since it gives a relatively good chance of response and durability. It's a shame that cancer patients who already have enough to worry about would also have to worry about footing the bill with prices being as high as they are for these drugs.


Immunotherapy drugs can cause serious and life threatening side effects which can be almost impossible to manage. Also huge cost factor is an issue. It works in a very few cases which can be somewhat predetermined by genetic and tumor studies.

Patients are insisting on starting immunotherapy but it is till now not a panacea. But good oncologists do not take decision to start immunotherapy lightly.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
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 2.0
Aspirin start
6/18 1.5 CT clear
12/18 1.1 CT Clear NED
4/19 1.1
6/19 .9 CT clear
Vegan yoga juicing
Still on opdivo

plastikos
Posts: 330
Joined: Wed Jan 14, 2015 6:09 am

Re: Adjuvant immunotherapy

Postby plastikos » Tue Jun 11, 2019 7:09 am

FindTheBestHelp wrote:
plastikos wrote:I am MSI-H as well. Did FOLFOX + Erbitux as well as FOLFIRI as adjuvant chemo after surgeries. Had recurrences after both. After that I was put on Keytruda and I am about to hit my 2 year mark on the drug. I have been NED for almost the whole time on immunotherapy. I know it’s useless to think about it but if I had to do it all over again I probably would’ve preferred to get immuno instead right after my first surgery. It would’ve probably saved me from 1 major surgery and 28 rounds of chemo. But the data for immunotherapy wasnt there yet during that time so I dont think any onc would’ve recommended it as adjuvant with confidence.


Glad Keytruda has been working for you. I don't recall if you ever mentioned, but was Opdivo discussed by your oncologist as an equivalent alternative? Or Opdivo + Yurvoy as a dual therapy? I read somewhere that Opdivo + low dose Yurvoy is being considered as a first line treatment option.

Hi. Sorry if this reply is late. No I was only offered Keytruda.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED


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