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Questions - chemo starting

Dale423
Posts: 8
Joined: Mar 2006

Hi,

I've read many of the threads and am familiar with what side effects many of you have had on FOLFOX. I'm stage III and start chemo on Monday.

I'm concerned about the issue with cold fluids. Does this mean that a cold glass of water is pretty much "out" for the upcoming summer?

And on a completely selfish note, will I have to forego my usual red wine with dinner?

I hope you all will forgive these somewhat shallow questions. As I read what some of you have been through I feel hesitant to even post this. I am a little nervous about starting the chemo and this site has been a huge help.

God bless you all!

Dale

tkd3g
Posts: 768
Joined: Aug 2004

Hi Dale.

Sorry to hear you have to do the chemo thing.

My experience with FOLFOX wasn't that fantastic. I think I had a building reaction to one of the drugs. I stopped after 4 treatments.

Everyone is different. THe whole spectrum is here. THere are people that go thew whole 12 cycles without any problem, some have a few side effects and others need to stop it.

My side effects were many and almost immediate. Which is why I decided to stop it. BUt, I read , not too long ago, that someone was going into their 12 treatment and was just starting to notice the neuropathy ( cold sensitivy and tingles)

THe great thing about the NO cold drink thing is... all you have to do is drink something warm and the sensations will go away immediately.

So for me, the cold drinks were totally off limits. For others, it wasn't so bad.

My advice...sip don't chug. You'll feel it if it's happening.

Best of luck with your treatments.

Barb

joenlisa500
Posts: 23
Joined: May 2004

Hi,

I too am sorry to hear you have to go through chemo, my mom went through 6 months of treatments and had very managable side effects, thanks mostly to the info I was able to get from the wonderful people on this board. Her cold sensitivity was almost immediate after her treatments, however it would only last a few days after her treatment, everybody is different and their bodies react different, for her she would keep room temperature drinks available for the first few days, even hot drinks gave her a little trouble, and she drank all of her drinks very slow, little sips until she learned what worked best for her. She also had some problems with the hands, however she took vitamin B-6 daily as I read this could help and it seemed to, she noticed a difference when she would start "feeling good" as she put it and get a little lax in her vitamins. Her oncologist said she would have preferred to have her doing the treatments in the summer, alot less cold sensitivity in the hands and feet in the summer. Mom made sure she told her Dr. everything that happened to her after and between treatments no matter how minor it seemed and this way if it was treatment related her treatment would be adjusted accordingly.

Good luck with your treatments.

Lisa

DK2006
Posts: 126
Joined: Jan 2006

Hi Dale!
I'm sorry to hear about your diagnosis, but welcome to this board. I am a 46 yo female with stage 3a colon cancer. I have had 6 treatments with folfox, with 6 to go. Enjoy your ice cold beverages this weekend. You'll probably have no interest in them for the next 6 months. Side effects have been manageable for me. It's not fun, but it hasn't been too bad. Side effects are cumulative, so after the first treatment I was still able to drink iced berverages, but now I just drink luke warm beverages. I live in Colorado, so I need to wear a scarf on cold days to go outside and the few days following treatment I generally need to cover my face because the cold hurts so much. As for wine, my oncologist said not to drink alcohol the day before treatment and a few days after. I am also doing acupuncture and I feel it makes a huge difference for the side effects. Best of luck with your treatments!! Donna

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

Dale,

First, I'm sorry to hear that you will be joining the chemo club.

Second, don't ever hesitate to post any information or questions no matter how trivial they may seem.

I too had manageable symptoms and the neuropathy was very mild although I still have mild pins and needles in my toes and feet that has seemed to get better over time. For me, I wasn't to the point that I had to use gloves to reach in the fridge or freezer, although I received a few jolts during that time. Cold drinks were out, though. I learned very quickly after my first treatment and took a huge gulp of an ice cold beverage. It felt like a thousand tiny jolts all down my throat. Luke warm water suddenly felt cold to me to drink and I would also stick to room temp drinks during the first few days after my last treatment.

As far as the red wine goes you will probably get a mixed reaction. The sugar you receive from drinking wine is not necessarily a good thing (sugar is not good period) but having one glass of wine with dinner may not be the end of the world. Maybe you should consult with a nutritionist if there is one available. I have read that sometimes giving up the one glass of wine a night had more adverse side affects than just having the wine. I would say that if you can survive either giving it up entirely or cutting back that would be a better choice but it's a personal call.

DK2006, where in Colorado are you from (if you don't mind my asking)? I have lived in CO my entire life up until a year ago when we moved to Nebraska. In fact, my oncologist is in Denver.

