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Re: Keytruda? What else is new?

Posted: Fri Dec 08, 2017 8:23 am
by henry123
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.

Re: Keytruda? What else is new?

Posted: Fri Dec 08, 2017 10:06 am
by rp1954
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.

Re: Keytruda? What else is new?

Posted: Fri Dec 08, 2017 1:34 pm
by Steph20021
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 .

Re: Keytruda? What else is new?

Posted: Sat Dec 09, 2017 6:54 am
by henry123
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.

Re: Keytruda? What else is new?

Posted: Sun Dec 10, 2017 6:58 am
by Stewsbetty
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.

Re: Keytruda? What else is new?

Posted: Sun Dec 10, 2017 1:05 pm
by CRguy
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

Re: Keytruda? What else is new?

Posted: Wed Jan 03, 2018 11:05 am
by henry123
Hello friends,
Just got my CEA numbers in .
They are down to 3.6 .
Oncologist is satisfied with the progress.

Re: Keytruda? What else is new?

Posted: Wed Jan 03, 2018 11:20 am
by NHMike
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.

Re: Keytruda? What else is new?

Posted: Wed Jan 03, 2018 11:42 am
by susie0915
Great news!

Re: Keytruda? What else is new?

Posted: Wed Jan 03, 2018 4:44 pm
by henry123
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 .

Re: Keytruda? What else is new?

Posted: Fri Feb 02, 2018 6:59 am
by henry123
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

Re: Keytruda? What else is new?

Posted: Sat Feb 03, 2018 12:27 am
by henry123
Another article on duration of immunotherapy after good response


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

Re: Keytruda? What else is new?

Posted: Tue Feb 06, 2018 9:13 am
by plastikos
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.

Re: Keytruda? What else is new?

Posted: Wed Feb 07, 2018 5:44 am
by henry123
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.

Re: Keytruda? What else is new?

Posted: Wed Feb 07, 2018 8:12 am
by plastikos
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.