Chemo for Life

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  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #22
    Have you looked into HIPEC.

    Have you looked into HIPEC.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member
    #23
    glinka65 said:

    yup
    im on the chemo for life program as well was on maint which was 5 fu and avastin....had a huge flair up on it, went for cyberknife to get the larger one on my abdom wall.....at this point dont know if it worked, but now i have severe back pain, to the point im on vivodin and morphine, and the pain plows through it, from what ive read from you wonderful peeps is it could be just pressure from the tumors on the ab wall and pelvic area, which makes sense, i meet back with my onc next monday to start back on the heavy chemo...long day monday and take the pump hone till wed...for all that this treatment brings, i sure hope some pain ease comes with it cause lord knows thats rough stuff!!! thank you all for the wonderful and informitive posts!! you guys rock!!! will be back to post how im doin

    I'm stage 1V, suppose on
    I'm stage 1V, suppose on the chemo. for life....I did 10 months of Folfiri, and last October oncologist offered me a short chemo. break, and we did scans....no progression....this chemo. break is now at the 10 month mark...I have scans coming up this week and am having major scanxiety, I almost forget what it feels like to be on chemo. and the thought of this being a bad scan and having to resume chemo. is freaking me out.
  • jmaddox915
    jmaddox915 Member Posts: 80 Member
    #24
    janderson1964 said:

    Have you looked into HIPEC.

    Have you looked into HIPEC.

    I had HIPEC surgery back in
    I had HIPEC surgery back in January. Right afterwards, it looked promising however within a few months, it was back. I don't regret doing the surgery but it is a tough road to go down.
  • jmaddox915
    jmaddox915 Member Posts: 80 Member
    #25
    RaineySkies said:

    You may want to ask about
    You may want to ask about radiation. I have colon ca and it spread to my pelvic and peritoneal areas and was causing me extreme pain, to the point that I could barely walk. I had 6 weeks of radiation to my pelvic area and I have no pain in that are at all, now. Just something you may want to look into.

    RaineySkies, can you tell me
    RaineySkies, can you tell me about the radiation treatments? I guess I am afraid of the unknown and I don't know anything about the side effects of it, etc.
  • JayhawkDan
    JayhawkDan Member Posts: 205
    #26
    I've been told "chemo for
    I've been told "chemo for life," and was dx this February. I've had 9 full tx of folfiri and vectibix. The onc has let me skip 2 full treatments when they just did the vectibix -- when we went on a couple of trips. So I basically had a month off between folfiri, which was nice. So, it seems they're going to at least let me skip a tx here or there. More time off would be nice, of course, but whatever it takes to keep this beast at bay. My CEA numbers have been fantastic -- starting at 44 and dropping every time to a current level of 0.7. I'm actually waiting for a CT scan as I type this on my trusty ipad, so if anybody has any spare prayers laying around, I'd appreciate them being directed my way... ;-)
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    #27
    jmaddox915 said:

    RaineySkies, can you tell me
    RaineySkies, can you tell me about the radiation treatments? I guess I am afraid of the unknown and I don't know anything about the side effects of it, etc.

    radiation
    I've heard that some folks have had trouble with radiation, but it really wasn't a big deal for me. About the only problem was that it was always during the early afternoon which kinda put a halt to going for a ride on the bike. Otherwise no pain, very little rash, and none of the other side effects.
  • omrhill
    omrhill Member Posts: 125
    #28
    Support
    I am "only" a stage III, so i dont know the feeling of being told my treatment is for life. But I wanted to offer you my support and encouragement. There are many lifers here. I hope their stories inspire you like they have me. Wishing you the best and many years of it.

    Robin
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #29
    I was told chemo for life
    And even a second opinion at that time from the Duke Tumor Board confirmed chemo for life. But my situation changed. Chemo knocked out the two nodes that no one would go near (para aortic behind my heart against my spine). So I did radiation for the remaining tumors and got a treatment break. I'm still on break since last December! The situation today is not always a permanent situation.

    Have you looked into HIPEC? It might be an option for you.
  • danker
    danker Member Posts: 1,276 Member
    #30
    joemetz said:

    chemo
    jmaddox!

    thanks for your post.
    Yes, i've been told the same... chemo for life.

    one of the problems is this damn colon cancer grows back... whenever its not being beat up by chemo.
    so, managed chemo will be our solution for "maintenance chemo treatments".

