Hope vs reality

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ScaredButGottaWin
Posts: 17
Joined: Sat Nov 18, 2017 5:53 am

Hope vs reality

Postby ScaredButGottaWin » Wed Feb 12, 2020 12:21 am

I want to be hopeful. Very much so. It is what we are supposed to do. At the same time, I know based on what doctors tell me and what I can figure out online, is that I don't have a lot of time left (maybe a year). How the f#@k are you supposed to live like this?!?! I want to be hopeful, but that is hard in light of the circumstances. Quite simply, my question to the group is how you keep your shit together while knowing what the road ahead looks like?
Colonoscopy Nov ‘17
Peritoneal Mets discovered Dec ‘17 (signet ring cell)
FOLFOXIRI - Jan'18-April '18
HIPEC May '18 (NED!)
FOLFIRI June '18-April '19
Recurrence Jan '20 - peritoneal cavity

Rock_Robster
Posts: 1027
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Hope vs reality

Postby Rock_Robster » Wed Feb 12, 2020 5:30 am

Funny I was just discussing this with my therapist today. His view is that the future is unknowable - for everyone, not just cancer patients. But because we have a lot of statistics available to us, we tend to have a false confidence in how we think things will play out (as evidenced by your “maybe a year”, and “knowing what lies ahead” comments). The reality is there is no way to know this for any individual case or person.

Given the future is unknowable, what we can do however is have faith in our ability to cope and handle it, whatever may happen. This doesn’t mean it will necessarily be pleasant, but that we can manage. You have already been through a lot (tough diagnosis, tough chemo, tough surgery), and you have demonstrated repeatedly your competency and capacity to handle adversity. So all you can do is believe in your ability to continue to handle and make the most of whatever the future might bring - positive or otherwise.

Sorry I know this isn’t necessarily great, but I found it more helpful than the “just think positively!” approach.

Rob
41M Australia
2018 Dx RC
G2 EMVI LVI, 4 liver mets
pT3N1aM1a Stage IVa MSS NRAS G13R
CEA 14>2>32>16>19>30>140>70
11/18 FOLFOX
3/19 Liver resection
5/19 Pelvic IMRT
7/19 ULAR
8/19 Liver met
8/19 FOLFOX, FOLFOXIRI, FOLFIRI
12/19 Liver resection
NED 2 years
11/21 Liver met, PALN, lung nodules
3/22 PVE, lymphadenectomy, liver SBRT
10/22 PALN SBRT
11/22 Liver mets, peri nodule. Xeloda+Bev
4/23 XELIRI+Bev
9/23 ATRIUM trial
12/23 Modified FOLFIRI+Bev
3/24 VAXINIA (CF33 + hNIS) trial

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GrouseMan
Posts: 888
Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Hope vs reality

Postby GrouseMan » Wed Feb 12, 2020 10:31 am

Well - It was especially difficult for me as a caregiver, and former Anticancer drug discovery chemist. I very much knew what the diagnosed meant. The very advanced staging I pretty much knew what to expect, talk about despair that I tried very hard to keep to myself! My wife kept up a pretty positive though unrealistic view of her situation. We both knew but never let it really get her down. She lived her life pretty much the way she desired to live it. Set goals I think deep down she knew she could not achieve, and I went along with them. She retired a few months before her passing, and enjoyed her time on a horse chasing dogs in field trial events and judging these which was her primary hobby. She had judged an event on horseback only a week before she was last hospitalized.

My advice. Look for a clinical trial that might extend that time some if possible, and if your quality of life is still good - do some of the things you always wanted to do but haven't yet taken the time to do. Try and enjoy the time you have left. Spend time with friends and family that you enjoy being around.

Good luck

GrouseMan
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

brokenwings
Posts: 147
Joined: Mon Jan 07, 2019 1:50 am

Re: Hope vs reality

Postby brokenwings » Thu Feb 13, 2020 2:13 am

I ask myself that same question on a daily basis... I wish I had an answer...
I feel related to your story because even if right now I'm dealing with some liver mets, I know my demise will be peritoneal disease. I had lots of it before Hipec and it's bound to return and kill me.

I second the idea of looking for clinical trials as I've seen that in some cases they can be life-prolonging... Are you familiar with the Trial Finder?

Hugs
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy.
Folfirinox + Avastin: 6 cycles. Scans: partial response.
Surgery (CRS + HIPEC) 04/29: too much disease, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin). 8 cycles
10/31/2019: 11 hour-long Hipec + 6 weeks in hospital
12/30/2019: liver met
02/05/2020: reversal surgery. New peri mets discovered
March 2020: 5fu+Avastin
May 2020: fistula
Back to 1957: 5fu.

njknittle
Posts: 10
Joined: Thu Feb 06, 2020 1:09 am

Re: Hope vs reality

Postby njknittle » Wed Feb 19, 2020 9:15 am

ScaredButGottaWin wrote:I want to be hopeful. Very much so. It is what we are supposed to do. At the same time, I know based on what doctors tell me and what I can figure out online, is that I don't have a lot of time left (maybe a year). How the f#@k are you supposed to live like this?!?! I want to be hopeful, but that is hard in light of the circumstances. Quite simply, my question to the group is how you keep your shit together while knowing what the road ahead looks like?


