Keytruda? What else is new?

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henry123
Posts: 149
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Fri Dec 08, 2017 8:23 am

Robino1 wrote: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! :)



Thanks, Robino. Pray that things work out for everyone.
46yo M
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
msi-h Lynch
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
2/18 2.3
4/18 2.0
Aspirin start
6/18 1.5 CT clear
8/18 1.3
10/18 1.2
12/18 1.1 CT Clear NED
Vegan yoga juicing apricot
Still on opdivo

rp1954
Posts: 1391
Joined: Mon Jun 13, 2011 1:13 am

Re: Keytruda? What else is new?

Postby rp1954 » Fri Dec 08, 2017 10:06 am

We get additional liver related panels (GGTP, LDH, PT/INR(prothrombin is liver related too), inflammation markers (hsCRP, ESR) and cancer markers (CA19-9, AFP) to better track and describe the (liver) mets' situation. CEA is often clearly insufficient for my wife if it is flat lined around 2 while some others are doubling and re-doubling on chemo, then quenched with added celebrex, IV C, MK4, PSK, WGP, flavinoids etc.

Better living through chemistry with less hassle and expense for us.
watchful, active researcher and caregiver for stage IVb/c CC since early 2010. 8 yrs immuno-Chemo for mCRC, now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher

Steph20021
Posts: 544
Joined: Sat Dec 27, 2014 4:58 pm
Location: Ontario, Canada

Re: Keytruda? What else is new?

Postby Steph20021 » Fri Dec 08, 2017 1:34 pm

Hey Henry, I suspect you are at the head of the pack on this, a forerunner, and you will be sharing the answers you are looking for with US soon enough. So cool Opdivo is working for you. I’m MSS but applying to a combination trial with Opdivo in Toronto. I’m looking for info on how other MSS folks have experienced Opdivo combinations but not finding anything. Wishing you continued success and NED!

henry123 wrote: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 .
DX 1/31/14 @ 33- SPS-T4a(invades visceral peri), N2a(6/106 LN), M1a(ovary) (Stage 4a) MSS; BRAF V600E mutation
2/1/14-subtotal col, lost R ovary, temp ileo
3/14-9/14- folfox; sepsis
11/14-CT/PET: L ovary met, pelvic met, (?)ghost liver met(?)
12/14-folfiri -13 rds kept me stable from 3/15-6/15
8/15-HIPEC, hysterectomy et al, 2nd temp ileo, NED?
09/15- cea 0.9
05/16- recurrence in abdo wall and lymph nodes
Jan/17- pulmonary embolism
Feb/17- 1 wk radiation to abdo wall
Aug/16- on folfiri
Jan/18-folfox

henry123
Posts: 149
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Sat Dec 09, 2017 6:54 am

Steph20021 wrote:Hey Henry, I suspect you are at the head of the pack on this, a forerunner, and you will be sharing the answers you are looking for with US soon enough. So cool Opdivo is working for you. I’m MSS but applying to a combination trial with Opdivo in Toronto. I’m looking for info on how other MSS folks have experienced Opdivo combinations but not finding anything. Wishing you continued success


Thanks.
Will keep on updating.
Only indication I have got from my oncologist so far is that in some trial cases they have stopped after 2 years of dosage of immunotherapy if the patient has NED status.
Did not know about maintenance dosage

But nothing formalised as protocol yet.
46yo M
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
msi-h Lynch
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
2/18 2.3
4/18 2.0
Aspirin start
6/18 1.5 CT clear
8/18 1.3
10/18 1.2
12/18 1.1 CT Clear NED
Vegan yoga juicing apricot
Still on opdivo

Stewsbetty
Posts: 136
Joined: Thu Jul 14, 2016 7:08 am

Re: Keytruda? What else is new?

Postby Stewsbetty » Sun Dec 10, 2017 6:58 am

henry123 wrote: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.

