Running out of options

Steve444
Steve444 Member Posts: 105 Member
in Colorectal Cancer #1

I'm still reading most days, but haven't posted in a while.  My liver mets are back in full force 6 months after SIRT.  Mostly under one cm but filing most of a lobe.  Interventional radiologist says I'm back to systemic care for the rest of my life. I'm currently on Lonsurf which doesn't appear to be working but we'll give it another month.  Done with Folfox and Folfiri as well.  Stivarga is pretty much the last one to try if I choose to go that route.  I'm not in a happy place, vomiting throughout the day, unable to eat or drink much without spewing it back out.  Ascities is killing me.  I've been drained 5 times, the last being 6.5 liters.  I need to decide if I want a permanent drain pipe installed to drain at home.  I've been in bed now for 11 months dealing with pain and fatigue.  I have a feeling I'm going downhill.  My eyes are also turning yellow.  Blah blah blah.

Comments

  • NewHere
    NewHere Member Posts: 1,428 Member
    #2
    Oh Man Steve

    I really wish I had some good words for you, you are so strong.  Hang in there.  

  • jen2012
    jen2012 Member Posts: 1,607 Member
    #3
    I wish I had advice, but just

    I wish I had advice, but just wanted to say I'm sorry.  Cancer just sucks.

    are you taking anything for the nausea?

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #4
    No blah, blah...

    Really, Steve, please don't feel like your post or your life is blah,  blah. You could type on and on and fill the screen, that is why this forum and its members are here. To listen. To empathize. Sometimes there is no more advice, just love. 

    It hurts my heart to read your post and know how much you are suffering. Your strenght of mind, even though your body is spent, spills onto the page through your words. A true fighter. 

    I know, sometimes the patitudes we hear about Cacner sound rather dull to our ears. Fight, battle, strong, couragous, and others. But when they come from those of us who are patients or caregivers, you know they are said with meaning and with love. 

    I can't physically reach through the computer to hug you, but the feeling is there.  Prayers are there. 

    Sue

  • Steve444
    Steve444 Member Posts: 105 Member
    #5
    NewHere said:

    Oh Man Steve

    I really wish I had some good words for you, you are so strong.  Hang in there.  

    Thank You

    I'm trying to hang in there to see a  grandchild born in July.  

  • Steve444
    Steve444 Member Posts: 105 Member
    #6
    jen2012 said:

    I wish I had advice, but just

    I wish I had advice, but just wanted to say I'm sorry.  Cancer just sucks.

    are you taking anything for the nausea?

    Nausea

    I usually take Ondansatron but now I vomit when I swallow the last of the melt pill.  Now I'm trying an older prescription for prochlorperazine.

  • Steve444
    Steve444 Member Posts: 105 Member
    #7
    Trubrit said:

    No blah, blah...

    Really, Steve, please don't feel like your post or your life is blah,  blah. You could type on and on and fill the screen, that is why this forum and its members are here. To listen. To empathize. Sometimes there is no more advice, just love. 

    It hurts my heart to read your post and know how much you are suffering. Your strenght of mind, even though your body is spent, spills onto the page through your words. A true fighter. 

    I know, sometimes the patitudes we hear about Cacner sound rather dull to our ears. Fight, battle, strong, couragous, and others. But when they come from those of us who are patients or caregivers, you know they are said with meaning and with love. 

    I can't physically reach through the computer to hug you, but the feeling is there.  Prayers are there. 

    Sue

    Thank you Sue

    I'm sure that I'm no worse off than anyone else.  Thank you also for how welcoming you are and have been to all these folks.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #8
    I'm so sorry.

    Cancer is a terrible thief of all that is good in our lives.  Sending strength your way to make it through to July and the joy of a new life in your family.

    (on the topic of nausea, the only thing that worked for me was Ativan, 3x per day, at a dose of 2 mg...makes you kind of sleepy, but really knocked out the nausea too)

    Big hugs coming your way.

    AA

  • NewHere
    NewHere Member Posts: 1,428 Member
    #9
    Steve444 said:

    Thank You

    I'm trying to hang in there to see a  grandchild born in July.  

    Photos

    You are going to post the photos in July...

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #10
    Steve444 said:

    Nausea

    I usually take Ondansatron but now I vomit when I swallow the last of the melt pill.  Now I'm trying an older prescription for prochlorperazine.

    Oh Steve

    I had this problem with Ondansatron. I felt my problem was acutally psychological. I was so sick of the pill itself that it made me vomit. I had to do some serious self talk every time I put it in my mouth. I would hold down the vomit, tears streaming from my eyes. 

    I hope you find something that works for you. Nausea and vommiting are so wearing on the body. 

    Sue 

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #11
    Oh no, I'm so sorry. How

    Oh no, I'm so sorry. How miserable it must be to live like that. I pray you'll get on top of it soon through drugs or healing or something. That's no way to live, no enjoyment of life. Please take care.

    Jan

  • sflgirl
    sflgirl Member Posts: 220 Member
    #12
    Dear Steve

    I'm sorry about where you are.  You have been very welcoming this past year since I joined.  I'm glad to see you post, I think about you often.

    My very best to you, 

    Andrea

  • Easyflip
    Easyflip Member Posts: 588 Member
    #13
    That's rough.

    So sorry, medical MJ? Clinical trials are showing promise and progress feels rapid. Hang in there, you never know. 

    Good luck,

    Easyflip

  • coloCan
    coloCan Member Posts: 1,944 Member
    #14
    Some current trials:

    http://oncpracticemanagement.com/issue-archive/april/2016-vol-6-no-4/select-ongoing-trials-currently-enrolling-patients-with-colorectal-cancer/

    There's 2 FDA=approveed drugs from last year:Lonsurf(TAS- 102)and Cyramza (ramucirumab)

     

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    #15
    IV vitamin C option

    Some people have had megavitamin C down to the last several days with a high(er) quality of life, when the tumors finally crowded out their liver.  Our friend Ren was one, and our alt med doctor does it with end stage pancreatic cancer patients who have intense pain and debilitation. 

    In the late stages, each IV vitamin C infusion, say 50-100 grams, may get 1-2 good days - good as in no or less nausea, no or less pain, and energy to get out of bed, and run around.  Even heavy oral megadosing with sodium ascorbate liquids, Pauling and associates cited an example of an old guy with liver mets living quite a bit longer, chopping wood every day until on a Friday.  He then got a  flu like condition on a Friday, a worsening "tailspin" over the weekend and was gone Monday.  Lived longer with much better QoL.  

     

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    edited May 2016 #16
    HAI Pump Therapy

    Treating Liver Metastases with Hepatic Arterial Infusion Therapy
    Video on Dr. Kemeny's Treatment

    People may be tired of me praising Dr. K and results vary...but, she has a 61% 10 year survival rate for those with Stage IV colon cancer. I've been around over 12 years. I'm not "cured" but I'm not dead either. Few complaints (if any)

  • Phil64
    Phil64 Member Posts: 838 Member
    #17
    So sorry Steve. I wish that

    So sorry Steve. I wish that none of us had to deal with this ugly disease. Maybe someday a cure will truly be found. Thanks for sharing your fight with us. And know that there are many on this board sending you prayers and positive thoughts.

  • beaumontdave
    beaumontdave Member Posts: 1,289 Member
    #18
    Steve, words do seem so

    Steve, words do seem so inadequate at times to convey our feelings. it makes me ache to hear the quality of life you've endured this past year. I hear about hot chemo and the HAI pump Phillie speaks of, and hope your docs are giving you the best available options. Your overdue for a break, and I'm hoping it comes soon.........................................Dave

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