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Lst week of "freedom"

MJay's picture
MJay
Posts: 132
Joined: Aug 2004

Next week starts round 3 of chemo. I quite simply do not want to do it anymore. I am tired of all the side effects the drs said I wouldn't have. I am just tired of everything. Tired of being tired, nauseated, sore everywhere, mouth sores, food tastes like crap, rashes, hair falling out, etc. Just tired. The stomach pains and nausea have been the worst of it all.

Ok.. I'm done complaining. Thanks for listening. I'll be ok. Not so sure I am going to continue with chemo. It will be a hard decision because my hubby wants me to. Thinks it is the right thing. My instincts are screaming "NO MORE!" I wish there was a crystal ball somewhere that would show me if I needed it or not.

Thanks for listening. MJay

tkd3g
Posts: 768
Joined: Aug 2004

Hey MJay. Sorry to hear you are having such a tough time of it. Chemo sucks. There is no other way to say it.

I'm almost done with cycle 2 of 4. ( 6weeks on 2off) I am so tired of it, also. I figure I'll do it till I can't do it anymore. I did have to switch protocols because I couldn't take the side effects. This 5FU/ Leuk. is much more tolerable for me. ( It still sucks , though)

I'm assuming that you spoke to the docs? About helping you with the side effects?

Hang in there. Ultimately, it's up to you. To stop or continue is a difficult choice. Search the pros and cons. I figure, I don't want to do this again, so I'm doing as much as I can handle.

Best to you. When you come to your decision, stick with it. Don't second guess yourself. Look forward, never back. That is the advice I got in a similiar situation. It is Gold.

Barb

Fitlisa
Posts: 99
Joined: May 2004

Hi MJay,

I too (surprise, surprise!!!) hated chemo (mine was Folfox 4 which went from June, 2004 to Nov 2004, every 2 weeks with a pump I wore home from Wed to Fri). I was hugely nauseated also, along with all the other things you mentioned except for the fatigue for which I am hugely grateful. I looked at the chemo as something good for me, as crazy as that may sound. I did a lot of meditating and guided imagery to ease the symptoms and it really worked! I also exercised daily and tried my best to eat well (man, was that hard and I did end up losing almost 20 lbs, which I am now having fun putting back on).

It is definitely a tough decision and I know exactly how you feel as I stuggled with the decision to have chemo in the first place. I finally decided that I needed to fight this monster with every possible weapon in my arsenal and that included chemo. I did a lot of reading, mainly books written by other survivors, and that also helped. If you want a great read, try "Cancer, 50 Essential Things to Do" by Greg Anderson. It definitely helped me.

We all wish for that crystal ball, unfortunately it hasnt been invented yet. I am a big one for being armed with information and then trusting my instincts.

I know that I havent been much help here, but come back to the board often, this is one of the best resources available and we have all been through or are going through the exact same thing.

Keep us posted,

Lisa

Moesimo's picture
Moesimo
Posts: 1075
Joined: Aug 2003

I understand what you are going through. Mine was stage 3 with 2 positive nodes. I only had 4 out of 12 post op treatments, but the side affects got the best of me. I had diarrhea so bad I had to be in the hospital. My onc.and surgeon told me to stop the chemo, I wish i could have recieved it all. So far no re-occurence. It has been 18 mos since my surgery.
Good luck with your decision.
Maureen

RunnerZ
Posts: 185
Joined: Feb 2004

MJay....Stay the Course!! I, too hated the 6 months of chemotherapy after surgery for stage 3 rectal cancer, especially after having to undergo preoperative chemoradiation as well! However, now 6 years later, and considered cured, I am thankful for the drugs. I am a runner, and hated the fatigue that went with the chemotherapy. However, that all went away within months of completing my treatment. Chemotherapy is alot like a marathon...too tough to handle all at once...you need to take it one step at a time. You will do O.K....and then you will be better. Courage!

sallyjoy
Posts: 102
Joined: Apr 2004

Hi there, not quite sure what stage you are or your particular chemo regimen, but my hubby was stage 4 with 1 met to the liver in feb 04. Had surgery to remove primary tumor in March. then started FOLFOX (5 FU/Luek/Oxyiliplatin and Avastin). He was originally supposed to do 4-5 rounds. Each round being one month of treatment which was every 2 weeks with the pump brought home for 2 days... He did 2 1/2 rounds which was 5 individual treatments. He hated it and it got worse as time went on. He finally said, thanks but no thanks.. He had mouth sores, nausea, diarrhea, acne like rashes, tingling in his mouth and feet, sensitive to the cold temps, didnt want to eat, couldnt be in the sun, etc...

