Keytruda? What else is new?

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angielada
Posts: 10
Joined: Wed May 13, 2015 5:14 am

Keytruda? What else is new?

Postby angielada » Mon Sep 25, 2017 12:10 am

It's been awhile since I've been on... what's up with Keytruda? Anything else i should know about?
Quick overview:
Hubby originally stage 3.. then became stage 4 with liver mets and others showing in abdomen and around that area.
6 months of Folfiri with Avastin shrunk EVERYTHING (we also did Iscador injections we got from Germany along with NO CARB OR SUGAR diet by Dr Barker in Pasadena)
The treatment was so successful he was eligible for liver resection after few months. When the surgeon did the surgery couldn't see all the spots they were too small.
Free months later radioablation for leftover spots in liver.. then few months later more spots and another ablation..now more spots and ablation was canceled.
He will go back to Folfiri/Avastin this week...but what is up with Keytruda?
He has 4 small spots confined to liver.
Any suggestions?
Thanks thanks thanks!
Wife of stage iv cc
11-20-14: stage iii colon resection
12-20-14: started chemo oxiliplatin xeloda every 3 weeks about 6.5 months i think
9-1-15: ct clear
2-8-16: upgraded to stage iv liver and abdominal mets very aggressive kras mutation positive
2-12-16: start chemo folfiri with avastin
7-28-16: Liver resection
2-10-17: spots back in liver
4-17-17 : radioablation is scheduled
May 17; radioablation
July 17: radioablation
Sept '17: radioablation canceled bc of new spots.
Sept '17: Starting Folfox

veckon
Posts: 111
Joined: Thu Jul 27, 2017 7:44 am

Re: Keytruda? What else is new?

Postby veckon » Mon Sep 25, 2017 8:56 am

angielada wrote:It's been awhile since I've been on... what's up with Keytruda? Anything else i should know about?
Quick overview:
Hubby originally stage 3.. then became stage 4 with liver mets and others showing in abdomen and around that area.
6 months of Folfiri with Avastin shrunk EVERYTHING (we also did Iscador injections we got from Germany along with NO CARB OR SUGAR diet by Dr Barker in Pasadena)
The treatment was so successful he was eligible for liver resection after few months. When the surgeon did the surgery couldn't see all the spots they were too small.
Free months later radioablation for leftover spots in liver.. then few months later more spots and another ablation..now more spots and ablation was canceled.
He will go back to Folfiri/Avastin this week...but what is up with Keytruda?
He has 4 small spots confined to liver.
Any suggestions?
Thanks thanks thanks!


If his tumors are MSI-H, it could be an effective treatment. Working well for me so far, though side effects are beginning to catch up with me.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

BIG ROB 69
Posts: 62
Joined: Sun Aug 28, 2016 2:00 am
Location: Long Island, NY

Re: Keytruda? What else is new?

Postby BIG ROB 69 » Thu Sep 28, 2017 10:46 am

Veckon, what side effects, and since when?
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

veckon
Posts: 111
Joined: Thu Jul 27, 2017 7:44 am

Re: Keytruda? What else is new?

Postby veckon » Thu Sep 28, 2017 11:08 am

Fatigue is the most persistent. It started out as just standard fatigue, but has since progressed to what can only be described as narcoleptic. The last two weeks I have seen a large increase in bleeding during loose bowel movements, which have become frequent enough to keep me from sleeping. I was hospitalized for slight anemia a few days ago because of this, but other than that my blood work actually looks good. I am at Sloan Kettering now actually waiting to be examined by my colorectal surgeon in greater detail.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

BIG ROB 69
Posts: 62
Joined: Sun Aug 28, 2016 2:00 am
Location: Long Island, NY

Re: Keytruda? What else is new?

Postby BIG ROB 69 » Thu Sep 28, 2017 1:13 pm

I've also slept the days away, and have been dealing with mouth sores,chapped lips and a sore throat. Up intil recent with the steroids and anti-fungals have I felt aome relief. Good luck to ya bro.
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

henry123
Posts: 30
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Tue Oct 10, 2017 11:47 am

veckon wrote:Fatigue is the most persistent. It started out as just standard fatigue, but has since progressed to what can only be described as narcoleptic. The last two weeks I have seen a large increase in bleeding during loose bowel movements, which have become frequent enough to keep me from sleeping. I was hospitalized for slight anemia a few days ago because of this, but other than that my blood work actually looks good. I am at Sloan Kettering now actually waiting to be examined by my colorectal surgeon in greater detail.


