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question for you guys done with chemo .....left over side effects

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

I was just curious about everyone - different lengths out of chemo - what side effects are still hanging out with you?

For example - I was done the end of may. My fingers and feet drive me nuts still, and I guess I expect that for a while more. at times, my legs still ache. My nose still runs like a sieve(think me and mags got that one covered). It takes me about an hour in the morning before I feel like I can move between my feet hurting and my nose and eyes running. once I get moving, somedays I feel good, others (most) I am still feeling exhausted by 2pm. I still have trouble remembering why I am somewhere unless I have a note. Not going to talk about bathroom problems, cause I guess they are there to stay.

Today I wanted to go to the gorcery store, couldn't remember what I needed. My mind sometimes just goes from one thing to another. I had a list of things I wanted to do around the house, and accomplished very little. Somedays I can go hiking and do tons, then I'm tired for days after.

I'm just not sure if it is something, or me having gotten used to being lazy? I'm actually annoying myself.....

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I did 12 rounds of FOLFOX and finished mid August.

I have severe neurpathy in my fingers. Late afternoon, my hands hurt quite badly. I drop things... a LOT. My feet feel like there is wet sand in my shoes and when I first wake up, it feels like I have on heavy socks. I have some wobbly times if I stand too long especially after a long walk. When I bend my neck to look down, it feels like a minor 'shock' in my feet.

My nose runs if I bend over yet I feel stuffed up all the time. My eyes water some, too.

I went to the dry cleaners and told the woman I was there to pick up pants I'd had neutered. I knew the minute I said it that it was not the right word but could NOT figure out what I should have said. Altered/ neutered.... I get quite frustrated when I cannot figure out what I want to say.

It helps me to know that others are going through the same thing and that the medicine that caused this is medicine that kills off thse sneaky cancer cells that might have gotten loose!

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

I know it was frustrating Diane, but the neutered pants comment? OH my, that is priceless! Thanks for the chuckle.

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

I haven't laughed that hard in a while! Neutered - you are good - "fixed" would have worked in either circumstance!

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Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I must have lucked out with the side effects. Maybe itw as the break that I had for my surgery. My neck gets sore, and I fall asleep on call. which is very new for me. Don't think it's exhaustion, think it's my body healing. Waking up is not easy but once I do the walk to the restroom (oh what was the deputy names on Gun Smoke), I start to loosen up the legs. But I am lazier then I have ever been in my life...just take the day in stride, no rush to do all that I used to do. My body is coming alive, I can feel it. My face is starting to look healthy and does not have the look of death. My mind is clearer and I don't feel like I am walking in a fog.

I think the B-12 drops, 1000 mg of vitamin C, fish oil, vitamin D3 and Calcium is helping me. My memory used to be a lot worse. Getting in and out of bed used to be tough without a step stool. I know that alchohol interferes with our nerves healing, so I try and stay away from my Merlot, but I am having a glass now. THe hip is sore, but the lady that gave me a massage told me one hip was higher then the other. Must be carring that buddy of mine...the chemo bag.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

if you dont mind me asking how many treatments did you have of oxy and how many treatments of mop up chemo did you have? i had 10 treatments[onc decision to stop]of full oxy and 5fu and i swear your side effects are the same as mine except i dont have the runny nose.i finished on july 16th so does this mean i still have a long wait before i get to feeling better.for all we know we may have to live like this now!!!!!Godbless....johnnybegood

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

And, trust me, things DO get MUCH MUCH better...

I still have some 'chemo brain', tho...and one of my toes is permanently numb. I am still lactose intollerant. My bone density is back into 'normal' range.

And, I MUST be alive, because I can WHINE really well!!!

But remember...there is a BIG difference between being 'lazy' and just taking care of a body that has gone thru H E L L!

Hugs, Kathi

AceSFO's picture
AceSFO
Posts: 230
Joined: Sep 2009

John's side effects lasted a long time too. I'll tell him to chime in on this thread, but the neuropathy took quite a while to go away, hands got better first and then feet. He too started getting frustrated that he was being lazy or something, but there was a general sort of fatigue that just required him to sleep a lot. He'll add more details.

I love Diane's gaff about the "neutered pants." It reminds me of a Far Side cartoon where two dogs are talking, and one is very excited and says "my owners said they're going to get me tutored!!!"

hang in there,
Adrian

nudgie's picture
nudgie
Posts: 1483
Joined: Sep 2006

I start? I finished chemo in Nov 06 and what changed:

a) A lot of dental issues (root canal, crowns, cavaties, etc. I am having to take a flouroide pill, use special toothpastes and mouthwash

b) Vision really changed. Need two glasses now instead of one pair.

c) The remembering thing, I don't know to blame chemo or just getting older. I have to leave messages for myself at work, write notes, post-its, etc.,

d) Got vertigo 2 wks after stopping chemo. That was weird.

e) I drink plenty of water, but still have to take laxatives ever so often to say regular.

f) Had to stop taking the birth control pill due to a samll blot clot received from my last surgery, now my body is returning to the days of old. Irregular spotting and periods, ready to ripped that whole section of my body right out of there :)

coloCan
Posts: 1956
Joined: Oct 2009

"C" is definitely chemobrain. I judge myself with how i do/don't do crossword puzzles in local newspaper and chemo has definitely affected my ability to solve them. I'm more forgetful, at 59, then ever before, lose train of thought readily and lack retention when I read. I also tend to forget what I've said to my girlfriend and thaty at times causes prblems....Don;t think I was like this before......Steve

johnsfo's picture
johnsfo
Posts: 47
Joined: Oct 2009

I had 6 months of Xelox, with infusions of oxalyplatin once every three weeks. I finished the course in May 2007, and by that time I had severe neuropathy (couldn't feel my feet, couldn't feel the difference between wet and dry, etc. with my hands.), and I had gone on medical leave from work in April because of the cognative problems: memory holes, inability to organize complex thoughts and activities, lack of creative and spontaneous thoughts. I was fatigued often and usually slept several hours each afternoon in addition to 8-10 (and sometimes more) hours each night.

