Is the day that chemo treatment ...

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KatDaz
Posts: 16
Joined: Mon Jun 18, 2018 7:54 pm

Is the day that chemo treatment ...

Postby KatDaz » Mon Jun 18, 2018 10:54 pm

Ends, like at the 46 hour mark easier or harder? Im set to start chemo on Monday and have the pump until Wednesday and iv read how the day that its unplugged so to speak is kinda hard on a person. Im thinking that i could start it on Wednesday and have it unplugged on friday so then id have the weekend to get ‘back to normal’ for the following work week.

Does anyone have a comment as to which is better or if it matters?

Thanks a ton
Kathie
Last edited by KatDaz on Mon Jun 25, 2018 5:41 pm, edited 2 times in total.
Via ER had CT scan on 4/4/2018 that showed mass in colon that nearly broke through
Date of diagnosis: 4/5/2018 with surgery performed this day to remove 3.2 cm tumor - stage 2A
Colonoscopy on 6/15/2018 - all clear, he asked how does normal sound!!! :D
Power Port placed on 6/21/2018
Chemo started 6/25/2018 Folfox
Started with Neulasta now given Neupogen

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wwroam
Posts: 763
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Facebook Username: Wayne Whitaker
Location: Brisbane, Australia
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Re: Is the day that cheno treatment ...

Postby wwroam » Mon Jun 18, 2018 11:26 pm

It depends on when you get the last " hit" of dexamethasone.
Last year when I was doing chemo for NSCLC , I reluctantly agreed on 8 mg on infusion day . I had a bottle of dex orals ( 4 mg) which I was supposed to take on days 2 and 3. Instead of 8mg I took 4mg on day 2 and nothing on 3. It was a steady drop off and was a breeze.
Stage 3a DX 25/06/07
Folfox complete 30/01/08
7 years NED
Port scheduled for removal 8/02/10 Gone.
PSA .54 No prostate problems
Diagnosed Type 2 Diabetic
SO diagnosed CC Stage IV Liver Mets 23/03/15

hawkowl
Posts: 132
Joined: Sun Dec 14, 2014 5:29 am
Location: MN/FL

Re: Is the day that cheno treatment ...

Postby hawkowl » Tue Jun 19, 2018 1:23 am

My worst day was the day after disconnect, although the extreme fatigue started the evening after disconnect and persisted for about 36 hours before gradually improving.
Dx 12/2014 T3N2MX (distant LPLN) low rectal
12/2014-4/2015: FOLFOX (8 cycles)
4/2015-6/2015: 28 cycles of chemoradiation with xeloda, SBRT
8/2015: Robotic APR with iliac node dissection; path showed ypT0,ypN0 (complete pathological response).
11/2015 scans clear, CEA 2.1
11/2015 parastomal hernia repair
3/2016 CEA 1.7, scans stable...
6/2020 5 years of normal CEA and stable scans
Now dealing with pyoderma gangrenosum.
Totally disabled due to oxaliplatin induced neuropathy and dysautonomia

Capri
Posts: 80
Joined: Thu Apr 19, 2018 5:59 pm

Re: Is the day that cheno treatment ...

Postby Capri » Tue Jun 19, 2018 7:55 am

My son had his 8th FOLFOX infusion yesterday...4 more to go. He wears the pump for 46 hrs afterwards.

In the early weeks, he felt better once the pump came off. Now as he is more into the regimen, his window of feeling pretty good is getting narrower. He has fatigue and some nausea into the middle of his non-chemo week. Neuropathy has kicked in also. Everyone responds differently so your experience may be vary from his.
Mom to son 46 yo at Dx (2017)
1/18 Robotic resection, sigmoid adenocarcinoma, Stg. IIIA T3 N1 MX, mod. differentiated, margins clear
2/18 - 7/30/18 Port placed; completed 12 cycles of FOLFOX
6/18 Put on Early surveillance CT,PET scan-normal. Neuropathy has started.
11/18 Clean colonoscopy; 11/20 CT normal.
2019 to 7/22 colonoscopies, CTs neck to groin have been normal.

boxhill
Posts: 789
Joined: Fri Apr 06, 2018 11:40 am

Re: Is the day that cheno treatment ...

