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Re: New Member here on the forum
Posted: Mon Mar 19, 2018 5:04 pm
by Caat55
DITTO THAT
Re: New Member here on the forum
Posted: Wed Mar 21, 2018 12:07 pm
by retiredteacher
What is the local wisdom on minimizing CAPEOX side effects? I remember seeing something on avoiding folic acid? Also, what are CAPEOX veterans' experiences with hair loss? Complete? ThInning?
Re: New Member here on the forum
Posted: Wed Mar 21, 2018 2:42 pm
by Caat55
retiredteacher wrote:What is the local wisdom on minimizing CAPEOX side effects? I remember seeing something on avoiding folic acid? Also, what are CAPEOX veterans' experiences with hair loss? Complete? ThInning?
The nurse who did my chemo teaching gave me a pamphlet and Folic acid was contraindicated. I will check to see what else is mentioned. 1cup water, salt and baking soda gargle for mouth sores twice a day.
Re: New Member here on the forum
Posted: Wed Mar 21, 2018 3:07 pm
by heiders33
I didn't experience hair loss, just thinning. And that was really more toward the beginning. Once my body adjusted the thinning stopped.
Re: New Member here on the forum
Posted: Thu Mar 22, 2018 1:11 am
by O Stoma Mia
retiredteacher wrote:What is the local wisdom on minimizing CAPEOX side effects?
O Stoma Mia wrote:- Common side effects of XELOX (CAPEOX) are:
' Each of these effects happens in more than 1 in 10 people (10%). You might have one or more of them.
* Numbness or tingling in fingers and toes
* Increased risk of getting an infection
* Breathlessness and looking pale
* Bruising, bleeding gums or nosebleeds
* Tiredness and weakness (fatigue) during and after treatment
* Feeling or being sick
* Diarrhoea
* Mouth sores and ulcers
* Loss of appetite
* Soreness, redness and peeling on palms and soles of feet
* Constipation. ' '
. - Occasional side effects
Each of these effects happens in more than 1 in 100 people (1%). You might have one or more of them.
* Hair loss
* Headaches and dizziness
* Watery or sore eyes
* Tummy (abdominal) pain
* High levels of bilirubin in your blood
* Kidney changes
* Difficulty swallowing or breathing
* Periods stopping
. - Rare side effects
Each of these effects happens in fewer than 1 in 100 people (1%). You might have one or more of them.
* Ringing in your ears (tinnitus)
* Heart problems
* An allergic reaction to oxaliplatin
Re: New Member here on the forum
Posted: Thu Mar 22, 2018 11:54 am
by Caat55
Hope it's going well for you. I am doing premed so far, anti nausea and now steroid.
How's it for you?
S
Re: New Member here on the forum
Posted: Thu Mar 22, 2018 12:30 pm
by heiders33
Good luck to you both! Watch out for any signs of allergic reaction. Also, when you are done, watch out for any reactions in your eyes and face and mouth to cooler air. This caught me by surprise the first time - my eyes twitched and I had trouble talking. Even if it's not that cold where you are, it could still happen. Or it might not - everyone reacts differently!
Re: New Member here on the forum
Posted: Thu Mar 22, 2018 3:18 pm
by Caat55
heiders33 wrote:Good luck to you both! Watch out for any signs of allergic reaction. Also, when you are done, watch out for any reactions in your eyes and face and mouth to cooler air. This caught me by surprise the first time - my eyes twitched and I had trouble talking. Even if it's not that cold where you are, it could still happen. Or it might not - everyone reacts differently!
Thanks, just hand cramping and peeing a lot. Hope you are well too? Last bag, calcium and magnesium then home.
S
Re: New Member here on the forum
Posted: Thu Mar 22, 2018 7:08 pm
by retiredteacher
Thanks! Went very well - until the end! Twitchy eyelids check. Went to the ladies room and started having breathing problems - they think allergic reaction, but it was at the very end of infusion! Unable to breathe by the time I got back to my chair. That's some scary stuff! Holy crap! Drunk and goofy from all the Benadryl they shot into me. Vein hurts like hell from IV; nurse says that vein will actually spasm from the chemo and suggests heat next time. If it's only once every three weeks I can handle it. Also just knowing what it is - I was loosening the tape thinking a had a skin pinch. Next time they are going to add Benadryl and Ativan and I'll sit close to the nurse's station. Other than that (Mrs. Lincoln) everything went smoothly!
Re: New Member here on the forum
Posted: Thu Mar 22, 2018 7:09 pm
by retiredteacher
Susan, I did not receive calcium etc. Any idea what it is for - should I ask next time?
Re: New Member here on the forum
Posted: Thu Mar 22, 2018 7:31 pm
by Caat55
That's sounds so scary. I hate benedryl. How long did it take?
It was easy with the port, They gown and mask up, I have to breathe away from the site to prevent contamination. I had some thick feeling in my throat at the very end but was able to breathe, it kind of feels like the beginning of a cold but it came on so quickly, so they were okay with it,The minerals are possibly going to help with neuropathy, science is out but the Dr. feels like there is no harm and only potential benefit.
tying is very difficult right now, can only use index finger of right hand, fingers are cramping, so typos are to be expected. I just had the jaw thing to I have read where my jaw feels locked up initially then it relaxed.
One down, four to go.
Susan
Re: New Member here on the forum
Posted: Thu Mar 22, 2018 8:16 pm
by heiders33
retired teacher, I had to get the port after my first infusion because my arm hurt for a good week afterward. If your arm continues to hurt I would recommend looking into the port. It’s really not bad to get put in, and it makes everything easy and painless.
Posted: Fri Mar 23, 2018 12:27 am
by retiredteacher
Do not have this site set up on my phone yet, only desktop; will have it by next time. Noticed a very weird "stupid feeling" in my hands/fingers at the end. They felt very disconnected - like numb and asleep without
the pain. Also got a coughing fit after the Benadryl and shooting pains in my jaws, right and left, seem connected to salivary glands - repeats when eating. The cold sensitivity on the hands is REAL - I was moving cooler room temperature water bottles to the bedroom from the kitchen pantry and had to drop them. Seems weird that something that warm would cause discomfort. (Not a fan of water bottles, but we are on untreated well water. Good quality, but too many unknowns in the piping system etc. Once the cancer treatment is over, the plastic bottles will be gone.) Set up some of the water bottles in sous vide pot in the kitchen - set to 98.6 F. Heiders, thanks for the info - will see how the next one goes - at least the port will be an option. (Good luck on your reversal recovery - hope it is going smoothly for you!) Susan, hope it is smooth sailing for you this week! Mia thanks for the info - great website ---
Re: New Member here on the forum
Posted: Fri Mar 23, 2018 1:37 am
by O Stoma Mia
retiredteacher wrote: ... I was loosening the tape thinking a had a skin pinch...
Be very, very careful with the IV cannula site. Make sure that you don't do anything that will cause the IV needle to become dislodged or jerked around.
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=44791&p=322567#p322567
Re: New Member here on the forum
Posted: Fri Mar 23, 2018 9:46 am
by Caat55
My husband thought I was stoned last night, BF said I was manic....must have been the steroids. We have great water but as it is right off the mountain freezing cold from taps. I will put a jug on pellet stove to keep it warm, don't have a sous vite pot.
How is your arm today? Do be very careful with I Vsite during chemo, I have had several patients over the years with big hand issues come to me for therap due to chemo infiltration.
My friend got a small filter under kitchen sink to treat water from well, have you looked into that? Where do you go for Chemo?
Pins and needles feelings are real, almost constant once I got out of bed, don't know the trigger.
S