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Mop up chemo experiences

Posted: Sun Mar 25, 2018 12:14 pm
by Caat55
Starting a new thread cause I an feeling different with this hopefully, last course of treatment. I started oxaliplatin and Xeloda Thursday. My hands and feet are tingling if even a little chilled. Calves feel cramped as do forearms. I tried to work on some reports but my hands don't like the position of typing. Really, I just want to sleep. Does this last the whole of the treatment, does it get better with time away from infusion? I got in nearly 10000 steps yesterday but what a struggle cold air has me freathing like croup. This isn't me.
S

Re: Mop up chemo experiences

Posted: Sun Mar 25, 2018 1:36 pm
by heiders33
I had all the same experiences you had, except my struggle with cold air was a tingling in my throat, not so much trouble with breathing. I didn’t feel like myself and had to spend a lot of time in bed for a few days afterward. Lots of intermittent tingling in my hands and feet even when I wasn’t cold. Believe me, it’s normal and it does go away. Just watch out for any persistent numbness or tingling and let your onc know. I am now over a month out from chemo and the only lasting side effect is mild tingling in my feet if I stress them out too much or when they touch the cold floor in the morning. I also get a strange sensation in my feet from time to time, not painful. All that to say, yes the side effects suck but they do pass. Hang in there and feel free to vent here any time. We all get it! Also, drink a lot of water and electrolytes to help with hand and calf cramps.

Re: Mop up chemo experiences

Posted: Sun Mar 25, 2018 5:49 pm
by Lee
Cold will effect you. Can you wear something around your throat when you are outside. Where are you? Hopefully spring is around the corner and the weather will get a lot better.

Because you are a stage III you really want to get a few cycles of Oxaliplatin under your belt. Is there a chance you could stop the pills and go on the pump. For some people, the side effect are not as bad on the pump. Talk to your Onc, sometimes they can reduce the dose of the Oxaliplatin.

For me, my personal experience, the side effect increased with each passing cycle. You are doing the right things in exercise, as that is suppose to help ease the side effects.

A few people on this forum have found great success with side effect by fasting. Some how by fasting a day or two prior to infusion, it shuts down the healthy cells and thus the cancer cells get all the chemo. If you do a search on the tab "Search this Forum" under fasting, I believe you will find someone recently who has found fasting the way to go.

Good luck,

Lee

Re: Mop up chemo experiences

Posted: Sun Mar 25, 2018 7:47 pm
by Caat55
Thanks Lee and Heider. I will ask my oncologist tomorrow about the fasting. I will also try to drink as much water, tea, etc. as I can and flush this stuff out. Sat outside in the sun for a bit today, than a cloud pulled in and it started to hail. The lesson I am learning is to be prepared for anything.
People ask how you are feeling, but they don't really want to hear it. Thank goodness for all of you.

Susan

Re: Mop up chemo experiences

Posted: Sun Mar 25, 2018 7:50 pm
by heiders33
If you are taking Xeloda pills you may not be able to fast since you have to take them with food. If you switched to the pump then it may be possible. It sounds like all of your side effects are from the Oxi so far. Side effects from Xeloda are mostly gastrointestinal, plus I developed dry, chapped feet over time.

Re: Mop up chemo experiences

Posted: Sun Mar 25, 2018 9:43 pm
by retiredteacher
Thanks for starting this thread Susan. I have had a cold since before the first infusion Thursday - I thought it was getting better, but has taken a turn for the worse - low grade fever 99.2. My throat shut down just from phone conversations Friday morning; I have been a little afraid to go outside. Maybe will try tomorrow. Some foot tingling - has passed. Cold sensitivity. Dropped a pot of hot spaghetti water Friday - I was thinking klutz but now realize may have been a side effect. Very bothersome is the sharp jaw pain - first bite or sip. What do people do to control nausea - I have a script for Zofran - how extensive can the nausea be with Xeloda? Hubby found a loaf of organic bread without folic acid fairly easily. I don't feel great, but not bad enough to skip a glass of wine. Imagine that will come later ...

Re: Mop up chemo experiences

Posted: Mon Mar 26, 2018 9:29 am
by Deb m
My husband experienced all of what you are. It all resolved except very mild tingling on the bottom of his feet. He's 7years out now. Hang in there.

