New Member here on the forum

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retiredteacher
Posts: 84
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Fri Mar 23, 2018 1:09 pm

Thanks Mia - more good info. The tape I removed was a couple inches toward the shoulder, proximal, and past two other tape stations. Nurse claims to be a tape artist! :D

Thanks Susan, I will check into the water filter! Bob and I were workaholics for so many years and personal/home things like this just got overlooked or put on the "forget" list.

I see Aminder Mehdi in Stockton. Can't say enough good things about him - he took care of the hubby's colon cancer 13 yrs ago and his SMALL cell lung cancer 6 years ago. Onco nurses are great. He walked through my Stanford referral and got me back onboard after I gave up.

Don't need the sous vide, I figured out. Just drop into a pot w/115 degree tap water, no big deal. The chemo does affect ... um .... cognitive abilities ... :shock:

Pins and needs in toes. Cannot use silverware - too cold; going to need plastic cutlery.

Thanks for the advice and comments, everybody VERY HELPFUL!
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

retiredteacher
Posts: 84
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Fri Mar 23, 2018 2:07 pm

Also just watched a happy cry video on Facebook - crying also hurts! Definitely an effect on salivary and tear glands.
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

Caat55
Posts: 482
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Fri Mar 23, 2018 2:24 pm

I went for a walk with my friend up the hill today, my usual exercise. When I got the cold air in my throat I started breathing like I had croup, freaked out both myself and my friend. I put my hand over my mouth and nose and warmed up the air and was able to breathe normally again and continued on . Cold is definitely brutal.
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
Last Oxaliplatin 7/5/18, 5 rounds

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O Stoma Mia
Posts: 1357
Joined: Sat Jun 22, 2013 6:29 am
Location: Traveling abroad

Postby O Stoma Mia » Fri Mar 23, 2018 3:14 pm

retiredteacher wrote:... we are on untreated well water. Good quality, but too many unknowns in the piping system etc...

I have a special interest in groundwater contamination because most of the persons I know who had gastrointestinal cancers lived outside metropolitan water districts and had their own private, domestic wells.

Have you had your well water tested for contamination?

https://water.usgs.gov/nawqa/studies/domestic_wells/nitrate.html

User avatar
Robino1
Posts: 462
Joined: Fri Aug 11, 2017 12:09 pm
Facebook Username: Robin.lawthers
Location: Florida

Re: New Member here on the forum

Postby Robino1 » Fri Mar 23, 2018 5:55 pm

retiredteacher wrote:Also just watched a happy cry video on Facebook - crying also hurts! Definitely an effect on salivary and tear glands.


Yeah, I learned early on to not watch tear jerkers.... Those are literately tear HURTERS! Man did that hurt!

Those side effects should subside in a few days. It helps to keep a log of when they start and when they end. It gives a nice point of reference to when you can start doing things again.

Just remember, they are only temporary. Once you get past the chemo, they will all go away. The only one that I worried about was the neuropathy.
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

Soccermom2boys
Posts: 178
Joined: Tue Nov 10, 2015 10:29 pm

Re: New Member here on the forum

Postby Soccermom2boys » Fri Mar 23, 2018 10:12 pm

Hey girls—was reading through your chemo experiences and wanted to share something I found helpful. Between the pins and needles and that occasional cramping/muscle locking of your hands, I found a microwaveable gel heating pack to be a go-to resource during my four months on FOLFOX. They cost around $5 at Walgreen’s but can be bought at any drugstore and need 30 seconds in a microwave to get pretty warm. The moment my hands would wrap around that beaded gel pack— instant relief. So much so I bought a second so that when one was losing it’s heat I had a back up to fire up.

I can remember just the “coolness”of touching my clothes in the morning as I would get dressed for work hurting with the pins and needles pain—it is amazing how little something has to be on the “cool”side to set off that pain. I found quick running them under warm water made the pins and needles go away, but since you can’t stand there with your hands constantly under warm water, that was when I tried the gel heating pack and wow, what a difference. Just a thought ladies as I have been reading your threads as you are all just starting the chemo process.

As sucky as the process is, it is so wonderful to have this forum and each other to share the experience with since they can truly empathize on a level loved ones and friends cannot. I am almost two years out of treatment but read through the forum daily as I cannot say enough how much it meant to me to have this place as a sanctuary to come to when going through chemo and the mental anguish of it all. I hate that all of us on here have had to go through such a nightmare of an experience, but yet it warms my heart when I read through the various threads the genuine level of care and concern and friendship and willingness to share and help “complete strangers” all because of this beast, Colorectal Cancer. Sorry, got a little emotional there, but just reading through your posts to each other touched my heart because I can so clearly remember being right where you are now, in the beginning of it all, trying to figure out how I was going to make it—which I did thankfully and so will each of you. :D
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox

retiredteacher
Posts: 84
Joined: Sat Oct 21, 2017 1:34 pm

Re:

Postby retiredteacher » Fri Mar 23, 2018 11:51 pm

O Stoma Mia wrote:Have you had your well water tested for contamination?
https://water.usgs.gov/nawqa/studies/domestic_wells/nitrate.html


I hear you - we are in a heavy ag area, past mining area, etc. Have a good water test here - but not sure the chemistry profile - different companies test for different things. More concerned about industrial chemicals, ag chemicals from long ago still persisting in soil, heavies from past mining. Was looking for a water testing lab last week but got distracted. Hubby also had a career in ag chem and is a fairly heavy handler. After 20 years, I finally put my foot down hard and had him move all the labelled stuff out to the shop - he was coddling it in the house garage for beneficial temperatures. Anyway, it is on my list of things to do. :cry:
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

retiredteacher
Posts: 84
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Tue Mar 27, 2018 6:21 pm

Soccer Mom thanks so much for your comments - this is a very special place!