I backed his decision to stop the chemo. They did scans which showed it had reduced his liver met and he had his liver resected in August. The drs. asked if he wanted to continue his chemo to which he said No. In Nov/Dec.. his scans are clear. His colonoscopy is clean. He is in remission. He also worries about what the chemo can do to other organs etc. He said he will do more if it comes back, but til there is something to shoot it at, he'd rather feel good, and I don't blame him. In the beginning, he told me he is not afraid to die... but he is afraid to suffer... and I back him up 100%. I dont want him to die, but I surely dont want him to suffer anymore than he has to...
Like I said, I dont know what your situation involves, but it is your body and your life. Hopefully your hubby can come to understand your wishes if you decide not to continue chemo. I was afraid for my hubby to not do chemo, but on the other hand I was afraid of what the side effects would do to him, so in the end, I let him make up his own mind which is all we can do and be there to support each other. Best wishes to you. Feel free to email if you'd like.

God Bless...
Sallly Jo

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

Hi MJay. I did 6 months of 5fu/leuc and was told the side effects effect everyone in different ways. I was also told that they "may" be minimal. I must have drawn the short straw MJay because I had some bad reactions. In the last 2 months I used to literally crawl in a corner and cry(yup--big macho guy I am!)
Jen was beside herself watching the poisons do there horrid stuff on me. The last 2 courses I had Jen or a mate with me in the clinic and I am not ashamed to say one day I just totally went to pieces--lost the plot!!!!
You control what is done to you MJay!!
I did contemplate ceasing my last 2 courses but decided to struggle on. If I had to do it again I would but whether I would go on with the full course is another matter--hopefully I will never need to decide that again. Even tho I only did 5fu/leuc. I started knowing the oncologist said it would be relatively easy--it was not. But to give me a better chance of NED I knew I neede all the help I could get. I am in remission now for 10 months.
Weigh up the good and bad points MJay and ask yourself if you can tolerate that extra discomfort--only you know.
luv n huggs, kanga n Jen

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

Boy, MJ,
I could have written your post before I began my 3rd round of 5 FU (love the name!) and leuco. My fatigue was amazing to me...and I HATED my first onc for calling it "drive in, drive out, go home and cook dinner!!!". I ended up switching to another office; I needed a doc who listened, not one who barked cheers at me. I took a leave of absence from work.
My fatigue left me feeling "velcro'd" to my bed...a description that I read and felt was SOOO right...I could lie in bed and stare at a spot on the ceiling for a loooonnnggg time. I didn't loose the hair on my head...everywhere else, though....carried an eyebrow pencil in my pocket for all the wipe away mishaps. My teenage kids would find it amusing and tell me "Mom, Whoopee Golberg, left", when I would accidently smudge one off. I lost nearly 20 pounds; hadn't weighed so little since college. Mouth sores and split lips were bad, too. My boss called on the day of my last treatment to say they would not have to hold my job any longer. I did take an extra week off before my last course due to diarrhea. It all stunk, but I felt that I had to fight poison with poison.
BUT....I'm here to say that I will be 6 months post chemo on January 9, I'm at a new job that I love, back at the gym, feeling nearly like the old me and glad that I was able to do what I did.
Hang in there; you CAN get through this. Make sure your onc and the nurses know what you are going through. If it IS too much, let them know that, too.
We are all walking with you in spirit, Judy

JKendall
Posts: 186
Joined: Nov 2004

Hey MJay...I agree. This sucks. My wife is going thru radiation/chemo and is miserable from the side effects. She's finished two weeks and has four more to go.

On Christmas she was so sick she stayed in bed all day, except for dashes to the bathroom for the diarreah. She didn't have to rush too much for the puking...she carried a little plastic trash can with her. Yeah, buddy.

She's also having the severe stomach pains...stabbing sudden pains. And nausea. She had an IV treatment today with nausea med in it.

She's also looking for the crystal ball, or a good Magic Eight Ball. Jerri's not sure she wants to go any farther with the radiation. Her instincts are telling her NO MORE also. (By the way...you women and your instincts scare the hell out of me! How do you do that???) Jerri's tired of everything too.

I'm not much help, but I hope all goes well for you. It's your decision, and we'll support you with the one you choose. This definitely sucks. Good luck and please keep us up on what goes on with you.

Jimmy

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

MJay -

Hang tough, darlin' for as long as you can... I don't think you'll find anyone here who enjoyed chemo, so we've all got your back on that one.

Hopefully folks at home are helping out so that you are getting some relief. If they aren't tell I'm gonna come kick 'em in the butt if they don't get to helpin'.

Stay the course as long as you can and be sure to tell the docs how you feel. Any fight worth winning will be a difficult one. Remember what the gym rats always say; "No pain; no gain"

Vent anytime. That's what we're here for!

- SpongeBob

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