Stage IV Rectal Cancer being treated with Keytruda

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veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Stage IV Rectal Cancer being treated with Keytruda

Postby veckon » Thu Jul 27, 2017 8:09 am

I was diagnosed late last year and am in treatment at Memorial Sloan Kettering with Stage IV Rectal cancer with Liver metastases. I'm 27.

My doctor ran the appropriate tests and discovered I have Lynch Syndrome (https://www.mskcc.org/cancer-care/risk- ... h-syndrome).

Initially my doctor wanted to try a curative-intent therapy, so he assembled a team of surgeons to evaluate my case. It was decided they would attempt to resect the primary tumor entirely while preserving the rectum, and a separate operation would be performed to remove about half of the liver. I would receive FOLFOX before and after surgery.

So, I did my first round of FOLFOX beginning in late December until the necessary time before liver surgery in March. Unfortunately, during surgery they discovered metastases in the peritoneum which had not been detected on scans and had to abort the procedure.

After that we resumed FOLFOX although the goal was no longer curative. It was just meant to control the disease. However, my doctor suspected that thanks to Lynch I would a candidate for immunotherapy with pembrolizumab (Keytruda) because it is likely my tumor exhibited MSI-H (microsattelite instability high) in addition to the broken DNA mismatch repair genes from Lynch.

So MSK did their DNA sequencing on my cancer and confirmed my doctor's suspicion as well as cataloging dozens of mutations present which may or may not have clinical significance in the future. Apparently my cancer is one of those with thousands of mutations, much more than normal.

As soon as it was FDA approved in late May my doctor called and told me it was finally time to transition from chemotherapy to immunotherapy. No complaints from me there, as chemotherapy had devastated my health to the point where I needed blood, platelets, WBC shot injections etc. However as soon as I stopped the chemotherapy, all of the worst physical symptoms of rectal cancer manifested themselves again. Apparently chemotherapy had been very effective in keeping that under control.

So, I began the immunotherapy. 30 minute infusion every 3 weeks. Heaven compared to my 8 hour FOLFOX infusion (it had to be lengthened because I developed an allergy to Oxaliplatin that nearly killed me during treatment once.) The first six weeks of being treated with Keytruda saw absolutely no improvement to my condition, in fact it seemed to inflame the tumor and cause agonizing throbbing pain unlike which I have ever experienced for 24 hours a day. The only time I had relief was when I lost consciousness and slept, however briefly. These nearly two months of hell are definitely the low point in my treatment. And then, a miracle happened.

Days after my third infusion with Keytruda I began to see rapid symptom improvement. The fullness in the rectum subsided substantially. I could urinate normally again! (The tumor had been pushing against the bladder muscle making willful urination nearly impossible.) I could sit up for longer and longer periods! I could walk around without pain. It truly feels miraculous. I even returned to work full time this week!

Obviously this is just the beginning, but I guess the reason I am sharing my story now is that even when things look their darkest there is hope. Good luck everyone.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: Stage IV Rectal Cancer being treated with Keytruda

Postby jhocno197 » Thu Jul 27, 2017 10:47 am

I hope these amazing improvements continue.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Stage IV Rectal Cancer being treated with Keytruda

Postby Maia » Thu Jul 27, 2017 11:26 am

Congratulations, veckon, this is so great to read/ hear!!

More and more, we're listening to similar stories from those MSI-high treated with anti PD-1/PD-L1. You can read BeansMamma posts in this forum, and I read many others testimonials in other groups.
It is a bit strange to me that, being at the MSK and knowing you're Lynch, they didn't get you earlier into an immunotherapy trial, while Ketyruda and similar were still experimental --since it was a well-known fact that they were working for MSI-high.
Thank you for sharing this, so more people are aware of how important is to check for MSS status, these days!
Wishing you continued improvement!!

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Stage IV Rectal Cancer being treated with Keytruda

Postby veckon » Thu Jul 27, 2017 11:42 am

The reason why they didn’t start with that approach was because their initial goal was to attempt a cure through complete resection of all tumors in combination with FOLFOX. That didn’t work out because it had already spread beyond operability. Immunotherapy doesn’t offer a cure but can be effective to control the disease for what I hope will be a long time.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: Stage IV Rectal Cancer being treated with Keytruda

Postby NHMike » Thu Jul 27, 2017 1:16 pm

Thank-you for posting this as I just signed the consent form to have the MSI-High testing done and sent it in last night.

I learned a lot from your post:

- Chemo does work with Lynch Syndrome (I had read that 5 FU didn't work for those people)
- That Keytruda apparently isn't a cure - does this mean that you have to keep taking it?
- That others have the issue of pressure from the tumor causing problems with normal function.
- That it takes a while for the Keytruda to work.

I likely don't have Lynch Syndrome but I could be in the other 12% that have MSI-High.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Stage IV Rectal Cancer being treated with Keytruda

Postby veckon » Thu Jul 27, 2017 1:55 pm

How long treatment lasts entirely depends on the individual and how they respond over time. Clinical results for those genetically similar myself are extremely promising though for long term control. I have heard of those who had complete responses and were actually discharged from active treatment. Realistically, I am thankful for every day of normal life I get at this point. Each time I go to the bathroom now without excruciating pain is still surprisingly miraculous for me because of how long I had to endure the pain. I am finally myself again.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

TrojanGirlie
Posts: 20
Joined: Sun Jan 08, 2017 4:17 pm
Facebook Username: Emily Ochoa

Re: Stage IV Rectal Cancer being treated with Keytruda

Postby TrojanGirlie » Thu Jul 27, 2017 2:29 pm

Thank you for sharing. My husband is on Keytruda and XELOX right now and he is struggling with the side effects. We can't tell if it's the Keytruda or the XELOX. This gives me hope that maybe once he is on Keytruda only, he will start to feel so much better.
31 year old Husband DX Stage 3 rectal cancer - 5/16
Xeloda and Radiation (6 weeks) - 8/16
mets to liver, Stage 4 - 10/16
5FU-Erbitux-Irinotecan - 10/16-4/17
Keytruda and XELOX- 5/17-11/17
Keytruda and Xeloda- 11/17-now
Lynch Syndrome positive and MSI-high

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Stage IV Rectal Cancer being treated with Keytruda

Postby veckon » Thu Jul 27, 2017 3:18 pm

TrojanGirlie wrote:Thank you for sharing. My husband is on Keytruda and XELOX right now and he is struggling with the side effects. We can't tell if it's the Keytruda or the XELOX. This gives me hope that maybe once he is on Keytruda only, he will start to feel so much better.


