Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

Please feel free to read, share your thoughts, your stories and connect with others!
Ehut
Posts: 197
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

Postby Ehut » Sun Nov 25, 2018 8:01 pm

Spazzyjanet wrote:For those of you who are 7+ years out from a Stage 4 diagnosis. Are any of you NOT receiving treatment from a top 5 cancer hospital?


I went to Mayo in Rochester, so I consider that a "top 5" hospital. I have low confidence in local hospitals based on experiences with family members. For instance, right now my mother-in-law is in a local hospital for unexplained weakness and exhaustion causing her to fall repeatedly at home and not be able to even get on a toilet. The doctors spent several days treating a non-existent infection and her condition gets worse and worse after a week there. No one seems to take responsibility and the communication is abysmal. Completely opposite experience at Mayo.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 6+ years and counting!

debb
Posts: 163
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

Postby debb » Mon Nov 26, 2018 8:32 am

I’ve been a patient at MSKCC in nyc since the beginning (10 plus years) But I received chemo at my local oncologist in NJ. Now that MSKCC opened a center in NJ near me, i now recieve treatments there, but still head to NYC to see my doc there.
Stage 3C, Dx at 42, mom of 4
Colon resection 7/08
Folfox 9/08-2/09
Met to right ovary, both ovaries removed 7/10
HIPEC 8/10
VATS 7/12, 2 nodes, right lung
10/14 3 lung nodes, Stivarga clinical trial
3/15-7/15 Folfiri & avastin for lung things
Break! One year of freedom
8/16 Folfiri & avastin..lung things again
Break! 10 months of freedom
1/18 rib mets, radiation, folfiri & avastin

mom_2_3
Posts: 360
Joined: Sat Nov 29, 2008 8:09 pm

Re: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

Postby mom_2_3 » Mon Nov 26, 2018 11:00 pm

I was diagnosed with cancer during the caesarean birth of my daughter and discovered I was Stage IV 6 days later on my 39th birthday. That baby just turned 10 and I have been NED for 9 1/2 years. There is hope. When I was first diagnosed all I wanted to know was that long-term survival was possible and I think you can see from this thread that it is.

Best wishes,
amy
CC discovered during c-section (11/4/08)
Diagnosed Stage IV 11/10/08 -- Happy 39th Birthday! 5 bilobar liver mets
02/09: Colectomy, liver resection, HAI pump implanted, 7 of 42 nodes
7 months of FUDR and 5FU ended 11/2/09
7.34 years NED as of 06/2016. Next scan June 2017.

Opal9596@yahoo.com
Posts: 3
Joined: Sun Nov 18, 2018 8:42 am
Facebook Username: Opal9596

Re: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

Postby Opal9596@yahoo.com » Tue Dec 04, 2018 9:10 am

Thank you everyone. These stories are so helpful. Google is a nightmare but I’m trying to learn about my disease. I just found out that I have a BRAF mutation which doesn’t sound good. All of my pathology reports are not in yet. I’m going to Sloan Kettering and I’m so lucky that it’s only 20 minutes form where I live in NJ. My port goes in on the 11 and a very strong chemo treatment will begin shortly after that.
I’m trying to focus on Christmas because usually it makes me so happy but it’s been so hard. I absolutely must see my children grow up. I can’t leave them as babies.
It’s hard too because after surgery I have never felt better. It’s scary to think I’m going to purposely be poisoning my self very soon. It’s needed. I know. But I feel well and not sick.

Allen
Posts: 11
Joined: Fri Jun 01, 2018 2:29 pm
Facebook Username: Allen

Re: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

Postby Allen » Wed Dec 05, 2018 3:39 pm

My diagnosis was almost one year ago, at age 51 - colon cx w/ single liver lesion. Completely shocking, of course. On the advice of my doctor, I decided not to do much research. He told me I would find old and out of date statistics, usually involving older, sicker patient cohort. I took that advice. Resolved early on that I was going to find docs I felt comfortable with, and then do what they tell me and keep living my life. I went through 6 FOLFOX treatments, then surgery at Johns Hopkins, then 6 more FOLFOX treatments, finishing in August. Since then - CT and MRI all CLEAN and CLEAR!!!!

To my pleasant surprise, the treatment wasn't nearly as debilitating as I expected. I kept working. I stayed active, including very my usual vigorous exercise routine. I took a family trip to Maui mid chemo. Nothing is guaranteed - I know that - but the past year almost seems like a bad dream. 2018 is ending a hell of a lot better than it started. I'm sure you'll be able to say that about 2019.

Keep the faith. Stay strong. Stay busy, engaged and distracted (shouldn't be hard with young kids)!

Gravelyguy
Posts: 82
Joined: Thu Jul 05, 2018 6:03 pm

Re: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

Postby Gravelyguy » Wed Dec 05, 2018 4:00 pm

It’s hard too because after surgery I have never felt better. It’s scary to think I’m going to purposely be poisoning my self very soon. It’s needed. I know. But I feel well and not sick.


I felt the same way and every treatment stage after took me further away from feeling well. The hardest part was psyching myself up for the next round of chemo as I too struggled with the idea poisoning myself. Being on the other side now I can say that it may get bad but, like childbirth (so I am told), the pain and discomfort subsides as time goes on post treatment.

