End of Life Question

Please feel free to read, share your thoughts, your stories and connect with others!
PEEJAY
Posts: 54
Joined: Thu Aug 27, 2015 2:28 am

End of Life Question

Postby PEEJAY » Fri Sep 04, 2015 12:19 pm

As my case is terminal, I've been doing research on the final stages of colon cancer. Websites I read say that the pain can be managed pretty well and pretty easily, but I've seen a lot of forum posts that say someone's last few days were really hard, especially if their heart was still healthy. Can anyone give me some insight as to why this is? I'd like to go out high and happy if at all possible.
Age 33
Stage 4 CC with 20+ mets to liver 1/20/2015
8 Rounds Folfoxiri feb - april 2015
Colon Resection 5/2015
Permanent Colostomy
Peritoneal Carcinoma found
Folfiri + Erbitux 6/2015 - 9/2015
Angiomapping for Y90 9/24/2015
Y90 Treatment 10/13/2015
Power port re-placing sched. 10/23/2015
Due back for chemo 10/29/2015 (right before trick or treating!!!)
11/26 Chemo not working
My colon cancer podcast "I'm Dying Here" in iTunes: https://itunes.apple.com/us/podcast/im- ... 1035722798

User avatar
BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: End of Life Question

Postby BrownBagger » Fri Sep 04, 2015 1:01 pm

Just guessing, but in the case of my dad, who had prostate cancer that spread to his lungs, his strong heart kept him alive beyond the point where his lungs basically gave out. He should have died when his lungs began to fail, but didn't.

I think you can go out high and happy. Modern hospice care is excellent, by all accounts, and they know a thing or two about making terminal patients comfortable and helping them transition to the Great Beyond.

As to being "terminal," I don't care what they tell me. I ain't giving up.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

Re: End of Life Question

Postby jillbugs4110 » Fri Sep 04, 2015 1:53 pm

I live in a right to die state which I will have in hand to use if needed. I will not suffer.
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.

User avatar
exaussie
Posts: 618
Joined: Sun Jan 19, 2014 1:19 am
Location: Silverton OR
Contact:

Re: End of Life Question

Postby exaussie » Fri Sep 04, 2015 2:53 pm

My son was young and healthy, his heart was in great shape. He had just morphine pump at the end and it took most of the pain away. He used cannabis eadables, but when he couldn't eat anymore morphine was enough.
That being said our motto throughout this ordeal was DON'T LIVE TO DIE, LIVE TO LIVE. Everyday could be the last we get so live fully, say what needs to be said, love deeply, laugh out loud, go out in nature cause this is a beautiful world!

Have a great weekend all!
DS 26 yrs old diagnosed 6/13 T3N2aM1b
Resection 6/13
6 rounds chemo folfax
12/13 Fissure
hernia surgery 12/13
5 months break
Maintenance chemo 3/14
Crazy growth. Liver failing. Folfox and vectibex 7-29-14
Chemo failure Hospice 8/26
Left us 8/28

PEEJAY
Posts: 54
Joined: Thu Aug 27, 2015 2:28 am

Re: End of Life Question

Postby PEEJAY » Fri Sep 04, 2015 3:06 pm

Thanks everyone. Jill, I live in a right to die state, too. I just moved here a couple of years ago so I guess sometimes I forget about that option. exaussie, I'm sorry about your son. It helps me to hear the story, though, so thanks.
Age 33
Stage 4 CC with 20+ mets to liver 1/20/2015
8 Rounds Folfoxiri feb - april 2015
Colon Resection 5/2015
Permanent Colostomy
Peritoneal Carcinoma found
Folfiri + Erbitux 6/2015 - 9/2015
Angiomapping for Y90 9/24/2015
Y90 Treatment 10/13/2015
Power port re-placing sched. 10/23/2015
Due back for chemo 10/29/2015 (right before trick or treating!!!)
11/26 Chemo not working
My colon cancer podcast "I'm Dying Here" in iTunes: https://itunes.apple.com/us/podcast/im- ... 1035722798

rickrobben
Posts: 31
Joined: Wed Jan 07, 2015 2:18 pm

Re: End of Life Question

Postby rickrobben » Fri Sep 04, 2015 6:27 pm

I agree with Eric. His one of the first post I read when I started this journey. I even bought a bike because of him. I have never met him. But, have a ton of respect for him.

June 2014 stage 3
6 rounds fu/ oxy complete response
LAR
6 mores rounds
June 1 2015 reversal
10 months clean.
June 13 2014. Stage 3 rectal
6 rounds Folfox chemo, oxilpilatin, with leucovorin and then Fluorazine in the bottle
11/14LAR complete response
Temp iliostomy
Folfox chemo, oxilpilatin, with leucovorin and then Fluorazine in the bottle
5/15 Reversal
9/1 blood and sigmoidoscopy clear

JDinNC
Posts: 771
Joined: Fri Jul 05, 2013 9:49 pm
Location: Murphy, N.C.

