Dad has just been diagnosed with stage IV

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Frazzle
Posts: 3
Joined: Thu Jun 21, 2018 7:38 am

Dad has just been diagnosed with stage IV

Postby Frazzle » Thu Jun 21, 2018 7:52 am

Hi

I hope it’s ok for me to post here as I don’t really know where else I can go right now. Please forgive me if I use wrong terminology etc. I live very far from home and all of my info so far is second hand from my distraught mum

My dad has just been diagnosed with stage IV colon cancer which has spread to his liver, kidney (kidneys?), lung, leg and had “eaten away at his spine” so he’ll never walk. He got taken in to hospital with back pain and was told he probably had a slipped disc, so you can imagine what an utter shock this is for us all. We literally had no idea!

My mum has been told that chemo isn’t an option as he can’t sit up and they’ve done some radiotherapy, but I believe that’s to kill the nerve endings in his spine to stop the pain.

It’s not looking good is it...

I have so many questions going around in my head and I don’t really know what I want to ask. I guess I’d like to hear from anyone who has had a similar diagnosis and what the impact of not having chemo is on a life expectancy. I realise everyone is different and no one can tell me how long he has left but I’d just like to hear from people who know what we’re going through.

I’ve done what I shouldn’t and Googled but I can’t find anything about patients who don’t have chemo....

Thanks for reading if you got this far

mpbser
Posts: 439
Joined: Wed Apr 19, 2017 11:52 am

Re: Dad hasn’t just been diagnosed with stage IV

Postby mpbser » Thu Jun 21, 2018 10:19 am

So sorry to read about your father. I don't know what to say except that I saw your post and hope someone else with words of wisdom chimes in.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm T1 N0
CEA: 1.4, 2.1, 1.5, 1.9, 1.9, 2.1, 2.1, 2.4, 1.7, 2.0
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53
Liver left hepatectomy seg 4 1/31/18
5/18 NED

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mypinkheaven
Posts: 455
Joined: Fri May 20, 2016 4:29 pm
Facebook Username: Sally Cunningham
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Re: Dad hasn’t just been diagnosed with stage IV

Postby mypinkheaven » Thu Jun 21, 2018 11:48 am

Frazzle wrote:


My mum has been told that chemo isn’t an option as he can’t sit up and they’ve done some radiotherapy, but I believe that’s to kill the nerve endings in his spine to stop the pain.



I've never heard about chemo not being an option because the person can't sit up. I know that at the chemo center I go to, some people are in beds receiving chemo. Maybe you can ask your mom about that again.

Best wishes.
MSS, KRAS Wild NRAS Mutated
9/2012 CRC IIB Lft Colectomy 0 lymph nodes 0 Chemo
10/2013 CT clear
11/15 CEA 2.7 to 4.6
11/15 Spread to uterus. Hysterectomy
2/16 Pelvic radiation 25, brachytherapy 3
4/16 - 6/16 Xeloda
6/16 CT Several lung nodules 5 mm
8/16 CT Nodules still present. Most stable. Some growth
11/16 Transfer to UCSD Moores
12/16 Folfox + Avastin failed
2/17 Folfiri + Erbitux
8/17 5FU+Erbitux No 5FU bolus
7/18 Spread to vagina
6/18 Folfiri + Avastin + Trametinib
6/18 CEA dropping

Frazzle
Posts: 3
Joined: Thu Jun 21, 2018 7:38 am

Re: Dad hasn’t just been diagnosed with stage IV

Postby Frazzle » Fri Jun 22, 2018 4:54 am

Oh right. I did wonder! I don’t think she’s taking it all in to be honest. Perhaps they think it’s too late for chemo then?

Thanks for your replies

DarknessEmbraced
Posts: 3115
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: Dad has just been diagnosed with stage IV

Postby DarknessEmbraced » Tue Jun 26, 2018 10:38 am

I'm so sorry your Dad is going through this!*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

Lee
Posts: 5666
Joined: Sun Apr 16, 2006 4:09 pm

Re: Dad has just been diagnosed with stage IV

Postby Lee » Tue Jun 26, 2018 12:21 pm

Is there any way you can talk to your dad's doctors. I agree with other comments, he should be able to get chemo whether he can sit or not.

So sorry you are dealing with this,

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!

teresajj1
Posts: 28
Joined: Sun Mar 27, 2016 7:36 pm
Location: Florida

Re: Dad has just been diagnosed with stage IV

Postby teresajj1 » Fri Jun 29, 2018 5:39 pm

With such a serious diagnosis I would get a second opinion. No chemo does sound strange. Maybe it's too widespread for chemo to offer any benefits? Did they tell you how long hes expected to live with or without treatment? Or you can call a big cancer center like MD Anderson or Moffitt Cancer Center and see if they can offer any advice. Im so sorry you are going through this. Good luck to you and your dad.
Dx 3/2016 @ 36yrs old Stage IIIB CC RT Hemi-colectomy
T3N1M0. 2/37 lymph nodes
4/2016 Started 12 rounds of 5 FU & Oxi Chemo
7/2016 Stopped chemo after 5 rounds due to chest pain & had port removed
6/2017 Colonoscopy 2 benign polyps
8/2017 Tested Positive for MUYTH Gene
10/2017 Clear CT Scan; CEA 1.9
5/2018 CEA 447 & CA-125 144
6/2018 Stage IV w/drop metastases to ovaries & peritoneal cavity (3 tumors)
7/2018 Scheduled for cytoreductive surgery & Hipec


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