Adjuvant immunotherapy

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Majaelisestrand
Posts: 2
Joined: Mon Jan 07, 2019 7:15 am
Facebook Username: Majsan

Adjuvant immunotherapy

Postby Majaelisestrand » Fri Feb 08, 2019 4:27 pm

Hi everyone.

I’m new here :)

I’m 9 months NED from stage IV rectal cancer. Lynch positive, MSI-high. I have muscinous carcinoma, KRAS-mutant. I had 5 cycles of folfox in the adjuvant setting. I wanted immunotherapy, given the results it has in the adjuvant setting for melanoma. But they didn’t want to give it to me because of the lack of evidence in trials[for adjuvant immunotherapy for CRC]. Has anyone here gotten it?

Best regards
Dxd 11/09/17 @ 27 years
Stage IV rectal cancer. Small primary. One huge livermet.
N0
Lynch positive, MSI-high, KRAS-mutant muscinous carcinoma.
4 folfiri + avastin cycles. Primary shrinks, met grows.
3 folfoxiri cycles + avastin. Primary is no longer visible. Met shrinks some.
Liverresection, 72% resected.
Removing my whole colon and rectum, one ovary and uterus. Mostly prophylactic other than the rectum.
5 Folfox cycles.
NED since May 2018
CEA 320 -> 0.5

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

Re: Adjuvant immunotherapy

Postby dauofcamom » Fri Feb 08, 2019 7:17 pm

My mom was stage 4 with Mets to her peri. She is MSI high but negative for Lynch. Chemo failed on first cycle. She almost died from it so onc discontinued. We crossed our fingers that it wouldn’t come back after surgery removing original tumor. But then it did. Onc put her on Keytruda in October. Three Months later her peri Mets are gone and she is NED according to her scans.
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

User avatar
henry123
Posts: 191
Joined: Sun Oct 08, 2017 3:25 am

Re: Adjuvant immunotherapy

Postby henry123 » Mon Feb 11, 2019 12:55 pm

I am msi-high and Lynch positive. I was diagnosed with stage IV colon cancer.
Immunotherapy in form of Nivolumab Opdivo worked out for me.
I did not respond at all to various chemos including capacitibine, regrofenib and avastin.
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

boxhill
Posts: 298
Joined: Fri Apr 06, 2018 11:40 am

Re: Adjuvant immunotherapy

Postby boxhill » Mon Feb 11, 2019 6:39 pm

I was MSI-H with no known masses after surgery as of last spring, so I had to do FOLFOX as first-line adjuvant therapy. I finished FOLFOX in November, and my scans in July and November showed nothing. CEA is not a marker for me. My oncologist and I were uneasy with this, since I had originally had a very small liver met that didn't show on the pre-surgical CT, which the surgeon found and removed, so he requested an MRI. MRI revealed that another tiny subcapsular met had appeared, but more concerning, there were 2 enlarged nodes in the porta hepatis. They were pretty much inoperable at that point, and if they grew could cause problems. So on New Year's Eve I started Keytruda as my second line. Finally!

My oncologist says that he doubts I could get into a trial even now with the MRI results: he thinks they are too small. It was very frustrating to have to wait, knowing that it would likely be the best treatment for me. And of course now it seems as if I may have gone through folfox for nothing. Except neuropathy in my fingers, that is! :roll:

Anyway, I just had my third keytruda infusion today, and so far it has been a complete breeze, with no side effects at all that I can determine. Keeping my fingers crossed that that continues. And that it works, of course.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: Adjuvant immunotherapy

Postby Stewsbetty » Mon Feb 11, 2019 9:31 pm

boxhill wrote:I was MSI-H with no known masses after surgery as of last spring, so I had to do FOLFOX as first-line adjuvant therapy. I finished FOLFOX in November, and my scans in July and November showed nothing. CEA is not a marker for me. My oncologist and I were uneasy with this, since I had originally had a very small liver met that didn't show on the pre-surgical CT, which the surgeon found and removed, so he requested an MRI. MRI revealed that another tiny subcapsular met had appeared, but more concerning, there were 2 enlarged nodes in the porta hepatis. They were pretty much inoperable at that point, and if they grew could cause problems. So on New Year's Eve I started Keytruda as my second line. Finally!

