Just got real, y'all

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Caat55
Posts: 382
Joined: Sat Dec 23, 2017 6:01 pm

Re: Just got real, y'all

Postby Caat55 » Wed Feb 14, 2018 10:09 pm

:oops: pp :oops: Hot flashes my new best friend. Hang in there Jenn!
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

JennPixie
Posts: 37
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Just got real, y'all

Postby JennPixie » Thu Feb 15, 2018 11:13 pm

Oooh! More of that cold sensitivity! Just had a sip of cold water coz hot flashes making me a crazy, reckless thang.!.
Felt like tiny little ice crystals forming then melting along my lips, over my tongue.
WEIRD sensation! :shock:
F, 44y/o
Colon cancer, ascending colon
Stage 4
NTN: T4N1M1
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.
8)

justin case
Posts: 4205
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Just got real, y'all

Postby justin case » Sat Feb 17, 2018 5:48 pm

[quote="JennPixie"]Oooh! More of that cold sensitivity! Just had a sip of cold water coz hot flashes making me a crazy, reckless thang.!.
Felt like tiny little ice crystals forming then melting along my lips, over my tongue.
WEIRD sensation! :shock:[/quote
I read a little, and I'm glad you decided on the port. I hated being confined for so long, but I would pass along some different advice. I would highly suggest you eat something before treatment. After 27 treatments of different chemos, I always felt better, if I ate before treatment . On the occasions I didn't it was brutal !
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

Lee
Posts: 5557
Joined: Sun Apr 16, 2006 4:09 pm

Re: Just got real, y'all

Postby Lee » Sat Feb 17, 2018 6:02 pm

Ditto to Justin Case.

I would always get an egg cheese breakfast sandwich on the ways to chemo.

Can you get something to help with your hot flashes. Funny I did not get hot flashes until AFTER I finished chemo. Chemo nurse told me this can happen.

good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 10 years and counting!

User avatar
horizon
Posts: 1461
Joined: Tue Apr 12, 2011 10:10 pm

Re: Just got real, y'all

Postby horizon » Mon Feb 19, 2018 9:20 am

JennPixie wrote:Oooh! More of that cold sensitivity! Just had a sip of cold water coz hot flashes making me a crazy, reckless thang.!.
Felt like tiny little ice crystals forming then melting along my lips, over my tongue.
WEIRD sensation! :shock:


Yep, it's really weird. I ended up microwaving drinking water before I drank it.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

Caat55
Posts: 382
Joined: Sat Dec 23, 2017 6:01 pm

Re: Just got real, y'all

Postby Caat55 » Sun Feb 25, 2018 2:59 pm

Jenn,
How is the chemo going? What effects are you experiencing? I have my port installed, inserted, next Thursday. I am back and forth with 5 FU and Xeloda? How is it with baby bottle?
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

JennPixie
Posts: 37
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Just got real, y'all

Postby JennPixie » Thu Mar 01, 2018 3:04 am

Okay. Got my second round going. Sitting here with my lil ball beside me, slowly doing it's thing. I had a cheese sandwich before going to hospital, and a chocolate pound cake slice when I was done w/ the 2 hour drip..
As soon as I started on the pound cake I could tell the effects were a bit more... pronounced this time.

I had read that some people could feel a discomfort or even a pain with the first few bites of something, right after that first part. Well, last time , I got the tiniest hint of it feeling different. This time, though, my teeth hurt! What? Open mouth, no prob. Close mouth, fine. But try to chew that awesomely perfect pound cake... whoa. I was so not expecting that! :shock:
But after a few careful chews and a few careful bites, it lessened, and then went away. So okay, we're cool. Just, take care with first bites. It's a thing. Got it.

But that cold thing! NOOOOoooo!!!! :o went out side while waiting for hubby to come pick me up. Touched a decorative post thingy. It was cold. It felt... almost sharp? Eh. Back inside. :(
Cold temp, not exactly pleasant, but not too bad. I have a fluffy robe. But... cold water, bad. Touching the bottle was almost stabby feeling! :shock: :o Slippers. On. Tile. Floors. Two steps into the kitchen was enough. Felt like small stones. Not the polished smooth river stones, no. These were decorative garden stones, -inch size, rough. For that more rustic part of your gardenscaping. Not comfy for footsies.
Ok. Sweetie does fridge/ freezer stuff for me. I can still cook some, but he's getting the food out for me!
And wear slippers.

