CSN Login
Members Online: 11

Chemo for Life

jmaddox915's picture
jmaddox915
Posts: 80
Joined: Nov 2009

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.

cancerblows
Posts: 7
Joined: Feb 2012

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's picture
jmaddox915
Posts: 80
Joined: Nov 2009

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.

RaineySkies's picture
RaineySkies
Posts: 10
Joined: Sep 2011

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.

jmaddox915's picture
jmaddox915
Posts: 80
Joined: Nov 2009

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.

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

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.

PhillieG's picture
PhillieG
Posts: 4665
Joined: May 2005

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)
:-)

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

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

danker
Posts: 731
Joined: Apr 2012

Just so long as when your ship comes in ,you are not at the airport with your bus ticket. LOL

abrub's picture
abrub
Posts: 1528
Joined: Mar 2010

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

Julie061
Posts: 18
Joined: Jul 2012

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

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

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's picture
Vickilg
Posts: 281
Joined: Jan 2011

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!

sailor_on_a_lee...
Posts: 51
Joined: Jun 2012

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.

danker
Posts: 731
Joined: Apr 2012

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.

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

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's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

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.

sailor_on_a_lee...
Posts: 51
Joined: Jun 2012

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?

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

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'.

geotina's picture
geotina
Posts: 2047
Joined: Oct 2009

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's picture
tommycat
Posts: 790
Joined: Aug 2011

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's picture
belindahill
Posts: 142
Joined: Jan 2011

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.

steved
Posts: 836
Joined: Apr 2004

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

taraHK
Posts: 1961
Joined: Aug 2003

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

glinka65
Posts: 132
Joined: Feb 2009

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

smokeyjoe
Posts: 1428
Joined: Feb 2011

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.

janderson1964
Posts: 1531
Joined: Oct 2011

Have you looked into HIPEC.

jmaddox915's picture
jmaddox915
Posts: 80
Joined: Nov 2009

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.

JayhawkDan's picture
JayhawkDan
Posts: 206
Joined: Apr 2012

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... ;-)

omrhill
Posts: 125
Joined: May 2012

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's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

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.

RaineySkies's picture
RaineySkies
Posts: 10
Joined: Sep 2011

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's picture
RaineySkies
Posts: 10
Joined: Sep 2011

I forgot to add the worse part was going everyday for 6 weeks.

zirotra
Posts: 30
Joined: Dec 2011

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.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network