Re: End of Life Question

Postby JDinNC » Fri Sep 04, 2015 6:50 pm

PJ,

You are just at the start of your cancer journey that it pains me to read about your "end of life" question. I hope that you are fighting your cancer and that your question is out of pure curiosity. If you search, you will see there are a lot of Stage 4'ers on this board that have passed the five year mark.

Stay strong!!
61 y/o female @ DX...........
T3N0M1
6/13 DX- stage 4
Sigmoid colon cancer.
One met to lung
7/13 colon resection
8/13 lung resection
7/17 four years....NED
8/18 five years....NED
MELANOMA
63 y/o @ DX
6/15 stage 2a
7/15 surgery on arm
7/15 NED
4/16 recurrance
5/16 remove metastasis from back
5/16. Started immunotherapy
8/16 discontinue treatment
7/18...PET scan...NED

NateA
Posts: 115
Joined: Sun Aug 02, 2015 7:41 pm
Facebook Username: Nathan Drew Allen

Re: End of Life Question

Postby NateA » Fri Sep 04, 2015 8:10 pm

I'm stage 4 dx in July and just finishing up my second round d of folfoxiri and my take home 48 hour bag. Too many liver mets to count so prolly not gonna bother with cutting out colon tumor onc says. Feels heck of confident this chemo will make all the tiny liver mets disappear but I'll be a chemo for life maintenance kinda guy. I'll take that, always hope for the cure and Live to Live! Let's win this!
7/15 dx CC stage 4 with lots of liver mets CEA 208
KRAS Mutant G12V, MSS.
9/23 from folfoxiri to folfox and Xeloda. CEA 25
11/11/15 all liver markers in the zone, CEA 4.0, moving to Avastin/xeloda for now..tumors shrinking
01/13/16 Avastin/xeloda CEA 3.5
03/11/16 clean PET CEA 4.4

PEEJAY
Posts: 54
Joined: Thu Aug 27, 2015 2:28 am

Re: End of Life Question

Postby PEEJAY » Fri Sep 04, 2015 8:47 pm

Thanks so much, Rick.
JD, this forum has helped a ton. Weeks before I joined I was combing it and really noticing how many people have been able to fight for so long. Definitely an inspiration. I ask the end of life question out of curiosity, fear, anxiety, desire to gather information and personal experiences, etc, but I plan on being around for a good long while.
Age 33
Stage 4 CC with 20+ mets to liver 1/20/2015
8 Rounds Folfoxiri feb - april 2015
Colon Resection 5/2015
Permanent Colostomy
Peritoneal Carcinoma found
Folfiri + Erbitux 6/2015 - 9/2015
Angiomapping for Y90 9/24/2015
Y90 Treatment 10/13/2015
Power port re-placing sched. 10/23/2015
Due back for chemo 10/29/2015 (right before trick or treating!!!)
11/26 Chemo not working
My colon cancer podcast "I'm Dying Here" in iTunes: https://itunes.apple.com/us/podcast/im- ... 1035722798

mackswife
Posts: 263
Joined: Fri Aug 17, 2012 7:11 pm
Location: Atlanta, Ga.

Re: End of Life Question

Postby mackswife » Fri Sep 04, 2015 9:28 pm

PEEJAY - My DH passed away two weeks ago. He had extensive mets to his liver and peritoneum, and also had lymph node and lung mets. He opted to stop treatment the end of March and "work the bucket list" as folfox, folfiri, xeloda, erbitux, etc. had failed. As soon as he stopped treatment, he began feeling strong again (very strong heart and body, even at age 66). Anyway, we had 4 wonderful months, traveling to see our kids and grandkids (in Italy and another state across country). We spent time with friends, family and enjoying all the things he loved the most. Until about 4 weeks before he passed away, he used ibuprofen in the morning and oxycontin 10 mg at night for pain control. He appetite had been good, and he maintained his weight until the end of July. At that time, he began feeling weaker and would nap during the day. Appetite declined. He began taking pain medication on a regular basis although he never required high doses of anything. Lost interest in food, and realized it was time to call in hospice. 10 days prior to his death, he was still climbing the stairs to get to our bedroom, and trying to "tie up loose ends" to make life easier for me. He called an electrician and plumber to walk through the house and make sure everything was in good shape. 5 days before he died, he was very weak but still ambulatory and became a little confused. We called our family members to come. Monday evening he reluctantly laid down in a hospital bed. On Tuesday, he stopped eating or drinking and was barely responsive. His breathing was even, non-labored and loud. We had oxygen available, but he never needed it. I administered liquid morphine with an eyedropper to prevent pain. On Thursday evening, his breathing slowed down, his heart-rate slowed down, and he passed away that evening. It was hard on everyone who loved him to see him go. When I think of the suffering that he endured during his cancer journey, I think of the side effects of chemo....not the last 5 months.

