New guy on the block starting chemo tomorrow

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BrianKeith56
Posts: 8
Joined: Mon Jun 01, 2015 2:16 pm

New guy on the block starting chemo tomorrow

Postby BrianKeith56 » Mon Jun 01, 2015 2:43 pm

Hi all,

I'm new to this forum, but have read some of the posts. Thank you for the great information and experience sharing. I had stage 3 colon cancer surgery on 4-28-2015 at MSKCC to remove a portion of my sigmoid colon. Surgery was successful, but unfortunately resulted in an unexpected permanent colostomy and now the need for chemo (1st treatment tmrw). This is my 1st experience with chemo (FOLFOX6) and I am very nervous/anxious about the chemo, and also my colostomy.

Please let me know if anyone has any experiences, tips, advice, etc., that you would share with me.

And, if there is any information, advice, etc., I can share with anyone, please let me know.

Thanks
Brian

Teddi
Posts: 241
Joined: Thu Jul 31, 2014 1:44 pm
Facebook Username: teddimcfarland

Re: New guy on the block starting chemo tomorrow

Postby Teddi » Mon Jun 01, 2015 3:52 pm

Make sure and stay hydrated while on chemo. An ounce of water per pound of body at least for the day before, day of, and two days after. Eat a good dinner the night before, and a little something the morning of. Cold things will be problematic, so enjoy frozen treats now. If you are in charge of your freezer, clean it now, as your hands might sting from the cold later. Walk during chemo ~ I did 1.5 miles a day. It keeps your blood pumping. Keep your sense of humor, there are times it will be all you've got.

Sorry you have to be here, I hope you do well on FOLFOX.
Teddi
47 at diagnosis
Colonoscopy, biopsy, CT, PET 6/14
Rectal cancer (tentatively) Stage III-b, MSS
Xeloda and radiation 25x finished 8/14
FOLFOX 5 cycles
Surgery 1/23/14 ~ T1N0MX ~ temp illeostomy
FOLFOX 3 cycles = total of 8
Illeostomy reversal 4/8/15
Clean scans x2, clear colonoscopy 9/15

skypup
Posts: 2598
Joined: Mon Dec 17, 2012 12:12 pm

Re: New guy on the block starting chemo tomorrow

Postby skypup » Mon Jun 01, 2015 4:33 pm

Hi Brian, and welcome -- and sorry you had to be here. If you search on FOLFOX tips, colostomy, and the like, you will find tons. I am wishing for you that you go through the chemo (ugh) and then never have to worry about CRC again! This is a great place for info when you run into issues.

Snoopy73b
Posts: 3
Joined: Fri Jan 16, 2015 8:17 pm

Re: New guy on the block starting chemo tomorrow

Postby Snoopy73b » Mon Jun 01, 2015 5:04 pm

Hi Brian,

Seems like we are in the same boat. I was diagnosed with Stage 3 rectal cancer in December. I had my surgery April 21st and also ended up with an unexpected permanent colostomy. I'm starting Folfox on Wednesday. Very nervous as well.

Jen

JJ2212
Posts: 268
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: New guy on the block starting chemo tomorrow

Postby JJ2212 » Mon Jun 01, 2015 5:05 pm

Hi Brian,

Here's one of the latest posts with FOLFOX tips. It should give you a good idea of what can help. But remember that chemo is very much an individual experience. You may get some but not all of the side effects and they will hit you differently than It hits others.

http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48115&p=361945&hilit=Folfox+tips#p361821

My personal tip is to try to and 'embrace' this chemo, not fear it. Sounds odd but I was petrified when I started chemo/radiation (xeloda) and I hated every minute of it. I kept waiting for the side effects to kick-in, some of which did and others didn't. I wasted so much energy on worrying about it. With FOLFOX, I tried to visualise it as a healing experience instead of dreading each infusion. Probably didn't do anything to stop side effects, but it sure helped keep my anxiety level down.

Good luck at your first infusion.

Take care,
Janie
Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri

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Sleen
Posts: 316
Joined: Tue Jan 14, 2014 7:41 am
Location: Detroit
Contact:

Re: New guy on the block starting chemo tomorrow

Postby Sleen » Mon Jun 01, 2015 5:54 pm

Hi Brian,

I'm glad you found us. Good luck with your first chemo treatment tomorrow. Did they tell you how many to expect?
With oxaliplatin you'll want to avoid iced drinks post-treatment for at least the first day! I chronicled my treatment experience on my blog (see sig)--I was on FOLFOX, too. I so vividly remember that first icy drink I took!

