Am I the only one who dreads infusion day?

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AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Am I the only one who dreads infusion day?

Postby AnnClare » Sun Jul 10, 2016 3:14 pm

It's silly, because I really don't have issues on infusion day. I suppose the dread is knowing about the subsequent fatigue, cold sensitivity, and emotional roller coaster that follows. Plus I'm always a little anxious about what possible new or more intense side effects that each infusion can bring. I keep trying to breath deeply and calm myself down, but I know that tomorrow morning there will be no escaping the sense of 'oh no' as I enter the building.

So ready to be done with this BS. :roll:
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

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BrownBagger
Posts: 7954
Joined: Fri Jul 24, 2009 2:56 pm
Location: Central NYS

Re: Am I the only one who dreads infusion day?

Postby BrownBagger » Sun Jul 10, 2016 3:27 pm

I dread the morning after, but the infusions themselves aren't bad. I've been going to this juice bar for years, so I know everyone and--despite their training--they all seem to like me. Harder to get to know the other patients because the attrition rate is pretty high. Always new faces and sometimes a few familiar ones.
Eric, 58
Dx: 3/09, Stage 4 RC
Recurrences: (ongoing, lung, bronchial cavity, ribs)
Major Ops: 6/ RFA: 3 /bronchoscopies: 8
Pelvic radiation: 5 wks. Bronchial radiation—brachytheray: 3 treatments
Chemo Rounds (career):136
Current Chemo Cocktail: Xeloda & Erbitux & Irinotecan biweekly
Current Cocktail; On the Wagon (mostly)
Bicycle miles post-dx 10,477
Motto: Live your life like it's going to be a long one, because it just might, and then you'll be glad you did.

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ANDRETEXAS
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Location: Austin, Texas (University of Tennessee alumnus)

Re: Am I the only one who dreads infusion day?

Postby ANDRETEXAS » Sun Jul 10, 2016 4:01 pm

When I was on FOLFOX, I was anxious and glad to have another infusion day --- meant I was getting one step closer to the last one. :wink: Hang in there ! Andre
2014
2/10 - Colon resect
2/13 - DX- Stage IIIb
6 of 18 lymph nodes cancerous
3/7 - Port placed
3/11 - FOLFOX (12 rds w/full oxi)
8/14 - Chemo finish
8/25 - CT- Inc
9/5 - clean PET
12/10- clean CT
2015
3/2 - Clean colonoscopy & port removed
3/4- clean CT
9/21- clean CT
2016
3/23- clean CT
2017
2/22- clean CT
2018
3/21 - clean CT
4/11 - clean colonoscopy
2019
3/11 - clean CT
9/23 - Five-year release - Annual visits now !
Next colonoscopy - 2023

ONE DAY AT A TIME !

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Re: Am I the only one who dreads infusion day?

Postby AnnClare » Sun Jul 10, 2016 4:50 pm

Andretexas - that's a good way to look at it. I'll try to get in that frame of mind.

It's true the infusions themselves aren't that bad, but it's the days that follow, especially wearing that !@#$%*! pump. First day with it, not a big deal. By disconnect day, I can't WAIT for the SOB to be removed. I hate feeling like such a cyborg, with all these unnatural devices on me: ileostomy pouch, port sticking out of my chest, the pump - argh. I know this is all temporary, AND life-saving. It's just a matter of staying strong, and maintaining mental focus - easier said than done sometimes. But I'll keep at it, forging ahead and not looking back.

Thanks for the responses.
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: Am I the only one who dreads infusion day?

Postby Sams wife » Sun Jul 10, 2016 4:59 pm

No you aren't the only one. :)
My husband would say "have I told you I hate Fridays now?" Every Friday.
Towards the end he would be counting down the Fridays left. It will get to be less nerve wracking for you. Hubby didn't have many problems with the 2nd round. Radiation was way worse. It was just the thought of having to go. :(
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

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WriterGirl1969
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Location: Central NY

Re: Am I the only one who dreads infusion day?

Postby WriterGirl1969 » Sun Jul 10, 2016 5:05 pm

AnnClare wrote:I know that tomorrow morning there will be no escaping the sense of 'oh no' as I enter the building.


