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

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Opal9596@yahoo.com
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Newly diagnosed stage 4 colon cancer at 42. Looking for hope and inspiration.

Postby Opal9596@yahoo.com » Sun Nov 18, 2018 8:52 am

I recently found an old post her where people talked about surviving 10 plus years with this diagnosis. It was a great comfort for me but an old post.
Can someone post if they are doing well 5 or more years after diagnosis and what treatments they are on.
I have 2 small babies and I need hope to be with them as long as possible.
I just had successful colon resection three days ago. I am doing great with that. The cancer spread to nearby lymph nodes and I have metastasis to my lungs. 6 small nodules.

stu
Posts: 901
Joined: Sat Aug 17, 2013 5:46 pm

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

Postby stu » Sun Nov 18, 2018 11:54 am

Of course we can . My mum is nine and a half years into her stage 4 diagnosis. She keeps well .
Much love to you and your family .
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 .

Cmac1275
Posts: 52
Joined: Mon Aug 06, 2018 4:21 pm

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

Postby Cmac1275 » Sun Nov 18, 2018 12:38 pm

I was diagnosed this past January at age 42 as well. I’d tell you not to focus on survival statistics. But it’s practically impossible. I resisted for a long time and eventually caved.

So, what I’ll say is that everyone is an individual. And yes, you should look at long-term survival stories for inspiration and hope. But invariably you’ll find stories of less fortunate folks.

Try not to let it consume you. Find the best medical care you can get. Consider visiting a top cancer center if possible. And focus on what you can control. I’ve had colon resection, liver resection and currently finishing up my 10th chemo sesssion. I seeked help from a naturopathic doctor to implement a more integrative treatment plan. Meaning, supplements, nutrition and exercise. I believe this has helped me tremendously. At least in terms of how I tolerate chemo and my overall well being. I feel blessed that other than 2-3 days post chemo, I feel pretty darn good.

Lastly, my parents have urged me to seek additional support in faith. This was hard for me. I havent devoted much time to church or God in a very long time. But I can say that having that spiritual release has also helped.

Sending prayers and positive thoughts your way.
42 yr, male, husband and father of 3
DX Stage IV Colon Cancer Jan 2018
Multiple liver mets
KRAS G13D / MSS

Jan 2018 Partial colon resection
Mar 2018 FOLFOX + Avastin | CEA 60.1
July 2018 Partial liver resection | CEA 4.7
Sep 2018 Recurrence in liver | CEA 2.9
Oct 2018 FOLFOX + Avastin
Nov 2018 Stopping FOLFOX. New mets | CEA 4.3
Dec 2018 Beginning AbbVie ABT-165 Trial

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Phuong
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Facebook Username: Phuong Ly Gallagher

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

Postby Phuong » Sun Nov 18, 2018 1:47 pm

It's been 11 years for me. I've run the gamut as far as treatments go. While I have active disease, I have years in between of NED. I continue to be active and live a full life and continue to celebrate milestones with my family. Yes there are crappy days, but it is doable. So go after this disease with all you've got and be present with your babies. You can do it!
Phuong
http://sonofamotherlessgoat.net/
dx'd Stage III Rectal (T3 N1 M0)
Now Stage IV mCRC

Opal9596@yahoo.com
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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 » Sun Nov 18, 2018 8:37 pm

Thank you all. There is so much negativity on this subject. I just really need some positivity right now. I’m having a real hard time. These post are a gift to my soul.

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horizon
Posts: 1490
Joined: Tue Apr 12, 2011 10:10 pm

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

Postby horizon » Sun Nov 18, 2018 10:16 pm

Opal9596@yahoo.com wrote:Thank you all. There is so much negativity on this subject. I just really need some positivity right now. I’m having a real hard time. These post are a gift to my soul.


It's overwhelming at first. You'll find lots of people here who can empathize and understand what you're going through. I'm glad your resection went well. Keep on fighting!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 7 years NED). Is this real life?

henry123
Posts: 149
Joined: Sun Oct 08, 2017 3:25 am

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

Postby henry123 » Wed Nov 21, 2018 5:52 pm

Stay strong and positive . There is hope as long as there is life.
46yo M
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
msi-h Lynch
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver.
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
2/18 2.3
4/18 2.0
Aspirin start
6/18 1.5 CT clear
8/18 1.3
10/18 1.2
12/18 1.1 CT Clear NED
Vegan yoga juicing apricot
Still on opdivo

ginabeewell
Posts: 38
Joined: Wed Oct 24, 2018 10:30 am

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

Postby ginabeewell » Wed Nov 21, 2018 9:16 pm

I found the book Radical Remission right as I was at my darkest point, and it really helped get me to a place of optimism. I know my stats aren't great, but the stats don't know me!

I'm doing my best to live, and that includes elements of TCM including supplements and acupuncture. That seems to be helping. Biggest challenge now is eating and coping with side effects. There is something about the immediacy of physical symptoms that has kept my head off worrying about the future - silver lining maybe?

