Keytruda? What else is new?

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henry123
Posts: 114
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Sun Apr 15, 2018 12:12 pm

Hello
Just wanted to update that my latest cea number is 2.0 .
It's within normal range.
Continuing with Nivolumab, aspirin etc.
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 , new 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 normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear .
NED
Vegan yoga juicing apricot

Heather
Posts: 1
Joined: Sat Jun 02, 2018 12:05 pm

Re: Keytruda? What else is new?

Postby Heather » Sat Jun 02, 2018 12:47 pm

Stewsbetty wrote:
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



Hi Betty,

My mom was diagnosed with stage 4 CRC Easter 2017. She had emergency surgery to remove the blosckage the same day, followed by folfiri, which we found out failed. We are trying to figure out how to get keytruda or opdiva and are very interested in learning more about your experience. We found out yesterday that my moms tumor is KRAS and she has the dMMR gene. She is also a BC resident. We applied for the compassionate care program through MERCK but were denied. Would you be willing to chat via email or phone? I hope you’re doing well and the treatments are working for you.

henry123
Posts: 114
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Wed Jun 06, 2018 7:13 am

Hello
Have been declared NED with clear CT and normal CEA Levels of 1.5 .
To continue with Opdivo for now.
May stop after 6 months or a year.
Oncologist doesn't want to risk a relapse and taking conservative approach.
Will update in detail later.
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 , new 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 normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear .
NED
Vegan yoga juicing apricot

User avatar
LPL
Posts: 385
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: Keytruda? What else is new?

Postby LPL » Wed Jun 06, 2018 10:02 am

henry123 wrote:Hello
Have been declared NED with clear CT and normal CEA Levels of 1.5 .
To continue with Opdivo for now.
May stop after 6 months or a year.
Oncologist doesn't want to risk a relapse and taking conservative approach.
Will update in detail later.

BIG CONGRATULATIONS :D
Declared NED with clear CT and normal CEA! sounds wonderful henry123.
All the best to you. /LPL
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

plastikos
Posts: 294
Joined: Wed Jan 14, 2015 6:09 am

Re: Keytruda? What else is new?

Postby plastikos » Wed Jun 06, 2018 10:08 am

henry123 wrote:Hello
Have been declared NED with clear CT and normal CEA Levels of 1.5 .
To continue with Opdivo for now.
May stop after 6 months or a year.
Oncologist doesn't want to risk a relapse and taking conservative approach.
Will update in detail later.

Amazing! Big congrats.
Diagnosed St. IV Colon CA @ 37, male, Kras wild type, 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 12/2016 -> pseudoprogression (?), biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab
Sept 2017 - SIRT

henry123
Posts: 114
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Wed Jun 06, 2018 4:46 pm

Thanks.
Oncologist has warned that with immunotherapy we are playing with a very tricky system of body, the immune system. We are not merely strengthening it but rather changing it.
We should avoid any sudden changes or shocks to immune system such as surgery ( I remembered Beamsmama) or even sudden change of medication for a few years.
He plans to slowly wean off the medicine.
He doesn't want me to even add or reduce any supplements or even probiotics without his knowledge and consent.
He also emphasised importance of light regular exercise and not gaining too much weight.
He is getting good feedback about Keytruda and Opdivo from other oncologists too.
He is hoping that soon some solution comes for mss patients too rather than just msi-high cases.
Thanks again.
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 , new 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 normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear .
NED
Vegan yoga juicing apricot

Stewsbetty
Posts: 118
Joined: Thu Jul 14, 2016 7:08 am

Re: Keytruda? What else is new?

Postby Stewsbetty » Thu Jun 07, 2018 4:00 am

Heather wrote:
Stewsbetty wrote:
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



Hi Betty,

My mom was diagnosed with stage 4 CRC Easter 2017. She had emergency surgery to remove the blosckage the same day, followed by folfiri, which we found out failed. We are trying to figure out how to get keytruda or opdiva and are very interested in learning more about your experience. We found out yesterday that my moms tumor is KRAS and she has the dMMR gene. She is also a BC resident. We applied for the compassionate care program through MERCK but were denied. Would you be willing to chat via email or phone? I hope you’re doing well and the treatments are working for you.


You bet! Will message you with my phone number. Sorry for the slow reply. I don’t check in here every day.
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 2917 CT scans show significant shrinkage in tumours

Stewsbetty
Posts: 118
Joined: Thu Jul 14, 2016 7:08 am

Re: Keytruda? What else is new?

Postby Stewsbetty » Thu Jun 07, 2018 4:02 am

henry123 wrote:Hello
Have been declared NED with clear CT and normal CEA Levels of 1.5 .
To continue with Opdivo for now.
May stop after 6 months or a year.
Oncologist doesn't want to risk a relapse and taking conservative approach.
Will update in detail later.


Yea! Yea! Yea! So excited to hear this. I hope to join you in the future!
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
Nov 2917 CT scans show significant shrinkage in tumours

henry123
Posts: 114
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Thu Jun 07, 2018 5:51 am

Stewsbetty wrote:
henry123 wrote:Hello
Have been declared NED with clear CT and normal CEA Levels of 1.5 .
To continue with Opdivo for now.
May stop after 6 months or a year.
Oncologist doesn't want to risk a relapse and taking conservative approach.
Will update in detail later.


Yea! Yea! Yea! So excited to hear this. I hope to join you in the future!
Beth


Beth,
Best wishes . I certainly hope and pray all of us get well soon.
Please be aware of avoiding surgery of any type ( even a root canal) or rather anything that bothers immune system.
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 , new 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 normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear .
NED
Vegan yoga juicing apricot

henry123
Posts: 114
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Thu Jun 14, 2018 9:59 am

Any update on approval for immunotherapy drugs for msi-high CRC in Canada ?
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 , new 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 normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear .
NED
Vegan yoga juicing apricot

Stewsbetty
Posts: 118
Joined: Thu Jul 14, 2016 7:08 am

Re: Keytruda? What else is new?

Postby Stewsbetty » Thu Jun 14, 2018 10:36 am

henry123 wrote:Any update on approval for immunotherapy drugs for msi-high CRC in Canada ?

Haven’t heard anything yet. I think we are often a year or two after the US. Guess it has been a year now for Keytruda.
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 2917 CT scans show significant shrinkage in tumours

henry123
Posts: 114
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Thu Jun 14, 2018 11:58 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.



Veckon, Big Rob , what's going on? Haven't heard from you guys in a while
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 , new 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 normal
1/18 3.6
2/18 2.3
4/18 2.0
opdivo continue
Aspirin start
6/18 1.5 CT clear .
NED
Vegan yoga juicing apricot


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