what should I expect on the first day of chemo?

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Aqx99
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Re: what should I expect on the first day of chemo?

Postby Aqx99 » Mon May 08, 2017 11:43 pm

Thanks for starting this thread. I'm going to be taking notes for when I start chemo after my surgery.
Anne, 40
Stage IIIB Rectal Cancer
T3N1bM0
2/21/17 Diagnosis, Age 39
2/21/17 CEA 0.9 ng/mL (Siemens Chemiluminescent Method)
3/23/17 - 5/2/17 Chemoradiation, 28 treatments
6/14/17 Robotic LAR w/ temp loop ileostomy, ovaries & fallopian tubes removed, 2/21 lymph nodes positive
7/24/17 - 12/18/17 CapeOx, 6 Cycles
7/24/17 Diagnosed w/ precursor ovarian cancer
9/6/17 CA 125 11.1 U/mL
11/27/17 CEA 2.6 ng/mL (Roche ECLIA Method)
12/5/17 CT showed NED
12/13/17 CEA 2.9 ng/mL (Roche ECLIA Method)
1/23/18 Reversal

Swirdfish
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Re: what should I expect on the first day of chemo?

Postby Swirdfish » Tue May 09, 2017 2:39 am

Hi,

I haven't got much advice on what you can do about side effects, and I found folfox horrible. Every time infusion day rolled around I felt sick just thinking about it. Nothing can really describe the taste and the sick feeling that your body succumbs too. I had everything from first bite, nausea, sleeping issues, chemo head, fatigue (bad fatigue). I actually didn't take any medication through the whole process, and it actually wasn't too bad. I also worked with my 48 hr pump and the rest of the weeks. I would sleep at work if I needed to, I would just get someone to wake me up after and hr or so.

Anyway its been perhaps 2 months since my last chemo, and im finding the neuropathy seems to be getting a little worse, even though I've finished the treatment. My fingers seem to be worse then previously, and I believe I can now feel it in my feet. Remember let your ONC know everything. I never had my oxy reduced, but I only had 8 cycles.

I felt sleep actually got me through the rough days. Lots of sleep. That and the glass of red wine. :P

Overall it goes very fast.
06/2016 Went in for colonoscopy came out with a tumor. Age 35
12cm from verge at junction. Rectal cancer.
Clinical stage T3 NO MO
Temp illestomy
Completed 5FU and Radiation
LAR surgery planned 13 Oct 2016
Completed ULAR surgery 11-10-2016.
0/22 nodes
pT3 N0 M0 R1
Stage 2A

Pathology reviewed and changed
ypT3 N0 M0 R0

Started folfox 21-11-2016
5-4-17 NED
Reversal 12-4-17

Tdubz
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Re: what should I expect on the first day of chemo?

Postby Tdubz » Tue May 09, 2017 7:39 am

Sleeping with the pump actually wasn't that bad last night. Probably because I had such a long day and was pretty tired. I strapped it on like a messenger bag and left it on my chest all night. I slept like a baby, which between the colectomy and port surgeries is something that I haven't done in a while. Today I start taking the anti nausea medicine that is a steroid, I forget what it's called but I'm sure that will change my sleeping habits, or so I'm told. Only new side effect I've had this morning is it sounds like I'm losing my voice.

P.s. So many of you were diagnosed so young (I'm 36). It's terrible that we are having to deal with this at this age. everywhere I go cancer related, I'm always the youngest one there. This website has made me realize I'm not the only one going through this at this age. While I hate that we have to do this so young, I'm glad we have this place where we have each other's back, as well as the wisdom of those who have been dealing with this much longer then we have.

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horizon
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Re: what should I expect on the first day of chemo?

Postby horizon » Tue May 09, 2017 8:24 am

Tdubz wrote:Well good news, it wasn't anywhere near as bad as I thought it would be. I ate a decent breakfast.i got there and they hooked up the port to draw blood. Didn't hurt by any means but just felt a little weird lol., but the port made everything else super easy. I was there for 6 hours so I had a few snacks and ate lunch, all of which was fine. I eventually took a nap. I think I've only felt one side side effect which was the first bite syndrome, but it was mild and went away quickly.


