How do you decide to stop treatment?

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Ashlee H.
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How do you decide to stop treatment?

Postby Ashlee H. » Tue Aug 28, 2012 1:00 pm

WARNING: If you are a person that believes everything will be fine, thinks you should continue to fight until the end, loves to shout out "Rah Rah", etc., You should stop reading now. This thread isn't for you and will only make you upset.

For awhile now, I've thought we should have an on-going thread for those of us who know we will die from this disease. In the past two weeks, I've lost an addition three people to colon cancer - One in their 30's, one in their 40's, and one in their 50's. They all had Hospice care at the end and had peaceful deaths. All gave it their all and only stopped when their doctors said it was time for Hospice. If they had stopped a little sooner, would they have been able to enjoy their last 6-12 months? It seems when we start the downhill decline, most are gone within 6 weeks or less.

When do we decide to stop treatment? I've asked myself that so many times. I know a cure is out the window for me, and once this mix stops working, I'd probably have a year left - which I plan to enjoy. For me, I've decided if I get brain mets I'll stop. I just haven't seen anyone with CC who treated their brain mets that got better. In fact, the treatment (usually cyberknife) just seems to make things worse with memory issues. Jules10100 became partially paralyzed after her cyberknife. And for the first time in almost 5 years, she lost her hair. Others have treatment that just seems to cause horrible pain. I haven't had radiation yet, but doubt I'd go that route - just seems to do more damage once you reach this point of the disease.

I know some of you have made your decision to stop treatment, and are doing pretty well. My intent of starting this thread is so we can discuss our thought processes without others trying to encourage us to continue with treatment when we know at best it will only give us a few more months - months that may be very unpleasant both physically and financially. We are always free to change our minds and try one of the new drugs. But there just comes a time, and it will be different for all of us, when treatment just no longer makes sense.

I miss the comments from Gaelen. She knew so much about this disease and continued to teach us as she was dying. She was honest about what happens and did not sugar coat things. That's what I would like this thread to be - a Gaelen type of discussion without people getting upset that we are being mean and giving up hope. What we are dealing with is just reality - our reality. I've learned a lot from people here, and I hope to learn how to leave this world without cancer taking everything from me.

It would be great insight for us to hear from spouses or friends who lost their loved one due to the cancer. Do they wish they would have done anything differently? I know when I helped a friend die, the one thing I would have changed would be to continue to find a way to let the dying communicate through pointing at pictures or some other means. At the end, they get so weak, people can't hear what is being said, so they just stop talking. I've told my friends, when I get to that point, if you can't understand what I'm saying, don't pretend you do. Let me know and try to figure out a way for me to get my point across - lifting a finger, eye, ring a bell - something. Don't allow me to stop participating in what life I have left because my standard way of communication is no longer working. I've always made my friends promise to have music in my room. If the music bothers people, then get me a nice comfty pair of headphones. Music calms me and takes me to places where cancer does not live.

Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga

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Re: How do you decide to stop treatment?

Postby jacekica » Tue Aug 28, 2012 1:53 pm

Although I am still not in the same boat I very deeply thought about it at the beginning of my journey with cancer. I am always optimistic, but optimism is not stupidity, there come time when we become aware that treatment no longer give us a chance to survive. It is not about few more months, at the one point more important is quality of life, if we see there is no improvement and chemo is poison which ruins not only cancer but also healthy cells, than it is time to stop, do something what we plann to do in such periods, something wwhat can brings us some hapiness or peace.
Considering brain mets - I hope from the bottom of my soul and heart we will be without them - my friend (metastatic melanoma) has gone after brain mets and she gave it a chance and undergone 3 operation - very bad decision, it was real nightmare, to scary for remeber, so I am sure in that case I will be one who will say - no more, please. I hope for all of us that we can go with some dignity - I see in USA hospice care is well organised, here in Croatia it is not existant so it i seven more scary for us here.
It is verz serious thread, it is not depressive, it is part of our life, it is OK to give someone support and lift his sirit - but not when the limit of endurance is riched and impossibility of improvement is certain.
I think we all for oureselves know when this time comes - I remember reading Gaelen posts and preparation for hospice care after decision to stop treatmant which no longer works for her. So we all are capable of doing same decision when time comes, but also I am sure that we had to write instructions for this if in short time comes to deteriration and we are not able to say our will and decision.
And th eimportant thing is to find care in these last dazs who will treat us as real person with feelings and needs, and try to do in this circumstances things we like end enjoy. For mz friend it was talk about her daughter - to asure her I will be alwazs there for her, and todaz it is a beautiful women with good husband and 2 daugters. I am alone but I will certainly leave instructions for care in this last days, hope I will find some peole who will inherit my little apartment (for our circumstances it is huge help in life). As I saide - the most important is to be treated as human being till the last breathe, and praying is also verz important to me, I hope someone will read me a Bible also.
I am sorry for my english, I think all sound rude and inpolite - but it is not my intension, I try to explain things the best I can)
Dx 2/11
surgery 5/11, T2N0MX, G2, SRC rectal ca, 22 cm removed
CT- numerous mets in abdomen - LN, 2 big ones on pancreas, one penetrated right urether. Surgery, they just take samples for PHD, 6 roundds 5FU, refuse further chemos

