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Another Subject Needs Answers.... When does Chemo Stop??? Ever???

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

I am kinda confused. I went NED Dec 1st. Totally estatic. I thought chemo would end and My life would go back to as normal as possible. What I didn't expect is for my Onc. to tell me I would NEVER be chemo free. That I am stage IV and I have to realize I have a chronic illness like diabetis... no cure...only treatment. He said right now my body is in a good place because of being NED but statitics show 80% or more stage IV have recurrance..... and when it comes back...it is the STRONGEST cancer cells that return....and they may not die with my current treatment....and that is why doctors run out of options and throw their hands up and say they can do no more. HIS suggestion is for me to stay on my current drip coctail for at least 2-3 more treatments. After a PET/CT in 9 weeks...if CEA and still in remission...then we go to pill form of 5FU...and see if I can stay in remission on that and if I do...then I will ALWAYS be on it....forever....FOREVER???? This makes me REAL sad. When does it ever end??? or does it? I'm sorry.... these stupid pain pills for my back get me thinking about all this stuff...and what other options I have like John23 is always talking about. Now I'm crying like a baby....geez..

Jennie

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Hmmmmm, interesting. I am stage four and my ONC has not told me anything about living on chemo. If my CEA level goes up we do more scans, or a scan every 6 months. Not sure if I could do ever lasting chemo.....

Dont cry, okay.. cry......,HELL! I mean HEAVEN,let's cry together!

XXXXXX

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

OK.....I LOVE YOU!!!...CRYING!!!

Jennie lol...and laughing...what a mess!

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

Hi Jennie, I ran into a guy I had met during one of my hospital stays last week at SK. He's been NED for about a year. I mean NED. He has not been on any chemo only scans every 4-6 months at the moment. He started in 2002, I've been at it 6 years. I would consider your doctors recommendation to stay on for a few more times and take it from there. I do know that I would not want to stop too soon (as much as I WANT to stop) because I feel I could regret it IF it came back.

There are also ways to deal with this like John23 does. We all need to live life a day at a time
-p

damama24
Posts: 175
Joined: Nov 2009

I am stage IV also. My onc never talks of cure only prolonging my life. in other words probably on chemo for duration as long as cancer is kept in check. I don't like idea of bring on chemo for life but at this time I am inoperable so chemo is all I have right now. Deb

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

This is sort of how I approach my situation. The goal is to cure me. If that is realistic or not only time, technology, and my will to live will determine that. I learned years ago that even IF I asked her the old "how much time do I have doc?" question she would say "who knows?" They don't know and any doc who tells you they do know has got a major problem in my opinion or they are full of "it". Unless they open you up and you are filled with cancer they can only GUESS. Hopefully we all will be NED but maybe we won't. I really try to not get caught up in giving things a name like that. I find it does absolutely nothing good for me. When I had my first operation 5+ years ago I was told that I would likely go home in 5-7 days. I was there 16 days. Ever since then I decided to take things as they come and not ask for specifics about certain things because I know they are not fortune tellers. I know this is not what many want to hear, this is only how I find it the easiest for me to deal with things.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

is an idea, kind of a way to get some relief from the grind. It does stand for No Evidence of Disease, but it also stands for No Activity Showing up at This Time.....So then is the age old "5 year mark" if you should stay NED for 5 years then they consider you cured. But it really is as Phil puts it, however the easiest way to deal with it might be for you . I tend to keep NED as None, notta, gone, and that keeps me in a good mood. I do not dwell on the fact that it could come back, I'll deal with that when I need to, and for now its not needed, I found that to not borrow trouble especially in this game is the best post op treatment for me there is........Love and Hope, Buzz

grouchy
Posts: 1
Joined: Jan 2010

My colon cancer is gone and did not return but my husband has lung cancer plus tumor on adrenal gland so is inoperable and also too many for radiation. Onc said chemo forever. After reading this site I know that is how some people have to survive. He is quite upset at the thought of having chemo the rest of his life, but he is very lucky it only makes him real tired and no side effects of the chemo. Some pain from the cancer, but nothing real bad now. Sounds like many people only have the choice of surviving with chemo if they want to keep the cancer from growing more.

bdee
Posts: 305
Joined: Feb 2009

Deb,
Word for word your post is exactly what I would have to write.

