BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC

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

Re: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC

Postby henry123 » Thu Feb 22, 2018 12:52 pm

sharijohn wrote:Hello! I am interested in a nivolumab trial for my mom. What is your MSI status? Are you non



Hi
I am msi-high as well as Lynch positive.
Best of luck with finding a trial for your mom.
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: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC

Postby henry123 » Sun Feb 25, 2018 11:34 pm

100 doctors set up Immuno-Oncological Society to frame treament norms

https://m.timesofindia.com/city/mumbai/ ... 062315.cms
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: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC

Postby henry123 » Thu Apr 19, 2018 8:01 pm

I seem to have become quite forgetful as compared to earlier especially with regards to names and upcoming appointments.

Could it be related to Nivolumab ? Has anybody else on Opdivo /Keytruda experienced similar memory loss related symptoms.

Occasional muscular pains are still there.
But overall, I am working at maybe 60 to 70% of my normal working.
Thank God for where I am today.
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: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC

Postby Stewsbetty » Fri Apr 20, 2018 4:09 am

henry123 wrote:I seem to have become quite forgetful as compared to earlier especially with regards to names and upcoming appointments.

Could it be related to Nivolumab ? Has anybody else on Opdivo /Keytruda experienced similar memory loss related symptoms.

Occasional muscular pains are still there.
But overall, I am working at maybe 60 to 70% of my normal working.
Thank God for where I am today.


Hi Henry,
I am on Keytruda since September. I too, have a terrible memory now but I hadn’t related it to Keytruda since I underwent chemo as well in the last yet and a half. I don’t notice the memory lapses just with names and dates, it is with words as well. I am often stuttering waiting for the proper word to come to me while talking. This is challenging for me since oral communication has always been easy for me.
And saw your remark earlier in the thread about transitioning from the acceptance of dying to now living life. Working on that one now too. Going from expecting to die within a couple of months to thinking I might be NED soon causes quite the mental gymnastics. Received terminal disability benefits last September and am now thinking of returning to work part time next September! Sure am glad to be where I am at!
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

Wonderfullymade
Posts: 122
Joined: Tue Jan 12, 2016 4:33 pm

Re: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC

Postby Wonderfullymade » Fri Apr 20, 2018 8:36 am

Stewsbetty wrote:
henry123 wrote:I seem to have become quite forgetful as compared to earlier especially with regards to names and upcoming appointments.

Could it be related to Nivolumab ? Has anybody else on Opdivo /Keytruda experienced similar memory loss related symptoms.

Occasional muscular pains are still there.
But overall, I am working at maybe 60 to 70% of my normal working.
Thank God for where I am today.


Hi Henry,
I am on Keytruda since September. I too, have a terrible memory now but I hadn’t related it to Keytruda since I underwent chemo as well in the last yet and a half. I don’t notice the memory lapses just with names and dates, it is with words as well. I am often stuttering waiting for the proper word to come to me while talking. This is challenging for me since oral communication has always been easy for me.
And saw your remark earlier in the thread about transitioning from the acceptance of dying to now living life. Working on that one now too. Going from expecting to die within a couple of months to thinking I might be NED soon causes quite the mental gymnastics. Received terminal disability benefits last September and am now thinking of returning to work part time next September! Sure am glad to be where I am at!
Beth


Ditto, exactly! I could have written this post almost word for word!
Except I have been NED since September! I would update my sig, but lol! I cant figure out/remember how anymore! I gave up been frustrated about it just decided to be extremely happy to be alive! May you also have the same happy results!
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High 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

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

Re: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC

Postby henry123 » Fri Apr 20, 2018 10:49 am

Wonderfullymade wrote:
Stewsbetty wrote:
henry123 wrote:I seem to have become quite forgetful as compared to earlier especially with regards to names and upcoming appointments.

Could it be related to Nivolumab ? Has anybody else on Opdivo /Keytruda experienced similar memory loss related symptoms.

Occasional muscular pains are still there.
But overall, I am working at maybe 60 to 70% of my normal working.
Thank God for where I am today.


Hi Henry,
I am on Keytruda since September. I too, have a terrible memory now but I hadn’t related it to Keytruda since I underwent chemo as well in the last yet and a half. I don’t notice the memory lapses just with names and dates, it is with words as well. I am often stuttering waiting for the proper word to come to me while talking. This is challenging for me since oral communication has always been easy for me.
And saw your remark earlier in the thread about transitioning from the acceptance of dying to now living life. Working on that one now too. Going from expecting to die within a couple of months to thinking I might be NED soon causes quite the mental gymnastics. Received terminal disability benefits last September and am now thinking of returning to work part time next September! Sure am glad to be where I am at!
Beth


Ditto, exactly! I could have written this post almost word for word!
Except I have been NED since September! I would update my sig, but lol! I cant figure out/remember how anymore! I gave up been frustrated about it just decided to be extremely happy to be alive! May you also have the same happy results!


Congratulations!!

So we can safely assume a bad memory is a common side effect of these immunotherapies.

Wonderfullymade, has your oncologist made any changes in your regime after your NED status.
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

Wonderfullymade
Posts: 122
Joined: Tue Jan 12, 2016 4:33 pm

Re: BREAKING: Nivolumab (Opdivo) APPROVED for MSI-High CRC

Postby Wonderfullymade » Sat Apr 21, 2018 6:54 am

No treatments since sept scan. I scan again in june.
Feeling great! I am preparing for a 10+ mile hike today, 13+ next weekend!
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High 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


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