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What to do after immunotherapy works

Posted: Tue Jan 15, 2019 6:57 am
by plastikos
Hi. I decided to start a new thread since I needed some opinions and there doesn’t seem to be a specific thread for this topic. I am sure some others here may need or will be needing opinion on this as well.

Brief backgrounder: I am about to hit my 2 year mark on Keytruda monotherapy and have been NED for maybe a little more than a year (see sig below). Most experts recommend completing the 2 years of treatment if patients are responding, paralleling what was done in the clinical trials. But beyond that there isn’t much data on how to proceed with treatment. Some of the options I have heard are:

1) Stop treatments completely at 2 years and just monitor.
2) Continue dosing at the same dosage (200mg flat dose every 3 weeks)
3) Decreasing the dose to half (100mg) but still give it every 3 weeks.
4) Increase intervals in between doses by a week at a time until 6 weeks then maintain.
5) Stop treatments cold turkey then give a full dose every 3 months (the supposed length of Keytruda’s duration of action?).

For everyone here currently in the same boat or about to get there what are you and/or your oncs planning to do? I don’t mean to be insensitive to those who aren’t in the same situation. I am aware that it is a “good” problem to have. But for people like me for whom cost is a major issue it is something that has to be dealt with. Hoping people will chime in. Again hoping and praying for the best for all of us here still fighting.

Re: What to do after immunotherapy works

Posted: Thu Jan 17, 2019 12:37 pm
by CRguy
bumping up here for you

Sorry I have no experience or answers BUTT this is a great topic to gather some more info moving forward

Cheers and Best wishes
CRguy

Re: What to do after immunotherapy works

Posted: Thu Jan 17, 2019 2:17 pm
by Jack&KatiesMommy
Since the use of immunotherapy (in any significant way) has only been ongoing for a few years....and since it has been used since @2011 in melanoma, lymphoma, lung cancer.....you may get more valid information from people with those cancers since many of them (unlike colon cancer patients) may have started their treatment 5-7 years ago.

Just a thought
Cynthia

Re: What to do after immunotherapy works

Posted: Fri Jan 18, 2019 3:02 pm
by rp1954
Maybe you can get some data from other cancers' patients like J&KMom said.

Totally outside of the Keytruda, we've had the longer interval vs reduced dose experiments go either way with different items. The main thing has been to have a better than standard monitoring program, with a recovery plan for any change of regimin. We used more blood panels and markers at a higher frequency and took care to monitor and reduce liver and inflammation effects. The benefit was faster corrective responses with less rise or loss of control, and less patient anxiety/panic (more confidence even in the face of rises, typically due to treatment reductions or marker changes).

In your shoes, I might be looking for literature and data about which of any nutrient(s) might interact like a switch with Keytruda and then going to a long term plan in the other immune related directions. My experience in 5FU chemo has been oncology overclaimed negative interactions in lieu of data. However some literature is that specific switch behavior will occur with 1-2 nutrients for a given biological.

As important as 5FU is for immunochemo, at some point the off label and immune stuff had more than 50% of the activity measured and that changes were associated with predicted shrinkage or marker decline events.

Re: What to do after immunotherapy works

Posted: Fri Jan 18, 2019 8:07 pm
by Wonderfullymade
Hi Plastikos,
I had my last treatment August 2017 and have had no treatment since. I have been getting scans/ bloodwork every 3 months. So far still NED. Next scan is in March.
I have read mixed treatment options so it seems to be no agreement between Dr.I agree with researching what lung cancer results are as they have been on the drug longer.
Please keep us up to date!
Wonderfullymade

Re: What to do after immunotherapy works

Posted: Sun Jan 20, 2019 10:52 pm
by henry123
Hello
My story is similar to Plastikos except that I am on Nivolumab and not Keytruda.
I am approaching 2 year mark and have been NED for almost a year.
In my case , intervals between infusions has been increased to 6 weeks from original 2 weeks.
But what is to be done after 2 years is still up in the air.
Besides the cost there is also the issue of toxicity and potential side effects.

Re: What to do after immunotherapy works

Posted: Sun Jan 20, 2019 10:52 pm
by henry123
Where has 2 years figure come from?

Re: What to do after immunotherapy works

Posted: Mon Jan 21, 2019 3:13 am
by stu
In the UK they have a funding agreement with the pharmaceutical company to receive the drug at a reduced cost for two years . After that it goes back into the normal pricing range . However I was reading at the weekend four other drug companies have already hit the market with four new Immuotherapy drugs for lung cancer so hopefully the pricing will level out .
That’s certainly why they have ring fenced the two year mark over here . Not a clinical reason . The lung cancer patients are currently navigating these waters as they have just come to the end of the two years here . I have been following their journey and feel their anxiety.
Stu

Re: What to do after immunotherapy works

Posted: Wed Jan 23, 2019 5:03 pm
by juliej
rp1954 wrote:
In your shoes, I might be looking for literature and data about which of any nutrient(s) might interact like a switch with Keytruda and then going to a long term plan in the other immune related directions. My experience in 5FU chemo has been oncology overclaimed negative interactions in lieu of data. However some literature is that specific switch behavior will occur with 1-2 nutrients for a given biological.

Agree with this. Research any relationship between Keytruda and nutrients. LEF might be able to point you in a good direction. Or a willing researcher at NHI. Additional clinical and preclinical research in this field is urgently needed.

Re: What to do after immunotherapy works

Posted: Fri Jan 25, 2019 8:59 am
by Stewsbetty
I just went in for a consult with an oncologist for this very reason.

My brief. I have been on Keytruda since September of 2017. Dramatic response for 9 months. I have now leveled off to stable with one node measuring at 1.8 cm. I am receiving the drug free through Merck’s compassionate care program. They have set my limit to 35 treatments. I am at 24.

I went in to ask about PEt scanning and potentially stopping treatment now. My thinking is perhaps the enlarged node is necrotic. And maybe I should save some of the “freebies” in case of growth later on.

The oncologist’s opinion is that I should stay the course for the 2 years. She said a PET might not show activity but that it could still be cancerous, just not detectable. I was disappointed but willing to go with what she says. I guess I will just find out if anything is happening later than sooner.

Re: What to do after immunotherapy works

Posted: Sat Jan 26, 2019 11:46 pm
by henry123
https://clinicaltrials.gov/ct2/show/NCT03631641

A clinical trial for maintenance/prevention dose of Nivolumab for Lynch Syndrome patients.
They are giving it for 2 years every 3 months.

Re: What to do after immunotherapy works

Posted: Sun Jan 27, 2019 11:17 am
by plastikos
henry123 wrote:https://clinicaltrials.gov/ct2/show/NCT03631641

A clinical trial for maintenance/prevention dose of Nivolumab for Lynch Syndrome patients.
They are giving it for 2 years every 3 months.

This is interesting. Thanks. Does anyone know the science behind the 3 month interval dosing?