Debbie in Arkansas

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I met an older (than me so older than dirt) lady at my oncs office during my first chemo. Her name was Maxine and she was Stage IV cc. Maxine showed pictures of her new dog and chatted away for about an hour while she got some really quick infusion. I think it was Avastin. Anyhow, she was very healthy looking and full of life. She didn't say much about her illness but said she got chemo every 3 weeks and would for the rest of her life to keep 'this stuff from coming back'. She answered 'many years' when I asked how long she'd been 'coming here'.

Jennie, your doctor also told you that 20% never get sick again. I nominate YOU.

Diane

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

Jennie, Live for today, Who knows?? You could get hit by a bus tonight or trip again at work and hit your head. Make sure by the end of everyday that the people you love understand that you love them. See each day as a gift and dont get wraped up in the "I'm going to die" because we arnt getting out of this alive anyways. It's how we LIVE that makes up special, Not how we die..

Life is funny sometimes

Brooks

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I will ever be NED, and really don't look to be anymore, I just look to be alive the next day, and appreciate what I have now, and I will also be on that Avastin and 5fu every 3 weeks as well, to keep the disease stabilized, and if that works for many years for me as well, I'd be happy! I'm at a good place now, and hope to stay there with this disease, I really am not dwelling on the spreads or "What Ifs" as well, I just can't live like that, so just living for the day is the best for me :)

Hugsss!
~Donna

CaryRenault
Posts: 11
Joined: Jan 2010

I just wanted to let you know I love your post. It is soo TRUE and to the point.

pokismom's picture
pokismom
Posts: 153
Joined: Jul 2009

Hi Jennie,
This is a good question as for I am in the same boat as you. My doctor has said the very same thing to me, that once we start we will take breaks here and there if everything is going okay but I will be on chemo for the rest of my life. I think I'm finally accepting this, not sure how I will react once I start treatment. But, it's comforting to hear all these stories of others who are hanging in there and are Ned and just living their life. I hope that you and I can be like them. It's hard to swallow coming straight from the doc like that but I know you'll be okay.
Much love
Donna

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

I AM STAGE IV ,AND WAS TOLD I WILL PROBABLY ALWAYS NEED CHEMO
IN SOME FORM I HAVE HAD 3 REMISSIONS FOR 10 MONTHS,FOR 7 MONTHS AND FOR 4 MONTHS
I DO NOT RECEIVE CHEMO DURING REMISSIONS.,TO REST MY BONE MARROW AND LET MY BLOOD BUILD BACK UP.
MY DOCTOR TOLD ME WITH STAGE IV,THEY ARE LOOKING TO KEEP THINGS STABLE,
NOT TO CURE.
LESSER STAGES HAVE MORE CHANCE OF CURE.
I HAVE ALREADY EXCEEDED THEIR EXPECTATIONS.
GOOD LICK AND GOD BLESS
kATE

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

Jennie, I feel the same way....chemo forever and that is so depressing, I think I could deal with 5 FU only, if I were NED..I just pray for that sooo much, but they say I am not resectable so I am not even sure that will happen. I just have to keep my spirits up and it is so hard to do. But I am so happy for you being NED and you are such an inspiration for me. If I am correct you are NED without a liver resection right? I love ya Jennie and pray for you everyday. Patti

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Our oncologist never said chemo for life to us but I assumed that is what would happen as a Stage IV with liver/lung mets. Right now George is stable, nothing new growing, many have disappeared completely and the rest show significant shrinkage. He is now on IV 5FU and Leucovorin weekly (only takes about an hour) adding Avastin every other week. It is working for him so far. Our onc did say that if things keep working George will be around for a good long time. He has never used the word cure either. Never know what is around the corner. So have a good cry and then go out and LIVE. Tina

Julie 44
Posts: 479
Joined: Oct 2008

Funny this topic came up because I have been feeling down and out and sorry for myself...Had a terrible case of the WHY ME'S.. I have been talking with a good friend and he said get off my sorry a** and live my life..Do what I like to do and see the beauty in things..Just live and don't let Cancer be my life...He got me out of my funk which I will always be grateful to him for..So take this advice and just DO IT life will seem better.....JULIE
P.S. Hoke I am talking about you lol lol lol