I don't know about you, but even without treatment, just walking into the oncology center is intimidating, depressing and a little overwhelming. To try to compensate for those feelings, every time I go there, I treat myself to something. It can be lunch at a place I like, a guilty pleasure, donuts, something... anything to make the times I go there a little less all about the cancer and chemo.

FYI - in the book I'm writing I ponder the question of why they had to name the treatment something so intimidating as chemo. Why not call it something sweet and harmless and fun, like Fluffypuff. Some of the readers offering me feedback as I go mentioned this would make a cool dessert. So I'm inventing a yummy marshmallowy dessert that I can make for myself as soon as chemo is done. :)

--Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of then 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Surgery
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
CT CLEAR: 3/6/17; 4/17/18; 4/16/19
NED 3 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

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BeansMama
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Location: North Carolina

Re: Am I the only one who dreads infusion day?

Postby BeansMama » Sun Jul 10, 2016 9:15 pm

I don't dread infusion day, it's the days after with the damn pump I hate.

I stop at a local donut shop on the way and get a good cup of coffee and a super tasty bear claw to nibble on during my infusion.

Find something to treat yourself with only on those days, I know for me that makes all the difference. I also count down my treatments. This week is #12 of 12 for this round, so I am really looking forward to it. Hoping my onc gives me a bit of a break :D

I hope it gets easier for you, I know in the beginning for me it really stunk. Once I got a routine down it got easier.
41 yrs old
Tumor found 9/2015
Surgery 1 - 11/2015 LAR and colostomy
Surgery 2 - 11/2015 wound vac
Surgery 3 - 12/2015 revise resection, move colostomy
Mets to liver - tumor inoperable - one add'l met destroyed
Stage IVa (T3 N2a M1a)
Primary tumor 9 cm x 7.5 cm x 2 cm
Beginning Folfox 1/2016 - Failed
Beginning Folfiri and vectibix 8/2016 — Failed
Beginning Folfirinox + Avastin 11/2016 - Failed
Beginning Keytruda 1/2017
CEA drop from 345 to 7.3 after starting immunotherapy
Lynch positive 3/2016

AussieAssCancer
Posts: 258
Joined: Sat May 21, 2016 10:16 am

Re: Am I the only one who dreads infusion day?

Postby AussieAssCancer » Sun Jul 10, 2016 9:34 pm

I'm writing this at the treatment centre waiting to go in for FOLFOX Rd 9 of 12.

I'm with some of the others that dread the days after with that bloody pump whining every minute, telling me that despite being in remission, I still need this crap.

I've started dedicating a song to each Rd and make a conscious effort to physically cross off each treatment as its done. Eventually (as is the case now), there's less days to cross off than have already been crossed off which is a huge mental thing for me.

Just remember that it really is the lesser of two evils!

All the best,

GK
Dx Oct '15 w/ Stage 3c RC/ CEA 8
Nov '15 - Jan '16: 3x FOLFOX and 5wks Chemoradiation w/ Xeloda
March '16: ULAR w/ temp ileostomy
Complete pathological response incl 0/12 nodes
May - Aug '16: 9x FOLFOX (dropped Oxaliplatin for final Rd due to neuropathy)
Clear CT scans in April ‘16 (NED), Dec ‘16, Aug ‘17, Feb ‘18, March ‘19, Feb ‘20
Feb '17: Ileostomy reversed
CEA Post Surgery: ALWAYS 2

Blog: kickingrectalcancerintheassblog
https://kickingrectalcancerintheassblog.wordpress.com/

Soccermom2boys
Posts: 218
Joined: Tue Nov 10, 2015 10:29 pm

Re: Am I the only one who dreads infusion day?

Postby Soccermom2boys » Sun Jul 10, 2016 10:44 pm

I was exactly the same way on the Sunday nights before infusion Mondays--I totally can empathize. I always managed to get a cry in on that day and was just miserable with anticipation of what was to come. And I 100% agree that by day two of the pump it was just so annoying and I would refer to it as my ball and chain--as it truly was literally (I had the ball version) and figuratively.

