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Postby Terry » Mon Aug 09, 2010 3:43 pm

So I didn't go to chemo today. My daughter (19) was suppose to drive me but she was still up at 3 am and would have gotten a little less than 3 hrs sleep and I slept maybe an hour all night tossing and turning and mind kept going. I rescheduled for tomorrow.

Anyway, I had 9 bad days my last treatment and figured I would take dex about 12 hrs. before my appt. (probably why I couldn't sleep) hoping I might not get the throat closing, high heart rate, etc. When I got up this morning I felt a lot like I do after chemo, so I'm thinking the steroids a big part of making me feel crappy. I know some of you have opted out of the steroids after doing them. Does it make you feel quite a bit better? Were you more nauseous?

Thanks for your advice!
DX 7/3/07
Chemo, radiation, 20 mo. chemo, IMRT, cyberknife, 6/11 lobectomy.
1/16 resection perm. colostomy intraop. rad.
PET 2/12 nose, thyroid, liver, lngs
Folfox 3/12
Lord I know You'll keep me here until
you know I cannot suffer any longer!

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Re: Steroids

Postby joeyooser » Mon Aug 09, 2010 4:02 pm

Sorry you had a lousy night - it happens to me a lot too. I personally loved the Dex and found I could do wonders in the weight room with it. My wife hated it because I pestered her more than normal, if you know what I mean ;-)
Stage IIIc - 9/23 lymph nodes, poorly diff, 35yo father of 2.
Lap resection Jul 28 09 resulted in near-deadly leak
Finished chemo Feb '10; Takedown March '10;
Nov 2010 - carcinomatosis
May 2011 - Clinical Trial, failed out of trial, in hospice care

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Re: Steroids

Postby KarMel » Mon Aug 09, 2010 6:39 pm

I had Dex every treatment of Folfox, so I don't know what it would have been like without. I loved it for the first several rounds, made me feel like Wonder Woman. Of course, I couldn't sleep worth a darn, had to take ambien to bring me down off the steroid high. The following day, the crash was pretty rough.

All and all, I think I'd choose to continue the steroids. If you give it up one time and regret it, you'll know better next time and the rest of us can learn from your mistake! :lol: :wink:

Prayers that what ever decision you make, God keeps you in comfort and peace and brings healing!
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"

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Re: Steroids

Postby starbuck30 » Mon Aug 09, 2010 6:46 pm


I only get the dex with my infusion (along with Emend) and I feel fine nausea-wise. I'm so sorry you feel so rotten. I'll definitely be keeping you in my thoughts and prayers. I really REALLY hope you feel better soon and the treatment goes easier for you.

Much love and prayers to you,
2/26/10 Dx'd colon cancer
3/12 complete colerectomy, temporary ileostomy
3/19 pathology came back Stage IIIC CC
4/2 started FOLFOX
Chemo "precautionary", last CT showed NED PLEASE God let's keep it that way
9/16/10 FOLFOX finished! Woo hah!

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Re: Steroids

Postby catta » Mon Aug 09, 2010 6:50 pm

just posted about hiccups from Dex, this also made my dad moody and depressed too.. and didnt have it last week with folfiri( 5th round), and was fine.
DD of CC Patient
3C dx04/98
NED 11Yrs
R/U lbe 15cm met 02/09
folfox X6 04/09,lobectmy/6 XFolfox 12/09
2cm met lobe 02/10 Vats 04/10
folfiri 6 rounds
10/10 Clean scan and Pet
6mm lung met 1/11
Brain met 2/11
Liver mets 4/11
Eternal peace 23rd December

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Re: Steroids

Postby dianne052506 » Mon Aug 09, 2010 6:52 pm

I had dex as part of the premed IV with every round of FOLFOX. I'd get the steroid high and then crash every time.
With my first round of irinotecan, something weird happened and I had tremendous itching from days 5-10. For round 2, my onc loaded me up with 12 mg of dex for 4 days. I went a week with only about an hour of sleep each night. Pure insanity. Between rounds 2 and 3, my onc quit the practice. The new onc pulled me off the dex, and I get Emend and aloxi as premeds for nausea. Haven't had a recurrence of the itching (which may have been caused by elevated bilirubin, but they can't say for sure), and I sure don't miss the dex.
I apologize for not going back and checking, but how fast are they doing the drip on the irinotecan? Mine is done over an hour and a half. What about benedryl as a premed? Would that help?
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again

