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

dianetavegia said:

I'll share!
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!

unknown said:

This comment has been removed by the Moderator

nudgie said:

Well, where should
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

johnsfo said:

chemo side effects
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

ron50 said:

I had chemo in the days
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.

daydreamer110761 said:

Johnnybgood
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.