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When is enough enough?

Vickilg's picture
Vickilg
Posts: 281
Joined: Jan 2011

I never thought I would reach this point but with no end to chemo insight and no chance of remission I am wondering if I should stop fighting.   I fought so hard for my husband and daughter but I'm always just so tired.   Our lives revolve around me being sick scattered with a few good times.   When do you just say enough is enough?

Momof2plusteentwins
Posts: 437
Joined: May 2012

I have thought about that, but I am in remission now. I don't know how long I could do chemo for life. I see both ways, I don't want to leave my husband and children but quantity vs quality. I see a lot of people on the board that tolerate chemo fine and have more good days than bad. I think you need to try new chemo and see how well you tolerate it before you make that decision. You may tolerate it fine and it could shrink those buggers. Don't give up yet. Big big HUGS!
Sandy :)

Dyanclark's picture
Dyanclark
Posts: 247
Joined: Apr 2012

No one wants to tell you to quit.  We are all different My husband is the one with cancer.  He has gone thru more then I could for sure.   I know you guys all get depressed so make your decision on a good day.

annalexandria's picture
annalexandria
Posts: 2183
Joined: Oct 2011

I only did chemo for a total of 9 months, and it was so dreadful that there is no way I could have kept it up forever.  But I see people who are able to live a reasonable life on some types of chemo, fo a very long time, so I think some of the decision probably depends on how hard the chemo is hitting you.  I watched my sister do chemo up to the last two weeks of her life, and when I got sick I swore I wouldn't do that, but I've come to the realization that it's just not that simple.  When you're fighting for your life, and for time with your family, things get pretty damn complicated.  I think if I was still having some good days mixed in with the bad I'd probably keep chugging along, but it might also depend on just how bad the "bad days" were, but that's just me.  It's such a personal choice and so hard to make.  A user on the Colon Club forum stated that she didn't want to die with "chemo in her veins", and that really resonated with me, but I can easily see how others, like my sister, might follow a different path.  Whatever path you follow, Vicki, the board will support you as you walk it.  Ann Alexandria

smokeyjoe
Posts: 1428
Joined: Feb 2011

I really don't have an answer for you .... have thought about it myself, would I know when enough was enough???   Hate what this disease is doing to us and our families......

PhillieG's picture
PhillieG
Posts: 4659
Joined: May 2005

I've been at this non-stop for 9 years next month. If the past 6 years were like the first 3, I would have probably stopped a while ago. Thankfully (and luckily) they haven't been. I get yearly RFA's done and do Erbitux and Irinotecan every two weeks. I'm tired for a few days but it's become more of a chronic PITA (pain-in-the-ass) type thing than anything else.

If things were to go south I'd revisit the subject but I'm not there now. 
We all have our breaking points. I think it's important to differentiate when you're doing it for YOU and when you're doing it just for others.

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

Personally, probably as long as possible, or at least until I can assure that the financial future is reasonably set for my wife and kids.  I am the sole income earner in our family, so I have to maintain the income and benefits (health and life insurance) through my work for as long as possible.  I may get to a point where I have to take LTD, but I will want to make sure that I can keep my benefits until my death.  I am VERY sorry to read about your situation, as I know that someday (maybe soon, who knows) that I will be in the same position.  Whatever you decide, we will be here to support you through everything.  I REALLY hate this disease!!!

Lovekitties's picture
Lovekitties
Posts: 2893
Joined: Jan 2010

Have you talked with your onc about alternatives?  I don't know what type of schedule you are on, but it may be possible to reduce the dose and up the frequency.  This might give you more good days than bad.  Or it might be possible to even lower the dose just a tad and that would make a difference.

Might you be able to do some physical therapy?  Some times the structured activity can make a difference in how your body reacts to medications.

I know that "chemo for life" seems a daunting statement.  Are you physically ill because of the chemo, or just too tired to feel like participating in life?  It sounds like you are at an emotional low at the moment, and that is not a good time to be making that decision.

Some times we need a gentle reminder that while what life has become with cancer is not as we would wish it could be, it still offers us and those who love us the time to build happy memories and have a positive impact by being in this world.

For some of us the time may come to truely evaluate the quality vs quantity question.  It should be considered by what we can turely endure physically.  While our lives are intwined with others, we can only evaluate it based on our own feelings.

Hugs and prayers for you,

Marie who loves kitties

belindahill's picture
belindahill
Posts: 142
Joined: Jan 2011

Hi Vickilg, I say stick with it, It's my husband who has the cancers, and we have lost count how much chemo he has had, maybe 50 rounds! and it's so hard we live for the good days, we have no choice, one day it will beat us, or maybe it won't!Never say never. Good luck. 

 

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

and realized that to me, quality was much more important than quantity.  Personally, with the side effects I suffered, I would never go on chemo for life.  I don't feel that the pain is worth it.