I am so happy for you! Hope is a whole new word for me since starting in immunotherapy. Looking forward to so many more things in life. And really looking forward to see what these therapies can do in the future for MSS folks.
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
Nov 2017 CT scans show significant shrinkage in tumours
Feb 2018 CT continued shrinkage
May 2018 CT shrinkage and stable spots

User avatar
CRguy
Posts: 9675
Joined: Sun Feb 10, 2008 6:00 pm

Re: Keytruda? What else is new?

Postby CRguy » Sun Dec 10, 2017 1:05 pm

Members in this topic may wish to read Keytruda and Vidaza combination trial as well, from our CLINICAL TRIALS and Important Links sticky topic.

Best wishes
CR
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

henry123
Posts: 149
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Wed Jan 03, 2018 11:05 am

Hello friends,
Just got my CEA numbers in .
They are down to 3.6 .
Oncologist is satisfied with the progress.
46yo M
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
msi-h Lynch
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
2/18 2.3
4/18 2.0
Aspirin start
6/18 1.5 CT clear
8/18 1.3
10/18 1.2
12/18 1.1 CT Clear NED
Vegan yoga juicing apricot
Still on opdivo

NHMike
Posts: 1842
Joined: Fri Jul 21, 2017 3:43 am

Re: Keytruda? What else is new?

Postby NHMike » Wed Jan 03, 2018 11:20 am

henry123 wrote:Hello friends,
Just got my CEA numbers in .
They are down to 3.6 .
Oncologist is satisfied with the progress.


Given where you came from, I'd say that's an understatement.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal

User avatar
susie0915
Posts: 872
Joined: Wed Aug 02, 2017 8:17 am
Facebook Username: Susan DeGrazia Hostetter
Location: Michigan

Re: Keytruda? What else is new?

Postby susie0915 » Wed Jan 03, 2018 11:42 am

Great news!
58 yrs old Dx @ 55
5/15 DX T3N0MO
6/15 5 wks chemo/rad
7/15 sigmoidoscopy/only scar tissue left
8/15 Pet scan NED
9/15 LAR
0/24 nodes
10/15 Bowel blockage. surgery,early ileo rev, c-diff inf :(
12/15 6 rds of xelox
5/16 Clear CT lung scarring/inflammation
9/16 clear colonoscopy
4/17 CT 4mm lung nod
7/17 no change lung nod
10/17 Clear pel/abd CT
11/17 CEA<.5
1/18 CT/Lung no change in 4mm nodule
5/18 CEA<.5, clear CT pel/abd/lung nod no change
11/18 CEA .6

henry123
Posts: 149
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Wed Jan 03, 2018 4:44 pm

NHMike wrote:
henry123 wrote:Hello friends,
Just got my CEA numbers in .
They are down to 3.6 .
Oncologist is satisfied with the progress.


Given where you came from, I'd say that's an understatement.


You are right ,Mike.
I think everyone including me and doctors are a bit scared to start celebrating too early.
Thanks for your wishes Susie and Mike .
46yo M
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
msi-h Lynch
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
2/18 2.3
4/18 2.0
Aspirin start
6/18 1.5 CT clear
8/18 1.3
10/18 1.2
12/18 1.1 CT Clear NED
Vegan yoga juicing apricot
Still on opdivo

henry123
Posts: 149
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Fri Feb 02, 2018 6:59 am

Hi
Cea numbers are 2.3.
Fingers crossed.

Also I was reading posts by a user of opdivo on cancercompass site . It seems that after 2.5 years and NED status, duration of infusion was increased to 4 weeks and later 6 and 8 weeks. It was stopped after 1 year. Lung cancer patient.

https://www.cancercompass.com/message-b ... 8016,0.htm

Another one melanoma

https://www.melanoma.org/find-support/p ... -diagnosis
46yo M
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
msi-h Lynch
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
2/18 2.3
4/18 2.0
Aspirin start
6/18 1.5 CT clear
8/18 1.3
10/18 1.2
12/18 1.1 CT Clear NED
Vegan yoga juicing apricot
Still on opdivo

henry123
Posts: 149
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Sat Feb 03, 2018 12:27 am

Another article on duration of immunotherapy after good response


http://cancergrace.org/cancer-101/2016/ ... -duration/
46yo M
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
msi-h Lynch
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
2/18 2.3
4/18 2.0
Aspirin start
6/18 1.5 CT clear
8/18 1.3
10/18 1.2
12/18 1.1 CT Clear NED
Vegan yoga juicing apricot
Still on opdivo

plastikos
Posts: 309
Joined: Wed Jan 14, 2015 6:09 am

Re: Keytruda? What else is new?

