How to Choose Between Quality Versus Quantity of Life

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mstults
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Joined: Fri Nov 30, 2012 11:23 am

Re: How to Choose Between Quality Versus Quantity of Life

Postby mstults » Wed Jun 03, 2015 2:44 pm

kennytwisted wrote:
Mike what did they figure out on your Cea rise?


Kenny, it was 373 on Feb 18 when I started Vectibix. It was 225 on March 31. I had a draw a week ago today. I'm checking the portal every 2 hours it seems. Had a CT last week that showed some growth in liver mets. Not a lot but worrisome. Had colonoscopy last week and GI says I have colitis. So I'm now hoping the rise in CEA is related to the inflammation from that. I go to the GI Monday to get results of tests and I assume to find out how we will deal with the colitis. I have been having hip pain so bad I can barely walk, even with a walker for 5 weeks. I'm also hoping the colitis is the cause of that. Then I see oncologist Tuesday. He wanted me to see GI before seeing him again. I have many questions for both.
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

peanut_8
Posts: 2340
Joined: Sun May 25, 2014 1:31 pm

Re: How to Choose Between Quality Versus Quantity of Life

Postby peanut_8 » Wed Jun 03, 2015 2:47 pm

Deb, that was such a touching story about Tom. I really admire you for taking the time to share this with us, and also for the terrible decision you had to make, and the strength and compassion you showed by making it. It takes a lot to make me cry, but this story did. Best of everything to you.
peamnut
female, diagnosed Jan 14, RC stage 2a, age 56
MSS
April 14, 28 chemo/rad with Xeloda
June 14 adjuvant Xeloda 6 rounds
currently NED

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Frenchie's Wife
Posts: 959
Joined: Sat May 04, 2013 1:01 pm
Location: Alberta, Canada

Re: How to Choose Between Quality Versus Quantity of Life

Postby Frenchie's Wife » Wed Jun 03, 2015 4:42 pm

Some people I have talked too in private have reluctantly admitted that they stayed
on chemo not for themselves but to prolong for a time the moment of grief that their relatives would face when they passed. We get so used to putting others first sometimes
that this attitude lingers on until we die.

I had to make a conscious decision to put myself first. My family wanted me to continue
treatments as well. Some family members even thought I was selfish.

I never tried to sway anyone either way. I have, however, enlightened a few as to why
they were still doing chemo when it was obvious that further treatment was pointless.
It made it easier for them to make the final decision.
Caregiver to DH 59 yr, male, Stage IV at Dx
Dx Sept 2009
Liver,bladder mets, 5 surgeries
Lots of chemo
Inoperable lung mets nov 2013
Stopped all treatments in February 2014 due to QOL issues
I am in God's hands now !!
Feb 2015 - too many new mets to count !
At peace July 9, 2017

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Voxx66
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Facebook Username: Michael Void Ward

Re: How to Choose Between Quality Versus Quantity of Life

Postby Voxx66 » Wed Jun 03, 2015 6:13 pm

I want to be clear about a few things: my decision to suspend treatment is related specifically to the situation I am in. I am NOT convinced any of the current chemo being offered will prolong my life. I KNOW it will impact my quality of life. My main issue is the simultaneous emergence of both lung and peritoneal mets. This reduces options and complicates things. Surgeons don't seem interested in my case and maybe they are right. None of the chemos being offered have much effect on peritoneal mets which is by far the most dangerous of my conditions. Why bother pursuing pipe dreams? I feel sooo much better now with the port out and off chemo than I did before - especially than when I was on FOLFIRI. If a new option comes around (TAS-102?) I will likely try it if it makes sense. If not? I am wagering I will live just as long this way and with a much better quality of life.

As I have mentioned before and as some of you know, I am also influenced by the death of my father. He did chemo and trials well after they made no sense. He made himself miserable and unable to do the things he wanted to at the end of his life. And then he died from a side effect of chemotherapy. I am not so much of a fool that I didn't pay attention to that.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

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Voxx66
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Facebook Username: Michael Void Ward

Re: How to Choose Between Quality Versus Quantity of Life

Postby Voxx66 » Wed Jun 03, 2015 6:14 pm

Also - I am glad at least a couple of people enjoyed my Asclepius reference ha.
DX and resect 10/2012 age 46
Stage IIa CRC
liver mets both lobes 8/2013
CEA 28
FOLFOX + Avastin 8/26/13 3 rounds
Folfox only 3 rds + rd 8
platelets low round 7,9,10 5FU only
1/14 CEA 1.0 y90
5fu
10/14 mets lung and peri
1/15 Folfiri

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: How to Choose Between Quality Versus Quantity of Life

Postby KWT » Wed Jun 03, 2015 6:44 pm

mstults wrote:
kennytwisted wrote:
Mike what did they figure out on your Cea rise?


Kenny, it was 373 on Feb 18 when I started Vectibix. It was 225 on March 31. I had a draw a week ago today. I'm checking the portal every 2 hours it seems. Had a CT last week that showed some growth in liver mets. Not a lot but worrisome. Had colonoscopy last week and GI says I have colitis. So I'm now hoping the rise in CEA is related to the inflammation from that. I go to the GI Monday to get results of tests and I assume to find out how we will deal with the colitis. I have been having hip pain so bad I can barely walk, even with a walker for 5 weeks. I'm also hoping the colitis is the cause of that. Then I see oncologist Tuesday. He wanted me to see GI before seeing him again. I have many questions for both.