My oncologist says that he doubts I could get into a trial even now with the MRI results: he thinks they are too small. It was very frustrating to have to wait, knowing that it would likely be the best treatment for me. And of course now it seems as if I may have gone through folfox for nothing. Except neuropathy in my fingers, that is! :roll:

Anyway, I just had my third keytruda infusion today, and so far it has been a complete breeze, with no side effects at all that I can determine. Keeping my fingers crossed that that continues. And that it works, of course.



Curious when you will be getting your first scan? Sure hope that it is working for you. :)
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability to present
November 2018 CT shows only 1 small tumour left

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

Re: Adjuvant immunotherapy

Postby plastikos » Mon Feb 11, 2019 9:51 pm

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.
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

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: Adjuvant immunotherapy

Postby Wonderfullymade » Tue Feb 12, 2019 2:01 pm

I am also msi-h and 2 different types of chemo failed me as well! See my sig!
Wonderfullymade
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

mpbser
Posts: 912
Joined: Wed Apr 19, 2017 11:52 am

Re: Adjuvant immunotherapy

Postby mpbser » Tue Feb 12, 2019 3:14 pm

Wow, these are great stories. I wish my husband was MSI-H!
Wife 4/17 Dx age 45
5/17 LAR
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
lymph nodes: 9 of 96
CEA: 2.9 to 2.2
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry Normal
Tumor: MTOR, APC, TP53
Fall 2017 FOLFOX shrank the 1 met in liver
1/18 Liver left hepatectomy seg 4
5/18 CT clear
12/18 MRI shows 1 liver met
3/7/19 Resection & HAI
4/1/19 Folfiri & FUDR
5/13/19 HAI pump catheter dislodge, nearly hemorrhaged to death
6/10/19 5FU

boxhill
Posts: 298
Joined: Fri Apr 06, 2018 11:40 am

Re: Adjuvant immunotherapy

Postby boxhill » Tue Feb 12, 2019 5:50 pm

My oncologist said we'd do an MRI in/after the fourth month. At least I think that's what he said, month, not cycle. that would be around the 7th cycle. Because my nodes and liver met didn't show up on a CT scan, we'll go straight to MRI.

I've read various things about how long it takes keytruda to work. I gather that some people have pseudoprogression, where initially the masses swell with the invaders. This is actually a good sign, because it is followed by shrinkage. In some people it takes 4-6 months for the response to be seen. In some it is much quicker. I think he wants to avoid scanning too early.

Before Keytruda was FDA approved for all MSI-H tumors, your oncologist might have tried to prescribe it, but I doubt your insurance company would have paid for it. Mine costs $11,000 per infusion (the rate negotiated by the insurance company, or it would be higher). So unless you could get into a trial or were extremely rich, it is unlikely that the onc's willingness to try it would have made a difference. :cry:

Wonderfullymade, how long did it take for you to develop colitis on Keytruda? Was it successfully treated, or is that why you stopped?
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: Adjuvant immunotherapy

Postby Wonderfullymade » Tue Feb 12, 2019 7:35 pm

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.
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: Adjuvant immunotherapy

Postby Stewsbetty » Wed Feb 13, 2019 8:18 am

boxhill wrote:My oncologist said we'd do an MRI in/after the fourth month. At least I think that's what he said, month, not cycle. that would be around the 7th cycle. Because my nodes and liver met didn't show up on a CT scan, we'll go straight to MRI.

I've read various things about how long it takes keytruda to work. I gather that some people have pseudoprogression, where initially the masses swell with the invaders. This is actually a good sign, because it is followed by shrinkage. In some people it takes 4-6 months for the response to be seen. In some it is much quicker. I think he wants to avoid scanning too early.

Before Keytruda was FDA approved for all MSI-H tumors, your oncologist might have tried to prescribe it, but I doubt your insurance company would have paid for it. Mine costs $11,000 per infusion (the rate negotiated by the insurance company, or it would be higher). So unless you could get into a trial or were extremely rich, it is unlikely that the onc's willingness to try it would have made a difference. :cry:

Wonderfullymade, how long did it take for you to develop colitis on Keytruda? Was it successfully treated, or is that why you stopped?