Also if I die: who will clip my kids' fingernails?! I have work to do here yet!!
45 year old mom of twins (7) and lucky stepmom of 13 and 15 year olds
9/11/18 colonoscopy
9/17/18 DX stage 4 CRC with inoperable liver metastasis (largest 11 cm)
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
10/15/18 CEA 913
11/12/18 CEA 49

kiwiinoz
Posts: 1107
Joined: Thu Jan 03, 2013 11:44 pm

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

Postby kiwiinoz » Wed Nov 21, 2018 9:31 pm

Hi Opal
2 weeks short of my 6 year mark and there is always hope.
Currently not on any treatment.
Let's hope you can be in that place too.
Kiwi
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - 27 Feb 2018
Port Out 26 March 2015

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

Postby ranger » Thu Nov 22, 2018 1:06 am

Hi friend. I had Stage 4, a tumor in my sigmoid colon with lymph node involvement and a liver met at age 58. After a rough start w emergency surgery for perforating colon and resection I went with standard protocols of chemo and liver resection, and adjuvant (mop up) chemo. Never say never but it never came back. I'm 9 years out. Only thing I'd do differently is I would try CBD or medical marijuana to help with anxiety, appetite, nausea, insomnia and other side effects. One thing I'd do the same is apply for disability and Medicare.
Good luck to you. Somebody has to win one for the team, it might as well be you.
Ranger
colon resection 3/09
liver resection and takedown 8/09
11 rounds of folfax, avastin. plus AM655 or placebo, completed jan 2010
hernia repair 3/11
http://cancerissofunny.blogspot.com/
https://m.facebook.com/Cancer-is-SO-fun ... 100303900/
@cancerissofunny
age 67, never thought I'd make it. happy.
NED a long time.
Essential Thrombocytosis, monitoring
still here.

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

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

Postby Spazzyjanet » Thu Nov 22, 2018 7:05 am

I'm just under three months out from my stage 4 diagnosis and like you am searching for stories of long-term hope. I just get a look of pity and a reality check when I tell them than I am shooting for long-term survival. Yet I see stories of people who are 10-years out or longer from a stage 4 diagnosis and it gives me hope. My youngest is 8, and if there is at all a chance I can see him graduate from high school I will shoot for it.
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

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 » Fri Nov 23, 2018 12:27 am

I was 35 at the time of stage IV DX with a 20 month old daughter. At the time I managed to stay positive, yet deep down expected the worst. Next week will mark 7 years since diagnosis, over 6 of which have been NED. My doctors now tell me I am most likely cured, but I still remain vigilant. We added another daughter to our family last year and are thinking of adding another. There is definitely hope after such a serious and terrible diagnosis.
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 » Fri Nov 23, 2018 12:28 pm

I was diagnosed over 10 years ago, at the age of 42. I have been in and out of treatment over the last 10 years. I'm a mom to 4 and I've been able to actively raise my kids. When I'm in treatment, it is a little hard, but I have a great support team. And when I'm off of treatment, I just live my normal life. I'm currently on a chemo break and I'm cooking turkey today and running a 5k tomorrow. Live you life...don't let cancer take over it. Good luck!!
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

Spazzyjanet
Posts: 54
Joined: Mon Oct 01, 2018 3:28 pm
Facebook Username: Heather Stoker

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

Postby Spazzyjanet » Fri Nov 23, 2018 2:23 pm

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?
40 yr old, 3 kids. Dx 9/2018, Stage IV
KRAS G12V (resistant to Cetuximab)
CEA levels normal at diagnosis
4.2 cm Tumor, PT3, PN2B
11 of 18 with adenocarcinoma
+ removal of one cancerous node in Peritoneum.
9/2018, Colon resection and Ostomy-- Margins Negative
10/2018, PET shows 6 liver mets
10/2108, begin FOLFOX (Oxi+5 FU)
11/2018, MRI updates potential liver metastasis to 11 mets, both lobes.

Koreysue
Posts: 57
Joined: Mon Apr 30, 2018 2:36 pm

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

Postby Koreysue » Fri Nov 23, 2018 2:30 pm

Spazzyjanet, that is a good question! I wonder that too. Always thinking... should I have gone to one of those hospitals?! But then I remember that the treatment I received is the standard treatment. Hard not to fret about everything.
Diagnosed: June 2017 stage 3 colon cancer
Sigmoid colon, 2 nodes affected
CEA at diagnosis: 6
Sigmoid Colectomy and folfox (chemo complete January 31, 2018)
CEA 4/2018: 2.4
CEA 7/2018: 3.7
Colonoscopy 8/2018 clean
PET scan 8/20/18 clear (cea rise a mystery for now, doc said maybe all the smoke in my town from forest fires)
CEA 11/2018: 3.8


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