Postby margiej » Tue Apr 17, 2018 7:52 pm
This is my first time posting..I have been lurking on the site for the last couple of months and have learned so much. When I was diagnosed over two years ago, I was too overwhelmed to research what I was going through. I was just on autopilot and putting my faith in my surgeon and oncologist. Probably not the best approach but it has turned out well for me so far, fingers crossed and knock on wood. I might have had an easier time if I would have read all the experiences others have gone through and all the warm advice and best wishes. My experiences with Oxaliplatin and Xeloda were very similar to what others have been posting. I resisted a port and my first Oxy infusion was in the vein on the top of my hand. My hand and my arm were so, so painful, I had a hard time sleeping the first two nights. The rest of my infusions were inserted higher up on my arm and it was much less painful. Oxy causes the extreme sensitivity to cold and it's not a joke. My daughter-in-law got me a cold bottle of water partway through my first infusion and it was a big mistake..the prickling and pain in my mouth and throat--yowza. After that I always drank warm beverages during my infusions. I was also extremely nauseous. I don't know if it was from the Oxy or Xeloda or both. The compazin didn't help at all. I got Zofran about 3 days in and it helped a lot. Also, Emend was added as part of my infusion after the first time and I always felt pretty good for about three days after my infusions after that. The cold sensitivity was pretty bad for about a week after the Oxy infusion---brushed teeth with warm water, drank everything at room temperature or warmer. I wore oven mitts to take things out of the refrigerator. You just learn what you can and can't do. My throat really bothered me ...the first night I thought I had swallowed a chicken bone or something...didn't realize that it was a chemo side effect! I still have sort of a lump feeling in my throat that started when I started chemo and am positive after reading this, that it is just a lingering effect from the Oxy. I am not a great pill taker, but I opted for Xeloda because I didn't want the port and pump. Taking the pills was very difficult for me because I was so nauseous, plus having to take them with a warm beverage wasn't the greatest. It's easier for me to take pills with juice and warm juice is kinda blech! I started at 3500 mg/day and it was dropped to 3000 partway through. Because of the vomiting and occasional diarrhea and feeling too nauseated to eat and drink, I fought dehydration. I went in for IV fluids 4 or 5 times which definitely helped make me feel better. They always gave me a liter of fluids before my infusion too. I worked 1 or 2 days a week but it was very difficult with the nausea and weakness and fatigue. My co-workers were great...running errands for me and picking up lunch, since even walking down the hall was exhausting. I mostly wanted to sleep. Also my joints were very painful...like arthritis--particularly my knees and ankles. Happily the joint pain was only temporary and went away a few months after chemo was over. Even on my week off of Xeloda, I would be very nauseous. I would generally have one or two days of feeling sort of OK before it was time to start the cycle over again. I had neuropathy in my hands and feet starting about halfway through my treatment. It was tolerable, but I'm glad I only had six rounds of chemo (I originally thought it might be 8 but my oncologist decided that 6 would be good.) My neuropathy got much worse about a month and a half after my last infusion. It was hard to drive because I couldn't feel the gas pedal or brake! My manual dexterity was affected significantly--hard to deal cards, for example! My sheets felt like someone had dumped a bucket of sand in the bed. The neuropathy gradually improved and I just have a tiny bit of numbness or tingling in the very tips of my fingers and the balls of my feet and toes are bit numb but it's very tolerable. I can walk and run without problems. Going barefoot isn't a good idea and cold still bothers my extremities a bit.
Sorry to write so much...since it's my first post I'm just blurting out all I can remember! My doctor prescribed 1000 mg of Vitamin B12 for neuropathy so I have been taking that since the end of chemo. I also take 81 mg aspirin, 1000-2000 units of D3 and a K2 supplement. I also usually take 500 mg of turmeric.
In conclusion...chemo sucks but you just get through as much as you can as best you can.
Hugs and peace to all.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/2017 and 1/2020
CT 10/3/17 clear
CT 10/17/18 clear
CT 10/17/19 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2