The Colon Club

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.

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

https://m.timesofindia.com/city/mumbai/ ... 062315.cms

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.

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

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!

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.

No treatments since sept scan. I scan again in june.
Feeling great! I am preparing for a 10+ mile hike today, 13+ next weekend!