Hopefully it is the colitis that would be a much better problem. Hopefully they can get the hip pain figured out as well. I'm wondering how many folfiri said it will take to get mine down

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mstults
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Re: How to Choose Between Quality Versus Quantity of Life

Postby mstults » Wed Jun 03, 2015 9:24 pm

I was on Irinotecan for a year but had to stop for 2 1/2 months during that time because I had a Staph infection. This rise in CEA could be a delayed response to that break. I pushed onc to get me off the Irinotecan because of diarrhea. Now its possible the diarrhea was the colitis. Lomotil and Immodium do nothing for the diarrhea I've been having. I wonder if you can go back on it after stopping. How are the side effects Kenny?
Mike
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: How to Choose Between Quality Versus Quantity of Life

Postby KWT » Wed Jun 03, 2015 9:30 pm

Mike, the first round was pretty easy just really tired for two or three days and mild nausea. Round two I puked three times, and this mouth sore is by far the worst SE so far. And that was with an extra week between. No diarrhea yet.

The onc told me you could take long breaks from iri. I don't know what his idea of long is but I'm sure it's different than ours.

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: How to Choose Between Quality Versus Quantity of Life

Postby skypup » Wed Jun 03, 2015 9:48 pm

mstults wrote:I pushed onc to get me off the Irinotecan because of diarrhea. ... I wonder if you can go back on it after stopping.

Mike, I've gone on and off about five times. Fortunately, it works each time I go back on it so far.

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Maia
Posts: 2443
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Re: How to Choose Between Quality Versus Quantity of Life

Postby Maia » Wed Jun 03, 2015 10:12 pm

(((Julie YW)))

((((Jaynee)))

(((Deb)))

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mstults
Posts: 1327
Joined: Fri Nov 30, 2012 11:23 am

Re: How to Choose Between Quality Versus Quantity of Life

Postby mstults » Wed Jun 03, 2015 11:24 pm

Glad you've had such good results Skypup. Kenny, Irinotecan is the only chemo that's made me even queasy. I took a Zofran occasional but never threw up. I've been lucky in that respect. It didn't really even make me tired.
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

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Maggie Nell
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Location: Central Highlands, Victoria, Oz

Re: How to Choose Between Quality Versus Quantity of Life

Postby Maggie Nell » Mon Aug 31, 2015 12:45 pm

Voxx66 wrote:My perspective is different as I have no wife or children. For me - quality of life is key. I have currently stopped treatment for exactly that reason and will only restart it if/when a good option presents itself. Right now I am at the stage of wanting people not to swing chickens but to keep them so they can send them to Asclepius on my behalf ha. (This refers to the death of Socrates as related by Plato in his Phaedo just in case anyone is confused)



THE DEATH SCENE FROM THE PHAEDO - Plato

When he had finished speaking, Crito said: “Well, Socrates, do you wish to leave any directions with us .... anything we can do to serve you?”

“What I always say, Crito,” he replied, “nothing new. If you take care of yourselves you will serve me and mine and yourselves, whatever you do, even if you make no promises now; but if you neglect yourselves and are not willing to live following step by step, as it were, in the path marked out by our present and past discussions, you will accomplish nothing, no matter how much or how eagerly you promise at present.”
“We will certainly try hard to do as you say,” he replied. “But how shall we bury you?”

“However you please,” he replied, “if you can catch me and I do not get away from you.”


.........and these were his last words – “Crito, we owe a cock to Aesculapius. Pay it and do not neglect it.”

“That,” said Crito, “shall be done; ....

Such was the end, of our friend, who was, as we may say, of all those of his time whom we have known, the best and wisest and most righteous man.

Sourced http://homepages.gac.edu/~arosenth/265/ ... _Scene.pdf



Please review the following if you plan to ship poultry.

Currently, certain disease-free adult birds can be accepted for domestic shipment when mailed in compliance with applicable regulations. Mailability is currently restricted to adult chickens, turkeys, guinea fowl, doves, pigeons, pheasants, partridges, quail ducks, geese, and swans. The Postal Service is proposing to expand its mailing standards to allow for the shipment of any disease-free live bird, weighing no more than 25 pounds, which can be legally transported. If this proposal is adopted, mailers must be compliant with all applicable governmental laws and regulations, including the Lacey Act, the Endangered Species Act (ESA), and regulations of the U.S. Department of Agriculture, U.S. Fish and Wildlife Service, and any state, municipal or local ordinances. Mailings must also be compliant with the guidelines provided in USPS Publication 14, Prohibitions and Restrictions on Mailing Animals, Plants, and Related Matter, Chapter 5.


New Mailing Standards for Live Animals and Special Handling
http://www.gpo.gov/fdsys/pkg/FR-2013-04 ... -09603.htm


Vale Voxx66
put the kettle on.
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency R. hemicolectomy
for ileo-colic intussusception (ouchies)
Lymph nodes: 0/22
T3 N0 MX
Pending colonoscopy 23 March 2021
Unexpected severe allergic reaction to the prep...big WTF!?
To be rescheduled...


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