My grandfather was given mere weeks to live. I think 6. Although it wasn't colon cancer it was bone cancer, he still managed to fight for almost 7 years. The doctors don't know everything and I think usually the numbers they throw at you are worst case arbitrary numbers. Stress is fuel for cancer so just keep pushing. Don't give up.

WarriorSpouse
Posts: 220
Joined: Tue Aug 16, 2016 9:02 pm

Re: Hope vs reality

Postby WarriorSpouse » Wed Feb 19, 2020 2:07 pm

At the time of my wife's diagnosis, she was given a 12% chance of survival... Many with her condition passed within 6 months to a year. At that point I began to advocate the 50% rule to put statistics in her favor. The treatments will either prolong life or they won't (50/50); and the next surgery will work or it won't (50/50)... In doing so, she made an affirmative commitment to keep trying and surviving rather than waiting passively for the end.

I am just speaking from our experience, but the battle is worth fighting. She is heading toward her 6th year of survival. All the best in your current approach to fighting this difficult battle. You are in our thoughts.
WS
D/H 47 years old, 10/2014, Stage IV M/CRC, nodes 12/15, para-aortic, 5 cm sigmoid resection, positive Virchow. KRAS mut, MSS, Highly Differentiated, Lynch Neg, 5FU/LV and Avastin 1 YR (Oxi for 5 months), Zeloda/Bev since 01/2016. 02/2019 recurrence para-nodes, back to 5FU/LV Oxy/Bev. It is working again. "...Perseverance is not a long race; it is many short races one after the other."-Walter Elliot

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: Hope vs reality

Postby Lee » Wed Feb 19, 2020 2:21 pm

So very sorry for what you are going through.

This is a thread from a guy many of us loved who past away a few years ago. He was only given a few months to live, butt managed to live beyond 5 years. He made the most of the time he had. Maybe you can find some inspiration in it.

viewtopic.php?f=1&t=50374&hilit=frenchie

Good luck,

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 - 16 years and counting!

ScaredButGottaWin
Posts: 17
Joined: Sat Nov 18, 2017 5:53 am

Re: Hope vs reality

Postby ScaredButGottaWin » Wed Mar 11, 2020 7:09 pm

Thank you all for your supportive words. Just found out I failed FOLFIRI+Avastin. Now on to FOLFOX+Panitumumab. Basically am screwed. Cant deal with this. This f*#ing disease
Colonoscopy Nov ‘17
Peritoneal Mets discovered Dec ‘17 (signet ring cell)
FOLFOXIRI - Jan'18-April '18
HIPEC May '18 (NED!)
FOLFIRI June '18-April '19
Recurrence Jan '20 - peritoneal cavity

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: Hope vs reality

Postby Gravelyguy » Thu Mar 12, 2020 1:06 am

So sorry to hear of this latest setback. Vectibix can be pretty powerful if you are KRAS wild type so hopefully that might help your fight.

To answer your question I tend to agree with Rob, no one knows how long they have so we should all be making the most of it.

I would add that I am a follower of Jesus and what has helped me through all of this crap is the knowledge that no matter what happens, in the end, I know, without a doubt, where I am going. While I have always tried to live out my faith, this journey has really tested it.

What I have found, after pleading for it all to go away is strangely peace and a mission to show more love and compassion. I teach in a school with many struggling kids. I had the option of going on SS disability early in this process but I chose to continue teaching. Since treatment finished I am able to work full time and find myself drawn to the kids that are put in front of me who are struggling with a lot of things out of their control and for maybe the first time in my 33 years of teaching, I can empathize more fully with them because I am dealing with the unknown too. My compassion has gone way up and my faith strengthened.

I am a distance running coach too. I had taken the stance that there was a goal line and the goal line was to the end all the treatments. When I hit that mark I thought I would feel something like relief or victory but I really didn’t. I fought with worry about the unknown future. God has really been showing me that the worrying was me trying to be in control of things I had no business trying to be in control of. My word, that has made a huge difference.

Sorry for the rambling, it is the middle of the night here, but I woke up and checked in to see what I could be praying for and your post came up. So thought I would post too.

Hang in there, this stage 4 cancer thing is tough. Know that people out there care about you and our praying for you.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
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
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

ScaredButGottaWin
Posts: 17
Joined: Sat Nov 18, 2017 5:53 am

Re: Hope vs reality

Postby ScaredButGottaWin » Fri Mar 13, 2020 6:07 pm

Thank you ❤️
Colonoscopy Nov ‘17
Peritoneal Mets discovered Dec ‘17 (signet ring cell)
FOLFOXIRI - Jan'18-April '18
HIPEC May '18 (NED!)
FOLFIRI June '18-April '19
Recurrence Jan '20 - peritoneal cavity


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