Butt! What about cold POTTY seat?!? Holy cannoli, that was a shocker! :o :shock: cold porceline on bare skin... eeee-yow! I was NOT very happy about that one! I mean... i only sit half as much as i used to, as the bag is (sort of) easier to deal with in a standing position.. but this girl still has to sit for a pee! *and the rare but existent bottom poos just like a 'normal person' again! :oops:
How have some of y'all dealt w/ cold toilet seats? Please tell me that gets better...

Still trying to figure out how to balance cold sensitivity with menopausal hot flashes, lol. I may ask my doc on Friday when I go for disconnect. I'm meeting w/ oncologist that day. Might get something then. We'll see... :mrgreen:
F, 44y/o
Colon cancer, ascending colon
Stage 4
NTN: T4N1M1
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.
8)

heiders33
Posts: 220
Joined: Sat Nov 04, 2017 11:08 am

Re: Just got real, y'all

Postby heiders33 » Thu Mar 01, 2018 7:15 am

I don’t have a cold toilet seat, so I can’t help with that. But the hot flashes, yes! I don’t have a solution for that, I just ride them out. Nobody really talks about the juxtaposition of those two things, but I basically chose the discomfort of the hot flashes over the discomfort of cold sensitivity.
36 year-old female
May 2017: Dx rectal cancer at T3N2M0
MSS, no genetic mutations
June-July 2017: 28 days of chemo/radiation
September 2017: laparoscopic LAR surgery with loop ileostomy
October 2017 - February 2018: six rounds of mop-up XELOX
March 12, 2018: reversal
April 16, 2018: CEA 2.1, all blood counts within normal ranges
May 2018: CT scan showed liver spot, MRI scheduled

User avatar
Robino1
Posts: 451
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: Just got real, y'all

Postby Robino1 » Thu Mar 01, 2018 7:22 am

First bite. It's the taste buds more than the teeth. I would place the food in my mouth and slowly let them wake up. First one side then the other while slowly biting down after the first side to side wake up. It didn't NOT happen, it just lessened the intensity.

Hubby had to do all the cold stuff too. I couldn't pull anything from the freezer for about 4-5 days after infusion. Freezer would linger longer but not as severe. To cut up cold foods I would use my knuckles to hold down what I was cutting up.

Toilet seat, not an issue for me. I only had cold sensitivity in my hands, feet and throat. Maybe get a couple of rags to place on the part where your bottom makes contact? Or even line with toilet paper?

Try to remember this is only temporary. The goal is worth the battle!!
At 54 2014 1st colonoscopy colon cancer detect
Colon resect margins clear. No chemo Stage II
2017
Distend abd, pain in intestines.
CT scan seeding & Ascites
Lap diag - cancer on the omentum
CEA 217; 219
FOLFOX started 6/17
CEA 202
8/29/17 CT melting of tumor.
Latest CT scan shows 2 new tumors and return of ascites.
CEA: (2017)9/30 -109; 10/12 -99.1; 11/4 -90.7; 11/30 -70.7; 12/14 -83.4; (2018)1/4 -73.3; 2/1-84.2; 89.2; 89.8; 88.5; 81.8: 93.5; 107; 119
BRAF V600e

JennPixie
Posts: 37
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Just got real, y'all

Postby JennPixie » Thu Mar 01, 2018 9:55 am

Oh believe me, I'm loving that this is a temporary thing!
In fact, while I was at the hospital getting the drip-drip-drip, i heard the most wonderful reminder of that.
When a chemo patient gets their last treatment, here, they ring a bell to celebrate. *Don't know if that's done everywhere, or if theres a different celebratory thing for last treatment, or what... but here, we get to ring a bell. Everyone there hears that, applauds and congratulates the bell ringer.