Writergirl--I too dread walking in there as well. I have yet to cross paths with a worker there who isn't anything but friendly, kind, and compassionate, but overall I just find it depressing to have to go to that building for what all it represents. Love the idea of calling the chemo "fluffypuff"--I am literally laughing out loud over that! Thanks for my smile of the day! :D

Like the idea of a treat for the sucky days--I am a firm believer and follower of retail therapy!

AnnClare--perhaps plan a little get away for after you finish all of your treatments. We made our vacation plans shortly after I started the chemo treatments and the thought of getting to that vacation escape was a big motivator for me for sure. You definitely deserve a break from it all after all of this! By the way--were you able to get your "sentencing" down from the 12 rounds?
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

nomoretacos
Posts: 51
Joined: Sun Mar 27, 2016 5:57 pm

Re: Am I the only one who dreads infusion day?

Postby nomoretacos » Sun Jul 10, 2016 11:41 pm

I'm with you there, I dread infusion days. I whine to my partner the day before that I don't want to go, I don't want to do it anymore, I don't want to get poisoned, never seriously though of course I will go and I will finish all 12 cycles but I just like to have a bit of a whinge.

The cancer centre has such a cold feeling to it, even though its newly built and modern, its lacking a warmth. I also hate the smell of the chemicals, im not sure what it is, I think its what they use to clean and sterilise the tube that connects to the port oh man I will not miss that smell at all.

The worst part is having the pump attached, I just don't leave the house, the bag its contained in is so ugly and so obvious plus i'm usually too fatigued to want to move from the couch which sucks cos I want to go out and catch pokemon haha.
03/16 Dx Stage IIIC, sigmoid resection surgery,T3 N2b M0, 7/20 nodes, 4 tumor deposits, CEA 3.7, age 31
04-10/16 Folfox with delays and reductions
10/16 Post chemo CT scan shows two non specific spots (one liver, one lung)
11/16 Port removed
12/16 CEA 0.9
09/17 NED
03/18 NED

Pita
Posts: 637
Joined: Wed Feb 10, 2016 3:48 pm
Location: So Calif

Re: Am I the only one who dreads infusion day?

Postby Pita » Mon Jul 11, 2016 1:37 am

Guess I'm the oddball out, only thing that bothers me about infusion day is having to get up so early and be there by 9, I don't usually get out of bed till 8-10 since I stay up till 1-2. I take an Ativan 30 minutes prior and I sleep off and on most of the day and work on my adult coloring book as a treat. I know I'll be laying on the couch for the next 2-3 days but it is what it is and nothing I can do about it. Pump isn't so bad now that I'm used to it, it's in a fanny pack bag.
Perhaps get an Ativan prescription to take day before and day of to calm you down and keep the negative thoughts out of your mind.

I suppose many of you are sick of my favorite saying but here it is for you (((AnnClare)))
"Reality is never as dark as the places your brain visits in anticipation"
70yo Fem DX: 1/21/2016 RC Stage IV-Nodules lungs
MSS-Kras Wild-Lynch Synd Neg-Lung Biopsy 1/27/16-Port 2/19/16
MRI 7/7/16 Endometrial polyp found, watching LAR 7/19/16, No Ileostomy, Stage ypT3 N1
CT 11/7/16: Most mets stable,1 shrunk,1 new??
CEA Tests: 1/21/16=20, 12/22/16=5.3, 1/20/17=4.8, 2/15/17=6.2
9/20/16-1/24/17 Folfuri & Avastin
#10/10 Done
PET/CT 2/10/16-1/31/17=Some shrunk & growth to 2, Avastin failing ??? :evil:
2/21/17 Folfuri & Avastin

AbbyDoo
Posts: 134
Joined: Wed Jun 29, 2016 2:25 am
Location: So.Ca.

Re: Am I the only one who dreads infusion day?