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Re: How do you decide to stop treatment?

Postby KarMel » Tue Aug 28, 2012 2:04 pm

I am with you all the way, Ashlee.

I have been off chemo for a month. This past two weeks, countless people have told me how great I look. Well, I believe it is because I have no poison running thru my veins. I know my cancer is progressing, and probably will continue to, no matter what.
I brought this up with my oncologist, and I told him, do I really want to go thru more chemo misery for 1 or 2 more months of survival? While he acknowledged the validity of my point, he also said "we didn't get this far by being quitters."

I left the discussion at that, but felt a bit perturbed at the word "quitter". No, I am not a quitter, but he truly can't have any idea how hard it is to cope with feeling like crap one third of your life. He sees me working and feeling mostly good and therefore everything is hunky dory.

Old joke...why do they put nails in coffins? To keep the oncologists out. :wink:

And that's just the doc. Dealing with family is a complete other set of problems.

Thanks for bringing this up. I really want someone to tell me when to quit work, blow all the money in my retirement account, and when I am going to start circling the drain quickly. It's a slow circle right now, and I am grateful for that.

Still riding the roller coaster...
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"

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Re: How do you decide to stop treatment?

Postby kbrown2b » Tue Aug 28, 2012 2:07 pm

I have spent all morning reading sarah W's carebridge pages. It made me so sad, but at the same time, I saw myself in her. I think about this all the time!! This is my third freaking time doing chemo.. really?? I am a realist, I know that I am not going to win this effing disease, but I don't know when i will stop and just say "enough is enough".. Personally, I still have 10 good days out of 14 to laugh and enjoy my babies, and to me, that's enough to keep going. I agree with you about the brain mets.. scarey shit.

I too would love to hear from caregivers, spouses, etc, as well..

Love to you

text me anytime..

Kelley 38
mommy to Dalton(14),Raegan (11),and Ella (5)
stage IIIC 5/26/10
Xelox 6/30
ovarian mass 12/16
moved to Stage III.5
Folfiri /erb 1/25/11
hyster./abcess /temp illeo 9/11
reversal 11/11
back in abdomen Folfox and Avastin 8/12

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Re: How do you decide to stop treatment?

Postby annalexandria » Tue Aug 28, 2012 2:09 pm

I think it's an important thing to contemplate, especially for those of us with advanced cancer, but really for anyone facing a cancer diagnosis (as we all know, things can change overnight on this journey). I've considered this issue, and been heavily influenced by my experience with my sister, who died of cancer at the age of 44. She only lived a year after diagnosis, and spent every minute of that year trying every chemo possible, without success. She was in treatment, and sick as a dog, almost to the very end. She only accepted hospice care about a week before she fact, it was only at that point that she accepted that she might be dying. Prior to that, there was no discussion of end-of-life issues, so after she died (and it was a very peaceful death at home), my BIL and nephew were left struggling, trying to figure out what she might have wanted in terms of her memorial, etc. I need to be clear here...I'm not judging her, or anyone else, who chooses this route. She wanted to live desperately, and felt she had to try every single possibility, even when it went against the advice of her doctors. But for me, that's not how I want to go. I've already done two unsuccessful chemos, so unless something new comes up for my highly unusual tumor type, something that actually extends life by a significant amount, I won't go that route again. As long as I can do surgery, I will continue to do that...I've found that I can recover from them pretty well, and they have given me significant time. And I want time, LOTS of it, but it has to be of a reasonable quality. Once I start getting too sick to enjoy at least some aspects of life, I'm going to be ready to make a (hopefully) graceful exit. Thanks for bringing up an important topic~Ann Alexandria
Mom, librarian
Dx age 43, Sept. '09, Stage IV Carcinosarcoma of the colon
5 surgeries, 2009-2011:
colon/sm. bowel res., node removal, peritoneum, hysterectomy
FOLFOX/Avastin Feb.'10-Aug '10
Carbo-Taxol Dec. '10-Feb. 2011
NED since Dec. 2011.

