Hello - I'm new

msccolon

lisa42 said:

Another thing
Hi again,
I forgot to comment on eyes. I also experienced some changes in my vision while on Folfox chemo. The main problem with my eyes, though, was they were very dry all the time. I'd wake up in the middle of the night and they were so dry that they really hurt. I even developed a red lesion on the white of both eyes. I went to the opthamologist about it and they said it's a normal condition in "older" people (thanks, I'm only 42) & that I probably developed this at a younger age because of the effects of the chemotherapy. Also, having my eyes be so dry made it worse. So, I keep "natural tears" eyedrops with me at all times now. I often have to put drops in my eyes right away after waking up- sometimes before even using the bathroom! Keep the eyes moist to protect them from any possible more ill effects.
For the mouth sores, I found that there's a certain mouthwash that works really well (darn it- my chemo brain just forgot what it's called!) I think it starts with a B. Get one that gives moisture to the mouth- nothing too strong. There's a gel of the same brand that works well to put on any mouth ulcers also. You may find that your hands and soles of your feet start peeling and your skin gets really dry. Try Aveeno lotion- it worked well for me. The peeling will stop after you're all done w/ the 5-FU. I got soreness and blisters for a few days each time. I don't know what to recommend for that- just take it easy and it went away each time after a few days (but I always knew to expect it again about 3-4 days after a treatment).
Best wishes to you,
Lisa

Biotene?
I use that for keeping the mouth moist, maybe you are thinking of that? My dental hygienist SIL recommended it for me to use and I NEVER had any problem with mouth sores. I also rinsed daily with hydrogen peroxide, although some say that's too harsh so water it down if you need to.

lisa42

msccolon said:

Biotene?
I use that for keeping the mouth moist, maybe you are thinking of that? My dental hygienist SIL recommended it for me to use and I NEVER had any problem with mouth sores. I also rinsed daily with hydrogen peroxide, although some say that's too harsh so water it down if you need to.

That's it- Biotene!
That's it- Biotene!
Thanks Mary! There were a couple of other brands that claimed to do the same- I tried several others but the Biotene was the best, in my opinion.

CherylHutch

daydreamer110761 said:

Has anyone had it effect their eyes?
That's a question I have. i went outside this time around and it seemed like my eyes froze up, I couldn't see for a few seconds, which was bad since I was at work, and helping a tow truck driver.

I asked the doctor about drinking and chemo also, since although I am not a "heavy drinker" I did like to have my evening cocktails, which I said consisted of Jack and coke (which I am sure contributed to the diabetes part). He said that as long as I didn't do it while on chemo, that wine in moderation was ok, which lead me to searching for a wine I like - I like white, he says red. I had actually quit smoking having been in the hospital 10 days, and when I got out noticed how bad it smelled. That didn't stop me from wanting one tho and I picked one back up around Christmas time. Not smoking like I used to since I won't go outside.

I've also read alot of the hints on here about food, and found that I suddenly love salsa, and pepper on everything. I hate coffee now, it just tastes funky, but I miss my morning cup, have switched to tea and hot chocolate.

Yes I am spouting. This isn't fair to anyone, not me, you guys, and especially not to the people who have to put up with us! Nick is only trying to help, and I yell at him all the time - I believe it is a mixture of chemo and hormones! He's been a life saver on more than one occasion. I'll tell you - the ones that put up with us are God sends to not just walk out, and he puts up with me both at work and at home, lucky him. Have a good day guys - off to brave the cold and go to work.

Cold
Yep... that will be the Oxaliplatin that is doing the big number with you and the cold. That is a hard one to swallow, especially being in the climate you are in. BUT, take heart... when you finally come off the Oxa, it will get better and the sensitivity to cold is only temporary. So it's just while you are on the treatments that you are going to have this extreme sensitivity to cold.