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

I like the sound of forever! My onc said stage 4 means it is in your blood and can pop up when and wherever...so I am sure that meant ongoing chemo. I have been on treatment coming up on 2 years, never NED, but we keep trying! I choose to accept this as a chronic illness that I can "live" with. I hope you will accept this treatment and have peace about it! My prayers are with you. Jean

tiny one
Posts: 467
Joined: Jan 2009

Please remember that you are in charge. You can tell them no more chemo or you can continue to take treatment. Each one of us is so different in what we chose to do. Some will continue no matter what. Please focus on doing things you like to do not on cancer. Most oncologist will say NED not cancer free. When there's been a healing, most Dr's will say, it could come back. Well it could not also.

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

LiveStrong

I hate to keep using the old bus analogy so I won't.
I'll just say that any one of us can get run over by a streetcar today...

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Getting hit by a bus or trolly (a "streetcar"?), would be easy,
compared to this ^%$%.

This is like getting hit by that proverbial bus, and remaining
pinned under the damned thing for the rest of your life....
Waiting for it to move, one way or the other, wondering
what body section it'll crush next...

Egads.

So I compare it to "old age". We get old, and then we are faced
with the end of life. No matter how hard we try to remain alive
forever, we will all come to the end eventually.

There was a time that the average life span was between 50 and 70;
has it really changed that much? I look through the Obits and notice the
ages are all around 50-70, with some modest exceptions.

My mother had lung cancer and they gave her 6-9 months. Seventeen
years later, she died of lung cancer. She never stopped smoking her 3-4 packs
a day. She was in her 70s when she died, and otherwise in decent health.

My neighbor died two years ago, after a long term of meds for
A-Fib. The meds caused his liver to quit. He had been on a heart
transplant list to get a heart..... He was taken off the list due to
a too weak liver. And he couldn't get a liver, because his heart
was too weak. He was in his 70s.

I'm in my Medicare age.... am I "due"? (hell, I'm overdue!)

Once one fully accepts the premise that life includes death, life begins to
mean more than getting a new HDTV, or grabbing that next great sale item.

So... I have colon cancer... and so it's in so many lymph nodes
that I should expect it to be throughout my entire body...

I remain waiting for the other shoe to drop, hoping I'll have enough time
to get everything set for my family before my time comes.

I'm finding that I'm getting more out of life now, than when I walked
around feeling sorry for those that had cancer; -I- have cancer.

It may be the beginning of the end of my life cycle, but it's not
the end of life - It's the beginning.

When we were born, it was the beginning of the end. Did we enjoy
life less because of that premise?

It's time now, to be more alive than before.

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

I personally think that is rather young John. Most all of my relatives either lived into their 80s or are still alive in their 90s. Right now I'd sign up for 70 since I don't expect to make that by any means. I guess it has to do with what is the "normal" that one is used to. In some families making it to 60 might be a big deal while in others, they died at 89 - in the prime of their lives. I do find that many of us are preoccupied with dying from cancer and just dying in general. It's part of the "circle of life Simba" or the seasons. Out of life death, out of death life.
Doing the constant chemo (or constant treatment of choice) is a drag, there's no kidding one's self about that but it comes with the cancer package.

I still think that in a weird kind of way, we are the really lucky ones.
We've heard the knock at the door.
Life goes on within us or without us.

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I'm not stuck under any bus AND have a precious friend who got out of his truck to check on a shifting piece of equipment while on I-285 in Atlanta. His body was strewn over 90 feet. His family has to ride past that spot every day for the rest of their careers...

My mother is 78 and healthy. My Dad is 82 and healthy. My grandmother died in her sleep at 92, etc. I've got great, great aunts still alive and doing fine. I think I always figured I'd live FOREVER.

Circle of life, is right. Even the Bible says there's a time to live and a time to die. I'm 59 and hope to see 103. If I do, I want to be a model on the Colondar! In SPANDEX!

