Update tchan8888: Pembrozilumab Clinical Trial

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

Update tchan8888: Pembrozilumab Clinical Trial

Postby tchan8888 » Thu Feb 11, 2016 4:08 am

Hello Everyone,

Just wanted to give a brief update. Had my first scan after 3 treatments. The lymph node tumors were very responsive. Was advised that many people do not see an immediate response to this immunotherapy regimen. Noticeable shrinkage in swelling of lymph nodes in my neck.

As for side effects, lots of fatigue, rash, bone and muscle soreness and constipation. This has been challenging, but still not as bad as FOLFIRI and FOLFOX. Treatment day is a lot shorter.

Am optimistic about gaining more time. Let me know if you have any questions and will try my best to answer. Know that getting into trial is a challenge and was very fortunate to get 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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DK37
Posts: 510
Joined: Tue Sep 17, 2013 8:31 am
Location: San Diego

Re: Update tchan8888: Pembrozilumab Clinical Trial

Postby DK37 » Thu Feb 11, 2016 10:35 am

Great news on the efficacy Tom!!
I assume you are MSI-high?
If so, could you please add to your signature line?
Thanks & congrats again on the response to Pembro!

-DK
6/4/2012 Dx Stage 3C CRC @ 40 yo. MSS, KRAS-WT, BRAF-WT, p53-mut
7/12 FOLFOX/FOLFIRI
2/13 NED!
8/13 Enlarged lymphs - Stable
10/14 Stage IV. Lung & Lymph mets. 5-FU+bev
3/15 Cetuximab
11/15 FOLFIRI + bev
11/16 Signs of FOLFIRI resistance (Lymph mets)
1/17 Palliative radiation for resistant mets
2/17 FOLFIRI + bev + Maraviroc (off-label)
3/17 FOLFIRI + Erbitux + Maraviroc (off-label)
MSS-CRC Clinical Trial Finder: http://trialfinder.fightcrc.org/
2016 Colondar 2.0 Model
DK37 Science Posts List

bitchslapped
Posts: 1531
Joined: Tue Sep 09, 2014 3:23 pm
Location: PNW/USA

Re: Update tchan8888: Pembrozilumab Clinical Trial

Postby bitchslapped » Thu Feb 11, 2016 3:12 pm

That is very encouraging news to hear & thank you for updating! I hope you will continue to update here in this thread, share your experience as participants in clinical trials are also helping educate others & info re: results is sparse.
Did you find the paperwork & testing process the most challenging to qualify or strict criteria to meet, limited openings? I'll make a guess: "all of the above."

Best Wishes
BS
DSS,35YO,unresect mCRC DX 7/'14,lvr,LN,peri,rib
FOLFOX+Avstn 4 Rnds d/c 10/'14
Stent 9/'14
FOLFIRI+Avstn 10/'14
Gone From My Sight 2/20/15
Me:garden variety polyps + precancerous polyp, diverticulitis
Carergver x2 DH,DM dbl occupancy,'03-'10
DH dx 47YO mCRC,'04-'07 fried x HAI
DM dx CC 85YO,CC,CHF,stroke,dementia,aphasia

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CRguy
Posts: 10234
Joined: Sun Feb 10, 2008 6:00 pm

Re: Update tchan8888: Pembrozilumab Clinical Trial

Postby CRguy » Thu Feb 11, 2016 3:46 pm

Glad you got in ... AND that is working for you !

Best wishes for continued success.
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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

Re: Update tchan8888: Pembrozilumab Clinical Trial

Postby Wonderfullymade » Fri Feb 12, 2016 9:35 am

Happy to hear you are responding well! Sorry to hear you are having nasty side effects still. Do you know if others in the trail are feeling the same way?
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

stu
Posts: 1383
Joined: Sat Aug 17, 2013 5:46 pm

Re: Update tchan8888: Pembrozilumab Clinical Trial

Postby stu » Fri Feb 12, 2016 12:44 pm

Hi,
Words are not adequate enough to say just how pleased I am for you. Sorry about the side effects. Thinking of you,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: Update tchan8888: Pembrozilumab Clinical Trial

Postby NateA » Fri Feb 12, 2016 3:13 pm

Could you lino the trial or hook us up with the NCT#? Love that your getting response!!
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

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

Re: Update tchan8888: Pembrozilumab Clinical Trial

Postby lpas » Fri Feb 12, 2016 3:38 pm

Really awesome news, Tom. So glad!!
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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O Stoma Mia
Posts: 1602
Joined: Sat Jun 22, 2013 6:29 am

Pembrozilumab (Keytruda) Clinical Trial

Postby O Stoma Mia » Sat Feb 13, 2016 10:07 am

tchan8888 wrote:Hello Everyone,

Just wanted to give a brief update. Had my first scan after 3 treatments. The lymph node tumors were very responsive. Was advised that many people do not see an immediate response to this immunotherapy regimen. Noticeable shrinkage in swelling of lymph nodes in my neck.