Hello Boxhill, where are you from? I was looking into self pay for Keytruda before I was accepted to their compassionate care program. In Canada the charges were $8800 per 200mg dose. Sure hope they aren’t over charging you!

Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability to present
November 2018 CT shows only 1 small tumour left

Majaelisestrand
Posts: 2
Joined: Mon Jan 07, 2019 7:15 am
Facebook Username: Majsan

Re: Adjuvant immunotherapy

Postby Majaelisestrand » Thu Feb 14, 2019 5:02 pm

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...
Dxd 11/09/17 @ 27 years
Stage IV rectal cancer. Small primary. One huge livermet.
N0
Lynch positive, MSI-high, KRAS-mutant muscinous carcinoma.
4 folfiri + avastin cycles. Primary shrinks, met grows.
3 folfoxiri cycles + avastin. Primary is no longer visible. Met shrinks some.
Liverresection, 72% resected.
Removing my whole colon and rectum, one ovary and uterus. Mostly prophylactic other than the rectum.
5 Folfox cycles.
NED since May 2018
CEA 320 -> 0.5

boxhill
Posts: 298
Joined: Fri Apr 06, 2018 11:40 am

Re: Adjuvant immunotherapy

Postby boxhill » Fri Feb 15, 2019 7:20 am

Stewsbetty, I'm in the USA. $11K was the price negotiated by my insurer at the time of my first infusion, Cigna. Otherwise it would be something like $15K. I don't know what my current insurer, Anthem, pays for it. We hit the deductible for me so quickly this year--my H, who does that stuff, lowered it in anticipation of my going on keytruda-- that it is irrelevant to me at this point. You know that lots of drugs cost far more here than they do in Canada. That's why people try to cross the border and buy them there. :roll:

On another forum, a Canadian was saying that her province did not approve Keytruda for CRC--even now--and so self-pay way her only option. Apparently she could not get compassionate use, and the best she could do at this point was a 20% discount on the same price you cite.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED, 2mm indeterminate lung nodule
11/20/18 CT NED, Lung nodule calcified granuloma. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda

Pyro
Posts: 274
Joined: Mon Oct 12, 2015 7:40 pm
Location: Tucson, AZ

Re: Adjuvant immunotherapy

Postby Pyro » Fri Feb 15, 2019 7:59 pm

Anyone get Keytruda on Medicare?
Aug 2015- Diag Stage 4 CC with liver Mets(38/m)
Sep 2015- Avastin/Folfox/Iron
Dec 2015-Not liver surgery candidate
Jan 2016- Erbitux/Folfiri, 2nd opinion at MDA in TX
Feb 2016 -MDA liver surgery
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 fail, CEA @36
Jun 2019 - FOLFURI until I can’t stand it

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: Adjuvant immunotherapy

Postby Stewsbetty » Sun Feb 17, 2019 10:06 am

boxhill wrote:Stewsbetty, I'm in the USA. $11K was the price negotiated by my insurer at the time of my first infusion, Cigna. Otherwise it would be something like $15K. I don't know what my current insurer, Anthem, pays for it. We hit the deductible for me so quickly this year--my H, who does that stuff, lowered it in anticipation of my going on keytruda-- that it is irrelevant to me at this point. You know that lots of drugs cost far more here than they do in Canada. That's why people try to cross the border and buy them there. :roll:

On another forum, a Canadian was saying that her province did not approve Keytruda for CRC--even now--and so self-pay way her only option. Apparently she could not get compassionate use, and the best she could do at this point was a 20% discount on the same price you cite.


Yes, there are no provinces that cover Keytruda for CRC. So trials or self pay (or private insurance) is the only option. I was planning self pay (my husbands insurance approved 3 months and would re evaluate then) and then my hospital found 3 doses of undesigated Keytruda they said I could use. After those worked so well we reapplied for compassionate care to Merck and they agreed to cover me. I heard from another patient that they often reject people for compassionate care but if you self pay and it is working that they may cover you if you reapply.

Kind of surprised to hear there is something cheaper in Canada than the States. :lol: I guess we make up for it with our higher gas prices!
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability to present
November 2018 CT shows only 1 small tumour left


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