I have a retired oncologist friend who has advised me through my journey. I told him the same thing, that I felt fine. He told me that is the best as it gives you reserves to fight this awful thing. Those that go into it already feeling bad oftentimes have a much rougher time of it.

Dave
6/17 dx mCRC t3n1m1 very low rectal tumor 2 very small liver Mets

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection cancer is out of here!
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12 clear scans, CEA .9 still NED!

User avatar
DBF
Posts: 304
Joined: Fri Jun 07, 2013 1:44 pm
Facebook Username: https://www.facebook.com/#!/profile.php?id=1000008
Location: New York

Re: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

Postby DBF » Thu Dec 06, 2018 7:51 pm

Hi! I was also diagnosed at 42. That was 5 1/2 years ago. I was treated at both MSKCC and at NYU. I was on ADAPT long-term, but stopped all treatment when I reached the 5 year mark this past May.

You can see there are quite a few stage 4 long-term survivors here. :)
6/13 Dx @ 29 Wks pregnant, 42 yo
Adenocarcinoma, mucinous features
7/13 C-sec/col resec/part. hysterectomy
8/13 Pulm embolism
8/13 Liv met
9/13 Liv resect
FOLFOX
CEA UP
ADAPT: Xeloda/Celebrex
2/14 oopherectomy
10/15 obstruction surg
10/17 Scar tissue removal/vsg surg
NED :D
Mom to 3 boys: 20, 9 & 5

teacher2017
Posts: 211
Joined: Sat Sep 09, 2017 1:18 pm
Facebook Username: Lydia Clark

Re: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

Postby teacher2017 » Fri Dec 07, 2018 8:38 am

I have to add here. I am the person who was panicked in Sept 2017 at stage 3c and wrote the “Positivity needed” post. I later had a liver met and had a resection. I am currently NED. I have read it all. And one thing that’s helped me is knowing that these stats are old. They encompass the old, those who opt out of chemo and those who died of other things other than cancer. So google dr is a fraud! Read all you can, get into fight mode and vow not to die this way. You can do this. Get in the game.
48 year old female- mom of 2 (12,15)
DX stage 3c - 12/17 LN. T3
8" sigmoid resection Sept 22 2017
6.1cm tumor size
chemo -folfox 11/8/17-4/18
CEA level- 1.4 11/8/17
Colonoscopy- 5/30/18 - CLEAR!
Cea level- 1.8 6/1/18
Cea level- 2.1. 8/4/18
Sh$t has hit the fan- 8/10/18 Stage 4
1cm met in seg.8 liver
Liver resection- 9/12/18
Cea level- 1.5 10/1/18
Cea level- 1.2 12/1/18
Clear scan- 12/5/18

WarriorSpouse
Posts: 160
Joined: Tue Aug 16, 2016 9:02 pm

Re: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

Postby WarriorSpouse » Fri Dec 07, 2018 9:43 am

Hey Opal,

My wife has crossed the four year mark of NED status and is heading for year 5 now. After the first year of an aggressive treatment plan, her maintenance plan involves Zeloda pills (2 weeks on and one week off) and a visit to oncology every three weeks for an Avastin infusion.

Her life is very well managed over the past three years, since the treatment plan is less harsh and the maintenance side effects are less prevalent. Many on this forum only pop-up here on their yearly anniversary, but there are many people over 5 years of survival on this forum. You can use the search engine under "quick links" to find their posts.

Basically these survivors are out there, so keep your head down and get through the initial treatment period and know that it will become more manageable and less intrusive after the first year. We are all here to support you along the way and wish you a speedy recovery from your recent resection. It sounds like you are well on your way and getting great care from an excellent cancer center.

Best wishes.
WS
Spouse of wife 47 years old
10/2014, Stage IV Metastatic CC
Lymph node involvement 12/15, w/ positive PET on para-aortic lymph nodes.
5 cm sigmoid tumor resection as well as positive Virchow lymph node.
KRAS mut, Highly Differentiated, Lynch Negative
Folfox and Avastin 1 YR (Oxi for 5 months) NED 05/2015
Zeloda and Avastin since 01/2016
Chemo break 03/2017, back on Zeloda and Avastin 04/2017.

"...Perseverance is not a long race; it is many short races one after the other."
-Walter Elliot

rp1954
Posts: 1393
Joined: Mon Jun 13, 2011 1:13 am

Re: Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

Postby rp1954 » Fri Dec 07, 2018 6:40 pm

My wife was dx'd ~8.7 years ago, what turned out to be stage 4b (AJCC 6th)/4c (7th ed) colon cancer - mets in the omentum, various deposits, para aortic biopsied; unbiopsied immune/chemoreactive objects in the liver and lungs. We used the best regional surgeons we could find (region = 20m - 100m), a mild, oral 5FU drug available overseas, metronomic immunochemo with various recommendations from research, LEF references, specialists and alternative MDs. The MDA onc's estimate was under 2 yrs "tops".

We have limited consults with standard oncologists, we usually demand more advanced (or alternative) techniques than they are able to support. We usually get better, more advanced support/research by other means.
watchful, active researcher and caregiver for stage IVb/c CC since early 2010. 8 yrs immuno-Chemo for mCRC, now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: No registered users and 43 guests