As for side effects, lots of fatigue, rash, bone and muscle soreness and constipation. This has been challenging, but still not as bad as FOLFIRI and FOLFOX. Treatment day is a lot shorter.

Am optimistic about gaining more time. Let me know if you have any questions and will try my best to answer. Know that getting into trial is a challenge and was very fortunate to get in.

Blessings,

Tom

Very good news to hear! Thanks for coming back to update us on the status, and thanks for volunteering to answer any questions -- and Happy Chinese New Year, with best wishes for good health and happiness in the years ahead!

Pembrozilumab (Keytruda) is already approved for two indications -- Advanced Melanoma and Non-Small-Cell Lung Cancer. So, one advantage of this is that the safety profile for use of this compound in humans is already well known, and the drug is already in stock in most hospital pharmacies. But they don't yet know for sure whether it is significantly better than other regimens in the case of colon cancer, and that is the reason for the need for the current clinical trials.

It is an expensive drug:
"Keytruda will be an expensive treatment option ... Merck has disclosed that its new PD-1 inhibitor will cost payers $12,500 per month or about $150,000 per year.... . Keytruda now looks set to become a blockbuster drug for Merck and a leading drug within the PD-1 inhibitor class..."

If an oncologist wants to prescribe it off-label for colon cancer, then I suppose he could -- provided the patient wants to pay or the patient's insurance is willing to cover the cost. But it's not quite clear whether insurance would cover the cost before the compound is formally approved for use in colon cancer.

The information for this particular trial is here: Pembrolizumab (Keytruda) Clinical Trial - NCT02460198
Last edited by O Stoma Mia on Thu Jun 01, 2017 10:43 am, edited 2 times in total.

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

Re: Update tchan8888: Pembrozilumab Clinical Trial

Postby Wonderfullymade » Sun Feb 14, 2016 11:50 pm

It is an expensive drug:
"Keytruda will be an expensive treatment option ... Merck has disclosed that its new PD-1 inhibitor will cost payers $12,500 per month or about $150,000 per year.... . Keytruda now looks set to become a blockbuster drug for Merck and a leading drug within the PD-1 inhibitor class..."

If an oncologist wants to prescribe it off-label for colon cancer, then I suppose he could -- provided the patient wants to pay or the patient's insurance is willing to cover the cost. But it's not quite clear whether insurance would cover the cost before the compound is formally approved for use in colon cancer.

The information for this particular trial is here: Pembrolizumab (Keytruda) Clinical Trial - NCT02460198[/quote]




My insurance is covering it for 1 year (hallelujah) I think my Onc said he sent in a 30 page report of a small trial that had been done and told them it was a matter of life and death for me :( There also was not a trial that was close or open at the time and he didnt feel waiting would be good since I couldn't even get a month past surgery before I was having new lymph nodes showing up on the scan.

Yeek! Still trying to learn how to quote :oops:
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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Shân
Posts: 14
Joined: Wed Sep 30, 2015 6:50 pm
Location: Old Greenwich CT

Re: Update tchan8888: Pembrozilumab Clinical Trial

Postby Shân » Mon Feb 15, 2016 7:55 am

I am so delighted for you, very exiting indeed, thanks for posting.
S
Dx 3/14. Stage 111b. Aged 51 Mother of 4
3/14 Sigmoidectomy (6 positve lymph nodes out of 15)
12 rounds of oxaliplaton, 5 F-U and leucovorin
9/14 PEP scan tumor in superaclavicular lymph node
Stage IV
10/14 Radiation,
1/15 PEP activity in the lymph nodes in abdomen.
12 rounds irinotecan and avastin
4/15 NED
9/15 PEP activity in the lymph nodes in sternum
10/15 Radiation SBRT
1/16 PEP activity in another 2 superaclavicular lymph nodes
2/16 irinotecan and avastin
3/16 NED but CEA 6.1

rp1954
Posts: 1536
Joined: Mon Jun 13, 2011 1:13 am

Re: Update tchan8888: Pembrozilumab Clinical Trial

Postby rp1954 » Tue Feb 16, 2016 2:18 pm

Tom, it might be useful to compare before and after MCV values to your previous treatments with Folfiri, Folfox and straight 5FU.
It could make a good discussion here.

The MCV parameter "missle track" has been a pretty good chemo activity indicator for us even for immuno components.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C


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