Your first chemo was so much better than mine. I was against getting a port. The nurse couldn't get the IV started in my arm and had to keep retrying. Finally she had to go to my other arm and try more than once to get it in. Did I mention that I absolutely hate needles? After that I got a port installed.

I hear you about being the youngest one in the waiting room. One time my mother was with me and they handed paperwork to her because they assumed she was the patient.
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?

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juliej
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Re: what should I expect on the first day of chemo?

Postby juliej » Tue May 09, 2017 5:46 pm

Tdubz wrote:Today I start taking the anti nausea medicine that is a steroid, I forget what it's called but I'm sure that will change my sleeping habits, or so I'm told.

I hated taking steroids. They kept me up all night and made my stomach feel like it was full of sea monkeys! If it bothers you too, ask for a reduced strength. I ended up dropping it entirely.

One tip: I found that taking an Ativan before bedtime really helped with insomnia and morning nausea (two for one!). If you don't have a script for it, ask your onc for one.
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 10/2/2017, CEA<1

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kellywin
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Location: Northern CA

Re: what should I expect on the first day of chemo?

Postby kellywin » Tue May 09, 2017 5:49 pm

Ditto as Julie regarding the steroids. They actually cut mine way back after the first round - I felt like I was going to jump out of my skin. The side effect was the chemo hit me like a freight train right away. I'm sure someone else mentioned this, take the anti-nausea even if you don't think you need it. Way easier to stay on top of it than to try and chase it.

Glad your first session wasn't too bad.

Edited: Typo's fixed. Apparently I can't spell.
Kelly, mom 12 yo girl
Dx 11/15/12 Rectal Cancer @ age 40
Stage IIIC
5.5 weeks Xeloda & Radiation - complete 2/5/13
Colectomy 3/12/13, 7 of 14 nodes positive - no ileo
4/24/13-8/20/13 - 5 rounds Xelox, 1 Xeloda only
7/2015 Clear colonoscopy!
4/2017 Clear CT!

BIG ROB 69
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Location: Long Island, NY

Re: what should I expect on the first day of chemo?

Postby BIG ROB 69 » Tue May 09, 2017 10:53 pm

I installed a flexible shower head and would put my pump in two plastic bags, so at best I could shower three quarters of body, including stinky parts:) Made sure the port area did not get wet. Also pack different kinds of snacks bc you never know what you're gonna be in the mood for. Good luck on your journey to Nedville.
3/18/2015 DX CC Stage3/4 49YO MALE IN NEW YORK
Inoperable...hepatic artery
11/15 oper to rem block...colon bypass
4/16 oper to remove scar tissue
5/16 Lynch pos.
10/16 Two bile tubes installed to relieve jaundice
So far I have done the three main chemo drug rounds and on 12/19/16 start Keytruda.
No chemo after 8/3/16 CEA: 10/14/16-409 12/19/16- 887 Mostly my CEA was in the 140-180 range.
CEA: 1/9/17-415 1/30/17-156.2 2/20/17-120.8 3/13/17-98 4/21/17-83.6 5/12/17-64.7 6/1/17-32.1
7/25/17-32.6

Tdubz
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Re: what should I expect on the first day of chemo?

Postby Tdubz » Wed May 10, 2017 9:00 am

Today I get the pump out. Looking forward to that, although I hear the next few days after the pump is removed are the worst. Hopefully that's not the case. Cold sensitivity went away. Main side effect has been joint pain and a slight amount of nausea.

sammer718
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Re: what should I expect on the first day of chemo?

Postby sammer718 » Thu May 11, 2017 4:56 pm

Congrats on getting your first chemo out of the way! My worst days are the day I get the pump out and the day after.
I went yesterday to get disconnected and the lady next to me thought I was 16. I'm 28.

I'm feeling pretty naseous this time around and really constipated. They told me to watch out for diarrhea with the ironotican but it's the opposite. Probably from the anti nausea meds.
28 y/o female.
Stage IIIc colon cancer 9/2015. Sigmoid colon resection, removal of tumor.
12 folfox/5fu treatments 10/15- 3/16.
Clear CT scan 4/16.
Clear colonoscopy 7/16.
Clear CT scan 10/16.
Found enlarged lymph nodes in peritoneal cavity 4/17 on CT scan.
Pet scan confirmed enlarged retroperitoneal lymph node 4/17.
Started FOLFIRI + Avastin 5/17

Tdubz
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Re: what should I expect on the first day of chemo?