Postby boxhill » Tue Jun 19, 2018 11:45 am

So far I've found that my days of feeling rather blech are mostly the two days after the pump is removed. So far, no nausea at all, but fatigue.

But everyone is different. I think that the advice to drink a lot of fluids, especially on infusion day and while on the pump, is important in flushing that stuff, including dead cells, out of your system.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/20 MRI stable/NED
6/20 Stop Key
All MRIs NED

benben
Posts: 324
Joined: Fri Apr 28, 2017 3:18 pm
Location: Washington State

Re: Is the day that cheno treatment ...

Postby benben » Tue Jun 19, 2018 12:01 pm

Day of disconnect was like a light switch for me. I'd be disconnected and within 6 hours be rendered unconscious and confined to be for 36 up to 72 hours. With just enough time awake to eat, drink, brush teeth and use the bathroom. Then things always improved until the next cycle.

I agree fluids are critical. My nurses had me drinking 150 ounces of water per day. Felt like I was constantly sipping and chugging water/tea.
----------------------
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treats
Treat 7 - 75% OXI
Treats 8-12 - NO OXI, Luke & 5FU
10/20/17 CT- NED
3/18 Scope - Clean
11/8 PORT OUT!
7/22 CT - NED (5 years!)

Deb m
Posts: 558
Joined: Tue Jan 14, 2014 10:08 am

Re: Is the day that cheno treatment ...

Postby Deb m » Tue Jun 19, 2018 3:24 pm

my husbands worst day was day 4, meaning the 4th day after he had his main infusion. Then he would start to feel better each day till he got hit again. Towards the end, his days of feeling poorly increased. It's all accumulative!

KatDaz
Posts: 16
Joined: Mon Jun 18, 2018 7:54 pm

Re: Is the day that cheno treatment ...

Postby KatDaz » Tue Jun 19, 2018 3:30 pm

Thank you to everyone who has given advice and shared their story, i suppose il just get through it either way. If im gunna be sick then i will and il pray that i dont.

We will see.
Via ER had CT scan on 4/4/2018 that showed mass in colon that nearly broke through
Date of diagnosis: 4/5/2018 with surgery performed this day to remove 3.2 cm tumor - stage 2A
Colonoscopy on 6/15/2018 - all clear, he asked how does normal sound!!! :D
Power Port placed on 6/21/2018
Chemo started 6/25/2018 Folfox
Started with Neulasta now given Neupogen

mhf1986
Posts: 158
Joined: Sat Mar 11, 2017 8:30 pm
Location: near DC

Re: Is the day that cheno treatment ...

Postby mhf1986 » Tue Jun 19, 2018 7:22 pm

DH had "nap day" on his "unplug day". He'd get up, eat a little, nap, get disconnected, nap, shower, nap...by dinner time he was better. Next day he was tired but managed to work 1/2 day.

I will second the drink a lot of liquids...water, flavored water, tea, lemonade, etc. If you are getting OX along with the 5FU, be careful of cold stuff.

Tell your care team of any side effects early so they can help you.

M
Caregiver to DH, dx @ 50, mets to liver/lungs, MSS, wild
9/16 CEA 114, blockage, left hemi, perm. colostomy
11/16 port in, FOLFOX + Avastin
6/17 CEA 15, 5FU + A only due to neuropathy
11/17 CEA 38, CAPOX + A
1/18 CAPOX = hi bilirubin/bad hfs, back to FOLFOX + A
5/18 growth; Vectibex + 75% Irinotecan
7/18 CEA 23, shrinkage
10/18 CEA 28, growth of 2 liver tumors/shrinkage of few and lung nodes
11/18 Lonsurf, looking at spheres, proton, trials
11/19/18 Peace

Tdubz
Posts: 152
Joined: Sun May 07, 2017 11:01 am

Re: Is the day that cheno treatment ...

Postby Tdubz » Fri Jun 22, 2018 5:18 pm

Days 2 through 4 seemed to be the worst for me. I don’t remember ever feeling bad on a weekend (Monday was infusion and wed was disconnect).

