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Would rather jingle jangle jingle but I tingle tingle tingle

Helen321's picture
Posts: 1165
Joined: May 2012

Just dropping in to say hello and update where I'm at. Checking up on where everyone is in treatment. Very sorry to be reading about some setbacks and sad news.

I just finished round 8 of oxilaplatin and have 3 more days of xeloda. Then I get a two week break and I start radiation with just xeloda. So glad to be rid of the oxilaplatin. The 3-4 days after it are so unpleasant. I stopped working Friday before last because I wasn't finding balance with home and work, work was taking over. I'm now on disability (finally earned enough weeks) which means no more missed pay thankfully. I slept 16 hours my first Saturday home. I had no idea I was that tired. I guess I am just so used to working, I really was on autopilot. Slept 12 hours on Sunday. 12 on Monday. It's tapering off to regular sleep and a one to two hour nap every day. I've had tolerable side effects. Hurts when I chew for about two minutes, feels like my hand is stuck to a flagpole when I pick up something in the freezer, tingling in the legs especially bare legs under a blanket and some cramping in the hands and feet which bananas are helping with but not completely eliminating. Found out your cheek can turn into playdough=) I have two lines in the inside of my cheek where my teeth come together. I'm using biotine to help with that and to keep sores at bay. Short of raking the yard (got peeling skin and blisters even with gloves), my hands haven't dried much and I've been aquaforing my feet because I wear flipflops a lot and they're drying out.

I get a six week break after the radiation. Looking forward to it although doctor warns, it's actually a harder period than the radiation because your body is now trying to bounce back. According to the general oncologist and the radiologist, they've found that the radiation keeps working for 6-8 weeks after treatment and you stand a better chance in surgery by waiting. Got the impression that everything they're trying on me is a newer concept. Because I did the chemo upfront, they're saying I won't need it after surgery. I might just do it anyway, better safe than sorry. Haven't researched it yet. Will do that today. My surgery is now pushed back to February. Good news for me because now I won't be in the hospital or stuck in bed for Christmas. Very excited about that. Have my two front teeth so I'll be asking Santa for a cure. Hope everyone is doing well. Reading more posts now to catch up some more.

annalexandria's picture
Posts: 2528
Joined: Oct 2011

Sounds like you're weathering the treatment pretty well, which is great. You're one tough gal! Good to hear that surgery won't be messing with the holidays...last three out of four Christmases were pretty crappy for me due to tx and surgery, so it's a big deal to get to keep those days open on your cancer calendar. Keep us posted on how it goes! Hugs~Ann Alexandria

Helen321's picture
Posts: 1165
Joined: May 2012

Thanks, my thoughts exactly. Christmas is big in my family so I'm glad I won't be missing it. Sorry about the last 3 out of 4. Hopefully this year will be a great one all around!

ron50's picture
Posts: 1424
Joined: Nov 2001

Hang in there mate and hang onto those teeth.best wishes .Ron.

Helen321's picture
Posts: 1165
Joined: May 2012

lol I'm doing my best! I've been consulting with my dentist to do just that. There are days the teeth just hurt and all the brushing and rinsing in the world doesn't help them. Plus sometimes with the numbnessand bad taste, you can't tell what's going on in your mouth for real anyway.

steveandnat's picture
Posts: 887
Joined: Sep 2011

Sounds like for the most part your doing good. I'm glad your getting lots of rest. I think that really helps. Pray everything stays good. Jeff

Helen321's picture
Posts: 1165
Joined: May 2012

Thanks. I nap everyday sometimes several times a day now. Sleep is your friend. I also have a new grandbaby staying with me so sleep in this house at the moment is highly coveted.

dmj101's picture
Posts: 527
Joined: Nov 2011

Merry Christmas... sounds like you have a plan..
I tingle too.... all the time..
I haven't beem really following anyones posts for the last few weeks.. I guess I got burned out..
I am happy you are in good spirits.. keep up your positive attitude..