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Re: How do you decide to stop treatment?

Postby RixInPhx » Tue Aug 28, 2012 2:17 pm

Thanks for starting the thread!

My own 'final' issues will probably surface in the next year, so I have many thoughts on the topic.
Too many to address now, so I'll post a little essay here shortly.

Take care, Rick
M 61, Dx 6/10 CRC st 4, unknown primary CEA 843
2 kg peritoneal mass, met to skull; no surgery
Various regimens of all CRC chemo drugs
Mets to lung 8/11 CEA 135
Folfiri/Erb/Ava 12/11 CEA 320
No progression 5/12 CEA 192

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Re: How do you decide to stop treatment?

Postby WorriedWife » Tue Aug 28, 2012 2:38 pm

Dear Ashlee,

I do not have personal experience in chemo or end of life decisions with cancer, but I saw your post and want to tell you that I will pray for you in making the right decision, and that being in what is right for you.

A couple of weeks ago in the oncologist's office I met a man and wife. I was just sitting there starting at the wall, waiting for my hubby to get his PET scan (still in shock that all this is even happening to us) and they started talking to me. The hubby went on to tell me that he was dx stage IV cancer of the tongue. He had surgery to remove the cancer and also a third of his tongue removed. He was telling me that after the surgery they wanted him to do radiation. He refused and told them that he would rather have ONE good year as opposed to a few horrible years, getting burned from radiation, pain and suffering, etc. And then he said to me " Here I am, FOUR years later!!" He was smiling and kind of chuckling..You could just tell that they were such a happy couple, living their life the way they wanted to. They are both 70 yrs old they told me and the wife asked me my hubby's name and asked if she could add him in her prayer circle. They were soooo super sweet. So, you just never know what the future holds ....they told him originally that he had about 6 months to a yr.

I have noticed that so many people do chemo and the cancers comes back, they do more chemo and the cancer comes back, on and on and on. Not that I have seen it all, but from what I personally have noticed, it seems to be about 90% of the time or more. it makes me SO SO sad for everyone. :( :( I guess I am learning that chemo is not really a cure, but more a way to prolong someone's life. I know there are people too, who have done chemo and the cancer does not come back...but then again...was it really from the chemo? or would it not have come back anyway? Guess that is one thing we'll never know...and I better not try to turn this post into a - is chemo good for you post..LOL ...sorry!

Ashlee, I hope you get a lot of support with whichever decision you make. You are such a brave, smart, sweet woman! I have always and forever believed in miracles!!!! A person just does not know what the future may hold. I am praying so hard for you in your decision making process as well and your health. Hugggs
CC Stg. 2b
Dx 6/12
surgery & reconnect
opted out Folfox
Pet Scan Aug NED
abscess/fistula for over a year
ongoing Dec 2013
Praying for each and every one of you


Re: How do you decide to stop treatment?

Postby lifeisajourney » Tue Aug 28, 2012 3:03 pm

Thanks for starting thread because I have made the decision and it is lonely beause most continue to fight on...I was dx 12/08 took folfox thru 7 had an acute reaction, so stopped 5/09. I was very strong going into chemo, but it left me half what I was, but I was ned....till 3/11. mets to liver. Tried resection at nci hospital, failed as liver was not that point 6/1/11 I chose no chemo....I thank goodness have my husband as a decision was based on quality of life, my age-68 and felt I wanted to die from cancer not chemo which I felt would have happened...none of us know if we have made the right decision, but it is my decision.....and it has been tough at times, but I had to believe I was right since the onc said chemo would give me maybe 6 mos, but I knew I would be paying dearly with chemo for a lot of that time...I am still here 15 mos later with cea inching up and tumor growing, but I believe I made the right decison for me......I sometimes cannot understand decision to go on. But I believe age has something to do with making it easier to decide..I Am interested in other people decisions to stop....I told my primary I only fear pain and just started to get some and it could be a pinched nerve, not the end as you start think about..bless all your choices, not easy, but I just don't have faith in chemo/radiation.....we do juice....thinking of all on this journey. Pat

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Re: How do you decide to stop treatment?

Postby NWgirl » Tue Aug 28, 2012 3:51 pm

I think you'll get as many comments and opinions as you do posters on this subject. I'm so glad you brought it up. When I started Vectibux a few months back - this being one of the few drugs we hadn't tried, I seriously thought about "the talk" with my oncologist - simply stating, "I don't want to do this anymore". But then he gave me a chemo break, switched me over to Erbitux, worked on the rash thing - and I'm back on the hamster wheel. It seems every time I think I can't do it any longer, something changes, and I find I can try a little longer. I don't know when I'll know it's time, but I hope and trust that I will. I think there are many situations in life, this being one of them, that you simply don't know what you will decide or when until you find yourself THERE.

