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NEED OPINION PLEASE

minibull
Posts: 56
Joined: Oct 2009

Hi Everyone. I'm still around lurking but I need your opinion on my soon to be decision.
I've finished 11 tx of Folfox with some major neuropathy in my feet and hands. Also had some sores on my lip but nothing that can't be tolerated. However, I feel that my body is telling me ENOUGH ALREADY so am thinking of stopping my chemo now. Asked my doc but he said nobody knows whether 6, 8, 11 or 12 tx is enough. In fact, a clinical trial will be starting to see whether 6 tx will be enough instead of the full 12. Anyway, am debating whether to take my chances with only 11. Do you think that 1 more would really be worth it? Thanks for your thoughts.
Laureen

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SandyL
Posts: 220
Joined: Feb 2009

but husbands oncologist stopped him at 11. Said that if 11 hadn't done it; the #12 isn't gonna make a difference. Husbands blood count was low, and that played in to the decision. We have the utmost confidence in the dr. and felt that what he said made sense.

We were contemplating taking grandson to MN for a vacation at the time; and due to the low blood count dr. suggested waiting a week for the last tx. When he realized we had made plans and this would throw a wrench in our plans; he said "well let's call this enough" and then went on to explain. And husband was stage III. So far, so good. NED at this point.

These decisions are not easy to make; but I hope that you feel confident enough to make that decision based on your body and your drs. opinion.
Sandy

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msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

This symptom of yours sounds like what I used to call the chemical bubble. I felt like i was completely encased in bubble wrap or something and knew that if I didn't make my way to the bed NOW i was going to be stuck someplace uncomfortable for quite a few hours. I didn't always sleep, but I wasn't able to move much and would have the strangest thoughts course through my head. Usually it lasted about 4 hours, then would just go away. As I was coming out of it i would start fantasize about eating some of the craziest food, which I of course didn't have around the house. Once it finally wore off, I would be hungry, but would eat something sensible. Chemo does suck and I don't miss any of it. I was on FOLFIRI.
mary

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I think you have to ask yourself that IF it came back (which I hope it doesn't) would you beat yourself up for not taking that last treatment.

I feel that if I did 11 and had 12 to do that I would do the last one unless it was totally intolerable. I know that when it gets so the end of treatment is in sight that it is hard to go those last times.
Best wishes to you
-phil

pluckey's picture
pluckey
Posts: 484
Joined: Jul 2009

I think Phil has a very very valid question.

I was on weekly chemo from April 2009 February 2010. I had a very good response to chemo, had my share of side effects and other issues due to ileostomy. My onc said all along I would probably be on chemo a year and will have been on all cc chemos until they didn't work any more. Sprinkled in that year were several hospitilizations, infections, blockages etc that forced some multi-week breaks from chemo.
I used to panic that wasn't on my regiment because I was having such sucess shrinking the mets in my liver.

I then had a liver resection this March and resumed chemo in april. It was suggested a 3 to 6 month post surgery chemo "just in case". I just stopped chemo after 2 months, about 4 more rounds. I felt ready to let go of the crutch of chemo and just start living again.

My long rambling point is: My onc has never been emphatic about the number of rounds of chemo that are the magic number. She even stated that there is little research and accepted standards for stage 4 folks as I was, with major mets to liver. I think she just picked the right cocktail for me (5FU, erbitux, ironotcean) from the beginning and I responded.

Phil said it best. What's your gut feel? Everyon'es threshold is different. Maybe you just want a few week break and then do the last one?

good luck wiht your decision.....((hugs))

Peggy

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

Only you can make that decision but you have done 11 treatments so why not do the 12th and last one. I echo Phil's advise.

Take care - Tina

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

Re:
"my doc but he said nobody knows whether 6, 8, 11 or 12 tx is enough"

And:
"my body is telling me ENOUGH ALREADY"

What makes the fear of cancer so much worse, are comments
that can cause you to doubt your own intuition and instincts.

We were born with the basic instincts of survival, just like any
other living thing, why doubt those instincts?

The idea that you should continue something, regardless of your instincts,
or even of your doctor telling you....... for the sole reason that:

"you won't want to look back and wish you did"

Is a horrendous excuse to do anything that you feel should not be done.

I get sick reading about so, so many of us here, that have gone
the full monty with chemo and radiation, and having so much damage
from the side effects, only to have cancer return to kill them. But that's
the nature of this insidious disease.

How many will "look back" and wish that chemo and radiation
were refused, rather than accepted as treatment; to not have been
made to be so weak from treatments that their own body was unable
to fight what had to be fought?

Both chemo and radiation -can- do wonders, and they both can
also do irreparable harm. Knowing when to start, is as valuable
as knowing when to stop.

Know thyself; Trust in yourself to make decisions that will be
best for you. Don't allow fear to drive you and instead, allow your
own sense of self-preservation to be your guide.

For those that feel that one can be "blessed from above", should
know that we all have been blessed with common sense and survival
instincts. They came with the body we're in; it was a B.O.G.O. at the
time of purchase. Trust in it, don't doubt it, and don't allow anyone
to convince you otherwise.

There are pharmaceuticals withdrawn from sale after years of use,
due to the lack of oversight and truth regarding safety at the time
they were allowed to market the stuff. Many of those pharmaceuticals,
like Vioxx, have caused death.