    I've only been at this chemo stuff since January of this year... but, i've learned that we can manage this crap and hopefully extend our lives as much as possible. I see you're 42, I just turned 48 and have a wife and four kids. I'm with you on wanting to stick around here a lot longer.... My quote to many is "i'm not done yet" and "God has bigger plans for me"

    if you think about it, people die everyday from freak accidents and never get time to live, laugh and love. the one thing with this thing we call Cancer is we all get a chance to enjoy life differently than many others. we get a chance to slow down and enjoy every moment and we get to expand on every relationship (even mend some, if we wish).

    its the cards we're dealt, and we all can make the best of it.

    keep your head up and keep smiling.

    my best

    Joe

    Joemetz
    Like your philosophy" Auntie MAME said" Life;s a banquet and most poor suckers are starving to death." Not us, we appreciate each additional day we get.
  • RaineySkies
    RaineySkies Member Posts: 10
    #31
    Kathryn_in_MN said:

    I was told chemo for life
    And even a second opinion at that time from the Duke Tumor Board confirmed chemo for life. But my situation changed. Chemo knocked out the two nodes that no one would go near (para aortic behind my heart against my spine). So I did radiation for the remaining tumors and got a treatment break. I'm still on break since last December! The situation today is not always a permanent situation.

    Have you looked into HIPEC? It might be an option for you.

    Radiation
    I didn't think radiation was bad at all, some fatigue, but that was my only side effect and it helped me so much. Most of the other people that were at radiation at the same time didn't have a lot of side effects either. Of course everyone is different. It might be something to look into if you are having a lot of pain and it stopped those areas from growing, too
  • RaineySkies
    RaineySkies Member Posts: 10
    #32
    RaineySkies said:

    Radiation
    I didn't think radiation was bad at all, some fatigue, but that was my only side effect and it helped me so much. Most of the other people that were at radiation at the same time didn't have a lot of side effects either. Of course everyone is different. It might be something to look into if you are having a lot of pain and it stopped those areas from growing, too

    I forgot to add the worse
    I forgot to add the worse part was going everyday for 6 weeks.
  • zirotra
    zirotra Member Posts: 30
    #33
    In the same boat
    I just celebrated my 30th birthday. I am in the same boat. QOL is really about pain management. Since last week i am back on 15 mg morphine sulphate. i have nodes in liver, lymph, right thigh and recurrent cancer in pelvic area. And i have a permanent colostomy, the pain in butt doesn't let me sleep in the night without popping in a pill. so i can't sleep on the right or to the left or on the back. Xelox worked for me for shrinking tumor before but it has side effects like numbness and cold sensation and damages some nerves. CPT-11/Xeloda/avastin didn't work for me. Target Now and KRas mutation test are pending which will lead to future course of action on (a) whether to go back on Xelox (b) whether Erbitux will suit me (c) go on clinical trials.
  • Julie061
    Julie061 Member Posts: 18
    #34
    abrub said:

    Have you discussed IntraPeritoneal chemo?
    I had extensive peritoneal mets and seeding (Stage IV appendix cancer.) My specialist, at Memorial Sloan Kettering, did a complete debulking, followed by fitting me with a belly port for chemo directly into my peritoneum. Every other week, starting 24 hours after surgery, I'd be hooked up to a drip that was broken into 3 sessions: day 1 - 2 liters of chemo; days 2 and 3, 1 liter each, were infused and left in my belly to bathe my peritoneal cavity and kill any remaining cancer cells. The theory is similar to HIPEC, only they don't do the heated chemo at MSK, and feel that repeated cycles of IP chemo is as effective, if not moreso. I was supposed to have 8 cycles, but only got through 5 of them (I suffered a very rare side effect of chemical peritonitis.) 5 years later, I remain in remission. The chemo agent used was FUDR, which is a derivative of 5FU. Perhaps you can ask your onc about that option.

    Alice

    Appendix Cancer
    Hey Alice,

    I've never run into anyone who had appendix cancer. I had my appendix removed in 2004. Doc came in 2 days later and let me know he removed a cancerous tumor. When I did my research and found out about the peritoneum "flush", my surgeon told me I was crazy. He said the right upper cholectomy he did was radical! Two surgeries later and I am being treated for lung mets. I am so glad you were able to get the right treatment for you!

    To your continued good health!!

    Julie

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