Chemo for Life

jmaddox915
jmaddox915 Member Posts: 80 Member
I recently was told by my oncologist that my Stage 4 has reached a point where I will need to be on chemo for life moving forward. My cancer has spread to my pertionel (abdomen) area and also some disease in my pelvic area. The chemo I am on is designed to keep things stable not necessarily to kill or shrink the cancer.

I would like to hear from others who are in a similar boat. I am not sure how I feel. I told my oncologist a while back that my goal is to maintain quality of life for as long as I can. I am only 42 so I want to stick around as long as I can.
«1

Comments

  • cancerblows
    cancerblows Member Posts: 7
    I have never posted on here.
    I have never posted on here. My husband was diagnosed with peritonel ca secondary to colon cancer. He has had peritonel since sept. he to will be on it for life. Which I hope is a long time. He is currently taking Avastin, Irenatecan and Xeloda. He has a scan on Thursday results friday. He is having more pain than normal. But still works full time and I can't get him to quit lifting so much. Do you have any symptoms?
  • jmaddox915
    jmaddox915 Member Posts: 80 Member

    I have never posted on here.
    I have never posted on here. My husband was diagnosed with peritonel ca secondary to colon cancer. He has had peritonel since sept. he to will be on it for life. Which I hope is a long time. He is currently taking Avastin, Irenatecan and Xeloda. He has a scan on Thursday results friday. He is having more pain than normal. But still works full time and I can't get him to quit lifting so much. Do you have any symptoms?

    I started having some
    I started having some discomfort a few months ago. I recently had an MRI done and the disease in my pelvic area is pushing on my uterus which is pushing on my rectum area causing me some pain.

    I am taking hydrocodone right now and it is keeping the discomfort at bay. I am working as well.

    I see my oncologist on the 24th and will be interested to see what he suggests we do about the pelvic part of this. Otherwise the chemo isn't so bad and it is keeping things stable so far.
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    Chemo for Life
    I've been on chemo for 8 1/2 years.
    It certainly depends on what chemo you are on, I'm on Erbitux and Irrinotecan and sometimes I'm sick and tired of it and then after a few days I feel better. Overall, my quality of life is quite good. It's certainly not my ideal situation but it's the situation I have now. Maybe things will change in the future, maybe they won't. As long as it's not too much of a PITA I will continue...
    -phil
    PS: I was never told, nor did I ask, if I was on "chemo for life".
    I learned a long time ago to take things as they come...
    Maybe I'll get run over by a streetcar, then I'll be on chemo until I get run over by a streetcar (named Desire)
    :-)
  • abrub
    abrub Member Posts: 2,174 Member
    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
  • joemetz
    joemetz Member Posts: 493
    PhillieG said:

    Chemo for Life
    I've been on chemo for 8 1/2 years.
    It certainly depends on what chemo you are on, I'm on Erbitux and Irrinotecan and sometimes I'm sick and tired of it and then after a few days I feel better. Overall, my quality of life is quite good. It's certainly not my ideal situation but it's the situation I have now. Maybe things will change in the future, maybe they won't. As long as it's not too much of a PITA I will continue...
    -phil
    PS: I was never told, nor did I ask, if I was on "chemo for life".
    I learned a long time ago to take things as they come...
    Maybe I'll get run over by a streetcar, then I'll be on chemo until I get run over by a streetcar (named Desire)
    :-)

    thanks Phil
    Phil

    congrats on 8 1/2 years!

    I read your info page and I love your positive attitude.
    I've been on Ebitux and folfox for 24 sessions... VERY bad skin rash and many cracked fingers.
    been off for 4 weeks and have a resection and bag take down surgery in 2 weeks.
    reading your post here and your other info inspires me.