This is obviously a very personal decision - you have to do what feels right to you, not to anyone else.  I'd ask about options, and then decide.  I know my family would understand if I'd felt the need to call it quits. 

 

No brilliant advice here, just a reminder to be true to yourself,

 

Alice

Sundanceh's picture
Sundanceh
Posts: 4266
Joined: Jun 2009

When enough becomes enough...

This is a decision we've all thought about in our darkest hours...

I think we all will know...but then I don't know.

I've fought hard because I could see the carrot at the end of the string.

Regardless of how I felt...chemo would have killed me if I were on it steadily with no breaks...

If I hear that...might radically influence my decision.

Folfiri was no life for me...really sick 28 out of 30 days...knowing I was getting off...I held on...barely.

It is ruff stuff...many handle it better than I could.

I believe in quality over quantity....specially based from my last fight.

Still, it's daunting either way...the hardest crossroad we'll ever have to stand at.

 

Hugs/Craig

 

 

 

luvinlife2
Posts: 172
Joined: Jul 2012

We've all been there at some point.  I look at it as staying alive for the next great drug that will keep me alive for the cure. I have too many things to do yet.  It's so hard on our families but I think it's safe for me to make the assumption that your husband and daughter want you around for a very long time.

Dyanclark gave you great advice....make your decision on a good day.  Smile

janie1
Posts: 753
Joined: Apr 2011

Vicki, I feel what you feel.  I am sooooooo tired of this.  BUT>>>>> when I see what could be down the road as far as advancement for this crapshit of a disease.......and it's coming, I keep playing the game.  Do the chemo, get poked, prodded.  And I really need to come up with a line for those that say......"well you look good".  And it's usually the same dumb*ass people, who I have already explained to that "MAKE-UP" does wonders.  They still don't get it.  

Now, back to the subject.  I don't know how you are physically feeling on irino & erbitux, but I hope that you are able to give it some time.  Is it the combination of "all" things that's got you feeling at your lowest?  The uncertainly is the big killer for me.  I try to break down things that I hate about this disease, and there's a bunch.  Then, deal with each one separately.  When I look at the magnitude of it all, I feel there is no way I can manage this.  When I break it down, somehow it's easier.  I do not try to be a super woman.  The bare minimum gets done around the house these days.  I read, try to calm myself (did accupuncture yesterday....really helped in more ways than one).  Was it placebo-effect?  Don't don't.....don't care.  I felt better.

What will tomorrow be like?  Well I bought 3 lottery tickets tonight, so tomorrow might be great. Won't win, unless I buy a ticket though (or 3).

I hope, hope, hope you will see better days, but we will all have really difficult decisions in front of us at some point.  I guess those that make them know when it is right.

((hug))

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

I think the majority of us ask this question all the time. I've been doing chemo since June '09 and it is getting tougher and tougher.  I'm starting what I think is my last hope some new chemo pills because my body is rejecting all the other chemos. So I may not haveyo make that choice if the pills don't work. Hang in there. I think about all the good events that I was part of over the past 3years. I pray we are guided to makethe right decision.  Jeff

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Such good advise here from all.
Give yourself some time to weigh the options and feel a little better decision -making wise. This is a hard decision and we have to allow ourselves to express our emotions.
I may be starting chemo again and meet with my oncologist Tuesday.
I hate this disease and what it makes us have to deal with.
Thinking of you and feel what you are contemplating.
Barb

barbebarb's picture
barbebarb
Posts: 464
Joined: Oct 2011

Such good advise here from all. Give yourself some time to weigh the options and feel a little better decision -making wise. This is a hard decision and we have to allow ourselves to express our emotions. I may be starting chemo again and meet with my oncologist Tuesday. I hate this disease and what it makes us have to deal with. Thinking of you and feel what you are contemplating. Barb

Rubyrose
Posts: 47
Joined: Feb 2011

Steveandnat -is it regorifineb  Rubyrose

tanstaafl's picture
tanstaafl
Posts: 945
Joined: Oct 2010

Finding a less obnoxious regimen was high on my priority list from the outset.    We used IV vitamin C, PSK and other nutrients to deal with side effects generally, and from folic-5FU toxicity especially.   We used high dose cimetidine early on instead of Avastin, along with COX2 inhibitors (mostly the natural ones in our case, Celebrex sometimes) and other biomodulator supplements like menaquinone-4 (vitamin K2's human form) that made the chemo work better than traditional chemo did on my wife's tumor cells. When my wife gets her IV vitamin C, she feels extra energetic for two days, when she drags and becomes more sensitive to stuff in the air, 5-6 days, it's time for a refill.  Others have used IV vitamin C to eliminate Xeloda side effects where xeloda is a 5FU derivative.  Life Extension has an extensive list of recommendations that is available through discount mail order online.    Chemo doesn't have to be noxious to be beneficial.   

