Lifetime Chemo?

Phoenix_66
Phoenix_66 Member Posts: 118
in Colorectal Cancer #1

Well, I am going on my 12th year of on again - off again chemo treatments. So far, my original diagnosis was Stage 3 in 2006 with 6 months of Folfox. The cancer returned as Stage 4 with mets to liver in 2013 and 6 months of Folfiri with an additional 1.5 years of Avastin. The cancer returned in 2017 as Stage 4B with mets to lymph node and vertibrae. I completed 6 months of Folfox with Cyramza and have been on Cyramze alone ever since. My onc is trying to decide whether we will stop Cyramza at some point or continue it for the rest of my life. I'm not sure if I am ready for a lifetime of poking and prodding. For now, the cancer is in remission again and the treatments are tolerable so I will just keep on, keeping on and pray that we make the right decision. Like earlier posts, I sometimes get sad knowing that I will never again be able to do things that I once enjoyed such as hiking, but we are not promised tomorrow and I will continue making the best of each day given me.

At the urging of my onc, I finally agreed to retire from public service at the end of last December and immediately qualified for disability. This has been a huge financial blessing as I didn't need to worry about how we would pay the bills on top of everything else going on. I can honestly say that even though I wish things were different with my health, God has used this experience to draw me closer to him and to help others going through similar circumstances.

Comments

  • BRHMichigan
    BRHMichigan Member Posts: 368
    #2
    Thank you

    Thanks for sharing your story. I'm less than a year from diagnosis and get worn out by all of this. Your beautiful, smiling picture gives me hope & strength. To God be the glory.  -Beth

  • darcher
    darcher Member Posts: 304 Member
    #3
    Ditto

      Thanks for sharing the story.  It should make people more appreciative of what they have, I know it does me.  

  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #4
    Treatment

    So glad to hear that you are in remission and that you are tolerating the treatments so well.  It's got to be a very difficult situation to be in to continue or not, but if you are feeling well and it is keeping it at bay, then you should do what you feel is right for you.  Sometimes this terrible disease puts us in a place of retirement or slowing down when we still we felt we had so much more to give, but you sound like you are moving forward and that is good.  God has a plan for us and believe that being on here to help others is just part of it.  Thanks for letting us know how you are doing and wishing you the best moving forward.

    Kim

  • aoccc2015
    aoccc2015 Member Posts: 37
    #5
    Thats awesome man..enjoy your

    Thats awesome man..enjoy your time off well with family and go see what you can see in the world(between chemos at least lol). Wish I could quit work but I dont think my boss or my insurance will let me haha. Take care man!

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #6
    Upcoming consultation

    I meet with my onc this Friday to discuss where we go from here. I will try to keep you posted on what is decided in hopes that my experience might help someone else.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #7
    Hello Phoenix

    It is a tough decision for sure. The will to live is strong, and can bully you along, but only so far. 

    I wish you the best as you make decisions and see you Onc on Friday. 

    And like BRH, I love your avatar. 

    Tru

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    edited April 2018 #8
    Still no decision

    After I met with my onc, he told me that we would continue on the cyramza every three weeks for three more months and re-evaluate after my pet scan. There is still not enough data available to know when to stop the cyramza. Thanks for the comments on my avatar. My wife and I had the opportunity to take our grown boys to Disney World in between episodes. Note to self: rent a scooter next time! 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #9
    I am on chemo for life. It

    I am on chemo for life. It was disappointing when I was first told. I'd so wanted to hear the initials NED but I guess I never will. We'll just keep it under control for as long as possible.

    I'm so glad you were able to take a trip like that! I've been very fatigued for months and am just feeling better now. I hope that at some point I can take some kind of a short trip somewhere. I renewed my passport last year and got it for ten years because I was feeling optimistic. 

    Jan

  • Phoenix_66
    Phoenix_66 Member Posts: 118
    #10
    JanJan63 said:

    I am on chemo for life. It

    I am on chemo for life. It was disappointing when I was first told. I'd so wanted to hear the initials NED but I guess I never will. We'll just keep it under control for as long as possible.

    I'm so glad you were able to take a trip like that! I've been very fatigued for months and am just feeling better now. I hope that at some point I can take some kind of a short trip somewhere. I renewed my passport last year and got it for ten years because I was feeling optimistic. 

    Jan

    Plan the trip

    Jan, you have been on my mind a lot lately. i hope you start feeling closer to normal so you can plan a getaway trip...you deserve it. Sometimes I have to get my onc to change my schedule to allow for a special "trip" so that my wife and I can spend more time together away from diagnosise, treatments, etc. it is especially important to me for us to build non-cancer memories. 

    Hang in there. I continue to pray for your healing. 

  • Travelmom
    Travelmom Member Posts: 14
    #11
    Thanks for sharing. It is

    Thanks for sharing. It is always good to hear about someone who has been fighting as long as you have and still living life!!! I am on treatment #21...I never thought I would say those words. Again...I hope it helps someone else to keep their chin up and continue the fight. It is exhausting... Thanks again!

     

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #12
    Phoenix_66 said:

    Plan the trip

    Jan, you have been on my mind a lot lately. i hope you start feeling closer to normal so you can plan a getaway trip...you deserve it. Sometimes I have to get my onc to change my schedule to allow for a special "trip" so that my wife and I can spend more time together away from diagnosise, treatments, etc. it is especially important to me for us to build non-cancer memories. 

    Hang in there. I continue to pray for your healing. 

    Aw, thank you! Right at the

    Aw, thank you! Right at the moment I feel better than I have in almost a year. It feels so good! I keep thinking about when I was so sick a few months ago and how scared I was that that was as good as it was going to get. Yesterday I cleaned up the dog poo in the back yard and today I helped my husband take down the Christmas lights off the house. I made cabbage rolls the day before yesterday. I'm SO happy! I can do things! A trip isn't scheduled and I'm supposed to go back on chemo this Friday so I'll be back to feeling lousy again anyway.  

    I just wanted to say thank you! You're very sweet.

    Jan

  • kyolcu
    kyolcu Member Posts: 111
    #13
    Chemo for life

    Hello everyone,

    Thanks to everyone for sharing their stories. I am also Stage 4 mets to liver and lungs. I had treatment of #47 so far for since February 2016. I am a happy man and doing very well with minimum side effects so far. I was on Irinotecan and Erbitux and  2 weeks ago my onc started maintenance chemo of Erbitux and hope it will last long.

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