Take into consideration what days you will be working. My employer let me take off all of the infusion weeks, so I chose to do Monday as my infusion day. This had 2 benefits, 1) I could still enjoy my weekends because I was feeling better by that time and 2) I would be able to call my oncologist if I had any bad side effects after disconnect . My oncologists office was closed on the weekend so I wouldn’t be able to call then if I disconnected on Friday.

If you have to work on infusion week, then possibly starting on a wed is better so you are not missing as much work.

KatDaz
Posts: 16
Joined: Mon Jun 18, 2018 7:54 pm

Re: Is the day that chemo treatment ...

Postby KatDaz » Mon Jun 25, 2018 5:14 pm

Ok, so I had my port put in this last Thursday and started chemo today. I have been home for just about an hour so nothing tremendous to report. The day was long as it was my first treatment and it did go well so far. My right chest, where the port is, is still tender and is uncomfortable. Breathing especially deep breathing also is uncomfortable, im told that is normal. Also that it will get better.

I sure appreciate all the posts to help me with my anxiety about this journey I have begun. I will posts again when i have the pump removed and as I progress.

Prayers and hugs to all
Kathie
Via ER had CT scan on 4/4/2018 that showed mass in colon that nearly broke through
Date of diagnosis: 4/5/2018 with surgery performed this day to remove 3.2 cm tumor - stage 2A
Colonoscopy on 6/15/2018 - all clear, he asked how does normal sound!!! :D
Power Port placed on 6/21/2018
Chemo started 6/25/2018 Folfox
Started with Neulasta now given Neupogen

NHMike
Posts: 2555
Joined: Fri Jul 21, 2017 3:43 am

Re: Is the day that cheno treatment ...

Postby NHMike » Mon Jun 25, 2018 5:28 pm

Tdubz wrote:Days 2 through 4 seemed to be the worst for me. I don’t remember ever feeling bad on a weekend (Monday was infusion and wed was disconnect).

Take into consideration what days you will be working. My employer let me take off all of the infusion weeks, so I chose to do Monday as my infusion day. This had 2 benefits, 1) I could still enjoy my weekends because I was feeling better by that time and 2) I would be able to call my oncologist if I had any bad side effects after disconnect . My oncologists office was closed on the weekend so I wouldn’t be able to call then if I disconnected on Friday.

If you have to work on infusion week, then possibly starting on a wed is better so you are not missing as much work.


I had mine on Wednesdays and that worked well. I used to have labs before the infusion but it sometimes took a while for them to come back so I switched to getting labs on Tuesday (any time) so that I could start earlier on Wednesday.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: Is the day that chemo treatment ...

Postby AppleTree » Tue Jun 26, 2018 5:37 am

On disconnect day I always got 2 hours of fluid through my port...AND the next 3 days after. Drink as much as you can, but if you feel really lousy, ask them about hydration.
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

radnyc
Posts: 446
Joined: Tue Apr 06, 2010 6:32 pm

Re: Is the day that chemo treatment ...

Postby radnyc » Tue Jun 26, 2018 7:44 am

I worked through chemo. Only took Friday, every other week off. Used that weekend to be as relaxed as possible. Went back to work Monday, that was the toughest day.
DX Jan 2010, at age 47
Feb - colon resection - 2/17 nodes positive
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 2011
HAI Pump removed Dec 2015

KatDaz
Posts: 16
Joined: Mon Jun 18, 2018 7:54 pm

Re: Is the day that chemo treatment ...

Postby KatDaz » Tue Jun 26, 2018 8:15 am

Well with first chemo yesterday, last night went well as for sleep but i was up early so that stinks. I do have a headache and am aching through the back of my head and shoulders - i had this yesterday and some of the achiness started on the weekend so im thinking its from stress and the anxiety so hope it goes away with regular Tylenol doses.

I am at work today and do feel pretty good.

Thank you for the continued posts on how your journey took shape,
Kathie
Via ER had CT scan on 4/4/2018 that showed mass in colon that nearly broke through
Date of diagnosis: 4/5/2018 with surgery performed this day to remove 3.2 cm tumor - stage 2A
Colonoscopy on 6/15/2018 - all clear, he asked how does normal sound!!! :D
Power Port placed on 6/21/2018
Chemo started 6/25/2018 Folfox
Started with Neulasta now given Neupogen


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