When "enough is enough"  means that one needs a doctor that can get better answers.  For patients to be advised to do nothing when there are alternatives that can make things feel better from the get go, is unfortunate.

 

 

herdizziness's picture
herdizziness
Posts: 3389
Joined: Apr 2010

I kind of wish the oncs wouldn't bother to mention that chemo for life.  It's so disheartening to hear.  My sister-in-law was told that this past Monday.  She asked my husband so, what's chemo for life, 6 months, a years, years?  How do I make a decision with so much still unknown.

I know this morning I didn't want to get up and go to chemo.  My hubby kept coming in and haranguing me about it, until I decided to get up and go.  I thought, so what if I don't go today, so what if I don't do this again?  I didn't like my answers so I got up and went.

I have no answers Vicki, I like what Marie said, actually I loved what she said.

My heart goes out to you.

Winter Marie

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

3.5 years on chemo and enjoying life here! Some hollydays every 6 months due to remisions but again reccureces in just a few monist , despite that enjoying life!

dmj101's picture
dmj101
Posts: 521
Joined: Nov 2011

Hey Vickie, we all have to face this question at some point.... Is it really for constent.. from this point or is it a round and break and then see where you stand and then decide the next step or next drug.. that is how it has been explained to me.. I too was told "chemo for life" and presently I am on  a break... I did ok on Folfiri and then usd the Irenotecan.. and Vectibix.. I am not going to lye.. mentall this was really hard to understand for me and I had been thru it with my mom.. but when it was me it was like all the lessons learned disappeared..

Take some really deep breathes before making a decision... you must be having second thought about giving up... otherwise you would have just done it and never questioned it.. We all make the decision that is best for us...

However, remember the eternal sleep doesn't come immediately or quietly.. while chemo may seem tough... make sure you understand what the disease will do not treated(my biggest fear of all), this may give you pause to reconsider..

Also be aware it may not be chemo you have to be on constently.. maybe like me its Vectibix or another bio agent or drug... where the sideeffects are more easily handled..

I want to say.. Don't give up.... we are all here on earth for a reason.. I really don't believe we are here to die... We are here to exercise our souls and fight.. so please consider alternatives and live either with or without treatment.. just make it a meaningful life.. .. Donna...

John23
Posts: 1832
Joined: Jan 2007

"Tanstaafl" summed it up nicely:
".....one needs a doctor that can get better answers.  For patients to
be advised to do nothing when there are alternatives that can make
things feel better from the get go, is unfortunate...."

Get yourself an appointment with another specialist, you deserve
to have other opinions regarding your care!

When it's "your time to go", you won't have the choice!

If you feel you're heading in the wrong direction, maybe you're being
directed to consider fighting other ways......(?)

Keep on keepin' on....

Best of hopes,

John

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

I hear hear you, and cannot imagine what you are going through. I have the greatest respect for you.

The real answer is "when its enough" , you will know in your heart the time to make the call.

Try and smile even if you are tired, at least a little one. 

Whenever you need a friend, we are a click away.

hugs,

Pete

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

addresses this issue.  Well worth the read:

 

http://opinionator.blogs.nytimes.com/2013/01/19/when-the-patient-knows-best/?src=twr

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

i liked this quote, its a hard call.

"I’m not trying to squeeze one more day out if it’s a bad day.” All patients should all be able to make the same kind of choice."

one advantage of declining systemic chemo is the ability later on the engage in immune therapies without the immune system having been weakened by chemo.

the hopelessness of the incurable label, we should ban it, oncologists just saying it, is taking years off peoples survival. stealing hope is easy.

hugs,

pete

jen2012
Posts: 1186
Joined: Aug 2012

And I really like this quote from Pete :)

"the hopelessness of the incurable label, we should ban it, oncologists just saying it, is taking years off peoples survival. stealing hope is easy."

You are SO right! 

jen2012
Posts: 1186
Joined: Aug 2012

Vicki - I don't have much to add that the others havent said, only that I'm really sorry you are faced with this choice.  

Wondering how you are doing though?

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

My heart goes out to you my dear.  I can't add much more than what the others have said.  I have good days and bad days too.  On my bad days, I just concentrate on "this will pass and I will feel better in a day or two." And then sometimes we just need to vent and ask others in similar situations, "when is enough, enough?" Hope you are just venting.
Blessings to you, Ron

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

Vicki, I think many of us have been there.  I wonder if I will get to see my children grow up...they are 10 and 12.  I want so badl to see mydaughter get married and have babies and my so to become a man, husband and father.  To see them graduate from high school and then college.   I am not ready to go at 46.  I am in it for the fight for me and for my family.  I will do whatever it takes to be here.   I am even considering HIPEC if it comes to that.

 

Alex

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