Bring stuff to do with you. I brought a laptop most times. You'll likely be in the chair for several hours.

Good luck!

Celine
my blog: Cancer Riot

NED since April 2016!
April 2016: lower left lung lobectomy. NED
8 mo. f/u: 1 of 7 tumors progressed.
6 mo. f/u PR confirmed (Jan 2016)
Jul 2015: NIH TIL trial NCT01174121 NCI/NIH Surgery Branch FAQ
Dec 2014 confirmed stage IV w/bilateral lung mets
FOLFOX + Radiation (bladder)
KRAS G12D :: MSS
dx Sep 2013 @47yo: IIIc T4b N2b MX [bladder invasion, 17/21 lymph nodes]

Married 28 yrs. kids: 24, 21, 17, 12, 10
SE Michigan home schooler, unemployed mechanical engineer, and programmer.

esk2poo
Posts: 499
Joined: Sat Dec 17, 2011 7:17 am
Location: New Jersey

Re: New guy on the block starting chemo tomorrow

Postby esk2poo » Mon Jun 01, 2015 6:20 pm

Make sure you take all of your anti neaseua medicines like clockwork those days of the infusions. I had 3 of them and was not sick once.
Good luck,
Allen
Dx 8/23/11 stage 3b crc
3 of 11 LN's
resection 9/15/11
folfox start 10/31/11 12 sessions
De-ported 6/2012
clear CT 7/2012
Clear colonoscopy 9/2012

justin case
Posts: 4269
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: New guy on the block starting chemo tomorrow

Postby justin case » Mon Jun 01, 2015 6:39 pm

Eat breakfast.
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

KWT
Posts: 3214
Joined: Thu Jul 11, 2013 7:22 pm

Re: New guy on the block starting chemo tomorrow

Postby KWT » Mon Jun 01, 2015 6:41 pm

Good luck to you, Brian, you're in good company.

Hopefully you're getting calcium and magnesium premeds as well, they made a big difference for me with folfox.
Last edited by KWT on Mon Jun 01, 2015 7:26 pm, edited 1 time in total.

cathy123
Posts: 665
Joined: Sat Nov 08, 2014 3:36 pm

Re: New guy on the block starting chemo tomorrow

Postby cathy123 » Mon Jun 01, 2015 7:19 pm

Good luck Brian and Jen. I am a few treatments in - no fun but not the end of the world either. Try to stay hydrated (not always easy when you can't drink anything cold, but do your best). And be prepared for some weird muscle/nerve stuff - eye twitching, claw hand... But it passes.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

BrianKeith56
Posts: 8
Joined: Mon Jun 01, 2015 2:16 pm

Re: New guy on the block starting chemo tomorrow

Postby BrianKeith56 » Mon Jun 01, 2015 8:13 pm

Hi.

Thank you all so much for your responses and excellent information and advice, and for sharing this experience with me. It really helps to have wonderful caring people like you to talk with. I wish you all the best too.

Jen,

I hope everything goes as best it can with your treatment. I will plan to let you know how things go with my first treatment and let's think healthy and strong, and know everything is just temporary, and we will get through this.

Celine,

I will be doing FOLFOX every 2 weeks for 12 sessions (about 6 months total).

Thanks again all and take care.

Brian

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teacher49
Posts: 183
Joined: Sun Aug 14, 2011 10:34 am

Re: New guy on the block starting chemo tomorrow

Postby teacher49 » Mon Jun 01, 2015 9:16 pm

Staying hydrated is very important BUTT remember, when you are hooked up to the infusion in your ONC office......you can get up disconnect from the wall/ take your IV pole with you to the restroom temporarily! I was such a dummy, waiting for the nurse to come back and let me get up and go........too late!

You may find that you are seriously constipated after infusion day.....if not hydrated enough. What everyone here calls "milk duds" output. Then diarrhea. It may take some time to regulate that.

Freezer buzz in the fingertips is immediate. Watch for any other oddities. I had a sudden bronchospasm after leaving my 9th infusion too soon. I stopped at store and must have stood right under the air vent....starting wheezing and I don't have asthma. Luckily I was in a Walgreen's and they gave me Benedryl right away. It went away.

