My Immunotherapy Consultation at UCSF

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Shana
Posts: 380
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

My Immunotherapy Consultation at UCSF

Postby Shana » Thu Jun 14, 2018 10:21 pm

Hi All,

I just wanted to share my experience of my first ever Immunotherapy consultation.

I met with Dr. Oh who is part of the UCSF immunotherapy team. He was personable, very informative and took his time explaining what he does and what they’re working on.The doctor said that I was well informed and asked the right questions. He agreed that I should get the maximum benefit from my current chemo before considering a trial. I felt comfortable that we were on the same page. I told him that my CEA had dropped 15 points since my referral to see him.

This is one of the two trials for which I am most likely eligible. https://clinicaltrials.gov/ct2/show/NCT03289962

It's hard to evaluate this one at such an early phase but I like the premise. I don’t think I’m there yet but it was an intriguing option coming from an MSS standpoint. It takes several weeks for Genentech to manufacture the vaccine although he didn’t have an exact time frame. 28 days of no chemo prior to first infusion and a fresh tissue biopsy for the personal vaccine. He said that he would not ask a patient to stop chemo unless he had a confirmed spot open for the trial. Definitely worth exploring depending on outcome of my next scan. I hope to hear more about this trial at the June 30th Immunotherapy summit in San Francisco.

The other trial was less appealing to me. https://clinicaltrials.gov/ct2/show/NCT02628535

The side effects from this trial were pretty daunting.Generally flu like symptoms because of the super charged immune response that this drug triggers. About 1/3 of patients developed severe inflammation of various organs including colitis. It can also cause autoimmune response in thyroid and pituitary... Of those less than half, but still significant in my opinion needed an antidote to shut down the immune response. They also require 6 hr observation period post infusion to monitor for adverse reaction and sometimes an overnight hospital stay just so they can watch you. That just sounded too risky! I am feeling quite well right now and don't want to rock the boat unless I see progression. My biggest concern is with colitis due to having two episodes of it last year and ending up on TPN and then a blockage. I just can’t go through that trauma again. In my mind, I have eliminated the trial at this juncture in time.

I'm looking ahead so I have a Plan B and Plan C too. I feel lucky so far but I know it's just a matter of time unless I can achieve resectable status.

Sending everyone positive thoughts and good wishes on your upcoming treatments and scans. I always love to read the success of those who are NED and stop by to share the hope with us!
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

mhf1986
Posts: 129
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: My Immunotherapy Consultation at UCSF

Postby mhf1986 » Fri Jun 15, 2018 4:42 pm

Hi Shana, thanks for the post. Always good to know what's out there. Have you had FOLFOX yet? DH started with that. Did wonders for about 14 months.

M
Caregiver to DH, dx age 50, mets to liver/lungs/lymphs, MSS, quad wild
10/16: CEA 114, partial blockage, left hemi. w/perm. colostomy
11/16: port in, FOLFOX+Avastin
4/17: CEA 11
6/17: CEA 15, 5FU+A only due to neuropathy
11/17: CEA 38, CAPOX+A
12/17: CEA 29
1/18: CAPOX caused hi bilirubin/bad hfs, back to FOLFOX+A
5/18: growth + ascites; 6.4 bilirubin, change to Vectibex
7/18: 1.4 bilirubin, CT shows shrinkage/no ascites; add irinitecan at 66% dose

User avatar
Shana
Posts: 380
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: My Immunotherapy Consultation at UCSF

Postby Shana » Fri Jun 15, 2018 4:56 pm

mhf1986 wrote:Hi Shana, thanks for the post. Always good to know what's out there. Have you had FOLFOX yet? DH started with that. Did wonders for about 14 months.

M


Hi M,

I started with Folfox but we found out that I am allergic to 5FU. It's the gold standard for most everyone but I tried it twice and ended up hospitalized each time with neutropenia and colitis :( The Irinotecan and Erbitux is working for now but I know it's just a matter of time until it becomes resistant.
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!

mhf1986
Posts: 129
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: My Immunotherapy Consultation at UCSF

Postby mhf1986 » Fri Jun 15, 2018 6:46 pm

S, can you do the OX without the 5FU...just the oxyalplatin? I don't know that 5FU did much for DH but OX was helpful. DH did FOLFOX+Avastin then just 5FU but had to go back to the full FOLFOX after a few months. His blood counts dropped too and he skipped a few rounds along the way.

Fingers crossed that the I and the E continue to work for you.

M
Caregiver to DH, dx age 50, mets to liver/lungs/lymphs, MSS, quad wild
10/16: CEA 114, partial blockage, left hemi. w/perm. colostomy
11/16: port in, FOLFOX+Avastin
4/17: CEA 11
6/17: CEA 15, 5FU+A only due to neuropathy
11/17: CEA 38, CAPOX+A
12/17: CEA 29
1/18: CAPOX caused hi bilirubin/bad hfs, back to FOLFOX+A
5/18: growth + ascites; 6.4 bilirubin, change to Vectibex
7/18: 1.4 bilirubin, CT shows shrinkage/no ascites; add irinitecan at 66% dose

User avatar
Shana
Posts: 380
Joined: Sun Jul 30, 2017 9:45 pm
Location: Sonoma, CA

Re: My Immunotherapy Consultation at UCSF

Postby Shana » Fri Jun 15, 2018 7:10 pm

mhf1986 wrote:S, can you do the OX without the 5FU...just the oxyalplatin? I don't know that 5FU did much for DH but OX was helpful. DH did FOLFOX+Avastin then just 5FU but had to go back to the full FOLFOX after a few months. His blood counts dropped too and he skipped a few rounds along the way.

Fingers crossed that the I and the E continue to work for you.

M


Good question! I don't know but I will ask my oncologist at my next appointment. This is my off week and she is out of town so I won't see her until June 27th. I'm going to get my CEA tested again before I see her since it will be a month by then. I'm not due for a scan until first week of August. Crossing my fingers too! I hope your DH is responding well to his treatment!

Shana
DX - 12/16
MSS - KRAS wild
Well-differentiated adenocarcinoma at splenic flexure
Stage IV CC with liver mets
5FU - Failed twice - 1/17 and 3/17
Irinotecan + Cetuximab: 8/17
CEA 12/17 - 38.7! 1/18 - 33! 2/18-36.5 3/18-39.8 4/18- 54 (ugh) 5/11/18 -78 :( 5/25/18-63!!!!
CT-Scan 5/18 -mixed -some progression and some shrinkage, possibly pseudo
Irinotecan increased to 200mg on 5/7/18 in response to increased CEA and it's working as of 5/25!


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