You also asked somewhere why would the doctors say 12 rounds of treatments and then cut them short. Again, it comes down to everyone is different and everyone's body/immune system/etc. can only tolerate so much. Some people can get through all 12, others can only get through 6. Add a regime of radiation (daily) for 6 weeks, which again lowers your system, then that could very easily affect how much chemo you can tolerate. Chemo is poison... straight and simple. So how much poison can we tolerate before the risks outweigh the benefits? There is no same answer for everyone... that is why it is so important to let your doctors know what you are feeling, what side affects you are getting, how you are doing, etc. so they can weigh how much your system can take.

I got through all 12 sessions of the 5FU and Leucorvin, but only got through 9 sessions of the Oxaliplatin. I did do 6 weeks of daily radiation as well. I finished that at the end of Oct 2007... and am doing just great now!! My only ongoing complaints due to the chemo is that it really did aggravate the arthritis I had so now the arthritis is really bad... and one of the chemos did a number on my feet -- neuropathy and nerve damage in the heels.

My cancer did come back in the adrenal gland and the lungs. Well, we took out the adrenal gland surgically, and we are about to blast two tumors in the lungs (next week). And I'm still here to yak about it... and I feel great

I never was a drinker, so that didn't really affect me... although I am starting to kinda like the occasional glass of wine

Huggggggs,

Cheryl

pamness

unknown said:

This comment has been removed by the Moderator

Giving up the wine
I didn't think I wanted to give up my couple of glasses of wine. During chemo, I asked if drinking wine was OK. My doctors said it was fine, but drink lots of water, it has a dehydrating effect.

Much to my surprise, as soon as I started chemo the idea of drinking anything alchoholic was - ick, ick, ick. So I didn't. I had trouble eating anything except carbohydrates - cake, cookies, etc. Not a great diet.

Now that I am ned - at least for now - I do drink some wine and have cut back on some of the carbs and upped the veggies. I never smoked, so I didn't have to deal with that.

It is a strange journey. I hope yours goes as well as possible.

Pam

mykidsmommy

CherylHutch said:

Cold
Yep... that will be the Oxaliplatin that is doing the big number with you and the cold. That is a hard one to swallow, especially being in the climate you are in. BUT, take heart... when you finally come off the Oxa, it will get better and the sensitivity to cold is only temporary. So it's just while you are on the treatments that you are going to have this extreme sensitivity to cold.

You also asked somewhere why would the doctors say 12 rounds of treatments and then cut them short. Again, it comes down to everyone is different and everyone's body/immune system/etc. can only tolerate so much. Some people can get through all 12, others can only get through 6. Add a regime of radiation (daily) for 6 weeks, which again lowers your system, then that could very easily affect how much chemo you can tolerate. Chemo is poison... straight and simple. So how much poison can we tolerate before the risks outweigh the benefits? There is no same answer for everyone... that is why it is so important to let your doctors know what you are feeling, what side affects you are getting, how you are doing, etc. so they can weigh how much your system can take.

I got through all 12 sessions of the 5FU and Leucorvin, but only got through 9 sessions of the Oxaliplatin. I did do 6 weeks of daily radiation as well. I finished that at the end of Oct 2007... and am doing just great now!! My only ongoing complaints due to the chemo is that it really did aggravate the arthritis I had so now the arthritis is really bad... and one of the chemos did a number on my feet -- neuropathy and nerve damage in the heels.

My cancer did come back in the adrenal gland and the lungs. Well, we took out the adrenal gland surgically, and we are about to blast two tumors in the lungs (next week). And I'm still here to yak about it... and I feel great

I never was a drinker, so that didn't really affect me... although I am starting to kinda like the occasional glass of wine

Huggggggs,

Cheryl

Hello My Friend
Hi Cheryl -
I posted a lengthy post tonight about my visit with my ocn following RFA - he brought up CHEMO! Jerk. Suddenly what I thought was a slam dunk - after RFA - go on about my usiness, he has dumped this heavy dicsion on my lap - I was wondering if your doc said anything - or what his thought were on follow up chemo "just in case" chemo. Yuck.

dorookie

daydreamer110761 said:

Has anyone had it effect their eyes?
That's a question I have. i went outside this time around and it seemed like my eyes froze up, I couldn't see for a few seconds, which was bad since I was at work, and helping a tow truck driver.