Postby Tdubz » Thu May 11, 2017 7:25 pm

Hey guys, if you don't mind, I might just try to keep updating this thread with my experience. It's therapudic to write it down and hopefully it helps others. Yesterday I got the pump off. Great relief! But I was pretty tired and experienced some chest pain before going to remove the pump and then several times afterwards. Called the doc and gave me Prilosec and said not to take the 2nd dose of dex. It seemed to help. Today (day 4) I had a few chest pains again and pretty much just laid around in bed. Doc called to check up on me and said to lay off the dex for today. Finally got out of bed and I'm glad I did. It was great to be with the family. I felt normal lol. Now if someone could just make room temp water taste good! So far it seems to have been an ok week. I think the worry of getting side effects this week was the bigger problem then the side effects themselves.

I'm planning to try and get outside tomorrow. Looking forward to an "off" week. Happy Mother's Day to all you mothers out there!

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CRguy
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Re: what should I expect on the first day of chemo?

Postby CRguy » Thu May 11, 2017 7:33 pm

You should absolutely turn this into your own Chemo Journal Blog !

just a note of concern about "chest pains"
be VERY AGGRESSIVE with your docs
do NOT take anything for granted if they say " it is nothing OR it is normal"

NOTHING in CRC is nothing or normal = WORD !
FYI I decreased my dex to VERY minimal with doc's permission as I had NO nausea issues with FOLFOX
( 2 mg prior to infusion is where I finally ended up, doing the dirty dozen cycles :twisted: ...BUTT do not do this without doc's approval )

keep us in the loop
Best wishes
CRguy on the Journey with y'all
Caregiver x 3
Stage IV A rectal cancer/lung met
10 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

Tdubz
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Re: what should I expect on the first day of chemo?

Postby Tdubz » Thu May 11, 2017 8:09 pm

Crguy! Your thread is what inspired me! Such a great attitude. I hope I can have the same throughout this ordeal.

Yes, definitely staying on top of the chest pains too. So many things it could be at this point in the process. It'd be good to figure what caused it.

Basil
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Re: what should I expect on the first day of chemo?

Postby Basil » Thu May 11, 2017 9:30 pm

I finished round three of FOLFOX last Wednesday and its been a wonderful (/bullshit) ride. Neuropathy peaked at day three but took a full week to resolve. I've generally started feeling better 4-5 days after infusion but the low grade nausea/fatigue fasted a full seven days this time. Just now getting to the point of dreading the next infusion, knowing what's going to come. Good news is I'm only scheduled for six rounds with a three month break for surgery and recovery.
40 y/o male, kids 6&9
Dx 3/16/17, rectal cancer S3,t3,n1,m0
PROSPCT trial (FOLFOX in lieu of chemorad)
FOLFOX 4/5/17 - 6/26/17
LAR 7/31/17, temp ileo
pathological complete response
Adjuvant chemo cancelled (IDEA Study)
Ileo reversed 9/25/17
NED

Tdubz
Posts: 94
Joined: Sun May 07, 2017 11:01 am

Re: what should I expect on the first day of chemo?

Postby Tdubz » Fri May 12, 2017 7:05 pm

Doing good today. Appetite came back so got to eat a little more. I've lost nearly 40 lbs since surgery at the beginning of April so I'm glad to get to eat.

I did have a few questions for you guys. when do you guys normally wear a mask? I'll be around a lot of kids this weekend for Mother's Day so it seems like the right thing to do. I go in on Monday for my first post chemo blood draw so I'm sure I'll find out more then. How do you handle this with your own kids? 2 young kids here and I don't want them to freak out if I have to wear a mask.

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horizon
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Re: what should I expect on the first day of chemo?

Postby horizon » Fri May 12, 2017 8:46 pm

Tdubz wrote:Hey guys, if you don't mind, I might just try to keep updating this thread with my experience. It's therapudic to write it down and hopefully it helps others.


I think that's a great idea. The long threads helped me and I made a few of my own when I was going through treatment. I still have people thank me for them once in a while.
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?


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