My wife was convinced by her RA specialists, long before we knew
that there was other than western medicine to turn to, that those drugs
were safe. My wife's ruptured cerebral hemorrhage was a direct
result of taking Vioxx.

Her intuition was screaming at her not to take it, but her doctors
convinced her otherwise: "It is the only cure", and "you don't want to
suffer the consequences of not taking it, and wishing you did".
She will forever wish she didn't.

I can't say this often enough...... Don't allow fear to drive you into
doing things you "feel" aren't right.

If whatever you're doing: chemo, TCM, juicing, etc., isn't doing
you well, do not be afraid to change paths.

If you feel what you're doing is making you too sick to fight,
it probably isn't too good an idea to continue.

And far &^%^$ sakes...... when the doctor you are trusting
is agreeing with you, maybe that doc should be listened to.

These boards are great for peer advice, but some here put
every ounce of their belief in one medical practice. That's
fine to do, IF it is working for them. But to continue with
that belief if it begins to fail them, is not a good thing to do.

I may favor TCM, but if I find it failing me, I -will- do something else.

Blind allegiance in other's opinions could cost you your life.
We have to know when to stop; we have to have the courage to
trust our own instincts; to listen to our own body.

Don't listen to -me-; listen to -you-.

Stay well.

John

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

Laureen, ask you r onc, about take the oxi out of your formula and replacing it with something else, this may work for you, i had alot of nerve damage so i changed and it is getting better. you just need to ask what your options are, and go with your gut feelings, the nerve damge will heal itself over the long run, and you can take some vit. suppliments to help.
Winnie

Lifeisajourney
Posts: 217
Joined: Apr 2010

of the folfox. I come here everyday and read everything and appreciate all opinions and post only once in awhile because at this moment I feel blessed to be Ok and so many have been thru so much. I feel like folfox could have killed me, it didn't because my doctors stopped it at 7. I too felt I had to get to thru 12 and tried, but onc. said no more. I had always told them I don't want to die from chemo, but so far the chemo has been my biggest issue. They cut the cancer out as best they could and it may be lurking or traveling, but the chemo has done a number on me. But, if it comes back I'll probably try something chemical again. I know John thinks I am crazy and I wish I had his strength and conviction and maybe when decision have to be made, I'll say enough, I think about this daily. After surgery I felt normal, after chemo, I have never been normal, but I am alive and this is a personal decision we all have to make. I hate to post because sometimes I feel negative and I should be positive because I am still here and breathing, but bottom line the onc should help with decision, they have the info on you and we just have to trust their judgement once we go that route. Everyone has to believe their choice is right and I might not be normal after chemo, but I am alive and future decisions I will live with also. Someday cancer maybe a chronic disease, right now they are working on it. Trust yourself and your onc.for making a decision. Sorry I sound like such a pansy. Pat

PGLGreg's picture
PGLGreg
Posts: 741
Joined: Jul 2006

I can't think how to help with your decision. Your doctor is a good authority, but it sounds like he doesn't really know. Whatever you decide, it's good that you're so close to being done with the Folfox, so congratulations on that.

--Greg

Sandi1's picture
Sandi1
Posts: 278
Joined: Aug 2008

Maybe you just need a chemo vacation (as my husband's oncologist calls it), that helped my husband - gave him a small two week vacation to give his body a chance to heal, when he went back he was better and able to handle it better. Just a thought!

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Laureen,

You are smart to ask for opinions. Stopping chemo early or not doing chemo always bring lots of them here. I remember when I was on Folfox back in 04' with my start being on Thursdays with my "unhook" day on Saturdays. I had a wedding I wanted to go to on a Saturday so I asked my Onc to reschedule it from Thursday to the following Monday. He pitched a fit and gave me a stern lecture until I lashed back asking him if he really thought my cancer cells knew the difference between a Thursday and a Monday!!!!. He started laughing and rescheduled me.

Some entire countries stop folfox treatments at 3 months (6 treatments) and their stats aren't any different than ours. I stopped chemo way before I was supposed to and it has been fine for me so far. BUT you have to ask yourself that if you should (I hope not) have a recurrence, will you beat yourself up over it? You really have to be okay with whatever may happen if you do choose to stop early.

You've gotten some great feedback here. Good luck with your decision.

Lisa p.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi,

I stopped Folfox after 10 treatments. I forgot what stage you are- that could make a difference. If you are a stage 4, then maybe you need to keep going one more time. If you're less than a 4, I'd stop now. Even if you are a stage 4, though, I think I'd listen to your body! You don't need more neuropathy!

Best wishes to you,
Lisa

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minibull
Posts: 56
Joined: Oct 2009

I know that this is a decision only I can make. I actually had the oxi out from the 10th treatment because my neuropathy was getting too bad where I was dropping things. I feel that my side effects were pretty mild compared to what some of you have been going through. However, like most of you I don't really have a life during chemo week and I hate that I couldn't plan anything for that week.
Lisa, I was dx'ed stage 3A last Oct. with a colectomy removing the tumor and subsequent abdominal CTs (2) showing clear. My onc will be scheduling a chest CT at the end of August but he says the CT doesn't show any cancer cells so nobody really knows whether one is "cured" until enough time has passed. Do you really think staging makes a difference in the amount of tx?
One good thing that happened with this cancer dx. My blood pressure is awesome (good), my cholesterol is normal and I'm no longer a diabetic. My internist has taken me off all my pills! Now if this cancer stops knocking at my door, I'll be in better shape than I've ever been.
Laureen

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