Keytruda question

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michellecairn
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Location: Kenosha, Wisconsin

Keytruda question

Postby michellecairn » Thu Mar 03, 2016 3:57 pm

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.
Age: 39(38 at dx), married, mom of 2
Stage IV
DX: 10-7-15 colon cancer (signet ring cell)
CEA: 10-4-15: 9.5, 2-8-16: 42.5, 3-7-16: 22.6, 5-26-16: 18.8, 7-27-16: 14.3, 10-20-16: 21.1
abnormal MSH6 and BARD1
KRAS: wild type
MSI High
Lynch positive
11-16-15: 1 round Folfirinox/5FU, 5 rounds folfox/5FU , 4 with Avastin
2-8-16: Chemo not working
3-7-16: back to folfox/Avastin/5FU
3-24-16: Keytruda
2-23-17: FAILED Keytruda
3-2-17: Erbitux
3-30-17: Erbitux + Irinotecan
5-25-17: FAILED Erbitux + Irinotecan

jortego128
Posts: 288
Joined: Sat Aug 15, 2015 7:47 am

Re: Keytruda question

Postby jortego128 » Thu Mar 03, 2016 8:36 pm

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
DM 57 yrs old dx 6/8/15 T:4a N:1b M:1
KRAS G12D and TP53 C242fs mutations
Poorly Differentiated, Prominent Signet Ring Component(~50%)
Microsatellite Stable, 3 of (13)lymph nodes positive
15 Liver mets, largest 3.2 cm
Prim. Resection, Right Hemicolectomy 6/21/15
Start Chemo 7/20/15
2 rounds FOLFOX, 1 round FOLFOX +Avastin
CT 8/28/15, met growth, largest 4.5cm
4 rounds FOLFOX+Avastin
CT 11/06/15 mets stable, lungs clear
Begin FOLFIRI+Avastin 11/17/15, Stop chemo 1/26/16
Entered Paradise 3/11/2016

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tchan8888
Posts: 208
Joined: Mon Mar 25, 2013 8:41 pm
Location: San Francisco Bay Area

Re: Keytruda question

Postby tchan8888 » Fri Mar 04, 2016 4:06 am

I am on this trial. Every 3 weeks. 200 mg.

Blessings,

Tom
Tom, 49 now
12/12 Right Hemicolectomy 2X (29 days in hospital)
12/12 Stage IV: multiple distant LN; no organs
20X: FOLFIRI (stopped working)
8X: 5FU
8X: FOLFOX and Avastin
2016: Clinical trial pembrozilumab MSI high

michellecairn
Posts: 80
Joined: Wed Dec 23, 2015 7:09 pm
Facebook Username: Michelle Pulera
Location: Kenosha, Wisconsin

Re: Keytruda question

Postby michellecairn » Fri Mar 04, 2016 11:43 am

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.
Age: 39(38 at dx), married, mom of 2
Stage IV
DX: 10-7-15 colon cancer (signet ring cell)
CEA: 10-4-15: 9.5, 2-8-16: 42.5, 3-7-16: 22.6, 5-26-16: 18.8, 7-27-16: 14.3, 10-20-16: 21.1
abnormal MSH6 and BARD1
KRAS: wild type
MSI High
Lynch positive
11-16-15: 1 round Folfirinox/5FU, 5 rounds folfox/5FU , 4 with Avastin
2-8-16: Chemo not working
3-7-16: back to folfox/Avastin/5FU
3-24-16: Keytruda
2-23-17: FAILED Keytruda
3-2-17: Erbitux
3-30-17: Erbitux + Irinotecan
5-25-17: FAILED Erbitux + Irinotecan

michellecairn
Posts: 80
Joined: Wed Dec 23, 2015 7:09 pm
Facebook Username: Michelle Pulera
Location: Kenosha, Wisconsin

