New Introduction: Stage 4- starting Folfiri and praying for a miracle

Hi all-

Well, this is certainly one heck of a disease and one unbelievable fight. My mother was diagnosed with stage 3C colon last April. She had a colon resection and we went through 6 months of Folfox - finished in October. Unfortunately, after many visits to try to source the extreme pain she was in, we finally had a PET and the cancer is back with a vengeance. She has now progressed to stage 4 and has been told she is terminal. We left our onc and moved to get another opinion. Met with a top onc that is taking her treatment into his hands to try to buy her some time. Obviously, we are hoping for a miracle cure.

We are starting immediately on Folfiri with the possibility of some mutation drugs (waiting on confirm of the mutation) and have been told to expect many side effects including hair loss, fatigue, fever, weight loss, hair loos, vomiting, diarrhea, and mouth sores. Any advice would be appreciated. Thoughts and prayers to everyone out there from me!

Best regards,

Barb's daughter

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    Terminal. Quite the word...

    but don't let it frighten you. 

    There are many stage IV, terminals, here on the forum doing just fine. Sure, some of us are doing the 'chemo for life' others are doing the 'watching and waiting' (me) but we're a great bunch of happy (for the most part), healthy (except the cancer) people with allot of living to do. 

    I'm sorry about your mum. Sounds a bit like my story, first being stage IIIB and on FOLFOX (radiation & 5FU to follow) and then a liver met bumping me up to Stage IV. 

    I hope the Folfiri knocks her cancer back, or at least slows it down. 

    You will learn much here that can help your mum, yourself and everyone who is taking this journey with her. 

    Welcome to the forum, Barb's daugther. 

    Sue - Trubrit

  • Barb's daughter
    Barb's daughter Member Posts: 5
    Trubrit said:

    Terminal. Quite the word...

    but don't let it frighten you. 

    There are many stage IV, terminals, here on the forum doing just fine. Sure, some of us are doing the 'chemo for life' others are doing the 'watching and waiting' (me) but we're a great bunch of happy (for the most part), healthy (except the cancer) people with allot of living to do. 

    I'm sorry about your mum. Sounds a bit like my story, first being stage IIIB and on FOLFOX (radiation & 5FU to follow) and then a liver met bumping me up to Stage IV. 

    I hope the Folfiri knocks her cancer back, or at least slows it down. 

    You will learn much here that can help your mum, yourself and everyone who is taking this journey with her. 

    Welcome to the forum, Barb's daugther. 

    Sue - Trubrit

    Thank you!

    Thanks you Sue- Tribrit. Your words give me encouragement. She is in so much pain. Just got home for helping her do some christmas shopping and it is really hard for both of us. You are very kind and I appreciate the support.

    Best-

    Barb's daughter (ShellY)

  • fatbob2010
    fatbob2010 Member Posts: 467 Member
    Wishing Well

    Hi Shelly,

    Sorry to hear of your mom's situation.  "Terminal" is a harsh word that can mean many things.  As Sue mentioned there a number of us here on the forum who live with the disease.

    Try to take a breath and hopefully the FOLFIRI will do what you two are looking for.  

    Peace

  • hippiechicks
    hippiechicks Member Posts: 509 Member
    Hi there .. I know this is

    Hi there .. I know this is really, really hard and scary.  Such horrible news at this time of year as well, but I agree with the others .. I was told the same grim story two years ago.  I did my Folfiri after my recurrence and have been NED for 2 years.  My side affects were less than Folfox by far.  I did have aloxi (sp) and zophran as a pre-med to help with nausea .. also an IV of fluids during tx to help with dehydration (this worked really really well!) My hair thinned and broke .. lost my eyelashes and such.  Body aches and fatigue was rough, but rested a lot and got through.

    I have had some doctors tell me cure is not possible and others tell me the complete opposite. No one really knows .. that is the truth.  Believe in your miracle, they happen. Innocent

  • Barb's daughter
    Barb's daughter Member Posts: 5

    Hi there .. I know this is

    Hi there .. I know this is really, really hard and scary.  Such horrible news at this time of year as well, but I agree with the others .. I was told the same grim story two years ago.  I did my Folfiri after my recurrence and have been NED for 2 years.  My side affects were less than Folfox by far.  I did have aloxi (sp) and zophran as a pre-med to help with nausea .. also an IV of fluids during tx to help with dehydration (this worked really really well!) My hair thinned and broke .. lost my eyelashes and such.  Body aches and fatigue was rough, but rested a lot and got through.

    I have had some doctors tell me cure is not possible and others tell me the complete opposite. No one really knows .. that is the truth.  Believe in your miracle, they happen. Innocent

    Thank you!

    Thank you so much! I am reading this to my mom now. I am SO happy to hear you are two years NED. I will pray for you and appreciate you reaching out. We are really happy to hear your side effects were less. PRAYERS!

    Best regards- and cheers to continued health,

    Shelly

  • Barb's daughter
    Barb's daughter Member Posts: 5

    Wishing Well

    Hi Shelly,

    Sorry to hear of your mom's situation.  "Terminal" is a harsh word that can mean many things.  As Sue mentioned there a number of us here on the forum who live with the disease.

    Try to take a breath and hopefully the FOLFIRI will do what you two are looking for.  

    Peace

    Thanks!

    Fatbob-

    Thank you. I cry just hearing people actually take the time to reach out to me. I have a feeling that this forum will be helpful. Just reading all of your struggles and successes gives us hope. Thanks again and bless you and yours.

    Best-

    Shelly (Barb's daughter)