Some effects quickly disipated. I felt almost immediate relief from the cognitive problems, and by mid-summer was able to function very well (say 75% of normal). By September, back to 100%. The neuropathy continued to get worse after the chemo but then began to diminish. The feeling in my fingers came back pretty quickly -- within a few months. By late summer I began to get feeling back in my feet. It took a long time -- about 9 months -- before I could say that I had almost no neuropathy, and now (two years later) I have none at all.

The fatigue lasted several months, but by fall -- 3 or 4 months after chemo -- I was back at work full time, with a very heavy schedule, and not disabled by tiredness or any other chemo effects at all.

Hope that helps. It is frustrating. You aren't just lazy. The best thing to do is to follow your body's lead on what it needs, and you will heal.

Best,

John

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

I have been off chemo for 6 months but on it for 5 years...sometimes I don't think I can tell the difference between just plain aging, the severe beating the body takes with surgery, and chemo.

For sure the eyes and nose and trouble breathing. Dental problems yes, hot flashes and skin itching. Not too much neuropathy...don't know how I dodged that one. Chemo brain for sure. I used to read constantly and now I am most often happy enough with a mag. Funny vision....wonder if glasses are working. Pain in abdomen....troubles digesting.

Tire easily...like to lie down by about one pm for little nap. Trouble sleeping at night. Decreased energy....for sure!!!

oh sorry Sherri.....who knows?

~mags~

ron50's picture
ron50
Posts: 1704
Joined: Nov 2001

I had chemo in the days when they mixed it in a bath tub out the back. Well not quite but it was a very old regime of straight 5Fu with nine little white pills of levamisole every second week. I had it via canula in the back of alternate hands every week for 48 weeks. Unfortunately although my surgeon was good at finding the cancer he was not as carefol with the nerves and muscles and have been impotent ever since just like Di,s pants. Since chemo my doctors have attributed a lot of problems to it. I had acute pancreatitis and subsequently lost my gallbladder. I have had several bouts with kidney stones. It appears stones are fairly common with those who have had chemo. I am now under the care of a nephrologist. He is adamant that my problems are most likely the direct result of my cancer plus my chemo. He has seen a trend of auto-immune problems in cancer survivors particularly long term ones. My immune system appears to be attacking my joints,arthritis,my veins, vasculitis and acute short fibre neuropathy in both feet ,legs and left hand and my kidneys,moderate to severe proteinurea (up to 3.2 grams a day loss thru kidneys). They have treated me with blood pressure meds to alleviate the proteinurea. Trouble is I am barely functional with bp of around 90/60. The auto immune arthritis they are treating with methotrexate,a first cousin of 5Fu with all the same side effects including taking follic acid and leucovorin.oh happy days. The neuropathy they treated with lyrica but it is on the the pharma'l benefit scheme only for epilepsy so I was paying nearly $300 a month for the dose I was on. I put up with the pain and burning feet. This Jan will be my 12th year clear of ca depending on your interpretation of clear that is. I can only hope that it is not the same for everyone ,cheers Ron.

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

Dearest Ron: it is so good to see you. Your story is enough to break one's heart. Sometimes I think that when history looks back on what we have been through with chemo , it will look so brutal and so primitive. You know the way we look at the history of medicine with surgery and no anesthetic or leeches or blood letting.

I don't know...sometimes I just feel like chemo is still fairly new and they throw lots of things at us and see what will work and what doesn't....seems like you had lots of things that didn't work work...But!! you're still here darling boy

Take best of care....

mags

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

I went through all 12 treatments of folfox.

I guess what prompted me to ask is that when I was done in May, i was already back at work full time, and I felt ok. We fired my assistant at work in August and I was working 40+ hours until we hired someone else. I was still working 6 days a week, although 3 were half days. After doing that now for 4 years, I was realizing that I am more tired than I used to and not accomplishing anything outside of work. I changed the schedule around so that I am now off at noon on Thursday and go back Sunday.

On a day off, I have all sorts of chores to do. It takes me at least an hour after I wake up to be able to move - my feet and legs just ache, and it hurts to walk up and down the stairs. I didnt seem to have this much trouble when I was on the chemo, as a matter of fact, I felt better! Once I go through my new morning routine, I'm actually tired and could take a nap! By 5pm I have accomplished very little, maybe laundry and food shopping, but not much else! Last friday though, I sat here for about 2 hours trying to make a list of what I needed at the store, and couldnt remember. I ended up going and walking around and just bringing home dinner.

Which reminds me, I need to leave for work now! lol - have a good day guys. and thanx again.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

hats off to you and so many others that work.in my town all there is to do for a living is work in factories.thats all i have ever done.now that i cant feel any thing with my fingers and my feet are numb i cant stand for a long period.i dont see how you all can do it.i am in process of trying to get ssd although from reading many post here it seems hard to get when dx at stage 3.i guess i will wait and see.keep me posted on your neuropathy i remember when i joined this family you were about a month or two ahead of me.Godbless...johnnybegood

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