Susanbm
Posts: 61
Joined: Mar 2006

Dale, my neuropathy happened almost immediate after I received the oxaliplatin but became less severe as the days went by. If I drank something cold, it seemed like I was drinking broken pieces of glass so you learn very quickly to avoid them. Also, getting something out of the refrigerator or freezer always botherd me too. After a few days, I was able to drink something cold but without ice and I didn't drink anything with ice the entire time I was on the chemo. I would also have to pour it into a drinking container that was not previously refrigerated. I never did have any problems with my feet, just my hands and the actual drinking. But, since I have finished my chemo, I no longer have any of those symptoms.

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

Ahoy, Dale -

I didn't do the FOLFOX treatment so I can't really comment on cold issues. I would say that Barb gave you some excellent advice in that everyone is different so take it slow.

I would add that, according to the Irish, Guiness is to be taken at room temp so that's a relief! My recommendation; drink lots of Guiness (and it's only 125 calories per room temp glass!)

- SpongeBob

Jen28
Posts: 45
Joined: Nov 2005

Ditto to what most others have said about the cold drinks. I've just finished treatment 7/12 of FOLFOX. I can only drink lukewarm drinks for the period right after chemo--everything else feels cold, even though it's not. I'm about 5 days past my last chemo, and I can drink cool drinks now (in small sips), but I can't drink ice cold drinks. Right before the next chemo, I'd probably be able to drink things with ice (I know that I'm okay eating ice cream then :)).

I asked my chemo nurse about alcohol, and was told it was fine to have a glass of wine with dinner except on the first day of chemo, when they give me a cocktail of anti-nausea meds that they don't want alcohol to mix with. I'd normally want to have a glass of wine with dinner, but I've cut back to next to nothing, because alcohol seems to affect me differently now and I don't feel as good even if I have one glass of wine.

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Hi Dale,

You've received a lot of good advice. When I was on Oxaliplatin I developed the neuropathy the second week and began drinking my beverages w/o ice. I also love my glass of wine with my dinner and continued until it just didn't taste so good anymore. With doctors orders I didn't have any the day before chemo until a couple of days after so that left me with about 2 days which I could imbibe. After chemo was finished everything returned to normal...I now enjoy iced drinks and my wine with dinner.

Good luck with treatment.

Kerry

debralla
Posts: 205
Joined: Feb 2006

Hello Dale.
With me the cold drinks went out the window after my first treatment . But like the others have said the week after chemo gets better . I have not had an iced drink in 4 months .
I also have problems with hot food and have to wait for my food to cool down before I eat
I also get a severe pain in my jaws with the first bite of any food (kinda like when you bite into something real sour ) it only happens with the first bite . I do get tingley fingers and toes . I where socks all of the time and I live in Hawaii . I started taking B-6 and it has helped a lot . I don't know if anyone else gets this ,But sometimes after my treatment not every time i get a bad case of the sneezes . And I also get a pins and needles feeling in my head and eyes if I hold back tears . It feels better just to let it all out and cry .I have had a few mouth sores not to bad I went out and bought Biotene toothpaste which works great . But if they get to bad ask your onc. for some magic mouthwash .But remember everyone is different some only get a few symptoms . So far my symtoms only last about 5 days .I just finished my 7 treatment . best of luck .
TAKE CARE AND GOD BLESS ...DEBRA...

lfondots63's picture
lfondots63
Posts: 822
Joined: Jan 2006

Hi Dale,

I am like the rest. The cold drinks hurt. I am stage3 colon and on my second treatment as of today. About the wine. Isn't it called a "hot toddy" if you warm it up. You could be very sophisticated doing that. :)
Also make sure you drink lots of water to flush the chemo through your system faster. I have to warm my water right now so get flavored water since can't stand warm water. Good luck and tell us how it goes. Sorry to hear you joined our family but glad you found us. We all are willing to help so don't feel funny posting. Good vibes your way!!

