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Off Xeloda for 2 wks..maybe forever - UPDATE

Jaylo969
Posts: 827
Joined: Jan 2010

Just an update: I was dx'd in Oct. stage II.Surgery & resection. I have finished 9 tx chemo in all...5 Folfox and 4 Xeloda.
I have had just about every side effect from both regimens EXCEPT the common diarrhea & nausea. My eyes are dim, my ears are deaf, I have chemobrain, red *spots* on various areas of my body, peripheal neuropathy, red hands, red/peeling/nasty feet, inflammation in my colon and all the way from my cervix on down, mouth growth & sores, swollen feet/hands/legs, constipation, anxiety, and weight gain. Did I miss anything:)??

Ok, yes I did miss one. All of the above I could deal with but the one bad mama ( fatigue) has become so extreme it is almost too taxing to breath.

Went to the onc today, regular appointment, and she has decided to give me a 2 week break from Xeloda in hopes that I might gain enough stamina to finish the last three rounds.She told me that I have been on some kind of chemo for 6 months now and that the standard 12 treatments is just a guess on their part. She thinks I have had ENOUGH! I really want to try for the 12 but that decision will be made in 2 weeks when I go back & depending on how well I am doing after the 2 week break. I asked her bluntly if it were her would she continue the chemo and without a moments hesitation she said "Absolutely not!"

I would appreciate your thoughts/input on this.Thanks!

-Pat
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UPDATE:

Hi everyone.

I have mostly been away for the past 2 weeks, gathering a little strength and stamina. I have visited the site from time to time and left a couple of posts...but mostly I have just been chilling, trying to decide whether to try to finish up the last 3 treatments.

Some of you asked for an update when the decision was made. I went to my onc today and I have officially finished my chemo program. She thinks that IF it recurs it would have, no matter what, at this stage.She again told me in no uncertain terms that if it were her in my situation she would not do anymore chemo. I have to have confidence as she is an A+ doctor.

So, stage II,histologic low grade,26 nodes negative, 5 tx Folfox, 4 tx Xeloda, bloodwork always good.Time to quit punishing my body with more chemicals that my body is strongly rejecting.

I haven't had any chemo for 3 weeks now and I am amazed at how much better I am already feeling.My mind is even coming back a little bit :)

I hesitated to make this update because so many are suffering and hurting and we have lost so many just in the short time I have been here. But, it might be helpful to someone so while I am happy for myself I certainly feel the pain of others and just wish I could do more.

-Pat

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

That sums it up very concisely, Pat - you covered all of the signs.

A break from time to time is good to refresh your mind and body and give you a glimpse at your future.

It's hard to speculate on whether to finish or not - in 2 weeks you will have some more info to help you decide what's the best path to walk down.

I know Folfox was hard on you - and it sounds like the Xeloda has not been easy for you either. 3 more cycles can seem like an eternity based on how one's body is handling the treatments. What's easy for one, is not necessarily so for the other.

Perhaps, they can switch you to a 7 on - 7 off routine with 3000 mgs daily - 3 by morning and 3 by evening. I found when we switched from 14/7 to 7/7 it helped me to finish out the Xeloda and call it a day - before we call it something else, LOL:)

Enjoy your break and then see how things are looking for you. There is a never a right or wrong answer - only what your body can tolerate.

I'll be anxious to hear back from you!

-Craig

abrub's picture
abrub
Posts: 2088
Joined: Mar 2010

Pat, I quit Folfox after 7 (only 5 with Oxali) - I couldn't tolerate the side effects, but in my case, they stated that they could never know if the chemo was helpful. I was NED post-op for Stage IV appendix cancer.

One of my oncs said that after 7 rounds, I'd been through enough - that there was a limit to the amount of suffering. My primary care physician is a cancer survivor (breast) and she encouraged me to quit, my husband wanted me to stop, tho ultimately the decision was mine alone. However, none of my drs pressured me to continue - all respected my decision. Frankly, the 12 treatments is a rough idea of what is ideal - you may be fine with fewer. I'd heard 8 was adequate.

I considered the unknown benefits against the known ever-increasing side effects, and wondering at what point they would become permanent. The potential benefit wasn't worth it to me. But I emphasize that was my decision - you have to weigh it for yourself.

You need to think it through; I think your onc's comment should be given strong weight. However you have to be comfortable with the decision, and have no second thoughts. Even if/when my cancer comes back, I know that I made the right decision for me in quitting.

Think it through, talk it through. Hopefully others will respond here with their experiences.

Alice

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

Go with what the Onc said. Get off it.
Kerry

Jaylo969
Posts: 827
Joined: Jan 2010

Thanks so much for your kind, thoughtful replies. I don't know why but I was half-way expecting to be told to bite the bullet and quit being a wuss! Should have known better. Nothing like talking to folks who have "been there, done that".