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

If you got hit by the proverbial bus and was pinned under it, still alive, how would you react ? Me, I'd be screaming like a banshee !!! But ya gotta figure that if ya get hit and still alive you have a chance at complete recovery. If not complete recovery then a new normal which allows you to continue to be here with the loved ones longer on earth. I would much rather sip-sip-puff my way around and keep getting the baby kisses from my kids than die instantaneously by a bus. So, chemo for 6 months or chemo for a lifetime, you will learn to deal. Why? Because the human body has the survival instinct that doesn't allow failure whether the individual does or not.Love, Hope and no bus ,Buzzard

OK...

103. Spandex. I'll be 99 then....yeah, I wanna see also...

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I'm serious man. Me and you, showing our scars. Of course, by then they'll be lost in our wrinkles.

You don't happen to have a Buzzard suit, do you?

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Diane... you are a hoot! You have had me in tears laughing...thank you...and you ALL. It just never ceases to amaze me how I can walk in this room..... feeling self pity...confusion... just not happy.... and before ya know it everyone puts in their 2 cents worth..... and in different languages.... but all languages we understand...and can even relate to. It opens my eyes to situations in my life that have always been there.... I just need YOU guys to help me see what is in front of my own face.

A BIG example...... I was in an automobile accident when I was 15. I am now 52. I suffered head trauma that caused me to have acquired epilepsy. I have taken anti-epileptic medicine since then....why?????? It was a chronic illness.... there is no cure for epilepsy (in many many cases)..it is only treatable. I have Grand Mal seizures....which are the full blown having fits in the floor and losing controls of bouls... the real nasty worst kind of seizures. BUT, I have been seizure free for 18 years..... thanks to those meds I take. I did not really even think about it being an "treat only, no cure disease" until those same words were used by my Onc and he said I had to face that my Cancer was chronic....like diabetes.... it just didn't hit me ..... until a few days later that I HAVE BEEN LIVING WITH EPILEPSY....A CHRONIC ILLNESS!!!!! Geez... opened my eyes. I know now I can LIVE with this cancer. I just want to hit myself upside my head and say "Girl... what have you been thinking?"

Yes, I have been very blessed! No, I never had to have any liver or lung surgery. Inoperable on both counts. God and chemo saved my life thus far..... and BOTH will continue to do so..... and that my DEAR friends is just the way I am LIVING from here on out. One day at a time. Live for today....worry tomorrow about tomorrow...if need be.

Right now I am back in the hospital. Not for no cancer related stuff. But for some "normal" stupid thing I did......SEE, I'M STILL NORMAL!!! I tripped and fell and hit my backbone on my desk.... just cause I have lost a good deal of my fat over the past 6 months...hell, I thought I could sit Indian style again....LOL....NOT!! I did end up with a fractured T7 in the upper spine. Found that out this past week. BUT.... I kept having these pains shoot down my butt and right leg and it finally sent me to the ER today. The bone doc that found the upper fracture also said there had to be injury in the lumbar region. They just didn't bother to check it ALL on the first MRI. So tomorrow morning I am scheduled for a second MRI to see what else I messed up on that spine that is causing the sciatica.

I just want you ALL to know that thru every comment I read in this thread.... I was touched and feel so very close to all of you. Patti.... I pray for you all the time too as I do ALL of you. When I have my grandkids on week-ends. Boy 6 and Girl 4..... they have come to learn all your nicknames...... and guess which one they always say.... Grandma, don't forget the BUZZARD!!!.... and just think that is so funny!!! LOL...boy are they right!! Luv ya Buzz!

Wow....and who ever said this Dilauded and Valium combo wasn't great.....geez, I FEEL GOOD!!!!
BUM..BUM..BUM..BUM..BUM...BUM..BUM..LOL...Nite people...luv ya all!!!

Peace....Jen

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

See, all better now ;-)
It's a matter of how we choose to look at things

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Just like a man.... Buzzard

HAD

to tell everyone I'm four years older than him. ;o)

Jenny, Jenny, Jenny! We're gonna wrap you in Bubble Wrap, girl! At least they're giving you something strong for pain. Just hope they can fix you up good as new and soon.

Phil, we need to see your smiling face more often, especially during this time on the board. So much sad stuff going down. Can you play us some happy tunes?

