This chemo is knocking me down

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Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

This chemo is knocking me down

Postby Trying » Thu Jan 17, 2019 8:57 pm

Im usually half ok on chemo but this session has me so weak confused and depressed. I feel i cant do this any more. Do you guys sometimes have a real rough chemo then go back ro normal. Im so scared
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Punky44
Posts: 498
Joined: Mon Oct 01, 2018 4:29 pm

Re: This chemo is knocking me down

Postby Punky44 » Thu Jan 17, 2019 9:03 pm

Just want to send you some virtual hugs. Sorry you are going through a tough round.
Caregiver to my amazing mom (68 at dx)
10/1/18 DX with rectal cancer; CEA 17
T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes
6/28/19 Reversal and port out
CEA 2.1; 1.9; 2.6; 2.8; 2.3; 2.4; 3.0; 3.4; 3.1; 3.4; 3.0; 3.1; 2.6
Latest update: 8/21/23 Clear CT with CEA 2.6!

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: This chemo is knocking me down

Postby Trying » Thu Jan 17, 2019 9:17 pm

Thank you
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

hiker
Posts: 139
Joined: Thu Aug 09, 2018 10:15 am

Re: This chemo is knocking me down

Postby hiker » Thu Jan 17, 2019 9:21 pm

No doubt about it, chemo sucks. Each round was different for me.

I mostly did my systemic chemo at the MSK satellite facility in Monmouth, NJ, with an occasional infusion in NYC. I remember one of the worst rounds was in NYC. I walked out of the infusion center and down into the subway and was completely lost - had no idea how to navigate. And I can normally find north with my eyes closed. Stood there staring at the signs totally confused. That was the only time that happened.

So don't worry, this will pass. Hopefully the next round will be better.

hiker
Colonoscopy 2/17, 5cm tumor descending
Diagnosed stage iv, liver mets 3/17
Colon resection 3/17
Told surgery not an option, get my affairs in order
Meet w/MSK team 5/01/17
Folfox(3rds) 5/17-6/17
Liver resection/implant HAI pump 7/17
HAI pump chemo(5rds) 8/17-2/18
Folfiri+Vectibix(11rds) 8/17-2/18
Spot on chest CT 10/17
Lung biopsy (that was fun) 11/17
Nocardia bacterial infection w/spread to brain (this is serious) 11/17
IV antibiotics 12/17-2/18
Oral antibiotics 3/18-12/18
Clear of cancer since surgery

Achilles Torn
Posts: 141
Joined: Fri Dec 16, 2016 2:41 pm

Re: This chemo is knocking me down

Postby Achilles Torn » Thu Jan 17, 2019 9:49 pm

Sorry to hear it sounds like a rough one. Chemo just sucks.

I had some rough cycles on FolFox (number 4 particularly stands out for me) and susbequent ones were sometimes better. Hope that helps.

AT
Diagnosed as 40 yo Male. BC Canada. Sigmoid Colectomy Dec. 2016
Pathology T3N2bM1 19 of 24 Nodes Positive + tumour deposits
PET scan - Para-Aortic and Iliac Lymph node spread. Stage VI.
Moderately differentiated. MSS. KRAS/BRAF Wild.
Mutations: TP53, ERBB4, MLL3, PDCD1LG2, PRKDC, SMAD3
FOLFOX + Bevacizumab Commenced Jan 9/2017 PET Scan July 2017 - on maintenance 5FU/Bev every 2 weeks.
Progression after Covid19 induced break June 2020. Resume Maintenance chemo of Capecitabine and Bev

KimT
Posts: 695
Joined: Sat Feb 20, 2010 8:53 pm

Re: This chemo is knocking me down

Postby KimT » Thu Jan 17, 2019 10:14 pm

The effects of chemo are cumulative. Every one was worse than the one before for me. My doctor finally cut the dose on the last two treatments.

I got my chemo every 3 weeks and the only time I felt good in those 6 months was the day I got chemo and the day after because they jacked me up with steroids. I was a total crybaby during chemo.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

stu
Posts: 1613
Joined: Sat Aug 17, 2013 5:46 pm

Re: This chemo is knocking me down

Postby stu » Fri Jan 18, 2019 2:43 am

Oddly enough my mum had some really rough rounds but then went back to normal for a few . Check your fluid intake and electrolytes. This really impacted my mum’s ability to cope .
I took three of us to put her to bed after one round in particular. Reducing her dose by ten percent changed everything. It did not reduce efficiency for her .
Have a chat with your oncologist too .
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: This chemo is knocking me down

Postby Gravelyguy » Fri Jan 18, 2019 6:52 am

For sure keep an eye on hydration. I had a couple of really bad rounds and the nurses at the infusion center knew right away that I was dehydrated. I felt so much better after some IV fluids.