I suspect that the autoimmune disease I have is part of the reason I am not tolerating the chemo very well.My Mother in Law told me that if I made up my mind that the chemo wasn't going to get me down then it wouldn't affect me like this. I cried, I was so hurt. I did make up my mind to be positive and be a "champ" 7 months ago but my body seems to object to that line of thinking.It is screaming "Enough Already!"I feel like I have fallen into a deep, dark, hole and have no energy to climb out this time.

Anyway, just wanted to say thanks. Y'all are some cool folks;)

-Pat

lesvanb's picture
lesvanb
Posts: 911
Joined: May 2008

"My Mother in Law told me that if I made up my mind that the chemo wasn't going to get me down then it wouldn't affect me like this."

Hey Pat

All the positive thinking in the world can't do away with the physical toxic effects of potent drugs on the body. I always appreciated that my onc was concerned about my quality of life after all the treatments. And yet with all the monitoring and taking the supplements to counter the toxic effects (like R-lipoic acid),I still have pins and needles in my feet from the oxaliplatin (my last treatment was a year ago). These drugs are serious. Listen to your onc.

Hang in there!

all the best, Leslie

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AnneCan
Posts: 3692
Joined: Oct 2009

The comment from your MIL was totally insensitive; you sure didn't deserve that. Chemo seems to have a "mind" of its own. Keep up your spirits, + take good care!

robinvan's picture
robinvan
Posts: 1014
Joined: May 2007

I am so sorry to hear of all the side effects you are suffering. I don't think I could say anything that would add to what has been said by others.

I've been on 3 different rounds of chemo over the last 6 years. I have an excellent oncologist who is considered one of the best in Canada. Because I have great respect for his skill, his experience, and his knowledge, and because I have witnessed and experienced his compassion, I trust him very much. I have never doubted that he is acting in my best interest. So, I pretty well always tend to follow his prescriptions and advice.

It certainly sounds like your onc is acting in consideration of your best health when she says ENOUGH! I would be inclined to listen to her. And if you do accept her recommendation don't be beating yourself up with a bunch of second guessing. Accept it from the perspective that you FINISHED your chemo program. PERIOD! And enjoy the life to come! Be relieved it is over. Be thankful you are NED. And ENJOY cancer-free living!

Be well... Rob; in Vancouver

zenmonk
Posts: 198
Joined: Nov 2009

Make sure that you give the decision to stop some serious thought. You dont want to have any regrets on that one. Reading your discription of the side effects you have had is like reading my life story. My oncologist tells me that he meets very few people who end up having absolutley every possible side effect known but I am one of those people. Just cant catch a break.

Jaylo969
Posts: 827
Joined: Jan 2010

bump...guess I didn't do the update properly;(

Lifeisajourney
Posts: 217
Joined: Apr 2010

I am Stage 3 with 3 positive nodes. Dx 12/8. I was scared to death of chemo, but saw so many others manning up, I got positive and went for it. I thought I was dying or having a stroke, by 7th course of Folfox. They ended up taking me off it. Falling, talking like a duck, funny walk, tired, etc. bad scans. They said I had to come off it, and I felt like a wuss, but off it I went, after they checked me out in hospital for 10 days. I hit the wall, lost my hair, taste, but off since 5/09 and other than bad neurapthy and chemo brain, I am alive and with full head of hair, life did come back, but it took about 4 mos.
So far so good but I still hope I got enough to do the whole job.I remember telling my onc I didn't want to die from chemo, but the alternative isn't great either. So enjoy and believe in your onc and hope for the best as we all do. Pat

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

Pat I say listen to your onc....if she says enough then you can go with enough! Over the years I have done 3 sessions of chemo....I think the only one I finished was xeloda. Honestly Pat not for one second did I think .....oh if only I had finished....

relax enjoy heal

congrats for getting though the chemo you did....no regrets :)

mags

AnneCan
Posts: 3692
Joined: Oct 2009

Pat,

Thanks so much for the update. It sounds like you are on your way to "normal".

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

Hey Pat. Thanks for the update. It really is a great feeling when the fog of chemo brain begins to lift. So glad to hear that you are feeling better. Sounds like you made a careful decision - and the right one. What's the plan now? Take walks? Live and be happy?
Lot's of happy sparks to you.
Roger

Jaylo969
Posts: 827
Joined: Jan 2010

You good folks are the best. I truly value your input and experience.

Pat - I'm sorry I missed your entrance to this group but let me give you a belated welcome and appreciation for your input.

Mags - you ALWAYS talk 'good sense' talk ( southern for you speak with good sense ). I always love your upbeat posts.

Anne - Your concern and care for all of the members has not gone unnoticed.Bless you!

Crow - Friend, Thank you! Yes, the fog is lifting and a good thing too because my friend who is a nurse just suggested that I go & have a brain scan. She hasn't much experience with chemoheads..LOL! Yes Roger, I have been walking, gardening, and sweeping up 7 month old dust bunnies. Sometimes I am good for 10 minutes, sometimes a couple of hours, but it is all good.I am still sending sparks for you and your family and hoping you are improving every day.Good to see you back posting.

-Pat

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