Bible Study, Lunch with friends and then going to get my nails painted some floozy color. Don't anyone get hurt while I'm gone!

azsunwmn
Posts: 8
Joined: Apr 2003

I am glad I came to this comment board and realize that there are other people like me out there. I have decided to quit chemo after 2 surgeries and 4 go-rounds of chemo and 2 of radiation. I said enough! I realize I will never be "cured" but I just can't fathom the thought of taking chemo once a week for the rest of my life. So I am walking along-side that proverbial bus and one day it will be my fate to walk in front of it. I am just tired and depressed at this point.

P.S. My family doesn't accept that I am quitting so I didn't tell them right out. I just told them I am finished with chemo and it was successful.

Would love to hear suggestions or stories.

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Like I said earlier Jennie, Live Life. You don't know what tomorrow will bring so worry about tomorrow when it gets here. Other than your back (ouch) you are doing well and who knows, the doing well might very well last a very long time. If it doesn't then worry about that when it happens. Don't waste today worrying about next week. Tina

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

I feel that I may get to a certain point where the quality of my life (or lack thereof) may supersede my fight for life. When I used to go to Gilda's Club, there was a woman who had a few run-ins with cancer. Her most recent was for breast cancer. She had it with the treatments and stopped them much to the dismay of her family. Everyone at Gilda's supported her decision, possibly because unlike her family we knew what chemo was about having been there and done that. It really can be a grind at times. The last I heard, she was still doing well w/o chemo. Go figure...

I'm approaching my 6th year anniversary of my Dx next month. I have had more than a few bouts of wanting "it" to stop but I've yet to want to let the cards fall where they may. One thing that I know keeps me going is that I have 2 young boys to help raise. This is my decision and I would imagine that if I said "that's it, I quit" that it would not be met with applause.

It's a tough call that one has to make but I would respect the choice that anyone makes concerning it. If a family member of mine was in my shoes, I would like to think I would support them but then again, I would hope that they gave it a good shot. I have a friend at work who's brother-in-law was Dx with a type of throat cancer. His prognosis, while not rosy, wasn't terminal either. This guy chose early on that he did not wish to fight it and he didn't. He died last month.

I'm not going to sit here and bore you how many rounds I've had because we all have our own thresholds. I hope you evaluate your circumstances before you make your final decision.
-phil

azsunwmn
Posts: 8
Joined: Apr 2003

Wish I wasn't a member but I can see there are many wise people that have this terrible disease. I have been on such a roller coaster trying to decide whether I want to take chemo forever or not. Even my husband wants me to end the ups and downs of this decision. This May 23, it will be the 8th anniversary of my diagnosis of Stage IV. I have lasted a lot longer than anyone expected me to. My liver's been resected, I had a tumor in my lungs that blocked 95% of my airway and pneumonia from the radiation in my lungs and four rounds of chemo. At this point, I just feel tired of fighting. Does anyone fault me for feeling like I am giving up?

John23's picture
John23
Posts: 2140
Joined: Jan 2007

azsunwmn -

There's a difference between "giving up", and doing something else.

If you're having doubts, then perhaps it's time to read some of the
posts dealing with alternatives. Chemo isn't the only solution, and
there's a growing number that seem to support that.

I have always believed that one's body and instincts deserve to
be heard more loudly than outside forces.

Doing what -you- feel is best, is most likely what -is- best for you.

I gave up with western medicine years ago. I have developed a major
amount of trust to Traditional Chinese Medicine, and would encourage
anyone to look into the thousands of years science for themselves.

It's not "black magic", or "snake oil", it's a real, very viable alternative
to the pharmaceutical industry's hold on the suffering.

There are many other methods also, and you can find many mentioned
here on this forum.

Best of health, regardless of your path!

AnneCan
Posts: 3692
Joined: Oct 2009

I hope you don't give up. The fact that you are 8 years out from your diagnosis shows you are a fighter + an inspiration to the rest of us who are newer to the fight. Take good care!

azsunwmn
Posts: 8
Joined: Apr 2003

You are a "newbie" to this discussion. Anyone who has fought cancer for 8 years and has done as much as I have to live as long as I have, resents those words "don't give up", even though your intentions were good. You have alot to learn about cancer survivorship.

AnneCan
Posts: 3692
Joined: Oct 2009

I am truly sorry. I thought I took those words from your post + never meant them to be hurtful to you at all. Please accept my apologies; I only wanted to encourage you & I am very sorry I obviously didn't.

