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Keytruda question

Posted: Thu Mar 03, 2016 3:57 pm
by michellecairn
If anyone on here is currently taking keytruda, what is your dose, and how often do you get it?

I was to travel to Ohio yesterday to start the clinical trial process to get keytruda. My oncologist had been trying to get either my insurance company or the drug company to cover the drug for me. As we were walking out the door, I received a call from my oncologist saying the drug company approved it, so I could start on Monday.

I got a call today saying they are only willing to provide 2mg every 3 weeks, and my oncologist is saying that the recommended dose fore lynch patients is 10 mg, but I forgot what she said the frequency was.

Obviously I'm very disappointed because I've been without any treatment now for 6 weeks.

Re: Keytruda question

Posted: Thu Mar 03, 2016 8:36 pm
by jortego128
Looks like the Keynote 164 MSI colorectal cancer study uses 200mg on day of a 21 day cycle for up to 2 years. Maybe youve made a typo, as 2mg or 10mg is nowhere near that. Some studies list mg per KG of body weight, which may be what you are referring.




https://clinicaltrials.gov/ct2/show/NCT02460198

Re: Keytruda question

Posted: Fri Mar 04, 2016 4:06 am
by tchan8888
I am on this trial. Every 3 weeks. 200 mg.

Blessings,

Tom

Re: Keytruda question

Posted: Fri Mar 04, 2016 11:43 am
by michellecairn
jortego128 wrote:Looks like the Keynote 164 MSI colorectal cancer study uses 200mg on day of a 21 day cycle for up to 2 years. Maybe youve made a typo, as 2mg or 10mg is nowhere near that. Some studies list mg per KG of body weight, which may be what you are referring.


You are right it is 2 mg per kg. I looked at the clinical trial that I was trying to get into, and their dosing was 10 mg per kg every 2 weeks.

Thank you very much for the information.

Re: Keytruda question

Posted: Fri Mar 04, 2016 11:48 am
by michellecairn
tchan8888 wrote:I am on this trial. Every 3 weeks. 200 mg.

Blessings,

Tom


Tom,

What kind of side effects are you experiencing if any? I'm hoping I can convince my oncologist to try the 2 mg per kg dose. Otherwise she will be putting me back on folfox which didn't do anything to the tumors - it just made me have less pain. I'm told this is basically my only option.

Re: Keytruda question

Posted: Fri Mar 04, 2016 1:03 pm
by Wonderfullymade
200mg every 21 days When I started they were going by body weight but changed it to 200mg across the board after I had it for a couple of times. I haven't had any side effects and have been enjoying quite a bit of energy to boot! I also have been working out at least 1 hour 5 days a week so I think that helps also!
Good luck to you!

Re: Keytruda question

Posted: Sat Mar 05, 2016 6:12 am
by tchan8888
Michelle,

Less side effects than FOLFOX and FOLFIRI. Fatigue on infusion day and feel better by Day 2. Infusion is short and no bottle, which makes a big psychological difference for me. Some constipation. Very manageable for me, but I also handled the chemo pretty well until neuropathy set in.

Blessings,

Tom

Re: Keytruda question

Posted: Sat Mar 05, 2016 6:31 am
by Bev G
Hi Michelle, Isn't tthe drug company sponsoring the clinical trial supposed to pay for the drug? I apologize if I didn't understand your post.


Warm best wishes for the new drug for you!!

Re: Keytruda question

Posted: Sat Mar 05, 2016 12:28 pm
by michellecairn
Bev G wrote:Hi Michelle, Isn't tthe drug company sponsoring the clinical trial supposed to pay for the drug? I apologize if I didn't understand your post.


Warm best wishes for the new drug for you!!


When I was told that the folfox didn't work, my onc basically referred me to mayo as she had no idea what to do next. Instead of mayo I saw 2 different drs at 2 different NCI centers and they both said that the keytruda should help me. There was a keytruda clinical trial open in ohio which is about 7 hours away from me.

I let my onc know I was going to attempt to get in the trial, and one of the Dr's I saw at the NCI center called and spoke with my onc and let her know what she thought.

The dr from the 2nd NCI told us to have my onc see if she could get the insurance company or the drug company to give me the drug so I don't have to travel that far for treatment.

I was approved by the drug company - they'll give me keytruda for 1 year, but the 2mg per kg dose. My oncologist feels I need the 10mg per kg dose since I'm lynch positive. I spoke to ohio and one of the NCI drs who say the 2mg per kg should be fine. So monday morning I need to have a discussion with my onc, because the plan right now is to go back on folfox to manage my symptoms.

Re: Keytruda question

Posted: Sat Mar 05, 2016 12:31 pm
by michellecairn
tchan8888 wrote:Michelle,

Less side effects than FOLFOX and FOLFIRI. Fatigue on infusion day and feel better by Day 2. Infusion is short and no bottle, which makes a big psychological difference for me. Some constipation. Very manageable for me, but I also handled the chemo pretty well until neuropathy set in.

Blessings,

Tom


Thanks for letting me know. I didn't really have any horrible side effects from the folfox. I haven't had folfiri because the irinotecan made my tounge swell up.

Best wishes!

Re: Keytruda question

Posted: Sat Mar 05, 2016 5:21 pm
by CM35
I was on keytruda back in September. If it were me, I would take the dose being provided by the manufacturer. In the meantime, could your onc continue working with your insurance to try getting it approved for off-label use? Then perhaps dosing would be more under the prescription of your doctor. My onc was able to get this approved for me off-label. I received the 200 mg flat dosing. I was only on this drug a short time, and to me there was no comparison to chemo. They could have been infusing me with saline for all I could tell.

Best wishes, whatever your decision!

Re: Keytruda question

Posted: Sat Mar 05, 2016 5:52 pm
by michellecairn
CM35 wrote:I was on keytruda back in September. If it were me, I would take the dose being provided by the manufacturer. In the meantime, could your onc continue working with your insurance to try getting it approved for off-label use? Then perhaps dosing would be more under the prescription of your doctor. My onc was able to get this approved for me off-label. I received the 200 mg flat dosing. I was only on this drug a short time, and to me there was no comparison to chemo. They could have been infusing me with saline for all I could tell.

Best wishes, whatever your decision!


Thanks for your input CM35.

I have thickening of the colon wall, and mets to the peritoneum. My peritoneum lining increased from 4mm to 7mm in the 3 months I was on folfox. The drs I've seen say no surgery that it's not worth it. Apparently my tumors are a good match for the keytruda so I'm thinking this is my last hope.

My abdomen is growing and is currently at 47 inches. I wasn't flat before the cancer, but I look 9 months pregnant and I'm very uncomfortable sitting, laying, walking, etc. It's pushing up on my lungs so it's hard to breathe at times.

I hope my dr will agree to give me the keytruda because I don't want to waste anymore time on chemo that doesn't work.

Re: Keytruda question

Posted: Sat Mar 05, 2016 7:05 pm
by lpas
Just my opinion of course, but If your onc won't at least try you on Keytruda I think you need to find a new onc. At this point, I really wouldn't waste time messing around with more FOLFOX.

Best of luck to you!

Re: Keytruda question

Posted: Tue Mar 08, 2016 8:57 am
by gracelinedesign
I take 100mg every three weeks. I'm NOT lynch positive and 'experimenting' basically. Not sure exactly why I'm at 100mg instead of 200mg. This is what the drug company is providing to me for free. I am not on a clinical trial.

Re: Keytruda question

Posted: Tue Mar 08, 2016 10:15 am
by chrissyrice
Any updates on the your treatment dosage?

So hope you get the correct amount for free close to home or at least management coordinated with trial center.

Chrissy