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after effects

kangatoo's picture
Posts: 2115
Joined: Feb 2004

In response to Susanbm and nanuk. Bud proposed that it might be usefull if we list after effects of chemo drugs. We have all learnt here that everyone has different reactions to chemo and also all of us by now have a pretty fair idea what to expect while doing chemo.It may well be of benefit here for us to list the chemo administered and list the ongoing/longevity of the side effects.....or....the more unusual effects some suffer. I am referring here to the effects AFTER patients have discontinued any chemotherapy, not necessarily other medications.
So maybe I better start by rolling the ball.
note*....I think it would be prudent to give a short pre-dx description of lifestyle as well.So here is an example.

kangatoo's picture
Posts: 2115
Joined: Feb 2004

Lifestyle; very active and fit all my life
Pre-dx Activities; sailing, go-karting, line dancing, cycling(the pedal type!),gardening/landscaping
Chemo; 6 mths. 5fu/leucovorin, completed feb 04
After chemo long term effects;
some insomnia,easily fatigued,joint pain(fingers,shoulders), forgetfullness, poor eyesight(needed to get spectacles)
None of these effects existed prior to dx and I try to walk daily to keep fit with some dancing as well.
Doctors response; aging, arthritis
I am 50.
cheers, Ross

Posts: 768
Joined: Aug 2004


Lifestyle: very active and healthy all my life.

Pre DX activities: Martial arts, bicylcing, gym rat, anything outdoors.

DX: Stage 3 Rectal CA. Age at diagnosis: 42- Female.

Treatment: chemoradiation - 6 weeks ( 5FU continuous pump).
Chemo - 3 treatments of modified FOLFOX-6 ( 5FU, Leucovorin, Oxaliplatin) stopped. Side effects too severe. Finished the next 6 months with 5FU and Leucovorin.

After chemo side effects : joint and muscle pain: particularly the hands and fingers, legs and feet.Fatigue and memory loss.Instant menopause, with it's list of wonderful after effects.

I was never sick before my diagnosis. I didn't (and don't) smoke, drink, or do drugs.Was about 7 lbs. overweight.

Doctor's response: arthritis. Oh, and my weight gain of 40 or so pounds after treatment, as the doctor says, " I doubt that had anything to do with your treatment." ????????????????????????????????????????????????????????????????????????????????????????

Barb - (who SO wants to be healthy again)

kerry's picture
Posts: 1317
Joined: Jan 2003

Ok, I guess I'll jump on this band wagon too.

Lifestyle: very active, golf 2 - 3 times per week, gardening, painting, traveling

DX: 12/02, Stage 3, 2 nodes pos. surgery, 6 mo. chemo of 5FU, leukovorin, cpt 11, side effects of nausea, vomiting, diahrrea, fatigue, insomnia, bloating, intestinal discomfort, irritation of the bowel lining which resulted in high fever, elevated liver enzymes.

Enjoyed 14 mos. of NED, then found lump in my neck. PET scan showed many nodes lit up from my neck to my abdomen. Biopsy confirmed cancer had returned in lymph nodes, no other organ involved.

Dec. 1, 2004 began 4 mos. of Oxaliplatin + Xeloda.

All involvement from neck down to abdomin disappeared except for a couple of stubborn nodes in ab. area. Side effects: neuropathy in hands and feet from Oxaliplatin, elevated liver enzymes, peeling skin and loss of toenails from Xeloda.

Taken off Oxaliplatin and kept on Xeloda + Celebrex for 10 more months.

Pet Scan showed 2 nodes in abdomen so went on radiation therapy (plus Xeloda and Celebrex)for 6 weeks. CEA dropped in half from 7 to 3.5 after 3 weeks of radiation. Side effects: nausea, vomiting, FATIGUE and lots of it, burns on my tummy and back.

Waiting for next scheduled scan to see if I am NED. Side effects are going away and I am beginning to feel normal again.

Posts: 185
Joined: Feb 2004

Here goes!

Very active all my life. Ran marathons and excercised regularly. Diagnosed with stage 3 rectal cancer at 36. Preoperative chemoradiation, surgery, then 6 months of chemotherapy (all 5-FU, diagnosed just before other chemotherapy agents came into play).

I ended up in the hospital during the preoperative chemoradiation with an infection and no white blood cells to fight it. Lost 30 pounds post-surgery. Had stomach and digestive issues during chemotherapy, made more difficult by my shortened bowel. When I ran in the morning I made sure I was never too far from a bathroom!
Now more than 7 years later I believe that I am a bit more forgetful than pre-treatment. I have good energy and can run almost as fast as before cancer. I still have to be careful about what I eat, and that can be a pain. My digestive system never seemed to quite recover from the radiation.
I can become a little depressed on occasion about having had cancer, but sometimes it makes life seem even sweeter.

Posts: 22
Joined: Jul 2010

im a 9yr.colonrectal cancer survivor staget3c with 2tumors at age 30, im now 41yrs.old.got a colostomy bag had 2 different ones different years. took 25treatment of radiation,9months of fu-5 chemo. 5operations, lost my teeth at age 34 dentist calls it deadjaw and i have chemo brain, i suffer from bone loss from the radiation in my spine. please write me at tsanders1016@gmil.com ive never yet to meet another female withmy cancer with colostomy, only men and that isnt the same..