There simply aren't any right or wrong answers or decisions; you just have to follow your heart. I know for me, the decision - when I've thought okay, this is it - I'm quitting; has been extremely difficult. I've never gotten there yet, but I thought I was close a couple of times.

My oncologist and I have a very good doctor/patient relationship. He can practically walk into the room - look at me - and know when something is wrong. He's amazing. And so far he's always had a rabbit to pull out of his hat. How long that will last, I don't know.

Thanks for starting the thread, I'm interested in all replies.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
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Re: How do you decide to stop treatment?

Postby Laurettas » Wed Aug 29, 2012 12:40 am

Thank you so much, Ashlee, for starting this thread. This has been, it seems to me, to be an almost taboo subject on most cancer sites and I think that is too bad.

For those with late stage cancer, this is something that needs to be thought about. My husband and I were just discussing the brain met possibility. He had an MRI today because of some weird symptoms he was having. We are thinking it was from some pain killers he took for a day or two but wanted to be sure.

If all the possible chemos stop working, then this is something that needs to be discussed. Or if the chemo becomes too debilitating.

From the beginning, my hope for my husband has been that he can have some time before he dies to feel kind of OK. But how to determine that is difficult because the cancer will start causing problems as well at some point.

It would be very interesting to get insights from those who have traveled this path already. I hope some caregivers for those who have passed on will share with us.
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace

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Re: How do you decide to stop treatment?

Postby aussielones » Wed Aug 29, 2012 1:21 am

Good topic Ashlee! I've been mulling over this topic in my head since last Wednesday, when I was told my third line of treatment wasn't working. I've had a great week! Can you believe it? I've had good talks with my onc, my parents, my priest and even with myself- I'm expecting the best but planning for the worst.

I've learnt over time to take each day as it onc is always telling me, Ilona if you're feeling good today, fair chance you'll be ok tomorrow. And that's how we'll play it. One step at a time.

BUT I have still got the regorefinib trial, and if that doesn't work (even though I am hoping it will kick my cancers ass!) I will stop treatment and keep on with my natural stuff. Erbitux has been discussed and I don't want it. I'm KRAS mutant, and to me, (yes I am completely vain) but I don't want the rash. There is a time where you just say no more chemo. It's not quitting, it's about living the best way at the end of your life.

The way I see it, when I die, I will go to heaven and I will have no cancer. No matter what, I win. If I live, well the cancer is not killing me and if I die, then the cancer dies with me. Either way, I win. At the moment I am more sorry for my mum and my dad, especially my dad. He is not coping. I feel so bad I wish I could just make him happy again. He cried in public this week when I addressed a rally (about healthcare, long story) and I spoke about dying.

Damn it to hell, I HATE CANCER!!
Dx 24/9/10
Cecum, liver, LN, lungs
Sg IV C.C inoperable
Folfiri, Xeloda ,FOLFOX. More FOLFIRI
Regorafinib nearly killed me. But I'm still alive! LOVE BEATS CANCER

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Re: How do you decide to stop treatment?

Postby abackhou » Wed Aug 29, 2012 2:22 am

I would like to share my journey with you.

A little brief background information is as follows which applies to me only and I do not wish to influence anyone with their mCRC treatment. This information is provided purely for your information and comparison purposes only.

After I was diagnosed with near total bowel obstruction Stage 4 mCRC Liver/Lung Mets in April 2009, I immediately took early retirement to treat the CRC and recover from the colon resection which was undertaken on 01 May 2009, (due to metastasis no other surgery was contemplated). During the period from May 2009 to Feb 2011 - received Oxilplatin and Xeloda ( 8 tabs per day) for 7 months, followed by Avastin and Xeloda (6 tabs per day) for a further 3 months and Erbitux on its own for 3 months. Had regular CT scans every 3 months from Apr 2009 up to May 2012. I want to believe I had the best Medical Oncologist in this state, therefore seeking a second opinion was never entertained.

My CEA levels which were tested every month, have always slowly increased over 41 months (initial was 7 now 247) but still had very little other symptoms dealing with CRC. I stopped my conventional chemotherapy treatment around June 2010 when the disease was stable and liver tumour had nearly disappeared, multiple lung nodules had shrunk to around 10 mm sizes. You are probably thinking "Why did I stop conventional treatment?" well I was experiencing cardiac issues which was partly attributed to the Avastin and I wanted to have Quality time and no stress for the rest of my days. The heart issue has now (Jun 12) been finally resolved thank goodness, it's bad enough dealing with the mCRC disease without having heart problems.