Please consider an hour of yoga daily.
It will build up your strength and stamina especially with deep breathing exercises.
Also my haemoglobin levels improved substantially with fresh pomegranate, carrots and beets juice.
I am currently on opdivo with liver, lung and peritoneal mets. Cea levels coming drastically with opdivo.
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

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Keytruda? What else is new?

Postby Maia » Fri Oct 13, 2017 9:09 am

Pembrolizumab (Keytruda) and nivolumab (Opdivo) are a type of immunotherapy, both approved some months ago, as monotherapy, for those with CRC whose MS status is MSI-high (about a 10% of the CRC are MSI high). For the majority of the CRC patients, who are MSS, those agents and similar are being tested in combinations --that is: immunotherapy + [something else]. You have a link to a clinical trial finder in my signature line; the finder is curated by Tom Marsilje --DK37 in this forum.

And there are many ablation options and other treatments for the liver. It depends of where you are located, if you can travel, etc.

angielada
Posts: 10
Joined: Wed May 13, 2015 5:14 am

Re: Keytruda? What else is new?

Postby angielada » Mon Nov 06, 2017 8:20 pm

Thanks all...and good luck!
They are testing his MSI. He does have Kras mutation.
For those currently on Keytruda:
How long have u been on it?
Did they give u a length of time you will do it for?
How often and how long are treatments?
Do you still do regular chemo with it?
And, how bad ate side effects compared to Folfiri/Folfix?

Thank you sooo much for your replies! I really hope you are doing well!
Wife of stage iv cc
11-20-14: stage iii colon resection
12-20-14: started chemo oxiliplatin xeloda every 3 weeks about 6.5 months i think
9-1-15: ct clear
2-8-16: upgraded to stage iv liver and abdominal mets very aggressive kras mutation positive
2-12-16: start chemo folfiri with avastin
7-28-16: Liver resection
2-10-17: spots back in liver
4-17-17 : radioablation is scheduled
May 17; radioablation
July 17: radioablation
Sept '17: radioablation canceled bc of new spots.
Sept '17: Starting Folfox

Stewsbetty
Posts: 101
Joined: Thu Jul 14, 2016 7:08 am

Re: Keytruda? What else is new?

Postby Stewsbetty » Tue Nov 07, 2017 3:40 am

angielada wrote:Thanks all...and good luck!
They are testing his MSI. He does have Kras mutation.
For those currently on Keytruda:
How long have u been on it?
Did they give u a length of time you will do it for?
How often and how long are treatments?
Do you still do regular chemo with it?
And, how bad ate side effects compared to Folfiri/Folfix?

Thank you sooo much for your replies! I really hope you are doing well!


Hi Angie,

I just had my 3rd treatment of Keytruda. I was not given any end date for it. Because it is a newer thing there isn’t much data on treatment lengths. I have a dose every three weeks. The standard dose is 200mg. I think the treatment length probably varies with each infusion centre. The drug running takes about 45 minutes. But it is often more than a couple hours. Depending on how easily my port is accessed or whether the pharmacy gets the drugs over quickly, etc. I am having the Keytruda on its own, no chemo. The first cycle I was in so much pain and was extremely fatigued. The next two I have been pretty much myself. Maybe a tad more tired on the infusion week. This is way better than my reaction to folfox and folfiri. Both of those put me in the hospital at least once!
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

henry123
Posts: 30
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Mon Nov 13, 2017 6:36 am

Stewsbetty wrote:
Hi Angie,

I just had my 3rd treatment of Keytruda. I was not given any end date for it. Because it is a newer thing there isn’t much data on treatment lengths. I have a dose every three weeks. The standard dose is 200mg. I think the treatment length probably varies with each infusion centre. The drug running takes about 45 minutes. But it is often more than a couple hours. Depending on how easily my port is accessed or whether the pharmacy gets the drugs over quickly, etc. I am having the Keytruda on its own, no chemo. The first cycle I was in so much pain and was extremely fatigued. The next two I have been pretty much myself. Maybe a tad more tired on the infusion week. This is way better than my reaction to folfox and folfiri. Both of those put me in the hospital at least once!
Beth



Hello Beth,
Wishing you well. I am sure it will help you and Keytruda will smash the disease away.
Are you getting the treatment in BC only? What sort of costs are there.
Has it been approved in Canada?
Thanks.
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

Stewsbetty
Posts: 101
Joined: Thu Jul 14, 2016 7:08 am

Re: Keytruda? What else is new?