KathiM's picture
Posts: 8077
Joined: Aug 2005

Hi, guys, although I'm still work in process for breast ca, my cc is behind me (HAHAHAHA):
Pre/dx Lifestyle: Active, walked 1-3 miles every day. I'm computer consult, so I lifted lots of stuff with no problems. Ate well, 10 pounds over BMI, but had great stamina. No serious health issues AT ALL (I was caregiver to 3 other people, in my off moments). No smoking, drugs, occasional (3x per year) glass of wine. Biggest naughty (which I still do) drinking coffee.

Activities: Walking, traveling (working vacations), skiing

Dx:11/04, Stage II 2 inch tumor, squamous cell in rectum. Age:49

Chemo/Rad:Cisplatin, 5FU. Pre-surgical. 4 days, 2 times. Rad:25 days

Surgery: removal of rectum and sygmoid colon.

After treatment response: Really, only bad sides I got lasted 2 weeks after each chemo. I do have "chemo brain", especially after recent with breast ca (unrelated). Biggest lasting side is pain/stiffness in the hip closest to where tumor was. Attributed to arthritis. Chemo brought on immediate menopause, surgery included total hyster, so menopause is permanent now. Only other problem is from loss of rectum...need to be near bathroom 15 minutes after eating.

Changes: I eat MUCH healthier, don't fast food nearly as much. Keep a positive attitude, find something to laugh at every day. Lost 30 pounds due to pain/chemo/surgery. 3 bowel obstructions, one requiring additional surgery.

But VERY MUCH happy to be alive!!!


nanuk's picture
Posts: 1362
Joined: Dec 2003

this thread could get huge and unmanageable; these posts are great, and need to be in a place where the can be referenced and not lost in the limbo of past posts..any Ideas Jose? Bud

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nanuk's picture
Posts: 1362
Joined: Dec 2003

life style active-cycling, martial arts, running, etc. healthy all my life until dx'd w/ crc in 2000.
Mesorectal excision w/colostomy & adjuvant chemo-(5fu/Leucorvin)& pelvic radiation. Huge side effects; sick, sick, and then sick.
Clear until Dec 2003, then mets to lungs-(20+) Folfox-(5fu/Oxaliplatin)-8 rounds. side effects sick and sicker, neuropathy-(feet) fatigue, chemo-brain, etc. Reduction of mets to 3..
Went to Texas for targeted radiation-zapped all but one node. no side effects other than fatigue.
nearly clear for six months, then mets back in force-(12 +) Off to Los Angeles for Vaccine Trial
(4 months) no apparent side effects, also no results-tumors continued to grow. During this time, I developed this huge overpowering groin pain which continued 24-7 at level 9; ate pain pills and wore pain patches for 3months until decided to go th Idaho for more treatment; started on CPT-ll, but got so sick Dr. took me off after two doses.
The groin pain dissapeared after the chemo (?) dunno why, but I'm not complaining.
Now on Avastin/Erbitux monotherapy, and CEA is coming down. side effects are overall muscle and joint pain, rash, and fatigue. Have presently stopped treatment until muscle/join pain resolves. Upcoming scans will confirm if CEA means tumor reduction (s)

ron50's picture
Posts: 1729
Joined: Nov 2001

lifestyle,light drinker but unfit,workaholic,fishaholic
dx stage3 des colon 6 nodes bad
treatment,48 sessions of 5fu/levamisole.sick all the time, food was a waste of time but weight increasd dramatically.
post chem. Got fit was walking up to 100 kilometers a week.
had constant upper right quadrant pain,dx duodenal ulcers,still pain dx fatty liver,working harder still,went off anti-inflamatories ,lost 33 kilos,still back pain,into hospital dx pancreatitis (suspected ca),rmoved gall bladder ,pancreatitis subsided ,still back pain ,endoscopy appeared to be stomach ca ,biopsy proved to be ulceration,on somac still back pain,now working 7 days a week, Dec 05 once more dx with peptic ulcers. Jan 06 was end of eighth year ,still have a pain in the back ,doc suggested I might be imagining it,life goes on.

scouty's picture
Posts: 1976
Joined: Apr 2004

Very active and athletic until work got more time consuming about 10 years before my diagnosis early 2004. I did not eat right or drink enough water and I worked way too many hours. I did do lots of yard work and have always had a veggie garden.

DXed Stage IV rectal carcinoma with mets to liver and left lung at 49.

Did 8 months of folfox (oxiliplatin, leucovorin, 5FU) and Avastin (March-Nov. 2004).

Long term side effects:

Tingling in both feet, especially the toes. Hands and feet are very easily chilled.
Memory loss
Can't focus or concentrate as long as I used to
Completely zone out periodically (all of a sudden can't remember why or where I am going.
The usual menopause issues
Muscle mass differences from 45 lb weight loss and subsequent gain back without proper exercising.
Some foods bother me that never did before.
Diarrhea hits more often.
Less money then I would have otherwise (between working and bills).
And who knows the internal damage caused by the chemo and the recurring zaps of radiation (CT scans,etc).

Lisa P.

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