In April 2011, I had secondary liver,lung and pancreas disease progression and I decided to have 'quality time' rather than experiencing chemo effects up to my passing. I am now 57 and I do believe being relatively fit & active and mentally strong has played an important part in my survival to this date. Now I am under early Hospice Care (since May 2012) because I wanted to have these arrangements in place now to assist my wife (my carer) deal with pain and other 'end of life' issues. The Hospice nurse comes to our house once every 2 weeks to check on me and see how I am feeling. At present I feel really good and still doing low physical jobs around the house. Some days I have left collarbone pain & swelling, fatigued and nauseous, night (cancer) sweats but still wake up feeling pretty good. I feel really great since ceasing chemotherapy in early 2010.

I eat what I like, especially fresh FRUIT and smoothies (2-3 times per day), I have strong tea with 1 sugar, eat very dark chocolate every night, take 1 aspirin per day, no other special diet requirements except limit meat intake, no vitamins or supplements. My goals are now to make it to the 5 year mark.

Best regards to everyone with your plans, health and happiness.

mCRC Stage IV
Apr 2009:,Mets Lymph Nodes, Liver, And lungs
Colon Resection 2009
Not candidate for any further resections - metastatic
Chemo 2009 - 2012
Bone/Pancreas mets Oct 2012
Palliative Symptom Management
Hospice care since April

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Re: How do you decide to stop treatment?

Postby pollo65 » Wed Aug 29, 2012 6:35 am

Good topic because I think it is never far from most (at least stage 4)minds. I have been out of chemo (my decision) for 2 months and I have new aches and pains, so I surmise that the buggers are growing. I have been waiting for a call from Stanford to see if they have anything NEW to offer in the way of treatment---but I wrestle every day with when is enough, enough. When I after 3.5 years I feel 30 years older I wonder. I just don't know Ashlee, like you I wish Gaelen was around for a little more guidance. I love life but this definitely is not the same life I had. Some days I CANNOTT remember what I felt like before diagnosis. I gave my notice at work that I am retiring---and my work has been my life. Just don't know and I don't know how to deal with my family when I finally make the decision---another painful step in this journey.
pollo 65
CC 1/6/09
r. hemi-colectomy 1/7/09
32Ln biopsied, 28 positive
met to aorta
chemo 12 rounds
done 9/09 3 scans clear
1/11 1 met to aorta
micro cluster to peritoneum
4/11 / 9/11 scan clear
4/12 scan clear
10/12 scan clear
chemo break

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Re: How do you decide to stop treatment?

Postby Beatrice » Wed Aug 29, 2012 8:40 am

Hi Ashlee,
when Richard was first diagnosed with his third recurrence( inoperable)
I searched the net and one of the articles that changed my life
was " surfingon''s booklet in which she describes her husband's colon cancer
( "Shedding the light on the Cancer Journey" by Rachel Reeves)
It was only available for a kindle edition and was the only reason
I bought a kindle.
"surfingon" is her sign on here and her husband passed away a few years back.
She is a very insightful woman who also worked as hospice worker and
shared her experiences and some times still
check's in here on the forum. I do not know how to contact her--may be you know how- but
I am sure that she could provide a useful opinion on this subject.

I wish you strength and courage and peace.
caregiver to Richard ( stg IV)
1993 CC,, resect.,chemo ,rad
NED -> Dec 2008
2009 bladder met, resect, Xel
NED -> Nov 2011
met lung( inop.)
Folfox + Ava Jan -Jul 12,
Sep12 Avastin-met stable
Apr 13: progession lung
Jun 13 : progression

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Re: How do you decide to stop treatment?

Postby John72 » Wed Aug 29, 2012 10:29 am

I'm not in the end of treatment boat, but the idea has crossed my mind.

And when it has crossed my mind, I've figured I want to go out with a shout, not a whimper. So if the choice is a short time of health vs a longer period of time sick, I'd take the shorter bit of health.

Kinda simplistic, and really, who knows what state of mind I'd be in if it ever got to that, but thats the plan and intent.
7/13/10 CC
7/23/10 -3C RC, 7cm,15/33 lymph nodes
8/31/10 5 1/2 weeks of radiation + Xeloda
11/12/10 6 rounds Oxy + Xeloda
3/25/11 Finished chemo
6/15/11 Colostomy reversal followed by infections
9/05/14 Clear CT scan

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