    I was told to expect to be on "maintenance chemo" for a long time.
    and when i quizzed my oncologist on it (and we have a very good man to man report... he said... "from what it looks like, you'll be on chemo until greyhound bus runs you over or something else kills you." we laughed and i got his point.

    your Street Car statement made me smile

    thanks for your post and for your inspiration.

    my best

    Joe
  • joemetz
    joemetz Member Posts: 493
    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
  • Vickilg
    Vickilg Member Posts: 281 Member
    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

    Joe
    Hi Joe. I really liked what you wrote about cancer giving us the benefit of slowing down and actually enjoying life. I have heard it before but something about how you wrote it really hit home. Thank you for that!
  • steveandnat
    steveandnat Member Posts: 886
    me too
    I'm starting my 4th year on chemo...next week treatment 63. My oncolgist has told me chemo for life. Granted its tough but I have to think about the things I would have missed if I didn't do this chemo every other week. I stopped working which is good because it allows me time to rest during treatments. I get tired easy after this many treatments. I look at it as a chronic illness and chromosomal is the medicine. I pray everyday that there will be a miracle cure. Who knows... they are working on it every day. Jeff
  • Doc_Hawk
    Doc_Hawk Member Posts: 685
    Lifer
    I'm on chemo for life as well. Sometimes I feel like it's pretty comparable to a diabetic who has to have insulin injections and something that I can deal with as many years as I can. Other days it just seems like even another year is just too much. I've only been in this fight for two years but already life without chemo seems like another lifetime.
  • Question: What exactly is "chemo for life"
    When you say "chemo for life" do you mean your cycle of chemo with breaks never "ends" or do he the six month cycles repeat.

    For example, would the "three days of chemo with a two week break" that I'm currently on just go on and on without any longer break than the two weeks or is there some sort of "cyclic" nature to notion of "chemo for life?"

    Another example is that before my colon cancer dx on June 13, 2012 and from what my Rheumetologist tells me, I was already as close to doing "chemo" as you can get without going to an oncologist, as I was taking Imuran to help control my SLE (Systemic Lupus Erythematosus) twice a day everyday for almost a decade.

    Are we talking about on ongoing, daily, everyday, and constant treatment like my SLE meds or do thoes on "chemo for life" get breaks longer than the "in treatment" breaks?
  • 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

    Getting a Chance to Slow Down
    Well said "joemetz."

    I was in what some would call a "risky profession" taking small boats out, to assist those in distress, in weather when most people were heading for safe harbor. Consequently, I've survived some "close calls" over the years and remember men and women who didn't survive those close calls.

    You are very right that it can all "end in a flash" and none of us know when our expiration date is. So it's best to take it all one day at a time and enjoy each day fully.

    As you said, cancer brings that into sharp focus for us.
  • geotina
    geotina Member Posts: 2,111 Member
    Chemo:
    My hubby has been on chemo for a little over 3 years. He says if it continues to keep things stable then he will continue. I don't know how he does it but he does. Has some good days and some bad days. A few dehydrations and a few times he blood wacked out of control. Chemo for life can mean chemo light for a very long time so just take things as they come.

    Hugs - Tina
  • tommycat
    tommycat Member Posts: 790 Member
    Hi
    At the gym, one of the cardio instructors has stage 4 cancer. She goes for infusions every other week, so she works two weeks out of the month while she rest and recuperates from the chemo on the other weeks.
    She is a dynamo---when she's back, she's baaack.
    Simply sharing....and best of luck to you.
    Tommycat
  • belindahill
    belindahill Member Posts: 144
    Peritoneum
    Hello my husband is recieving treatment for peritoneum cancer, which spread from the colon to liver lung and peritoneum. He will be on chemo for life, he is doing ok, works part time. We dont ask many questions, he has just had his last cycle of oxy, can not have any more, he will continue with xeloda and avastin, hoping that that will still keep tumours stable. He was dx Aug 2010, has had 20 cycles of chemo. Love to all chin up.
  • Doc_Hawk
    Doc_Hawk Member Posts: 685

    Question: What exactly is "chemo for life"
    When you say "chemo for life" do you mean your cycle of chemo with breaks never "ends" or do he the six month cycles repeat.

    For example, would the "three days of chemo with a two week break" that I'm currently on just go on and on without any longer break than the two weeks or is there some sort of "cyclic" nature to notion of "chemo for life?"

