I have pulled the plug

airborne72
airborne72 Member Posts: 303 Member
in Colorectal Cancer #1

After three miserable sessions of adjuvant chemo I decided to terminate the treatment.  My oncologist disagreed but he could not present an argument strong enough to change my mind.

The effects of the oxy and 5Fu were too much for my body.  My weight plummeted to 128 (I began this journey at 145) and my blood chemistry was at the point that I was either going to be given transfusions and more injections or perhaps even hospitalized for nutritional assistance.  Screw that!

Here's the rest of the story.  My tumor was staged at 2 simply due to its size, not because of any invasive behavior.  That same large tumor responded to neoadjuvant radiation/chemo and exited my body during a bowel movement in August.  When I had my resection surgery in October the surgeon could not find any evidence of disease (NED) and the pathology report said the same thing (NED).  So while I was literally fighting for my life from the adverse effects of adjuvant chemo I asked myself - why am I doing this?

I also read several medical articles and researched longevity studies and actuarial tables.  Whatever direction I go there will not be much difference in the outcome.  When I factored in QUALITY OF LIFE into the calculations it became clear to me what I should do.  I feel lucky.  I successfully completed three sessions of chemo to kill something that is not detectable and most likely does not even exist.  That was enough for me.

Each of us are unique.  I am not a statistic and my situation barely fits inside the oncological paradigm for adjuvant treatment.  Therefore, I decided to cease and desist the chemo as it was detrimental to my health. I will soon be 67.  The return on the investment just did not warrant the treatment.

BUT, I am scheduled for a CT scan on 26 February.  If I am clean then my oncologist will release me to my surgeon for ileostomy reversal.  If I am not then I will have more decisions to make.  I feel lucky.

Jim

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #2
    Your decision is the best

    You HAVE to do what you feel is best for you. 

    I feel a bit guilty thinking to myself 'Does this mean that you won't be posting on the forum anymore', but it was a brief thought. Let us just say that we were ships that passed in the night.  Of course, we want your CT update, and if you chose to visit the forum to share your experiences in the future, I for one will be very happy to see and hear from you. 

    I hope you move forward in confidence. no regrets, ever. 

    I will never forget your one post, about me. As someone who has come late to the personal confidence game, you post was basically the icing on the cake. 

    Don't be a stranger. And if you do the Facebook thing and are interested, I would be happy to be your friend.

    Tru

  • Mikenh
    Mikenh Member Posts: 777 Member
    #3
    I was wondering about you

    I was wondering about you because you've been quiet here (Beth posted yesterday). Stage 2 is the debated area. I can understand not wanting to do the Adjuvant (just read a bunch of the threads the past week about dealing with the cold weather and other things). I've done 1/8 and I'm often calculating how I get through the next 7. At any rate, it sounds like an informed decision and a careful weighing of costs and benefits and you have a plan should things change so I don't think that anyone can argue with your decision.

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #4
    Only a percentage of those

    Only a percentage of those doing chemo get a benefit anyway, I did the 12 rounds of folfox and it popped up regardless. After the liver resection, I ask if they wanted any chemo done then and the onc. said no, they'd already given it their best shot, and the risks of permanent damage from the chemo outweighed the potential benefit. I hope the Feb. scan and all that follow make the chemo gambit irrelevant...................................................Dave

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #5
    Jim

    i will miss you here but I think I would have done the exact same thing. I think (not that it matters what I think) that you are doing the right thing! I hope you begin to feel better soon! Good luck Jim!!

  • EissetB
    EissetB Member Posts: 133
    #6
    My friend was diagnosed of

    My friend was diagnosed of stage II and did the three months infusions, and now she's doing fine. Been NED for 4 years now. I think you made a good choice. Your body will tell you when needed to see the doctor again. But I doubt it. Eat a lot of veggies, fruits, and drink a lot of water...I mean a lot, to drain all those unnecessary chemicals in your body. I, myself, drink a lot of coconut water and eat slices of fresh cut papaya everyday. So far, so good...my body isn't complaining (yet) Wish you good health and strong mind. God bless us all

    Eisset

  • Cindy225
    Cindy225 Member Posts: 172 Member
    #7
    Good Decision

    Good luck on the CT scan in February Jim. Keep us posted.  As well as on the ileostomy reversal.  It has its challenges but I'm glad I did it. Hope your raynaud's is under control too.  

    Cindy

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #8
    Decision

    Jim:  I am with you.  I would rather have a single good day (or year) off chemo than ten days (or years) on it.  I was at 136 pounds after surgery, but I have gone back up to 157 after being off chemo for four months.  The effects of chemo faded in a month or so, but I would say it took my body a full three months to clear the chemicals.  Like you, I currently have no evidence of disease.  Hopefully as time passes you will get past the chemo and get on to living each day to its fullest.  Congratulations on your decision!

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    edited December 2017 #9
    Best of luck to you Jim. I

    Best of luck to you Jim. I think youve made a wise decision. l also got very sick from a chemo treatment and once I got better I realized quality of life is better than quantity any day. Hope you come back to visit & let us know how you are.

  • ron50
    ron50 Member Posts: 1,723 Member
    #10
    I continued with chemo

    I started out with infusions of 5Fu every day of the week ,After the first week I was facing renal failure. My onc changed me to once a week 5Fu enhanced with levamisole every second week. It made me very ill but on the plus side my blood counts did not drop for the full48 weeks. Did it make any difference ,who knows. My onc thought it did. I was not happy with the thought of not taking every chance I was offered. It will never be the favourite year of my life but I am still here twenty years later. It is a decision that we all make during our treatment. Once made there can be no regrets, all the best Ron.

  • Mikenh
    Mikenh Member Posts: 777 Member
    #11
    ron50 said:

    I continued with chemo

    I started out with infusions of 5Fu every day of the week ,After the first week I was facing renal failure. My onc changed me to once a week 5Fu enhanced with levamisole every second week. It made me very ill but on the plus side my blood counts did not drop for the full48 weeks. Did it make any difference ,who knows. My onc thought it did. I was not happy with the thought of not taking every chance I was offered. It will never be the favourite year of my life but I am still here twenty years later. It is a decision that we all make during our treatment. Once made there can be no regrets, all the best Ron.

    The Oncologist at DFCI said

    The Oncologist at DFCI said minimum 4 cycles, maximum 8 cycles and the sweet spot is 6. My oncologist said 8. So I will need to do some research at some point to see if 6 really is the sweet spot. One ace in the hole if it does metastasize is that there is an immunotherapy cure trial for my mutation and there may be cures for many other mutations down the road as NCI searches tumors for lymphocytes that kill specific cancer mutations in people that come to them for trials. I would like to do the Allele testing to see if I have my own lymphocytes to kill off my mutation, but, if I don't, then the thought is to use those of the first patient cured (Celine) - this according to her husband. So knowing that there's a very promising trial (that has worked on the first patient) and knowing other patients that this has worked for has reduced my anxiety levels about a recurrence. I have no doubt that treatments in ten years will be far less invasive and damaging than what we've gone through.

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