Postby AbbyDoo » Mon Jul 11, 2016 5:55 am

No it's not silly. I dreaded infusion day. Not knowing if you head was going to spin around in circles like in the exorcist was no fun. Not knowing what the next normal will be is scary stuff. Every time I walked by the big sign Hemo/Onc on infusion day I would say ah sh&t.
I'm not sure where they grow the nurses that work the infusion centers but there the nicest people.
53 yrs old
4/30/15 colonoscopy Mass found
5/21/15 staged 3 C rectal cancer
7/3/15 finished xeloda and radiation 28 rounds
9/30/15 LAR
10/29/15 picc line installed
11/2/15 start chemo 5 fu Oxaliplatin
3/7/16 Finish Chemo
4/29/16 Ileostomy Reversal.
7/13/16 colonoscopy clear.
CRC survivors know there Sh%t

radnyc
Posts: 439
Joined: Tue Apr 06, 2010 6:32 pm

Re: Am I the only one who dreads infusion day?

Postby radnyc » Mon Jul 11, 2016 6:11 am

Hated it with a passion. Will never do it again.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

LaciK
Posts: 62
Joined: Mon Oct 12, 2015 2:10 pm

Re: Am I the only one who dreads infusion day?

Postby LaciK » Mon Jul 11, 2016 8:02 am

I am with you on this one! On the most recent infusion day (and a couple of days leading up to it) I finally gave in and took Ativan. The infusion prior to this one I had a mini-meltdown.

We have been told that the side effects can get worse every time, so it's not just that we know what is coming, we get to fear what might be worse this time.

I will say I am very thankful that my neuropathy has been limited, but the cold sensitivity gets worse every time. I went grocery shopping the other night and my hands were numb after touching the cool groceries in the store. Good thing my boyfriend went with me and helped me pack and unpack the car and put them away.

I had my ileostomy reversal surgery in April and the GI issues have been much worse with everything reconnected. Every time I think it is getting better, I have more accidents.

At least I only have one more!! Good luck to you!
DX 9/23/15 rc (age 50)
CT & EUS revealed T3N1 Stage 3b
Chemo/Radiation Oct/Nov 2015
LAR 1/15/16 w/temp ilieostomy
Xelox 3/17/16 - 2 rounds then paused for ilieostomy reversal 4/22/16
& to Clear up C. Diff infection
Restart Xelox 5/19/16 - Final infusion 7/21/16
Finish Xelox (oral Xeloda) 8/3/16
8/17/16 CMP & CBC normal; CEA Zero!
9/26/16 Colonoscopy clear
10/5/16 CT clear

AnnClare
Posts: 241
Joined: Wed Sep 09, 2015 3:31 pm

Re: Am I the only one who dreads infusion day?

Postby AnnClare » Mon Jul 11, 2016 9:16 am

Thanks for all the replies, guys.

I, too, dread just walking through the door of the infusion center. And I agree that 2 days with the %$!#@&! pump is worse than infusion day itself. What doesn't help the process is that every time I come here (at the infusion center now), there's frequently confusion. It does NOTHING to instill confidence. Some of the nurses are rock stars, on top of their game, etc. But there are a few who clearly don't know what's going on, or are frazzled. This process is anxiety-provoking enough without the added stress of wondering how competent your nurse is.

The idea of a treat has occurred to me ~ if I'm not too wiped after I leave here today, I may hit up a drive-thru. I LOVE fries and a bacon burger has been in my mind lately, as have chicken fingers. Decisions, decisions.

I get Ativan & (3 other anti-emetics) pre-infusion and it helps a LOT. Makes me feel sleepy at first, then kind of loopy/buzzed the rest of the day. When I come off the pump is usually when my emotions crash - I get weepy and want to quit. My husband reminds me I'm only feeling that way because of the meds and that this is TEMPORARY.
42 yr. old female
Rectal cancer Stage 3C T3 N1 M0 - Sept 2015
28 rounds radiation w/Xeloda - Nov - Dec 2015
2/17/16 - Surgery to remove rectal tumor, lymph nodes (2/20+), ovaries & fallopian tubes, temp. ileostomy
3/28/16 - 9/26/16 -12 rounds FOLFOX w/full oxi
Ileo reversal 10/27/16; Port removed 12/1/16
Lung mets confirmed 2/6/17
March-May 2017 - brain mets; brain rad. 5/9-5/29/17


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