Guidance and Advice

JustToni
JustToni Member Posts: 5
in Colorectal Cancer #1

I am 41 and was just dia with stage 4 Colon cancer (liver and lungs). I was diagnosed two days into the new year and I feel like I've been thrown into something I have to fight my wa out of. I'm 41, I have so much to look for and live for. I'm lucky to be a patient at MD Anderson in Houston. They have been wonderful. I have my 4th round of chemotherapy this Friday. I'm dealing  it's many side effects of the three different medicines by using marijuana, I didn't use if for round 1 and felt like I was about to go to glory. Round 2 I tried it and havent regretted it. 

I'm looking for folks out here who can give me guidance and advice from a person battling this thing. My doctors tell me things and I do sometimes wonder what they are thinking. 

 

thanks a bunch

Toni

Comments

  • Travis8
    Travis8 Member Posts: 22
    #2
    Hi Toni. I hope this forum

    Hi Toni. I hope this forum can help you. Its helped me get through some tough days. I'm stage 4 colon cancer and just had surgery 2 months ago to remove liver mets. in my experience, I've had days where I wondered why me. Those are the bad days. Ive also had people tell me that I'm strong and they can't believe how well I am handling this. Those days are good. There are a lot of good people in this forum that are more articulate than me and may help you more but just know  most of us understsnd  some of the feelings you are going through. Feel free to ask questions, tell A story or just vent. I've done all of it on here. You may here something that strengthens you or helps you understand something. Good luck and hope to hear from you soon

  • IcyMoonstone
    IcyMoonstone Member Posts: 41
    #3
    Hi Toni

    Hi Toni, I am 37 an in a similar boat.  I am Stage IV with mets in my lungs and on adrenaline gland.  Surgery isn't an option for me and I am a "lifer" for chemo. 

    I have a blog that I use to get my thoughts out.  It has been a life saver, really!  (https://hopeinallforms.wordpress.com/)  I can be honest on what I am feeling and how much this stinks.  It really does and admitting that helps me, at least.  I can say all the dark thoughts, the "why" questions.  Sometimes I get answers, sometimes I just feel more at peace for having it out of my brain. 

    It is a tough thing to go through.  No doubt.  Feel free to message if you just need someone to talk to.  At least for me, that is the biggest thing, is to have someone to listen to.  My therapist is amazing for that.  I don't know what I would do without her.  But know we are here for you!! 

    Kristina

  • JustToni
    JustToni Member Posts: 5
    #4
    IcyMoonstone said:

    Hi Toni

    Hi Toni, I am 37 an in a similar boat.  I am Stage IV with mets in my lungs and on adrenaline gland.  Surgery isn't an option for me and I am a "lifer" for chemo. 

    I have a blog that I use to get my thoughts out.  It has been a life saver, really!  (https://hopeinallforms.wordpress.com/)  I can be honest on what I am feeling and how much this stinks.  It really does and admitting that helps me, at least.  I can say all the dark thoughts, the "why" questions.  Sometimes I get answers, sometimes I just feel more at peace for having it out of my brain. 

    It is a tough thing to go through.  No doubt.  Feel free to message if you just need someone to talk to.  At least for me, that is the biggest thing, is to have someone to listen to.  My therapist is amazing for that.  I don't know what I would do without her.  But know we are here for you!! 

    Kristina

    Thanks

    Thanks for your kind words. The "lifer" for Chemo statement is something my oncologist stated to me and im still trying to understand that one. I can't have surgery at this time but am doing chemotherapy every two weeks for 3 days. What does lifer mean?

  • JustToni
    JustToni Member Posts: 5
    edited February 2017 #5
    Travis8 said:

    Hi Toni. I hope this forum

    Hi Toni. I hope this forum can help you. Its helped me get through some tough days. I'm stage 4 colon cancer and just had surgery 2 months ago to remove liver mets. in my experience, I've had days where I wondered why me. Those are the bad days. Ive also had people tell me that I'm strong and they can't believe how well I am handling this. Those days are good. There are a lot of good people in this forum that are more articulate than me and may help you more but just know  most of us understsnd  some of the feelings you are going through. Feel free to ask questions, tell A story or just vent. I've done all of it on here. You may here something that strengthens you or helps you understand something. Good luck and hope to hear from you soon

    Thanks

    Thanks Travis for your kind words. I look for are to learning more in this forum. 

  • IcyMoonstone
    IcyMoonstone Member Posts: 41
    edited February 2017 #6
    JustToni said:

    Thanks

    Thanks for your kind words. The "lifer" for Chemo statement is something my oncologist stated to me and im still trying to understand that one. I can't have surgery at this time but am doing chemotherapy every two weeks for 3 days. What does lifer mean?

    "lifer"

    "Lifer" isn't a happy term unfortunately.  Mean Chemo for life.  I am on my 8th month of treatment and I am still coming to grips with it.  It is a tough thing. 

    Sounds like you are on a similar regime to what I used to be on.  I was on FOLFIRI because Oxyaliplatinum didn't play well with me plus it didn't work for me.  I am one of the rare ones on that front. 

    It is tough coming to grips with chemo for life.  And if you need assistance, I am here.  I do grumble and gripe about my lot from time to time, but it is what it is.  Having time and a reason to keep fighting is key.  I just got put onto a new regime to hopefully give me a better quality of life.  (Fingers crossed that it helps). 

    Again, if you need anything, just reach out. 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #7
    My onc described it as like

    My onc described it as like having arthritis. It never goes away, you just keep treating the symptoms and are always on medication for it. I think that describes a lifer? Anyway, I'm sorry you're here but you've come to the right place. Doctors just go by stats and have no idea what it like to live with this. They can't really tell us what things will be like. And, of course, it's different for different people. We respond differently to each treatment and our cancer progresses or doesn't progress differently for each of us. It's frustrating. Everyone wants answers. Firm answers. If I take this treatment, this will happen. But with cancer you never know.

    Jan

  • PamRav
    PamRav Member Posts: 348 Member
    #8
    One of my docs told me

    One of my docs told me something that has helped reframe my plight.

    You have a disease, but you're not sick.   And that is true for me.  The chemo knocks me for a loop, but gradually I start feeling like myself again.  I am much more aware of those times I'm feeling fine I take the time to appreciate them and make the most of them.   I try not to look to far ahead and remain here in the present.

    I too have been recently dx Stage 4 with mets to liver.  So we're both on the same long road.  There are many if, ands and buts in my treatment  So I just take it day to day  

     

  • Bellen
    Bellen Member Posts: 281 Member
    #9
    folfiri + avastin

    Icy moonstone - Are you still having folfiri chemo treatment?  My Onco started me on folfiri + avastin biweekly. I had 11th chemo yesterday.  Also have 5 days of WBC shots, so have nurse 6 days in a row. I have CRC with multiple liver lesions (told inoperable).  I have asked about a break - have a real problem feeling well for more than a few days in between. Big problems with regulating constipation/diarrhea issues, nausea, had a fever this time that I was told I should have gone to ER, then shortness of breath for few days (my platelets are low).  My Onco said I could take a break soon (not sure how long).  I think when chemo is ongoing, really need a break now and then, but not sure how long of a break I should ask for and get.

Discussion Boards