Re: Mop up chemo experiences

Posted: Mon Mar 26, 2018 9:45 am
by Caat55
Do the side effects lessen between infusions or stay about the same for the whole course?
I don't know which drug is responsible but I get very pink very quickly with just a bit of sun. Will have to get out sun screen, I had a scoop necked shirt on yesterday and my chest and neck are red.
I haven't tired the nausea mess yet, just doing tea.
Loose stools, thankful for the bag or bum would be very sore.
I did find that cranberry juice tastes pretty okay warm. I am seeing oncologist today, will swing by grocery and pick up more. I am cutting it with water as I don't want all the sugar.
I read that the fasting before chemo can be as much as 500 calories a day, but for best results four days. That's a long time. If the calories are divided between Xeloda does, that would be manageable. You can eat a lot of veggies with only a few calories. I was thinking that limiting sugars and carbs might be helpful too as we do prior to a PET scan to drive those little cancer cells crazy.
I would be going to work today if It was a normal week but my schools are on spring break, some this week and some next. I will ease back in slowly.
Red wine still tastes good but only a half glass or I would have fallen asleep at dinner. I could sleep all day.

Re: Mop up chemo experiences

Posted: Mon Mar 26, 2018 2:32 pm
by Shana
Caat55 wrote:People ask how you are feeling, but they don't really want to hear it. Thank goodness for all of you.

Susan


I second that! Hope this week goes well for you Susan, I think warmer weather will help if it reaches your area!

Re: Mop up chemo experiences

Posted: Mon Mar 26, 2018 3:31 pm
by mozart13
Evening of my first day of folfox, crampes kicked in, took Magnesium, it worked.
After that on my day of therapy, would take Magnesium as soon as got home, never had cramps again.

Re: Mop up chemo experiences

Posted: Mon Mar 26, 2018 4:07 pm
by retiredteacher
Steroids/ steroid withdrawals have any mental effects?

Re: Mop up chemo experiences

Posted: Mon Mar 26, 2018 6:06 pm
by cbsmith
Sun sensitivity is a side affect of 5-FU, or Xelox, if you are taking the pill form.

Re: Mop up chemo experiences

Posted: Mon Mar 26, 2018 7:26 pm
by orlar
I think you will find room temp. liquids (for me, food also) are best because OXI can cause cold sensitivity in the mouth, throat, lips the first several days of your cycle. My side affects during FOLFOX always improved as I progressed through my 2 week cycle. The first cycle is tougher because of the unknown and trying to see what's your normal. You'll get through it and the next cycle won't be nearly as stressful as you'll know what to expect. Try to relax as much as possible, drink all the fluids you can (and then more fluids) and things will work out O.K.

Re: Mop up chemo experiences

Posted: Tue Mar 27, 2018 11:32 am
by Caat55
orlar wrote:I think you will find room temp. liquids (for me, food also) are best because OXI can cause cold sensitivity in the mouth, throat, lips the first several days of your cycle. My side affects during FOLFOX always improved as I progressed through my 2 week cycle. The first cycle is tougher because of the unknown and trying to see what's your normal. You'll get through it and the next cycle won't be nearly as stressful as you'll know what to expect. Try to relax as much as possible, drink all the fluids you can (and then more fluids) and things will work out O.K.


Thank you. I went to lunch yesterday and the nice young man brought me a mug of water and a teapot of hot water to keep it going. I have been cutting juice with warm water, not too bad. Tired of tea. The radiation sent me into menopause and I get so hot and crave a cool drink.

My oncologist wants to increase my dose of xeloda with the next infusion to a European dose. We would add 3 more pills twice a day. I am only going to do five rounds of the combined treatment.

He thought my response to the steroids was pretty funny, as did my husband and friends. Pretty sure mushroom or pot wouldn't have been as exciting.

Re: Mop up chemo experiences

Posted: Tue Mar 27, 2018 6:06 pm
by rp1954
If you are going to the European dose of Xeloda, be sure to ruthlessly weed out folic acid in your diet (regular bread, fortified grains, etc) and old style multivitamins. European Xeloda patients didn't have folic acid fortified foods. The extra toxicity is to you, rather than a cancer benefit. Folinic acid (leucovorin) or natural folates are useful. About 50% of patients have a lot worse toxicity due to folic acid combined with 5FU drugs. This is discussed more in the archives.

We actually built up a B multivitamin formula without any folic acid and added liver or liver spread for the natural folate and vitamins content for long term oral 5FU treatment. Liver helped "our" blood work a lot.