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Whats worse, cancer or chemo?

bryancarson's picture
bryancarson
Posts: 47
Joined: Jan 2004

Well, I'm on my secound bout with this horrid disease -- this time mets to my liver. I am on the Folfox treatment (Leucovorin, 5-FU, Oxolipaton, and Avastin) and I am NOT tollerating it well. Even after the adjusted my dose, I'm still sick and puking for 5 to 6 days after treatment. Before i started treatment, the doc said this is a treatment that most tolerate well. I guess not with me! Has anyone else had severe side effects including neuopathy, nausea, and EXTREME sensitivity to cold? (it feels like I am swallowing liquid nitrogen when I drink anything colder than tap water) I would love to hear what anyone is doing to combat side effects. I really don't know what would be worse, dying of cancer or living through chemo for another six months (of course I know the answer and don't plan on giving up my fight) but when you're laying on the couch watching unending Oprah and Dr. Phil shows, sometimes you'd just rather breath your last! Any advice?

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Hi bryan,

Well rather than give up and breath your last you could give up chemo and try something else!

Most of you know where I stand by now and will continue to tell you, and anyone who wants to hear that there ARE other OPTIONS! And ones that don't make you puke, have hot/cold sensitivities, neuropathy, hair loss, extreme fatigue, fear of secondary cancers, nausea, etc etc.

That's my advice. :-)

peace, emily who will be here until she breathes her last expounding the virtues of looking outside the allopathic box for health

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

PS

Chemo scares me more than cancer

lhsteer
Posts: 28
Joined: Jul 2004

please email me at lhsteer@aol.com and give me some other alternatives I have bought the book by Guilian beating cancer with nutrition am doing the carrot juice bought a juice maker so trying to do all the right things please email me and tell me what else I can do. karen

GrandDaughter
Posts: 1
Joined: Oct 2004

In looking for alternatives look up the Oasis of Hope on a search engine, and the Issels treatment. My grandpa survived fast moving bone cancer and is strong, healthy and cancer free thanks to the above mentioned alternatives.

jsabol's picture
jsabol
Posts: 1156
Joined: Dec 2003

I'm sorry to hear that you feel so sick. Is your onc aware of all the side effects and their severity? It may be that some dosage or frequency adjustments may help.
My chemo was 5FU and leuco, so the side effects were less; hope that some others out there have more specific suggestions.
Meanwhile, good luck to you; I know what yu mean about the laying on the couch part. I would force myself to get out and walk around our little circle; any amount of exercise seemed to help.
Hang in there, Judy

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

hands down, the chemo is worse than the disease; it kills every living cell if you take it long enough. I was on the same chemo protocol as you minus the Avastin, and had ALL those side effects and more. Couldn't go past 8 rounds. There is no miracle to these drugs-it's often a choice between which will kill you first.
I tried almost all the anti-nausea etc. meds with not much more than additional side effects from the anti-meds..I am still suffering some ill effects 4 months after going off Folfox. Two things helped partially; Avitan and IV fluids-it is very important to STAY HYDRATED. Also talk to
your Doc about a reduction in dosage. And, last
but not least, listen to Emily. Bud

spongebob's picture
spongebob
Posts: 2600
Joined: Apr 2003

Ahoy, Bryan -

OK... I can relate to the puking for days on end, just not as a result of chemo (hazards of a job at sea). Having grown up in Cleveland (GO BROWNS), I can appreciate sensitivity to cold, and I like to drink my Jagemeister at the temp of liquid nitrogen. A few suggestions:

1. RENT DVDs! Just watching ONE Dr. Feel is enough to make me want to breathe my last! Of course there is something to be said for the benefits of being able to lay around all weekend during football season and then on Monday as well during the ESPN weekend recap...

2. (Oh, jeez... I'm gonna sound like EMily here...) Have you tried putting a few drops of white ginger oil on the underside of your wrists? I have the new kids on the ship who get really saesick do this and have actually had some good results. Can't explain it (maybe Em can), but it seems to work. Something else that seems to work (more Eastern medicine magic) is that little wrist strap (no, not the Lance Live Strong one) that presses on your wrist at some sort of Feng Shue center of your body's universe point.

3. Bud is right - remember the purpose of chemo is to kill yourself and hopefully the cancer will die before you do. (Emphasis on the word "hopefully")

Hang in there Bryan - drink lots of H2O - and know we're all behind you. Remember, if you're going to heave, do it over the LEEWARD rail!

Keeping you in my prayers, bro.

- SpongeBob

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

hey SB!

You're learning good old boy!

Ginger is an anti-nausea agent and is excellent for the digestive system. I put it in my carrot juice--anything healing for digestion goes into my regime.

Ginger is given to preggie chicks during that first nauseating trimester....tho wish I had known about it 20 years ago when I couldn't get my head off the loo.