Lisa

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

Hi Dale and welcome to the biggest family you will ever have!Just a coupla tips from me;
Tell your clinic nurses/oncologist about ANYTHING that seems not normal about your body...no matter how trivial.
Buy a thermometer and keep track of your body temp.
Mouth.....metallic taste, mouth sores...NEVER use a mouthwash that is real strong like Listerine. It has Ethanol in it and will burn.
Nausea....I found drinking ginger ale helpfull to keep fluids up. Open the bottle and let stand at room temperature to let it go flat(lose all the bubbles) Eating "crystalised ginger", a sweet, also helps with easing nausea.
Meals...throw out the idea of 3 square meals...it won't happen. Eat when you want but in small amounts more often. Drink more than you would have before your dx.
Finally.....this crap they give you is poison..so go easy on yourself. Don't take the attitude that "today you feel fine and can run the quarter mile". Do what you can, when you can. There is one thing important here...YOU...most things are not urgent. What can be left for tomorrow to do...LEAVE.
And never think any question is too trivial for this lot here....every question is important.
Our best from oz, Ross and Jen

JADot's picture
JADot
Posts: 720
Joined: Jan 2006

Hi Dale:

The first time you take a cold drink and you feel like there's a little shag carpet on the back of your throat, the appeal of that cold drink is gone. You won't miss it. To make up for it, try some really nice greentea full of cancer fighting antioxidants. The cold drinks usually have sugar, color, and other stuff which you don't need anyway. So no worries.

Now, let me tell you about some chemo perks - you can eat all you want and not worry about weight!!! Is that just grand or what? I am in a small-ish 5'5" frame and I eat village portions now :) You do have to keep track of what you eat in order to get enough nutrition and calories. I found a nice pizza parlor that makes a low cheese veggies pizza. Yum! Please read Patrick Quillin's book "Fighting Cancer with Nutrition".

Other Folfox symptoms are quite manageable - fatigue and nausea. But ya know what - just think how sick the cancer cells will be with this stuff, so go and nail them! You can do it! The women and men who are all skin and bones with no hair in my onc office really inspire me - other chemos are so much tougher than Folfox. So just take it a day at a time and you'll do fine!

Doing my miss bossy boots best - NO RED WINE! Your liver has enough to handle during chemo w/o alcohol.

Hmmm...get a space heater and some gloves too. Those tingly fingers really like to be warm.

Cheers,
JADot

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi Dale - sorry you are having to join us, but here's my oxaliplatin / cold experience:

I started chemo in mid July 2005 and continued thru the end of Nov 2005. Cold drinks were OUT the first few days after oxaliplatin infusion. Believe me - once you make the mistake and sip an icy drink, you'll be happy not to have another one! But, the worst only lasted a few days. Sipping worked the second week. I was on a 3 week cycle so the last week of each cycle I was fine with cold drinks. The first few days my fingers were VERY cold sensitive - I remember wearing gloves to chop some celery from the fridge once! And occasionally if a blast of cold air hit my face, it would "contort" temporarily. But these really cold sensitive symptoms only lasted a few days.

So, with any luck you can have some cold drinks throughout the summer, just not during chemo weeks. And if your side effects end up lasting longer, then believe me you won't miss them!

As for a glass of wine - I never gave it up except for the first couple of days of chemo cycle (when believe me I really didn't feel like having one anyway).

I wish you all the best.

Betsy

jerseysue's picture
jerseysue
Posts: 626
Joined: Oct 2005

I'm with the rest of the posts. After a few days the coldness wasn't as bad as the first few days but for me I had a hard time with the cold even after the first few days. If I even took a sip of cold water it felt like something sharp stuck in my throat. Also Debra was saying about her eyes feeling weird when she held back tears. I also had that I'll never forget walking one day and it started raining and my eyes were getting wet and it was a cold rain my eyes went nuts. I couldn't see it was like they were cramping up and I could not open them. I was laughing my *** off because I wasn't sure if I was going to make it home or not. I'm laughing while I'm just thinking about it. I also had the tingling (nice word) behind the ears with everything on the first bite. It isn't the folfox it is the oxiplantin that gives you the sensitivity to cold. In the middle of my 8th treatment I got a rash on the palms of my hands and it itched like crazy. I told my nurse and they stopped the chemo, called the onc, and the oxiplatin was pulled from my treatment. I continued with the reminder of the chemo which ended in Nov 05.

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

Dale, sorry that you are having to go thru this. I was stage II rectal, took a cocktail of Cisplatin and 5FU. For four days in a row. Day 5 was hard, day 6 every inch of my skin hurt to the touch. BUT nothing tasted better than ice water. In fact, if the ice melted, I demanded more. Obviously a different chemical. Also, all symptoms disappeared after 2 weeks. Interestingly, I am now doing chemo for breast cancer, Taxol. Tingles in hands and feet. Still drinking cold water, tho. I agree that everyone is different.
Good luck with the chemo, always remember that it is only a small period in your life. You can get thru anything if its taken in small pieces. I had a calendar that marked chemo days and radiation days. Sticky notes that I ripped off and threw away as soon as that day passed. This made it easier for me.
Good luck and god bless.
Kathi

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