It has been 6 years since my stage 4 diagnosis!

ThomasH
ThomasH Member Posts: 106 Member
edited June 2022 in Colorectal Cancer #1

Well, I just keep right on going with this stuff.

I would love to be able to tell you that I've been in remission, or that I have a break in treatment or something like that, but all I have at the moment is an extremely stubborn will to keep going, and a reasonably good response to treatment.

Today I'm in the middle of my 70th round of FOLFIRI treatment as I enjoy my 6 year anniversary of finding out I had stage 4 cancer. It has been one heck of a journey so far. I've unexpectedly learned a lot of life lessons from my cancer, met some of the most open and caring people I never would have encountered otherwise, and explored treatment options like cannabis for chemo nausea and psychedelics for end of life anxiety. (all legally accessed)

My cancer still does not define who I am, it is just another experience I have. Some days that experience is a little tough, and some days I can almost forget it is even a part of my life. I enjoy those days a lot!

I wake up every day feeling thankful to be able to have those experiences, which are mostly good ones. At least those are the ones I choose to put my energy into anyway.

I truly wish everyone could be fortunate enough to have as many things in their life to be thankful for on their journey as I have found.

Comments

  • Diane_K
    Diane_K Member Posts: 84 Member
    #2

    Thomas,

    Thank you for your inspiring posts. I strive to live my life with the same gratitude. It's a work in progress for me.

    Peace,

    Diane

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #3

    Hello Thomas - It is good to see you back on the forum.

    Congratulations on reaching six years, even if they have been pretty darn tough. You are a shining example, that life can be lived for the long term, while on chemo.

    I must confess, I admire you greatly. 70 FOLFIRI sounds absolutely horrendous to me. While I doubt I could have gone through so many treatments, it is surprising what you are willing to do, to stay alive.

    I hope that one day, treatments will end and you can enjoy being chemo free.

    Tru

  • PamRav
    PamRav Member Posts: 348 Member
    #4

    Congrats ! Ive made it five years, same situation as you I think. Always a reoccurrence somewhere.

    I am curious, do you take breaks in the chemo regime? I’ve taken 51 treatments so far or various chemos, but once my scan is clear I jump off the chemo. I restart when the cancer rears its head. My doctor has suggested that i just stay on the chemo, but I get to feeling so lousy I need to stop.

    Again, good for you. I hope you have a celebration lined up🥳

  • ThomasH
    ThomasH Member Posts: 106 Member
    #5
    https://csn.cancer.org/discussion/comment/1695845#Comment_1695845

    So far I have only taken a break back in 2017. They thought they had gotten everything, so I stopped chemo for a while until it came back in an enthusiastic way in 2019. I do have high hopes that I will be able to take another break sometime, but chemo has been every 2 weeks since 2019.

    I hope you continue to get good results, and that you get all the breaks you need.

    Thomas

  • SandiaBuddy
    SandiaBuddy Member Posts: 1,381 Member
    #6

    Congratulations and thank you for your words of wisdom.

  • Mary435
    Mary435 Member Posts: 1 Member
    #7

    So happy to hear you doing good, my husband was diagnosed almost 6 months ago stage IV with met in the liver. He’s already tired and I don’t know how to cheer him up. It’s been hard and it gets worse whenever he implies that he wants to stop chemo

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #8
    https://csn.cancer.org/discussion/comment/1697147#Comment_1697147

    It must be hard as a caregiver and love one.

    When I was undergoing treatment, I was so wasted that any suggestions, even though I know they came from a place of love, wearied me. It is hard to fight for yourself AND your loved ones. I had two school-aged children at that point, you can bet I wanted to live for them, and them alone, but oh, you get so tired.

    I could suggest that you show your husband this message. Look darling, this lady is Stage IV and she went through FOLFOX - 5FU - Radiation & 5FU 24/7 and now she has shown No Evidence of Disease for EIGHT YEARS. It can be done! BUT, when you are going through all of the crap, it is so hard, so very, very hard, to see light at the end of the tunnel - anyones tunnel, let alone your own.

    Respect how tired he is. Let him know how you love him, more than anything else on this planet - well, children if you have them, of course. Be happy! I hated to see my husband and children looking distraught; it brought me down even more. Have your sad moments with him, but be happy and let him see how each step towards the end of treatment is a step towards being NED.

    It is a hard situation for ALL of you. Be good to yourself along the way.

    My thoughts are with you.

    Tru

  • abita
    abita Member Posts: 1,152 Member
    #9

    It is good that folfiri is still working for you! I too will battle as long as I can. Unfortunately, the chemo stops working for me after a year or 2. Then I move on to the next option.

    Congrats on keeping going!

  • vivgrl
    vivgrl Member Posts: 34 Member
    #10
    https://csn.cancer.org/discussion/comment/1697147#Comment_1697147

    I'm Stage IV, mets to the liver and lungs, inoperable. Chemo has been very, very tough for me (down for the count 10-12 out of every 14 days) but I focus on the fact that I thankfully still have a chemo option (at least for now - some drugs have stopped working or did not work); I get to wake up every morning and it's beautiful springtime; I get to give love to the ones who mean the most; and cancer has not robbed me of my independence. Maybe those thoughts can help your husband too. And don't forget about the power of hope - some people here like the original poster are NED or stable after a Stage IV diagnosis.

  • vivgrl
    vivgrl Member Posts: 34 Member
    #11
    https://csn.cancer.org/discussion/325019/it-has-been-6-years-since-my-stage-4-diagnosis

    This is so inspirational. It's so good to read that it's possible chemo can keep working for a long time. Thank you for sharing.

  • feckcancer
    feckcancer Member Posts: 189 Member
    #12

    Fingers crossed Imugene continues the way it is heading. Hang in there

    CHECKvacc: Imugene's Enhanced Tumour Killing Technology - YouTube

  • kathyspringer
    kathyspringer Member Posts: 4 Member
    #13

    Hi, I'm new to this site. I'm 70 yrs and had been very healthy till now. I have stage 4, been through radiation - which did a great job of greatly reducing my tumor- 4 months of chemo and was set for rectal surgery when MRI and cat scan showed a spot on my liver. Had liver surgery a month ago. The surgeon found a cancerous lymph node during surgery and removed it (as well as removing my gall bladder- why not?!). The follow up pet scan showed other lymph nodes - so I'm no longer in curative status and in treatable. Looks like I will be starting folfiri soon. The thought of chemo every 2 weeks for the foreseeable future is a little scary. So I really appreciate this positive post - 70 sessions - wow, congrats - hope I have your stamina. Right now my biggest problem is getting bowel movements under some control. But I'm active- walking a lot, gardening and eating well.

    Thank you all for sharing

    Kathy

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #14
    https://csn.cancer.org/discussion/comment/1697303#Comment_1697303

    Being scared, active and eating well, sounds like you have a handle on things.

    There is no better antidote to fear than activity, especially when it is something that you enjoy.

    Welcome to the forum, and be sure to introduce yourself, here, on the forum home page https://csn.cancer.org/forum/128

    Wishing you all the best through your treatments. We're all here for you.

    Tru

  • kathyspringer
    kathyspringer Member Posts: 4 Member
    #15

    thanks. I'm still trying to figure out the site - given my lack of tech skills could take awhile !

    kathy

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