Newly Diagnosed

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Newly Diagnosed

Postby cjblack » Tue Dec 04, 2018 1:53 am


I found this board by happy accident tonight and thought I'd give it a shot. I was diagnosed just before Thanksgiving and am just getting the treatment phase of things started when I go in for surgery to remove the primary tumor, and section of colon housing it, on 12/5/2018. I'd love any and all advice you all have to give about any part of this process!

Me: I am 41 and live in Oklahoma. I have 3 kids ages 22, 16, 13. This is not our first rodeo. In 98 my husband was diagnosed with Hodgkins Lymphoma and in 2005 my now 16 yr old son was diagnosed with a Wilms Tumor (childhood kidney tumor). Let's see.... I have lung and liver mets. So that's fun (insert sarcasm).

Ask away. I'll tell you what I can.

41 yrs old
Stage 4 with mets in lungs and liver
Chemo starting soon - Avastin, Adrucil, Eloxatin
Surgery to remove primary tumor from colon on 12/5/2018
Married for 22 yrs
Kids ages 22, 16, and 13
Hubby and oldest son (16 yr old) are also cancer survivors

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Joined: Mon Oct 01, 2018 4:29 pm

Re: Newly Diagnosed

Postby Punky44 » Tue Dec 04, 2018 12:23 pm

Oh my goodness I am so sorry this is happening to you after all your family has already been through. You sound like you are a family of fighters and survivors though! You will be in my prayers!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
CEA 4/23: 2.1

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

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Posts: 801
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Newly Diagnosed

Postby GrouseMan » Tue Dec 04, 2018 1:47 pm

I see from your signature that you will be after surgery starting FOLFOX plus Avastin, ( Avastin, Adrucil, Eloxatin) Pretty much the standard first therapy. Almost everyone on these forums started with FOLFOX and some added Avastin. My wife was able to pretty much kill off her spleen and Liver tumors with those but it had spread to her abdominal cavity and that doesn't respond well to chemo in most cases. You should get some genetic testing done if your oncologist hasn't already scheduled this. Might point to particular genes that are driving the cancer that might possibly be more directly targeted. Find out if you are MSI, MSS type tumors.

You will find a wealth of information about the side effects of these chemo therapy drugs and how to deal with the side effects on this forum. My wife rarely had any issues with Chemo and she was on it continuously for almost 4 years, First FOLFOX, Then FOLFOX plus Avastin, then 5-FU plus Avastin, FOLFIRI plus Avastin, then Irinotecan plus Avastin and Erbitux. The last combination she thought was a piece of cake. Her words. Though like I said side effects were mild and manageable for her. She worked while on it with out problem. It did take a toll on her in terms of fatigue. She was very physically fit, as a lifetime runner. She was diagnosed while training for a marathon. After starting Chemo she continued to run but almost couldn't make it through a 5K. Granted she pushed the envelope some.

Welcome although I am most certainly sure you really don't want to be here.

DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

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Joined: Mon Apr 30, 2018 2:36 pm

Re: Newly Diagnosed

Postby Koreysue » Tue Dec 04, 2018 2:41 pm

Your family has been through a lot! Sorry you have to join this club, but hopefully it will help you find support and hope. I had surgery and 12 rounds folfox, and now am just consistently annoyed by a slightly elevated cea that I’m suppose to not fret about. (Easier said than done)
Many others on here who have mets will be able to chim in I’m sure.
Just wanted to say welcome, and that i’ll be thinking of you. Keep us updated
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
CEA 2/2019: 3.2

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Joined: Fri Nov 23, 2018 12:23 am
Facebook Username: Ty Wingate
Location: Arizona

Re: Newly Diagnosed

Postby oceans » Fri Dec 07, 2018 10:40 pm

Hi I’m sorry to hear that you have go through all of this. I was diagnosed with rectal cancer just before Thanksgiving and today I found out I have lung nodules. It was a complete shock and doing research on rectal cancer I found this site. The positive stories on here give me hope but I’m still very scared. I hope the best for you and everyone on here.

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

Re: Newly Diagnosed

Postby DarknessEmbraced » Sun Dec 09, 2018 3:46 pm

I'm so sorry for your diagnosis and all that your family went through! I hope your surgery goes well!*hugs*
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 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18

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