Postby plastikos » Tue Feb 06, 2018 9:13 am

henry123 wrote:Another article on duration of immunotherapy after good response


http://cancergrace.org/cancer-101/2016/ ... -duration/

Hi Henry. First of all congrats on your results on Opdivo. I have been on Keytruda for a year and I am doing well save for the toll it is taking financially. Where I live the drug is not covered by insurance nor are there any patients assistance programs. I have been looking for articles which would give me an idea of how long I should be on the drug. Thanks for sharing this.
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

henry123
Posts: 149
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Wed Feb 07, 2018 5:44 am

plastikos wrote:
henry123 wrote:Another article on duration of immunotherapy after good response


http://cancergrace.org/cancer-101/2016/ ... -duration/

Hi Henry. First of all congrats on your results on Opdivo. I have been on Keytruda for a year and I am doing well save for the toll it is taking financially. Where I live the drug is not covered by insurance nor are there any patients assistance programs. I have been looking for articles which would give me an idea of how long I should be on the drug. Thanks for sharing this.


Haha
I asked you same question on another thread.
One of the oncologists on team has suggested that they may increase the duration between infusions from present 2 weeks keeping dosage same.
But she does not want to stop it for now. She also said that it may be 3 4 years before exact protocol is finalised for opdivo and keytruda.
I am trying to study melanoma patients in whom these medicines started much earlier than msi CRC. It seems that 6 months to a year after CR/ ned status is a good time to stop the infusions besides increasing the duration between infusions.
For now it seems more of an issue to be finalised between patient and oncologist. Pharmaceutical companies seem to have no interest in studying when to stop giving these expensive drugs.
Besides the cost there is also the issue of developing autoimmune symptoms with unnecessary infusions.
46yo M
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
msi-h Lynch
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
2/18 2.3
4/18 2.0
Aspirin start
6/18 1.5 CT clear
8/18 1.3
10/18 1.2
12/18 1.1 CT Clear NED
Vegan yoga juicing apricot
Still on opdivo

plastikos
Posts: 309
Joined: Wed Jan 14, 2015 6:09 am

Re: Keytruda? What else is new?

Postby plastikos » Wed Feb 07, 2018 8:12 am

henry123 wrote:
plastikos wrote:
henry123 wrote:Another article on duration of immunotherapy after good response


http://cancergrace.org/cancer-101/2016/ ... -duration/

Hi Henry. First of all congrats on your results on Opdivo. I have been on Keytruda for a year and I am doing well save for the toll it is taking financially. Where I live the drug is not covered by insurance nor are there any patients assistance programs. I have been looking for articles which would give me an idea of how long I should be on the drug. Thanks for sharing this.


Haha
I asked you same question on another thread.
One of the oncologists on team has suggested that they may increase the duration between infusions from present 2 weeks keeping dosage same.
But she does not want to stop it for now. She also said that it may be 3 4 years before exact protocol is finalised for opdivo and keytruda.
I am trying to study melanoma patients in whom these medicines started much earlier than msi CRC. It seems that 6 months to a year after CR/ ned status is a good time to stop the infusions besides increasing the duration between infusions.
For now it seems more of an issue to be finalised between patient and oncologist. Pharmaceutical companies seem to have no interest in studying when to stop giving these expensive drugs.
Besides the cost there is also the issue of developing autoimmune symptoms with unnecessary infusions.

I know exactly how you feel. Yes I would imagine that these pharma companies are in no rush to decrease the recommended dosing. Still all things considered being able to worry about maintenance is a good problem to have. As long as it is working I am ok.
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


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