Sorry that this is a tough round for you. You can do this!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

margiej
Posts: 109
Joined: Sat Apr 14, 2018 8:46 am

Re: This chemo is knocking me down

Postby margiej » Fri Jan 18, 2019 7:41 am

Ditto on the hydration. My oncologist put in a standing order for fluids for me since I had such a difficult time eating and drinking. I could call the infusion center and they would set me up for a liter of fluids as soon as they could fit me in.. Usually later afternoon when the other infusions were winding down. I always felt a bit better/stronger afterwards.
My fatigue and nausea were cumulative also. My doctor adjusted my xeloda down halfway through treatment which helped a little bit too.
I am thinking of you and everyone on chemo right now. It's hard, but hang in there.
Margie
Dx CC 12/2015, age 57 at Dx
Stage IIIb: T3N1b
Adenocarcinoma, sigmoid colon, 2.5 cm - low grade, moderately differentiated
3/6 positive lymph nodes
laparoscopic colectomy 1/20/2016
Capox started 3/4/16 - Six rounds
CT-suspicious lymph 2/22/16
PET scan 2/24/16 clear
CT 6/8/16 clear
Clear Colonoscopy 3/2017 and 1/2020
CT 10/3/17 clear
CT 10/17/18 clear
CT 10/17/19 clear
CEA 12/17 1.7
5/16 3.8
7/16 1.9
3/17 1.3
10/17 1.2
4/18 1.6
11/18 1.2

dliu
Posts: 66
Joined: Sun Jun 03, 2018 7:16 am

Re: This chemo is knocking me down

Postby dliu » Fri Jan 18, 2019 9:10 am

I'm very sorry you're going through this. My mum had the same three effects you are reporting, sometimes at the same time. The depression can be particularly confusing - she is not one to have a sunny disposition, but you could tell this was a completely different beast and something chemical. It did go away after less than a week, so I hope this can be a tiny bit of encouragement, along with all the progress you've been making. Stay strong.
Caring for my mum, 65
Sigmoid resection, multiple liver mets
09/05/2018 Dx Stage IV, 6/11 LN - KRAS G12V
28/05/2018 First round of FOLFOX + Avastin

CEA down from 6000+ (05/2018) to 843 (08/2018) to 377 (11/2018)
9/10 rounds with Oxaliplatin
8/10 rounds with Bevacizumab

Trying
Posts: 250
Joined: Sun May 13, 2018 10:11 pm

Re: This chemo is knocking me down

Postby Trying » Fri Jan 18, 2019 9:53 am

I realized i wasnt drinking enough and think this had something to do with it. Thank you for all the responses

Nicole/trying
38 yr old single mom of almost 2 year old at the time
April 2018 colon cancer stage IV 10 liver mets and peri met. Folfox and 12 rounds oxyplatin
Fec 2018 Down to 2 mets in liver. 8 dissapeared
July 2019 switched to xeloda pills as I prefer to 3 day infusion. Also on avistan
Oct 2019 emergency colostomy due to perforated bowel. ( unreal pain)
Feb 2020 show 2mm tumor increase.
Plan to go back on oxy
Oxy failed- irinotecan as of of Sept 2020

Gravelyguy
Posts: 382
Joined: Thu Jul 05, 2018 6:03 pm

Re: This chemo is knocking me down

Postby Gravelyguy » Fri Jan 18, 2019 9:56 am

Nicole,


Steroids can also play a big role in your emotions. I have a retired oncologist friend who told me this when I was going through a rough patch. Just knowing that I would feel better once I was done helped me get through it.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 CEA .9 still NED!
6/11/19 CEA 1.0
12/19/19 CEA 1.0 still NED!
6/17/20 CEA 1.1 still NED!
12/15/20 CEA 1.1still NED!
12/16/21 CEA 1.2 still NED!

User avatar
ginabeewell
Posts: 565
Joined: Wed Oct 24, 2018 10:30 am

Re: This chemo is knocking me down

Postby ginabeewell » Fri Jan 18, 2019 10:37 am

Trying wrote:I realized i wasnt drinking enough and think this had something to do with it. Thank you for all the responses

Nicole/trying


Drinking water is good, but if you are dehydrated, it can take hours before that can provide any relief. Going to an infusion center for a liter of IV fluids will have much quicker impact.

I have worked with my hospital to arrange to get fluids at home, which is easy enough for my husband to do for me or for me to do myself if he is not around. I stay accessed when I disconnect my pump on day 3 and typically will do fluids that day and on day 5, then disconnect. Then I swing by and get myself accessed again maybe day 8 or 9 and keep it in for 3 or 4 days, giving myself another 2 to 3 rounds of fluid depending on how I feel. Then disconnect again on day 11 or 12.

Some centers are more or less liberal about allowing home infusions but even if you have to go into an infusion center, it can make a MAJOR difference in how you feel.
49 YO mom of twins (11) lucky stepmom of 16/19 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
Currently NED!

Join me on a lookback of my journey via my Strive for Five on Substack here:
https://ginajacobson.substack.com

All treatment details here:
https://www.weareallmadeofstars.net/col ... nt-journey

My favorite posts here:
https://weareallmadeofstars.net/favorite-posts

heiders33
Posts: 363
Joined: Sat Nov 04, 2017 11:08 am

Re: This chemo is knocking me down

Postby heiders33 » Fri Jan 18, 2019 10:46 am

I agree on the steroids. I don’t think I realized until later how much they made me feel not like myself. I would sit on the couch in a sort of catatonic state. I would watch funny stuff on TV and not even laugh. It was weird, but it did go away.
40 year-old female
May 2017: Dx rectal cancer T3N2M0
MSS, KRAS G12D
6/17: 28 days chemorad
9/17: LAR/loop ileostomy, CAPOX six rounds
3/18: reversal
9/18: liver met, resection/HAI pump, 11 rounds 5FU, 1 round FUDR
11/19 - local recurrence, brachytherapy, 3 weeks targeted radiation
12/21 - end colostomy


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