Everyone responds differently but my only remaining side effect seems to be mild itching occasionally on keytruda alone.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Stage IV Rectal Cancer being treated with Keytruda

Postby Maia » Thu Jul 27, 2017 5:17 pm

veckon wrote:The reason why they didn’t start with that approach was because their initial goal was to attempt a cure through complete resection of all tumors in combination with FOLFOX.

That makes totally sense now for me, veckon. Chemotherapy is fast-acting, when it acts, so it's a better suited agent to achieve resectability. Immunotherapy usually takes a bit longer to kick in --despite there are cases of dramatic responses, some so fast that are dangerous.
Again, so happy this is working for you so well, and that side effects are so little.
I think oncologists are more comfortable talking about 'durable responses, very durable responses' than indicating 'cures'. It has been relatively recently that immunotherapy is in the field. Only in melanoma remissions of 10 years are seen.
But they have been already unresectable stage IV patients, who had a life-expectancy of months, for the standard of care, who are now NED since a couple of years ago... I'd call that a win.

NHMike
Posts: 2425
Joined: Fri Jul 21, 2017 3:43 am

Re: Stage IV Rectal Cancer being treated with Keytruda

Postby NHMike » Fri Jul 28, 2017 7:03 am

It looks like Keytruda is really getting out there for treatment:

Merck profit and sales rise, beat expectations amid big jump in Keytruda sales
Published: July 28, 2017 6:59 a.m. ET

Among Merck's top selling drugs, ... , while Keytruda revenue nearly tripled to $881 million, beating expectations of $787.5 million.

http://www.marketwatch.com/story/merck- ... 2017-07-28
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

plastikos
Posts: 339
Joined: Wed Jan 14, 2015 6:09 am

Re: Stage IV Rectal Cancer being treated with Keytruda

Postby plastikos » Fri Jul 28, 2017 9:56 am

Thanks for sharing this. Glad Keytruda is working for you.
St. IV Colon CA @ 37, male, Kras wild, MSI-high (2014)
11/2014 Right Hemicolectomy + Liver Resection
12/2014 - 6/2015 FOLFOX + Cetuximab
10/2015 - Recurrence liver
Liver resection 10/2015
FOLFIRI 11/2015 - 5/2016
Recurrence liver, nodes 11/2016
Pembrolizumab started 12/2016 -> pseudoprogression(?) -> biliary obstruction -> biliary stenting
Chemo 4x: most mets inactive and smaller on PET-CT
March 2017 - Back on Pembrolizumab again
Sept 2017 - SIRT - > NED
2019 NED

veckon
Posts: 131
Joined: Thu Jul 27, 2017 7:44 am

Re: Stage IV Rectal Cancer being treated with Keytruda

Postby veckon » Fri Aug 04, 2017 3:33 pm

Update: had my CT this morning; doctor just called with results: all tumors show significant regression, and he is going to reconvene the surgical board to reevaluate me for surgery. They are generally ecstatic either way. So am I. And my wife! I’ll admit, I cried after hearing this. Thanks so much everyone for the support.
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

Soccermom2boys
Posts: 217
Joined: Tue Nov 10, 2015 10:29 pm

Re: Stage IV Rectal Cancer being treated with Keytruda

Postby Soccermom2boys » Fri Aug 04, 2017 3:51 pm

Tears of joy, no doubt Veckon! Woo hoo, congrats and couldn't be happier for you. Continue to keep us posted and celebrate with your wife. :D
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

TrojanGirlie
Posts: 20
Joined: Sun Jan 08, 2017 4:17 pm
Facebook Username: Emily Ochoa

Re: Stage IV Rectal Cancer being treated with Keytruda

Postby TrojanGirlie » Fri Aug 04, 2017 5:19 pm

veckon wrote:Update: had my CT this morning; doctor just called with results: all tumors show significant regression, and he is going to reconvene the surgical board to reevaluate me for surgery. They are generally ecstatic either way. So am I. And my wife! I’ll admit, I cried after hearing this. Thanks so much everyone for the support.


Yay!!! So excited for you! Thank you so much for keeping us updated!!
31 year old Husband DX Stage 3 rectal cancer - 5/16
Xeloda and Radiation (6 weeks) - 8/16
mets to liver, Stage 4 - 10/16
5FU-Erbitux-Irinotecan - 10/16-4/17
Keytruda and XELOX- 5/17-11/17
Keytruda and Xeloda- 11/17-now
Lynch Syndrome positive and MSI-high

User avatar
Maia
Posts: 2443
Joined: Fri Aug 24, 2012 8:00 am

Re: Stage IV Rectal Cancer being treated with Keytruda

Postby Maia » Sat Aug 05, 2017 6:35 am

The best news, veckon. I felt the emotion myself when I read this so I only can imagine yours.
I so love reading this, thank you for sharing. Immunotherapy really is changing... life already, for those MSI-high, something that was not 'here' at all two, maybe one, years ago.


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