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Re: Keytruda? What else is new?

Posted: Sun Apr 15, 2018 12:12 pm
by henry123
Hello
Just wanted to update that my latest cea number is 2.0 .
It's within normal range.
Continuing with Nivolumab, aspirin etc.

Re: Keytruda? What else is new?

Posted: Sat Jun 02, 2018 12:47 pm
by Heather
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.

Re: Keytruda? What else is new?

Posted: Wed Jun 06, 2018 7:13 am
by henry123
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.

Re: Keytruda? What else is new?

Posted: Wed Jun 06, 2018 10:02 am
by LPL
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

Re: Keytruda? What else is new?

Posted: Wed Jun 06, 2018 10:08 am
by plastikos
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.

Re: Keytruda? What else is new?

Posted: Wed Jun 06, 2018 4:46 pm
by henry123
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.

Re: Keytruda? What else is new?

Posted: Thu Jun 07, 2018 4:00 am
by Stewsbetty
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.

Re: Keytruda? What else is new?

Posted: Thu Jun 07, 2018 4:02 am
by Stewsbetty
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

Re: Keytruda? What else is new?

Posted: Thu Jun 07, 2018 5:51 am
by henry123
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.

Re: Keytruda? What else is new?

Posted: Thu Jun 14, 2018 9:59 am
by henry123
Any update on approval for immunotherapy drugs for msi-high CRC in Canada ?

Re: Keytruda? What else is new?

Posted: Thu Jun 14, 2018 10:36 am
by Stewsbetty
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.

Re: Keytruda? What else is new?

Posted: Thu Jun 14, 2018 11:58 am
by henry123
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

Re: Keytruda? What else is new?

Posted: Wed Jul 04, 2018 4:13 pm
by veckon
henry123 wrote:
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


Still alive and fighting. Continuing pembrolizumab and have not had a recurrence of colitis since resuming treatment. My treatment related fatigue has improved moderately in the last few cycles, but insomnia and stress have conspired to still deprive me of sleep. Overall on a positive trajectory.