And while I was getting my meds, I heard it, the enthusiastic jingling of someone's last treatmdnt bells. :) I applauded her success, and suddenly started feeling very emotional. That victory bell suddenly seemed like it was so much more than one person's victory.

That bell called out her last treatment, of course. But it called out ALL of our victories... "I did this! I made it! And so will you!" A sound of hope and strength and the encouragement to keep on fighting. Soon enough, we will be ringing our own victory bell.

Dig deep, find that strength. Fight like a rabid hell hound. Because it is only temporary, and we will get through. We will emerge victorious. And we will ring that bell, not just for ourselves, but for everyone else there... "we can do this! We are stronger than this disease, we are strong enough to get through these days, and we can we will get through!"

Don't know if anyone else there got so much out of that bell, but it ment a lot to me, hearing it. And I teared up thinking about it. I applauded And said thank you as she went by my little station. Don't know if she even heard me, but...



Anyway..
Temporary, yes. And my eyes are on the road ahead, not only where I am now. I got my destination (the beautiful "NEDville") in my sights! :mrgreen:


Oh! Yes, I totally didn't even think about t.p. the seat! That's a very good idea! Thank you :) even just a thin one layer should work. Like the paper covers at a public rest room.. coz I did put one of those down on the seat while there, and the cold seat was not an issue, then. So yeah, a lil bit of t.p. should do the trick :)
F, 44y/o
Colon cancer, ascending colon
Stage 4
NTN: T4N1M1
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.
8)

Caat55
Posts: 382
Joined: Sat Dec 23, 2017 6:01 pm

Re: Just got real, y'all

Postby Caat55 » Thu Mar 01, 2018 11:52 am

Heading over to get my port, yes this is real.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18

User avatar
horizon
Posts: 1461
Joined: Tue Apr 12, 2011 10:10 pm

Re: Just got real, y'all

Postby horizon » Fri Mar 02, 2018 8:54 am

JennPixie wrote:I had read that some people could feel a discomfort or even a pain with the first few bites of something, right after that first part. Well, last time , I got the tiniest hint of it feeling different. This time, though, my teeth hurt! What? Open mouth, no prob. Close mouth, fine. But try to chew that awesomely perfect pound cake... whoa. I was so not expecting that! :shock:
But after a few careful chews and a few careful bites, it lessened, and then went away. So okay, we're cool. Just, take care with first bites. It's a thing. Got it.


Oh yes. "First bite pain". With me my upper and lower jaw would almost lock together it was so intense. BUT then it would disappear and I could eat the entire meal. Such a bizarre sensation.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 6 years NED). Is this real life?

JennPixie
Posts: 37
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Just got real, y'all

Postby JennPixie » Sat Mar 03, 2018 11:39 am

Caat55 wrote:Heading over to get my port, yes this is real.
Susan

How did it go? You okay?
F, 44y/o
Colon cancer, ascending colon
Stage 4
NTN: T4N1M1
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.
8)

JennPixie
Posts: 37
Joined: Tue Aug 08, 2017 8:53 am
Location: Peach State

Re: Just got real, y'all

Postby JennPixie » Sat Mar 03, 2018 11:43 am

Well, went in for disconnect and chat with doc.
Said that there was some news on my CAT Scan.

Chest was fine, but there's a wee spot on my liver that they wanna keep an eye on.
Oh boy.
No change w/ treatment, coz if it's cancer, chemo gets it. If not, it's not something to worry about.
Still. Don't like to hear about new "spots" they want to monitor. :?

Oh well.
F, 44y/o
Colon cancer, ascending colon
Stage 4
NTN: T4N1M1
Colostomy, reversal, loop illeostomy

Started FOLFOX Feb. 14th...

A work in progress...
...Aren't we all.?.
8)

Caat55
Posts: 382
Joined: Sat Dec 23, 2017 6:01 pm

Re: Just got real, y'all

Postby Caat55 » Sat Mar 03, 2018 1:35 pm

It seems both so unreal and all too real at once, for me anyway. Yes, the chemo will get it, that's why we are doing this!
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18


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