    Another example is that before my colon cancer dx on June 13, 2012 and from what my Rheumetologist tells me, I was already as close to doing "chemo" as you can get without going to an oncologist, as I was taking Imuran to help control my SLE (Systemic Lupus Erythematosus) twice a day everyday for almost a decade.

    Are we talking about on ongoing, daily, everyday, and constant treatment like my SLE meds or do thoes on "chemo for life" get breaks longer than the "in treatment" breaks?

    Chemo
    I get chemo every two weeks with no end in sight. Pretty much go in every other Tuesday morning and have a blur until that Friday or Saturday. Just finished my 28th consecutive treatment and only the Lord knows how many more to go. I ain't askin' and He ain't tellin'.
  • steved
    steved Member Posts: 834 Member
    Chemo for life
    Have been through that conversation and found it very hard to shift from a focus of thinking about cures of the illness to thinking about controlling it. I was on that trajectory for 6 months and in that time surgical ideas have developed that may offer me a cure so things do move forward (I have a pelvic recurrence only). I too am young-ish (39)and found getting my head around the more palliative approach hard- in truth for me it wasn't the chemo that was hardest to think about but the decline and loss of independence but I think different aspects of facing this prospects scare each of us differently.

    Give it time to sink in. You are right that the focus becomes quality and that can affect how you also think about the treatments- are the side effects worth the benefits if you are no longer looking for cures. I shifted off oxaliplatin soon after that news and stayed on avastin and xeloda for 6 months as it is a comparatively easy regime for me- can work and function at home fairly well and it seems to hold my cancer quite well.

    New treatments are on the horizon (read topics on regorafanib and others below) but in truth they are more drugs likely to improve our ability to hold stage four for longer rather than cure it, but they are important to know about.

    For now, talk to people who help to talk to, be kind to yourself while you adjust to this news, get any answers you have answered from the doctors, be cautious of any timeframes they offere which are only guesses and most of all think about how to live your life to teh fullest. We are all on limited time.

    steve
  • danker
    danker Member Posts: 1,276 Member
    joemetz said:

    thanks Phil
    Phil

    congrats on 8 1/2 years!

    I read your info page and I love your positive attitude.
    I've been on Ebitux and folfox for 24 sessions... VERY bad skin rash and many cracked fingers.
    been off for 4 weeks and have a resection and bag take down surgery in 2 weeks.
    reading your post here and your other info inspires me.

    I was told to expect to be on "maintenance chemo" for a long time.
    and when i quizzed my oncologist on it (and we have a very good man to man report... he said... "from what it looks like, you'll be on chemo until greyhound bus runs you over or something else kills you." we laughed and i got his point.

    your Street Car statement made me smile

    thanks for your post and for your inspiration.

    my best

    Joe

    joemetz
    Just so long as when your ship comes in ,you are not at the airport with your bus ticket. LOL
  • taraHK
    taraHK Member Posts: 1,952 Member
    chemo breaks!
    Yes, I am on "chemo for life". But my oncologist believes in "chemo breaks" or "stop-start chemo". That is, if things seems to be going relatively well, I take a chemo vacation -- my last one was 4 months (heaven!). Then back on....but that's OK.

    I feel that my quality of life is pretty good now -- I'm tolerating the chemo OK, still working, stilll 'socializing'. I may come to the point where I say 'enough' -- but I ain't there yet.

    Tara
  • RaineySkies
    RaineySkies Member Posts: 10

    I started having some
    I started having some discomfort a few months ago. I recently had an MRI done and the disease in my pelvic area is pushing on my uterus which is pushing on my rectum area causing me some pain.

    I am taking hydrocodone right now and it is keeping the discomfort at bay. I am working as well.

    I see my oncologist on the 24th and will be interested to see what he suggests we do about the pelvic part of this. Otherwise the chemo isn't so bad and it is keeping things stable so far.

    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.
  • glinka65
    glinka65 Member Posts: 132
    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