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Re: Steroids

Postby clarabelle64 » Mon Aug 09, 2010 10:54 pm

What is DEX? Debs gets a steroid but it seems not to affect her in any way really. She takes something for the nausea but only for 4 days and then she seems to come right. But 5FU is accumulative so after each infusion you probably feel a little it's like Spring has sprung!!!! Daffodils, the Tui are singing away, it's a balmy day down under here in Wellington. Oh boy, roll on Spring proper!!! Sorry you are having such crappy nights from this Dex Terry.....God I HATE this freaking CC.........
God love you all
Clarabelle, Mother of Deborah who has CC with mets to liver + lungs.
Has been on Folfiri then 5FU + Oxi
Lung Mets progressed
Currently on Intravenous Vit C + diet + supplements
My darling girl passed away 18.8.2011

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Re: Steroids

Postby lydia123 » Tue Aug 10, 2010 7:21 pm

Terry -

My husband is only a few rounds in, but here's his deal. Sorta the opposite approach of your "extra steroid" approach. Granted, it does take him a bit to get over the grogginess, but heck, he isn't going anywhere, anyway.

He broke out in a cold sweat 5 minutes into the first chemo. The doctor decided it was probably anxiety (but maybe allergy) so my husband was dosed with ativan+benedryl and immediately took a nap. When they started the chemo again, he did ok. We've kept with that cocktail.

He gets Emend and ativan on the morning of the infusion. He gets ativan, zofran, dex, benedryl infused. Then the chemo stuff. This seems to make the infusion part of this very, very easy (OK, it still sucks, but he's not stressed at all.)

He gets nausea drugs including reglan continuously thereafter until disconnect and only one more dex. More dex than that and he gets terrible hiccups. Not much sign of a high or a collapse, but with the hefty cocktail described above, "high" could mean he can still walk.

(lest you think this sounds like overkill, the first round landed him in the hospital, and this regime actually works - clearly he isn't going to work while hooked on the pump..... you get what you get.)

I hope the next round goes better.

Clarabelle -
dex is decadron, a steroid
caregiver to husband dx stage III colon/rectal cancer 5/10
6/10 surgery
7/10: FOLFOX began -- became nausea management expert
12/10: Chemo-radiation ended, scans clean.
NED since, but some scans required follow-up

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Re: Steroids

Postby CRguy » Tue Aug 10, 2010 7:45 pm

hey Terry, and all.

My response to dex is in my other thread..mostly, but I think I have distilled a perfect description for me :
think...puberty, PMS, hangover, sugar high, manic-depressive, narcolepsy... all nicely rolled into one cute little tablet (or infusion) :twisted:

Hence, my ongoing experiment to decrease doses. Zofran works well for nausea for me, so I started at 8 mg dex pre infusion, 4 mg dex post infusion, then 4 mg am + pm the next day. I am now at 4 mg pre infusion and today I will take 1-2 mg later (cycle 6 infusion day today...whoopee !) and nothing tomorrow. SFSG :D

BUT... Terry if there is a possible allergic component to your situation..throat ???? they would want to keep you on some benadryl and maybe still some dex at infusion just to be sure ??? taking it before bedtime will mess with my sleep 100% guaranteed. We talked about the heart rate thing before...any chance it is due to volumes infused and CalMag effect ?? i admit I had higher HR at cycle 1+2 (with higher dex doses) but nothing last 2-3 cycles with my new improved lower dex dose... and I am very conscious of this as I have been prone to SVT's in the past and carry metoprolol, anyway.

Hopin' things are sorted out for you.
Many Cheers, always, on the journey
Caregiver x 4
Stage IV A rectal cancer/lung met
14 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Re: Steroids

Postby NWgirl » Tue Aug 10, 2010 10:09 pm

I didn't feel better (except no more depression stuff); but I didn't feel worse either. The dex never helped my nausea at all.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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Re: Steroids

Postby Juliepie » Tue Aug 10, 2010 10:12 pm

Hi Terry,

So sorry to hear that you felt like crap and haven't getting much sleep. Besides the dex I got through the IV right before each infusion of FOLFOX, I opted out of taking the dex pills after each of my infusions around round 3 or 4. I was originally told to take them the night of my infusion day and for the next 2-3 days. Like you I found I felt worse after taking the steroids, during and especially after unhooking from the 5-fu pump. During, I was painfully achey all over (legs, back, neck,jaw), couldn't sleep at all which made getting through each chemo week harder and I felt like I'd been run over by a truck! After i'd unhook and stop the dex, I'd be achey AND super tired. I always made sure the prescription was filled and I had them on hand along with the other anti-nausea meds but I didn't need them. I found that I felt MUCH better when not taking the dex but it's different for everyone. For me, nausea wasn't ever an issue so there wasn't really any point in taking an anti-nausea med that gave me side effects. I would talk to your doctor to see how they feel about it though before stopping.

Hope you get some sleep and feel better! :)
Dx Colon Cancer 12/04/08 Surgery (right hemi) 11/28/08 at the age of 29
Stage III T3N1M0
1 out of 35 lymph nodes positive
31 years old now
Started FOLFOX Jan 20/09, finished July 3 2009 (yay!!)

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