Ok, who the heck is DR. FEEL???? (is that one of your kinky flicks?)

bryan, hang in there and if you want some good reading material for your couch surfing:

A Cancer Battle Plan by Anne Frahm
The Makers Diet by Jordan Rubin
Beating Cancer with Nutrition by Patrick Quillin

When Hope Never Dies by Marlene McKenna
It's Not About the Bike by Lance Armstrong

Keep in touch here, eh?

peace, emily who can't imagine what it feels like to be wanting to die from the thing that is supposed to help

Chrisswife
Posts: 50
Joined: May 2003

I'm so sorry you are having such a tough go Bryan. My husband Chris was diagnosed in the spring of '03, he went on Leuco/5FU/Oxi. Like you he did not tolerate chemo at all well. The cold sensitivy was very severe - I remember him recoiling in pain after touching the fridge door; he sid it felt like an electric shock. And I remember that I used to keep his liquids at room temperature but even then I'd warm them slightly in the microwave before he could tolerate them.
The nausea was very very difficult for him as well although they tried out several anti-nausea meds until they found the right one and the right dose (the Rx names escape me unfortunately.)I would certainly encourage you ask your doctor about options - there is no reason you should have to endure vomiting on top of everything elese you are going through.
Chris's cycle of chemo was a bleak time - we called him "WC" or "Worst Case" and in "Worst Case Scenario" because of all the side effects he had on a regime that he supposedely should have tolerated well. I was frustrated and scared. The people on this board were so encouraging and helpful but I turned away for a time because I couldn't bear to read the playful joking posts (This is CANCER, don't they know that this isn't funny?!)
But, Chris got through it as will you, he got well and we both regained our sense of humor.
My prayers are with you Bryan, keep us informed of your progress and keep that fighting spirit.
Kindly,
Misha

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

No, Cancer isn't funny, but then Norman Cousins or Saranne Rothberg-(Founder of Comedy Cures;http://www.comedycures.org/) would come to the defense of SB and others who sometimes bring humor to people who need it; to them, it's therapy. Research-(Loma Linda University-Berk) supports laughter's benefits in an otherwise seemingly hopeless situation; although it's difficult to laugh at your situation, the alternative can be a deep and destructive depression. Bud

Chrisswife
Posts: 50
Joined: May 2003

Exactly Bud - the quirky humor and goofy good cheer of SB and others on this board has lifted me up many many times. That is why I still lurk around this board although I rarely post anymore. When things were darkest for Chris and me I forgot how laugh. SB was one of those who helped me to remember. You will never catch me trash talkin the one who lives in a pineapple under the sea.

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

Which is why we watch "Whose Line is It?" with Drew Cary. HILARIOUS!!!

hahahahohohohhehehehe!

peace, emily who laughs at dumb jokes (if she gets them)

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Bryan--feelin for yah buddy--just can't put that into words mate. Several times I have said on the board that I used to drink "ginger ale, or ginger beer"--whatever yu guys call it over there. It helped heaps with the vomiting and nausea, BUT , it must be opened and left for a couple of hours to go "flat", meaning it needs time for the gasses to escape. According to Emily ginger is a help with nausea and I agree. I also went to a health shop and purchased some "crystallized ginger"---it is a sweet(however it does contain sugar so Emily will probably not approve. This sweet really does help with vomiting--well, it did for me.
Our very best Bryan--luv n huggs, kanga n Jen

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Misha-nice name!!!! I guess I fall into the "kinda humourous" category too.As a survivor now in rem. for 8 months I do understand the seriuosness of our ilness and I guess sometimes my "humourous" remarks may upset some here.I hope the humourous side of things never upsets anyone--that would surely upset me. It is in my nature to try to make light of some things but I can be serious as well and try to relay that, hopefully in the right topics at the right time. I am glad that you make allowances for myself and SpongeBob because we really do care--we just try to put an occassional smile on some sad faces.Do keep posting--every little piece of info here is a godsend to all of us. We sincerely pass on our love to both you and Chris, Misha. Jen and I know all the fears you are facing.
luv n huggs, kanga n Jen

ron50's picture
ron50
Posts: 1319
Joined: Nov 2001

Hi bryan,
Both of 'em. I went the way of chemo,I figured if I had a life threatening disease it would probably take a life threatening cure to kill it. I was dx back in 98 with st3 colon with 6 bad nodes, I had a year of 5fu and levamisol(now there is a drug to make u feel ill,it is a cattle drench but hey I don't have worms!) So i am coming up seven yrs ca free so naturally I am happy with my decision. Mind you if I had have watched Oprah and Dr phil and only lasted a year it probably would have seemed like twenty,good luck whatever you choose ,it is your body and your choice ,my thuoghts will be with you ,Ron.

Niki6
Posts: 2
Joined: Nov 2004

Dear Bryan-
I went through the same treatment and experienced many of the same side effects that you have. My doctors put me on Emend. It is a newer pill which combats the nausea. It worked great. I was able to eat during my chemo treatments. I was diagnosed in April with Rectal cancer. I went through chemo/radiation in April/May/June had surgery in July and then more chemo in Aug/Sep. I currently have an ileostomy and I go in next week to have that procedure reversed!

The good news I have for you is that the side effects wear off. The sensitivity to cold especially in the fingertips, takes a while to get rid of. I found that after several days of being off my chemo, that I could tolerate cold liquids and that side effect eventually went away. I would remove items from the freezer with gloves and drink room temperature liquids.

Keep up your fight! Good luck, it does get better.

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