This is just our experience. My husband knew he wanted to die at home....no needles, no hospitals. I'm grateful he made these choices and shared them with me as soon as we knew his condition was terminal. Please God, let there soon be a cure for his horrible disease!

Pattie
Last edited by mackswife on Tue Sep 08, 2015 9:56 pm, edited 1 time in total.
Husband IIIC;
7/12 - resection; 12 rounds folfox
CT/PET scans 4/13, 9/13 - NED
CT scan 3/14 - liver/LN mets
5/2/14- failed liver resection - peri. mets.
6 rounds of iri/avastin
8/26/14 - failed liver resect/HIPEC. dse. progression
9/14 - 3/15 - progression on chemo
3/23/15 - treatment stopped; working the bucket list

PEEJAY
Posts: 54
Joined: Thu Aug 27, 2015 2:28 am

Re: End of Life Question

Postby PEEJAY » Fri Sep 04, 2015 9:38 pm

Pattie,

Thanks for that. It sounds like if I can try to be as brave as your husband, then being with my own family will be enough to get me through it. I know that my experience won't be exactly the same, but thank you for sharing one that helps me believe I can die with dignity and some comfort if it comes to that. I look forward to living for a long time but, man, this fear. This idea of real-life death... I was always a little cocky about the good health I always managed to have, so this has all been a pretty crazy shock. Thank you again.
Age 33
Stage 4 CC with 20+ mets to liver 1/20/2015
8 Rounds Folfoxiri feb - april 2015
Colon Resection 5/2015
Permanent Colostomy
Peritoneal Carcinoma found
Folfiri + Erbitux 6/2015 - 9/2015
Angiomapping for Y90 9/24/2015
Y90 Treatment 10/13/2015
Power port re-placing sched. 10/23/2015
Due back for chemo 10/29/2015 (right before trick or treating!!!)
11/26 Chemo not working
My colon cancer podcast "I'm Dying Here" in iTunes: https://itunes.apple.com/us/podcast/im- ... 1035722798

jillbugs4110
Posts: 266
Joined: Thu Jul 31, 2014 3:36 pm

Re: End of Life Question

Postby jillbugs4110 » Fri Sep 04, 2015 10:02 pm

PEEJAY wrote:Thanks everyone. Jill, I live in a right to die state, too. I just moved here a couple of years ago so I guess sometimes I forget about that option. exaussie, I'm sorry about your son. It helps me to hear the story, though, so thanks.



Are you an oregonian?
Live One Day At A Time
I Abandon myself to God
46 6 yo.....9yo...
stage 1V liver mets :-(
my one prayer to got to sustain me to raise my two babies this is my only wish then take me out if needed.

User avatar
chixter
Posts: 121
Joined: Wed Jun 25, 2014 5:31 pm

Re: End of Life Question

Postby chixter » Fri Sep 04, 2015 10:15 pm

Peejay, you will be fine. If it comes down to it Hospice is a great resource. Like Eric said live to live and part of that is not sweating over the end of a ,terminal" illness. Keep yourself strong as possible, don't fear. Do the things you want an can do....talk about the other things. Reflect on life and savor the love of those who surround you. Most importantly BE YOU...take no prisoners when it comes to expressing how you feel, where your mind is at. Angels go with you, young man.
ImageFather/Caregiver to beautiful 25 y/o daughter with mCRC Stg 4

rickrobben
Posts: 31
Joined: Wed Jan 07, 2015 2:18 pm

Re: End of Life Question

Postby rickrobben » Fri Sep 04, 2015 11:44 pm

We need everyone around a long time. I need all all of you. Have a great three day weekend. Thinking of all of you.

Onward
June 13 2014. Stage 3 rectal
6 rounds Folfox chemo, oxilpilatin, with leucovorin and then Fluorazine in the bottle
11/14LAR complete response
Temp iliostomy
Folfox chemo, oxilpilatin, with leucovorin and then Fluorazine in the bottle
5/15 Reversal
9/1 blood and sigmoidoscopy clear

PEEJAY
Posts: 54
Joined: Thu Aug 27, 2015 2:28 am

Re: End of Life Question

Postby PEEJAY » Fri Sep 04, 2015 11:59 pm

Jill, yes, I live right outside of Portland. I have seen there is a documentary on Netflix called How To Die In Oregon but I've been too nervous to watch it.
Age 33
Stage 4 CC with 20+ mets to liver 1/20/2015
8 Rounds Folfoxiri feb - april 2015
Colon Resection 5/2015
Permanent Colostomy
Peritoneal Carcinoma found
Folfiri + Erbitux 6/2015 - 9/2015
Angiomapping for Y90 9/24/2015
Y90 Treatment 10/13/2015
Power port re-placing sched. 10/23/2015
Due back for chemo 10/29/2015 (right before trick or treating!!!)
11/26 Chemo not working
My colon cancer podcast "I'm Dying Here" in iTunes: https://itunes.apple.com/us/podcast/im- ... 1035722798


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



Who is online

Users browsing this forum: No registered users and 7 guests