I asked the doctor about drinking and chemo also, since although I am not a "heavy drinker" I did like to have my evening cocktails, which I said consisted of Jack and coke (which I am sure contributed to the diabetes part). He said that as long as I didn't do it while on chemo, that wine in moderation was ok, which lead me to searching for a wine I like - I like white, he says red. I had actually quit smoking having been in the hospital 10 days, and when I got out noticed how bad it smelled. That didn't stop me from wanting one tho and I picked one back up around Christmas time. Not smoking like I used to since I won't go outside.

I've also read alot of the hints on here about food, and found that I suddenly love salsa, and pepper on everything. I hate coffee now, it just tastes funky, but I miss my morning cup, have switched to tea and hot chocolate.

Yes I am spouting. This isn't fair to anyone, not me, you guys, and especially not to the people who have to put up with us! Nick is only trying to help, and I yell at him all the time - I believe it is a mixture of chemo and hormones! He's been a life saver on more than one occasion. I'll tell you - the ones that put up with us are God sends to not just walk out, and he puts up with me both at work and at home, lucky him. Have a good day guys - off to brave the cold and go to work.

Welcome
Hi there, I havent had problems with my eyes but did have problems with my hearing, weird I know. I havent heard of anyone else having that problem.

I also wanted to say, welcome, glad you found us and please always feel free to come here to ask questions, vent or spout as you call it, or for any reason really. Its a great place of support, comfort and friendship. There are so many great people here with so many rewarding stories. You are not alone, we are all here for you, and please go talk to someone. I too, am having problems and I am seeking out someone to talk to. THis is a hard road to go down, so dont be stubborn and try to do it alone, there is no need there is help out there. Just some friendly advice.

God Bless
Beth

MoonDragon

daydreamer110761 said:

Has anyone had it effect their eyes?
That's a question I have. i went outside this time around and it seemed like my eyes froze up, I couldn't see for a few seconds, which was bad since I was at work, and helping a tow truck driver.

I asked the doctor about drinking and chemo also, since although I am not a "heavy drinker" I did like to have my evening cocktails, which I said consisted of Jack and coke (which I am sure contributed to the diabetes part). He said that as long as I didn't do it while on chemo, that wine in moderation was ok, which lead me to searching for a wine I like - I like white, he says red. I had actually quit smoking having been in the hospital 10 days, and when I got out noticed how bad it smelled. That didn't stop me from wanting one tho and I picked one back up around Christmas time. Not smoking like I used to since I won't go outside.

I've also read alot of the hints on here about food, and found that I suddenly love salsa, and pepper on everything. I hate coffee now, it just tastes funky, but I miss my morning cup, have switched to tea and hot chocolate.

Yes I am spouting. This isn't fair to anyone, not me, you guys, and especially not to the people who have to put up with us! Nick is only trying to help, and I yell at him all the time - I believe it is a mixture of chemo and hormones! He's been a life saver on more than one occasion. I'll tell you - the ones that put up with us are God sends to not just walk out, and he puts up with me both at work and at home, lucky him. Have a good day guys - off to brave the cold and go to work.

Hi Sherrie,
Did I spell that
Hi Sherrie,

Did I spell that wrong? Sorry if I did! I also had "burning" tears. The first tears I would cry would sting like the dickens. After the first few tears, the stinging sensation would go away. My actual vision wasn't affected though.

Jorie

kmygil

Welcome
Hi Sherrie,

I'm really, really sorry you are going through all this. We have all had really wierd effects from the chemo. After my 5th treatment they lowered my dose, and after my 9th we quit altogether, because the side effects were killing me. One thing the thing with the tears did was not allow me to cry during my pity parties--not being able to cry sort of makes the pity party go away and you mad instead. Use your anger to fight the beast! It is beatable!!

Hugs and prayers,
Kirsten