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

Azsunwmn - you have only posted 11 times in 7 years. If it is your desire to discontinue treatment, then that is your decision to make.

Many of us are fairly new to this cancer and we truly need all the encouragement we can get. I have found comfort (more than I could ever express) from all the people on this wonderful board. Please don't put people down because they tell you "don't give up", these are words of encouragement and for the most part are warmly received by a whole group of people. Anne, you go ahead and encourage George and I any time you like, as a semi-colon family, support from others, not feeling alone, is extremely comforting and gives us the courage and strength to keep going in very trying circumstances. Tina

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Keep on lurking, we need positive communication on this board.

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

You do not have the right to tell ANYONE that they are a "newbie" so they "have a lot to learn about cancer survivorship."

I'm sorry you have had a rough road. But you don't know what roads any of the rest of us have walked down. You don't have the right to assume. Your reply was rather rude to someone who was only trying to encourage you.

Sure, I have my days that I get tired of everyone saying "stay positive" because there are days that you just aren't (even if most days you are). But when people say it with good intentions, I'm not going to bite their heads off for it - or tell them they have a lot to learn about cancer.

You'd probably call me a "newbie" too if you just decided to assume. But I fought cervical cancer for a few years (NED 5 years now) before starting my current battle with colon cancer, and have had one odd problem after another. We all have our own paths that led us here, and others do not know all the details. I'd say some that have only been dx'd a short time, but have had lots of problems with surgeries and/or treatments are no more "newbies" than someone that has only had one successful surgery w/o any complications, even if they've had years of chemo.

I wish you the best, whether you give up altogether now, or if you decide to try alternative ways to survive, rather than chemo. Only YOU can decide what is best for you now.

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

I wish I could be like Groucho "I wouldn't join any club that would have someone like me as a member" or something close to that!
There is a book by Barbara Ehrenreich called
"Bright-sided
How the Relentless Promotion of Positive
Thinking Has Undermined America".
It has to do with how many americans now-a-days feel that they are not allowed to think about things negatively at all... An interesting concept to me.

While I certainly can see how your post and feelings are causing a lot of opinions from people on the site, there seems to be... can't think of a good word here...people often feel they know what is best for everyone else. I have to go back to the old "quality of life" thing. Some people want to live to be 100 or more. I just want to live as long as I am relatively healthy and positively enjoying life. My Dad used to say "May you live as long as you want to and want to as long as you live".

You do have to understand, and I imagine that you do Azsunwmn, that when you make a post like you did on a site like this that there will be comments from one and all. This is, after all, a survivors site. I think that we all need to realize that no matter how hard we try to get through this, there may some a point when enough is enough. We all have our own threshold that we will face (or not face) at some point.
I wish you peace
--phil

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

I just read your post. Damn it! I hope you can at least have a break but a break may not be good either. Know that I am thinking of you and I hope you will continue to have great results.
John is on Xeloda and avastin and is feeling pretty good. We don't know how much it is working. His CEA was down last month from 11.3 to 10.1 but,I am not sure we can even go by that. He will have a scan in a month or so.
Keep your chin up. If you need to talk you have my phone number. Just call.Love Paula

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Your words mean more than you will ever know. I will know all results today. I did find out that if it is a fracture in my pelvis that NO surgery will be done. It is a sit on your butt and heal type of thing...........soooooooooooo, guess what I'm routing for????? Who ever would have thought you would wish you broke your butt?????? LOL........... go figure!

Jennie

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

Hi jennie,
I too am stage IV, i have not asked yet what to expect after my last surgery, which i hope will be in march for my liver, if they were to tell me i would not ever be without this cancer, i am pretty sure at this point in my treatment i would not beable to handle it. I don't even think i would go to the trouble of the surgery since i tell myself know i will be fine once they remove it,

So for me and you and anyone else i have to believe we will beat this cancer.
Live, laugh, Love
Penny

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

That azsunwmn can be so rude to another cancer survivor (Anne), for kind words she was trying to say. For someone who doesn't come to encourage or help others on this board, but to jump on someone just infuriated me, and I don't get mad easy. Of course people are going to try and talk you into not stopping treatments, and some will tell you to continue, it's solely up to you, what kind of answers did you expect to get?? you want to be talked out of discontinuing, or you want to be talked into it?? there's two sides to that, Anne gave you a comment I would have said, I'd keep going with whatever it takes, because I have a loving hubby and 4 beautiful kids, that I have to keep going no matter what for, so if you want to come here after god knows how long it's been since you posted last, and jump on someone for a nice answer, then you picked the wrong board to jump on.