Re: Keytruda question

Postby michellecairn » Fri Mar 04, 2016 11:48 am

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.
Age: 39(38 at dx), married, mom of 2
Stage IV
DX: 10-7-15 colon cancer (signet ring cell)
CEA: 10-4-15: 9.5, 2-8-16: 42.5, 3-7-16: 22.6, 5-26-16: 18.8, 7-27-16: 14.3, 10-20-16: 21.1
abnormal MSH6 and BARD1
KRAS: wild type
MSI High
Lynch positive
11-16-15: 1 round Folfirinox/5FU, 5 rounds folfox/5FU , 4 with Avastin
2-8-16: Chemo not working
3-7-16: back to folfox/Avastin/5FU
3-24-16: Keytruda
2-23-17: FAILED Keytruda
3-2-17: Erbitux
3-30-17: Erbitux + Irinotecan
5-25-17: FAILED Erbitux + Irinotecan

Wonderfullymade
Posts: 140
Joined: Tue Jan 12, 2016 4:33 pm

Re: Keytruda question

Postby Wonderfullymade » Fri Mar 04, 2016 1:03 pm

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!
DX 3/2015 53
Stage IVa CC w/liver met
BRAF/KRAS wild type MSI-High (MLH1, PMS2) not Lynch
Folfox 3 cycles
5/2015 ER for subtotal colectomomy due to perforated colon, ovary removed
Folfuri/Pantiumumab 5 cycles
8/2015 liver resection, gallbladder removed and new LN
10/2015 CT scan new nodes
10/2015 Pembro started CEA 2.2
5/2017 stable lung things, coltis, lymph nodes stable cea 1/2017 1.1
9/2017 NED CEA 1.1 ( stopped Pembro)
2/2019 ER for DVT/ PE
2/2019 clean CT (NED) CEA 1.1

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tchan8888
Posts: 208
Joined: Mon Mar 25, 2013 8:41 pm
Location: San Francisco Bay Area

Re: Keytruda question

Postby tchan8888 » Sat Mar 05, 2016 6:12 am

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
Tom, 49 now
12/12 Right Hemicolectomy 2X (29 days in hospital)
12/12 Stage IV: multiple distant LN; no organs
20X: FOLFIRI (stopped working)
8X: 5FU
8X: FOLFOX and Avastin
2016: Clinical trial pembrozilumab MSI high

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Bev G
Posts: 5856
Joined: Thu Jan 07, 2010 11:19 pm
Facebook Username: Bev Golde
Location: Quechee, VT

Re: Keytruda question

Postby Bev G » Sat Mar 05, 2016 6:31 am

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!!
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

michellecairn
Posts: 80
Joined: Wed Dec 23, 2015 7:09 pm
Facebook Username: Michelle Pulera
Location: Kenosha, Wisconsin

Re: Keytruda question

Postby michellecairn » Sat Mar 05, 2016 12:28 pm

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.
Age: 39(38 at dx), married, mom of 2
Stage IV
DX: 10-7-15 colon cancer (signet ring cell)
CEA: 10-4-15: 9.5, 2-8-16: 42.5, 3-7-16: 22.6, 5-26-16: 18.8, 7-27-16: 14.3, 10-20-16: 21.1
abnormal MSH6 and BARD1
KRAS: wild type
MSI High
Lynch positive
11-16-15: 1 round Folfirinox/5FU, 5 rounds folfox/5FU , 4 with Avastin
2-8-16: Chemo not working
3-7-16: back to folfox/Avastin/5FU
3-24-16: Keytruda
2-23-17: FAILED Keytruda
3-2-17: Erbitux
3-30-17: Erbitux + Irinotecan
5-25-17: FAILED Erbitux + Irinotecan

michellecairn
Posts: 80
Joined: Wed Dec 23, 2015 7:09 pm
Facebook Username: Michelle Pulera
Location: Kenosha, Wisconsin

Re: Keytruda question

Postby michellecairn » Sat Mar 05, 2016 12:31 pm

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!
Age: 39(38 at dx), married, mom of 2
Stage IV
DX: 10-7-15 colon cancer (signet ring cell)
CEA: 10-4-15: 9.5, 2-8-16: 42.5, 3-7-16: 22.6, 5-26-16: 18.8, 7-27-16: 14.3, 10-20-16: 21.1
abnormal MSH6 and BARD1
KRAS: wild type
MSI High
Lynch positive
11-16-15: 1 round Folfirinox/5FU, 5 rounds folfox/5FU , 4 with Avastin
2-8-16: Chemo not working
3-7-16: back to folfox/Avastin/5FU
3-24-16: Keytruda
2-23-17: FAILED Keytruda
3-2-17: Erbitux
3-30-17: Erbitux + Irinotecan
5-25-17: FAILED Erbitux + Irinotecan