Helen321's picture
Posts: 1165
Joined: May 2012

Thanks, I'm focusing on the holidays this year, I could use the cheer. I've decorated my yard for Halloween. I bought some Thanksgiving decorations. Will be making sure if I can't do my yard for Christmas, I ask for a volunteer. The tingling is something else especially under a blanket. Since I'm on a break (the doc threw in an extra week so I get one more next week - woo hoo) the jaw has stopped hurting, fingers feel better, no cramping, shaking hands are gone and the tingling has stopped. Only thing I still can't do is pick up anything frozen and I take a few naps a day. I did my simulation yesterday so we're getting ready (had no idea my butt was that big lol).

I had total burnout myself. You want to be supportive but reading or talking about the dilemmas everyday can make your mental state spiral into a bad place. I've also turned off my cell, stopped reading my email, and I only check my answering machine once a week. People don't get that you have cancer, you are not cancer. Every single conversation turns into so how are you and how are you dealing. That's fine 10 minutes here and there but when 40 people are doing it all day every day, it becomes too much. No matter how much I say, I really don't want to talk about it, they do. It's as if they're obsessed. One of my best friends who keeps offering me money and I keep saying thanks but at the moment, I don't really need anything but I will need physical help during the surgeries told me "you need to take it when it's offered because people are going to stop offering". Thanks best friend. That was the last straw. I am not someone's pet project to make them feel good about themselves. People want me to lose my sense of humor and become super needy so they can "help me" for themselves. If I'm not laughing, then there's no point in living. If you can't laugh at a plastic mold of your big butt, what's the point of life. And I'm not going to take money from people that I don't need at the moment just so they can feel better. I can't do that to them, they work hard for that money. I've decided to tune out and focus on the immediate day in front of me. Since I have "me time", I've started focusing on getting things done around the house that have been neglected over the months and I actually lived cancer free (mostly, a few people found a way to find me when I didn't answer my phone and they worried) for two weeks. Just relaxed, took walks, watched some TV, learned some new healthy recipes, used the crockpot (amazing food comes out of that thing) that's been sitting in the box since I got it as a gift a year ago. I'm also going to get my hair done this week. My grays have grown out way too much. Someone gave me a gift card in the mail so I'll be using that. I need to put a little me in that me time=) Hope all is well with you. I'm going to read some posts today again. See how things are going with everyone.

thxmiker's picture
Posts: 1283
Joined: Oct 2010

We are sending good thoughts and prayers your way! Fight the Dragons every day!

Best Always, mike

danker's picture
Posts: 888
Joined: Apr 2012

I had 5 weeks of radiation with concurrent Chemo pump. 1 &1/4 ml/ hr 24/7 for those 5 weeks. Then resection. N o more chemo.
Ned with colonoscopy May 2011. Still Ned, You can do it too!! Just hang in there and don't be afraid. LOL

k44454445's picture
Posts: 494
Joined: Jul 2012

for posting. what you said in the posts is so true. sometimes you just need to step back & re-group. people who have not had cancer sometimes do not understand what we go thru emotionally & physically. we need our space. you are couragous & a strong person. hang in there. prayers for you & your family.

pete43lost_at_sea's picture
Posts: 3915
Joined: Nov 2010

you can search all the posts here about neuropathy to hopefully mitagate it. i did not do xeloda so my reseach was only based folfox. the teeth sounds like nerve damage i hope you get an answer asap, don't stop putting the medical system under pressure until you get the best results possible.

kristasplace's picture
Posts: 877
Joined: Oct 2007

Good decision to wait as long as possible for the colon resection! I waited 12 weeks. They didn't want to wait that long, and scheduled the surgery on Christmas Day!! I was like, "wha....? Scratch that!". So i did it a week after the new year, and never had a recurrence in the colon again.

The radiation completely killed my 3" tumor, but the downside was it completely killed my bones, too. The osteoporosis is so bad i get chronic insufficiency fractures in my tailbone. It seems more tolerable when i keep up my calcium and D3 vitamins. As far as the neuropathy? I think everyone gets it on folfox. Most of mine has gone away except in the salvary glands and hands and feet during the colder months. Some people completely heal from it.

Congratulations on being done with the oxaliplatin. Was it Folfox (oxi with 5fu)? Have you been staged yet?


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