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

You go girl, I was trying to be nice in my reply and hold back a little. I am so happy you "let it rip". I also sent Ann a PM thanking her for her continuing encouragement she gives all of us. She owes no one an apology. Just think what Mike49 would give to have 8 years with that young family of his instead of being on hospice care. Even on hospice care, his loving wife came on to say thank you for thinking of them and to encourage everyone to keep up the fight, their story does not have to be our story. What a loving family that must be. Oh well, it takes all kinds I guess. Tina

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Well it took a little over 7-months but I've seen my Chicky now get her "Italian" blood a boilin' :)

I sure don't want to be on her bad side, that's for sure, LOL :)

Italian women are known for their passion - in love and war. If I'm going into a battle, then I want Chicky right beside me watching over me :)

Anne - we all know what you meant and we love you!
Tina - you were very diplomatic and kept your cool!

I'm outta' here...don't hurt me :)

-Craig

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I'm glad you talked to Anne, I did too, I know that hurt her, and no apologies were necessary, Anne was being kind, and your post was alot nicer then mine, sometimes you can only be so nice so long lol...here she is, calling her a "newbie" like newbies aren't allowed in our discussions, when everyone is, Anne is no newbie, even if she were, her opinions would be very welcomed here, as anyone elses. So true about how Mike would love what that person is in...8 years of life with the cancer, what I would give if I knew I even had that long!

You make me laugh Lion, you can turn me being so grumpy into someone who is just laughing now..are you saying I wasn't diplomatic like Tina? LOL..I'm kidding, I know exactly what you are saying, and you are choosing to be the true gentleman, and not comment to her at all, (but I know what you're thinking) LOL...

I would never hurt you ;)

Hugsss!
~Donna

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

If at any point you feel you need a break, I'd just tell your onc that you really need one. Due the 2-3 more treatments now as he suggests, and if the PET/CT and CEA are good, ask if you can have a break before starting Xeloda.

I can tell you I have a friend who has been on Xeloda for well over a year (pancreatic cancer), and has very little side effects. He's stage IV and went through all sorts of awful clinical trials, etc. He was thrilled with Xeloda, and it worked well for him for a long time. Unfortunately he recently has some growth again in some tumors and has to go back to another drug he had before (which he hates).

In the end, it is your choice. If you are NED and stay NED for a while, and you choose to discontinue chemo if you have issues with quality of life, then do it. A lot of Stage IV people that go NED stay NED even w/o chemo, or at least take breaks from chemo.

Maybe you'd feel better getting a second opinion at this point? You might want to consider that too.

I hope your back is healing. You've been through a lot lately.

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Appreciate the input. A lot is MUCH better now.... and I have opted for the Xeloda..... Thanks my dear friend......

Jennie

marmite
Posts: 5
Joined: Mar 2009

Hi Jennie,

I was really interested to read your post as I got almost the exact same news in early Dec. I was diagnosed in October 2007 and really believed I would beat this disease, no matter what the odds. In August 2009 I was NED, by December my cancer was growing again - this is the fourth time this has happened. This time my Oncologist put it much more bluntly - told me I would be on chemo for the rest of my life - and for the first time since my diagnosis, I fell apart.

Am still struggling to pick the pieces back up but your email actually encourages me. If 20% of stage iv don't have recurrance - well that's higher that I expected and some of us have to be in that 20% to make the statistics work. Plus the 'no cure' - well that's only at the current time and it's only one person's opinion. Things are changing all the time in terms of treatments. I really hope you're one of the lucky ones.

My Oncologist is amazing but he doesn't know everything and a lot of medical decisions are based upon supposition and statistics. I feel exactly the same way - that "doctors run out of options and throw their hands up and say they can do no more". But that's not good enough until I feel they've exhausted every possible option. Like you, the 5FU treatment works which is a miracle - but I believe there has to be more.

Good luck, am thinking of you. x

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