CM35
Posts: 265
Joined: Tue Dec 03, 2013 1:16 pm

Re: Keytruda question

Postby CM35 » Sat Mar 05, 2016 5:21 pm

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!
stg IV 4/2013 @34 - liver, ovary/peritoneum
Lots of chemo, surgery and good luck - still doing well 03/2016...

michellecairn
Posts: 80
Joined: Wed Dec 23, 2015 7:09 pm
Facebook Username: Michelle Pulera
Location: Kenosha, Wisconsin

Re: Keytruda question

Postby michellecairn » Sat Mar 05, 2016 5:52 pm

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.
Age: 39(38 at dx), married, mom of 2
Stage IV
DX: 10-7-15 colon cancer (signet ring cell)
CEA: 10-4-15: 9.5, 2-8-16: 42.5, 3-7-16: 22.6, 5-26-16: 18.8, 7-27-16: 14.3, 10-20-16: 21.1
abnormal MSH6 and BARD1
KRAS: wild type
MSI High
Lynch positive
11-16-15: 1 round Folfirinox/5FU, 5 rounds folfox/5FU , 4 with Avastin
2-8-16: Chemo not working
3-7-16: back to folfox/Avastin/5FU
3-24-16: Keytruda
2-23-17: FAILED Keytruda
3-2-17: Erbitux
3-30-17: Erbitux + Irinotecan
5-25-17: FAILED Erbitux + Irinotecan

lpas
Posts: 1010
Joined: Wed Nov 19, 2014 11:11 pm

Re: Keytruda question

Postby lpas » Sat Mar 05, 2016 7:05 pm

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!
11/14 Dx sigmoid CC @ 45yo
12/14 Colectomy + hysterectomy
Stage IIIB, T3N1bM0, 2/20 nodes, MSS, G2, KRAS(A146T), TP53, SMAD4, ERBB2, CEA 1.0
2/15-7/15 XELOX & celecoxib
2/19 clean scope
11/19 clean CT
Ongoing cimetidine & other targeted supplements
Mom to a 6 & 8yo

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gracelinedesign
Posts: 123
Joined: Thu Jan 17, 2013 8:50 pm
Location: York, PA

Re: Keytruda question

Postby gracelinedesign » Tue Mar 08, 2016 8:57 am

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.
Stage IIa rectal carcinoma 05/22/12
5 weeks 5FU/Radiation
Resection / temp ileostomy 10/16/12 - zero LN
5 out of 8 5FU, 1 round of oxaliplatin
Ileostomy reversal 3/21/2013
11/15/13 lungs mets - 10 nodes - Stage IV
2 years of FOLFOX and FOLFIRI
3/2016 - Keytruda

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chrissyrice
Posts: 1171
Joined: Thu Sep 23, 2010 8:44 am
Location: Atlanta, Georgia

Re: Keytruda question

Postby chrissyrice » Tue Mar 08, 2016 10:15 am

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
DX 10-31-09 Surgery 12-1-09 Sigmoid Colon
Stage IIIb T3,N2,MX; Chemo Feb 2010-Aug 2010; 4 rounds Folfox; 8 rounds 5FU +LV
12/2010 PET/CT Scan, Cancer Free
7/2012 CT Scan NED 2 years
10/2013 NED 3 years
8/2014 NED 4 years
Recurrence 6/2015: iliac lymph node(s)
8/2015 Surgery: 3 cm tumor removed+iliac artery graft
3/2016 CT Scan Stable
6/2016 Stable
9/2016 Stable
12/2016 Stable
3/2017 Stable
Recurrence 6/2017
12/2017 Surgery removed all cancer w/ clean margins
07-27-2018 Cancer-free for 7 months


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