Called today and got scheduled for port installation next Monday. The IV pain was pretty intense and lasted about three days. I think a port will be worth it. Had an emotional meltdown yesterday I am thinking may have been something to do with steroids?!?? Sleep has been averaging about 4 hours - got an Ativan prescription , hopefully will help.
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

heiders33
Posts: 247
Joined: Sat Nov 04, 2017 11:08 am

Re: New Member here on the forum

Postby heiders33 » Tue Mar 27, 2018 8:34 pm

I had a really hard time during my first cycle and felt really low. I now look back and wonder if I was crashing from steroids. If I had to do it over I would ask about the steroids and whether they could be reduced. I think I assumed it was the chemo and not the steroids, but I could have been wrong.
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 inconclusive
August 2018: PET

Caat55
Posts: 482
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Wed Mar 28, 2018 12:53 pm

Glad you are getting the port. It is weird having it in your chest but the chemo part didn't hurt there or afterwards.
Steroids are quite literally a trip for me.
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
Last Oxaliplatin 7/5/18, 5 rounds

retiredteacher
Posts: 84
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Mon Apr 02, 2018 8:49 pm

Got the port installed today, yay! Anticipate an easier time next round. Using the Ativan for sleep - is making a huge difference. Friend sent me a link for the Vog mask for the next round - sensitivity to cold - she was considering due to the Sonoma fires last year - imagine it might be nice for walking on those cool mornings .... https://www.vogmask.com
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

Caat55
Posts: 482
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Mon Apr 02, 2018 11:36 pm

What kind of difficulties are you having with sleep? I am grateful for the warmer weather, just find exercise in the cool air to be too much. Missed being able to drink a cool beverage this weekend but room temperature water/juice mix was okay.
I am going to email doctor about the dex, is it really necessary?
S
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
Last Oxaliplatin 7/5/18, 5 rounds

Caat55
Posts: 482
Joined: Sat Dec 23, 2017 6:01 pm

Re: New Member here on the forum

Postby Caat55 » Thu Apr 12, 2018 9:14 am

Good luck today! Round two
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
Last Oxaliplatin 7/5/18, 5 rounds

retiredteacher
Posts: 84
Joined: Sat Oct 21, 2017 1:34 pm

Re: New Member here on the forum

Postby retiredteacher » Sat Apr 14, 2018 9:43 am

Okay, Round Two: Port made a huge positive difference not dealing with arm pain. Woot! :D

Side effects came on stronger, faster - all during the last 30 minutes of infusion. The nurse slowed down the infusion from the start to moderate, based on the last round, but to no avail. I was there from ten in the morning until after 4 PM.

Temperature sensitivity is kicking in at room temperature; the big problems seem to be related to the last hourly visit to the ladies room and that cold toilet seat. I can cover my mouth and breathe through my hands - to no avail. It's the butt cold. :oops: Last toittie break, I refrained from putting my butt on the seat and did not get the throat shut-down. Go figure.

Other side effects: eye twitch, left eye went into half closed position, claw hand, forearm weakness, floppy ankles, developed a lateral 'S' lisp, and had a hard time forming words. Otherworldly feel. First bite, painful tears. Nurse and hubby said they observed nothing weird about my talking or walking and nurse says she has never seen these types of side effects. Eyes were obvious to them both. I spoke to her about the emotional crash from last time - she proposed cutting back on the steroids next round, but ended up giving me an extra shot of steroids to get me home. Oncologist is proposing staring oral steroids day prior to counteract the side effects - if I can stay on the Ativan and get some sleep the emotional crash may not be as big a deal.

I ate quite a bit Thursday - snacked in the clinic, had a Subway sandwich for lunch, and a Stoffers meat loaf and mashed potatoes; yesterday Cornish game hen for bkfst, mac and cheese for lunch and salmon and pesto pasta for dinner, topped by a bag of Ghiradellli semi sweet kisses in bed at ten PM. About 80 oz liquid consumed Friday. Am downing big soup mugs of warm water cut with Gatorade - side effects Friday were completely manageable - they seemed minimized or maybe I am just prepared, or possibly less hyper-vigilant. Oncologist says side effects will be minimized by getting the chemo out of the system ASAP with liquids. I was able to hold a regular fork and didn't have to use plastic. Hubby is getting bolder in the kitchen and trying to cook for me. A couple funny mistakes, but he's survived. When this is all over, I think he'll enjoy taking cooking classes with me.
RC, F, 63 at diagnosis, Sept. 2017
Adenocarcinoma 6.3 - 7 cm tumor (PET)
Initial path, MSS, G2,
Stage est. T3N0M0 PET only
2500 Cap/RT Oct/Nov18; 25 treatments
"Near complete metabolic response" PET Jan 2018
CEA 0.5 Oct. 2017, Jan. 2018
MRI Feb. 2018 for Presurgical staging yT2 N0 12 cm from AV 3 cm in size
LAR Feb 20 yT1N0M0 0/21 G1 0.3 cm in size
CAPEOX starting March 2018, oxi and cap reduced to 80% at cycle 3
Completed 4 cycles CAPEOX; stopped due to gut issues.

heiders33
Posts: 247
Joined: Sat Nov 04, 2017 11:08 am

Re: New Member here on the forum

Postby heiders33 » Sat Apr 14, 2018 9:50 am

The nurse has never seen those types of side effects, seriously? I had very similar side effects right after infusion. I didn’t know ahead of time about the eye twitching and shutting.
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 inconclusive
August 2018: PET


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