Colon cancer

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fwregnery
Posts: 1
Joined: Sat Jun 17, 2017 11:27 am

Colon cancer

Postby fwregnery » Sat Jun 17, 2017 11:49 am

Hello,

In early June of 2016 I was diagnosed with BRAF colon cancer (fastest growing and most difficult to treat) which had metasticized to my liver with 23 lesions.Four oncologists gave me 6-12 months and said surgery would be impossible.I would not allow myself to believe this.

I started wkith Folfox and Avastin every other week with an infusion bag for two days.Heavy doses.The only side effect was I did not have was nausua.

It was extremley important to keep my weight up regardless of what I ate.I had gone from 160-pre-cancer to 140 in June of 2016.Within three months I was at 163.A lot of ensure, ice cream and coffee cake.They took 12 inches from my colon because there was a blockage so I had to wait six weeks for the chemo treatments.The tumors grew and Folfox started.12 treatments then my blood platlets got too low and neuropathy set in but not bad.This is common for Oxiplatin which is included in Folfox.Then Folfiri and the only difference was oxiplatin is rel\placed with Irintecan.Eight more treatments.

All the while my daughter was doing research.She like myself would not accept what the oncologists were telling us.After four months the tumors were almost 1/2 of their original size.My Daughter contacted John Hopkins in Baltimore and the liver surgeon.That hospital and Sloan Kettering if you have cancer especially colon are the best in the U.S. for certain.

My appointment was set for April.My oncologist thought it was a waste of time.Doctor He,the surgeon at Hopkins took a cat scan and immeadiatly said I was a canidate for a resection.if cancer was also outside my liver they would not have operated.A few days later the team at Hopkins wanted an MRI.Same results as the cat scans.I had to wait six weeks to get most of the chemo of of my system then the operation was performed on May 18th.I was told by many if and when surgery was an option 40% of my liver neeed to be replaced.Doctor He removed 10% and of the 23 lesions 22 were dead and the 23 was almost dead and was removed.I am now cancer free.

The moral of the story is never believe your oncologist if he says resection is impossible.If colon cancer use the same drugs as I outlined then make an appointment with Doctor He at John Hopkins.In my case it was the difference between life or death.

Lee
Posts: 4822
Joined: Sun Apr 16, 2006 4:09 pm

Re: Colon cancer

Postby Lee » Sat Jun 17, 2017 4:04 pm

fwregnery wrote:The moral of the story is never believe your oncologist if he says resection is impossible.If colon cancer use the same drugs as I outlined then make an appointment with Doctor He at John Hopkins.In my case it was the difference between life or death.


Hi and welcome.

Yes to the above statement. Onc should NOT offer surgeon type opinions and surgeon's should NOT offer Onc type opinions. 2nd (and ever 3rd) opinions are always a good idea especially when dealing with a stage IV diagnoses. And yes you do have to be your own advocate.

Glad you were able to get the surgery. Sounds like you have a wonderful daughter. Always good to have support team on your side.

When you can, find an exercise that you enjoy and stick with it. In recent years they have found exercise can reduce the chance of a recurrence by up to 50%.

Take care of yourself and welcome.

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

DarknessEmbraced
Posts: 2593
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Colon cancer

Postby DarknessEmbraced » Sun Jun 18, 2017 4:23 pm

Congratulations on being cancer free! :D
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/2016
NED 11/10/16

Forsythia
Posts: 1
Joined: Wed Jun 14, 2017 11:24 pm

Re: Colon cancer

Postby Forsythia » Sun Jun 18, 2017 5:43 pm

Wonderful story and advice - especially great to hear on Father's Day. Congratulations and thanks for sharing here! :D
DH dx age 50 1/2016 RC stage IV MSS KRAS WT liver mets CEA 211
03/2016 resections and HAI
Folfox 6 months total mostly before resections ~ Brief NED then Xeloda 03/2017 for rising CEA and suspect lung mets
CEA steadily increasing since Feb and doubled in 1 week from 60 to 130 5/2017
Now Erbitux and Irinotecan started 5/2017 instead of Xeloda

rp1954
Posts: 1150
Joined: Mon Jun 13, 2011 1:13 am

Re: Colon cancer

Postby rp1954 » Sun Jun 18, 2017 9:28 pm

Thanks for your post. People need to know that "death sentences" may often be overturned. To me, the lesson is to achieve adequate intensity of chemo and immune modulation to get enough response to become resectable by upper tier or world class surgeons. And be your own advocate.

As for the specific chemo, there are adjuncts for KRAS/BRAF mutant cells with higher therapeutic index and less side effects, but they are not highly profitable or generally accepted in the USSA. In our situation, somewhat different, we reduced the chemo gap from 6 weeks to 1 day with good chemo activity by using a different 5FU drug for KRAS mutants and milder VEGF-A reduction agents.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC

sdino
Posts: 21
Joined: Tue Mar 28, 2017 5:32 pm

Re: Colon cancer

Postby sdino » Mon Jun 19, 2017 12:48 pm

fw - Great News !

rp1954 - quick question, when u have time ... what does this refer to "a different 5FU drug for KRAS mutants and milder VEGF-A reduction agents" ?
thanks, sdino
Caregiver for Wife 52 yrs old
DX: 11/16-CC sigmoid colon 3 cm, Lung Bio-Adenocarcinoma Stg IV
Mets: 1.2 cm now 7 mm lung w/14 other nodules less than 6 mm.
3 lymph nodes
MSS, KRAS-mut G12D; TP53;
Chemo: Complete 12 rounds Folfox/Avastin + Oxi 11/16 to 5/17
CT Scans: 11/16; 1/17 lung mets/colon shrinkage; 3/17 lung mets no change, shrinkage lymph/colon tumor, 5/17 colon & lung met shrinkage
CEA: 16 - 11/16; 4 – 12/16; 0.7 – 1/17; 0.5 – 2/17; 0.6 - 5/17

mct
Posts: 35
Joined: Sat Nov 12, 2016 10:08 pm

Re: Colon cancer

Postby mct » Mon Jun 19, 2017 5:05 pm

Good for you and your daughter for persevering. We always assume that doctors know best....but, clearly, not always.
Breast cancer 2009
Rectal cancer Nov 2016, T3N0M0, CEA - 10.3
28 days rads/Xeloda - finished Jan 19 2017
Surgery ULAR Mar 17, 2017
Anastomotic leak, surgery for ileostomy April 4, 2017
May 2017 CEA - 2


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