Postby Stewsbetty » Mon Nov 13, 2017 9:19 am

henry123 wrote:

Hello Beth,
Wishing you well. I am sure it will help you and Keytruda will smash the disease away.
Are you getting the treatment in BC only? What sort of costs are there.
Has it been approved in Canada?
Thanks.


Hi Henry, yes I am getting the treatment in BC. It has not been approved in Canada for MSI cancers yet so I had to push my oncologist to get it. It is $8800 per dose if you follow the US FDA approved dose of 200 mg every 3 weeks. I applied for the compassionate care program through Merck and was originally denied. Then my husband’s extended health insurance approved it at 80%. My local hospital found 3 doses left over from a previous patient and gave those to me. After they worked so well the pharmacist resubmitted my application to Merck and I got a call last week saying they would provide the drug free to me. This is such great news! Now there is no longer any financial burden on my family.

So glad for this site and Dr. Tom’s blog that introduced me to the idea of immunotherapy. After failing Folfiri I asked my Dr for a prognosis if the Keytruda didn’t work. She said I probably wouldn’t make it to Christmas. So thankful that i am responding so well on the Keytruda and may now live for years. :)
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

henry123
Posts: 30
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Mon Dec 04, 2017 11:49 am

I am happy to hear that it worked out so well for you.
I just got back my CT scans after 6 months of Opdivo. They are mostly clear and only a lesion is there in lung. Earlier I had met spots in liver , lung and peritoneal region.

Cea levels are coming down too.
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

NHMike
Posts: 689
Joined: Fri Jul 21, 2017 3:43 am

Re: Keytruda? What else is new?

Postby NHMike » Mon Dec 04, 2017 5:14 pm

Stewsbetty wrote:
henry123 wrote:

Hello Beth,
Wishing you well. I am sure it will help you and Keytruda will smash the disease away.
Are you getting the treatment in BC only? What sort of costs are there.
Has it been approved in Canada?
Thanks.


Hi Henry, yes I am getting the treatment in BC. It has not been approved in Canada for MSI cancers yet so I had to push my oncologist to get it. It is $8800 per dose if you follow the US FDA approved dose of 200 mg every 3 weeks. I applied for the compassionate care program through Merck and was originally denied. Then my husband’s extended health insurance approved it at 80%. My local hospital found 3 doses left over from a previous patient and gave those to me. After they worked so well the pharmacist resubmitted my application to Merck and I got a call last week saying they would provide the drug free to me. This is such great news! Now there is no longer any financial burden on my family.

So glad for this site and Dr. Tom’s blog that introduced me to the idea of immunotherapy. After failing Folfiri I asked my Dr for a prognosis if the Keytruda didn’t work. She said I probably wouldn’t make it to Christmas. So thankful that i am responding so well on the Keytruda and may now live for years. :)
Beth


I am very glad to hear that you have a working solution with one of the new wonder-drugs and that it won't break the bank.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

henry123
Posts: 30
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Thu Dec 07, 2017 10:27 am

Does any one have experience or knowledge with regards to immunotherapy (keytruda/opdiva) , what is protocol (if any) if there is complete regression of tumors.

For how long is it continued once ct /cea are normal.

Is there any maintenance dose ?

thanks .
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

User avatar
Robino1
Posts: 225
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Keytruda? What else is new?

Postby Robino1 » Thu Dec 07, 2017 12:19 pm

I don't have an answer for you but I did want to congratulate you on the impressive drop in your CEA numbers!! Sounds like Opdivo is working REALLY well for you! :)
At 54 2014 1st colonoscopy colon cancer detected.
Colon resect right ascending
margins clear. No chemo Stage II
2017
Distended abd, pain in intestines.
CT scan shows seeding
Ascites
Lap diag - cancer on the omentum
CEA 217
CEA 219
PET cancer on the omentum, susp activ right abdomen
FOLFOX started 6/17
CEA 202
Not genetic
8/29/17 CT scan showed excellent melting of the tumor. Chemo is working!
Ascites is gone
CEA: 9/30/17 -109; 10/12/17 - 99.1; 11/4/17 - 90.7; 11/30/17 - 70.7
BRAF V600e mutation :(


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