Take care.
F, 62,CRC, Adenoca, mod diff
cT3N0M0 Stage IIA May 2011
chemorad
APR on 9/27/11 Margins & Nodes Neg
comp.after surg/2 pelvic abscesses/Sepsis/Hosp 40 days
10th FOLFOX 6/6/2012 feet went numb
5FU to finish
NED 12/21/2020

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: New guy on the block starting chemo tomorrow

Postby jhocno197 » Mon Jun 01, 2015 9:52 pm

The colostomy can, surprisingly, be a 'good' thing in some instances. My husband ended up with C Diff a couple months ago, and I think it was actually easier on him with the colostomy than it would have been otherwise. It does take some getting used to. This website has been very helpful: http://www.colostomyassociation.org.uk/ ... c%20Stomas .
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

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Annemiek
Posts: 304
Joined: Tue Apr 07, 2015 4:05 am
Location: The Hague, Netherlands

Re: New guy on the block starting chemo tomorrow

Postby Annemiek » Tue Jun 02, 2015 2:22 am

Hi,
I've just finished my sixth folfox round ( halfway yah!) all of the above I have been taken to heart and it helps, go with the flow, stay active and rest if you feel like it. I have physiotherapy from a therapist specialised in oncology two times a week and apart from the half hour exercise, she's a source of information and wisdom, keeps me upbeat everytime.
I also found that by now Water starts to taste horrible and have taken to gatorade and other sports drinks, also good for hydration. An most importantly, if you eat chocolate icecream with lots of whipped cream it is fine!!!

The first round is the hardest. As soon as you get the rythm of the week on week off it gets better you kindoff know what to expect.

I have a permanent colostomy as well, and to be honest, I have blessed mine several times during diarhea during chemo, no running! I pooh from the comfort of my own bed :wink: Make sure you have something that youcan put in the bag that thickens it and removes the smell..

These folks here are terrific! They will help you get through this!

Good luck,
Annemiek

43 yr mum of a girl aged 7
10/2014 coloncancer stage IIIc
11/2014 HIPEC, tumor removed + 12 positive out of 60 ln
hysterectomy, abdominal lining partly removed
Peridonitus, stoma fitted, 6 abcesses drained in abdomen
MSS, kras
3/2015 Folfox, someones playing kill Bill inside me
9/2015 finished 12 rounds,
First scan results: NED!!!!!!!!!
4/2016 ct scan: NED!!!
7/2016 ultrasound: NED
10/2016 cr scan: NED
5/2017 ultrasound: NED 2,5 yrs!
CEA 8/2017 1.8 stable.
CT scan 11/2017 NED! 3 yrs
CEA 1.9

Delinda2
Posts: 483
Joined: Fri Jan 16, 2015 6:28 pm
Location: Washington state

Re: New guy on the block starting chemo tomorrow

Postby Delinda2 » Tue Jun 02, 2015 7:36 am

Welcome, although I'm so sorry you need to be here. Right now six months seems like forever but it will go by quickly. I'll repeat, hydrate, then hydrate more, more, more. I had to add IV hydration to day of disconnect & then later to infusion day as well. Not a big deal except it added 2 more hours to an already long day. Be sure to let your onc know all side effects you have. Keep a list because it's easy to forget details. He will want to know how many episodes of vomiting & diarrhea, day & time, etc. I had very little vomiting but did have a bit of diarrhea. Keep Imodium on hand & ask onc for his instructions - they were different than what was on the box. Don't be alarmed if the dosage is reduced due to side effects. Everyone is different & there is wiggle room without reducing efficacy. For me,the steriods kept me awake for 48 hours, then I would crash. That finally wore off after several rounds. Talk to the chemo nurses too, they have some good tips. I also had to have shots to increase my white cell count, which meant my treatment was postponed a few times. Just be prepared for changes & don't let them upset you. Chemo is a process that has to be fine tuned to fit your body. Good luck to you & let us know how it goes. This group was such a help, especially at first. Take care. XXOXO, Delinda
63 yrs,wife & mom
4/14 dx colon cancer,3C,9/22 nodes
Lymphatic,venous,&perineural invasion
<1cm margin,poorly differentiated
6/14 colostomy take down
7/14 FOLFOX w/9 Nulasta shots
2/16 dx new primary of sigmoid colon
6/16 surgery-rescection on sigmoid, total hysterectomy, temp ileo, stage 4
"I AM the storm."


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