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ERNP
Posts: 4
Joined: Sun Nov 06, 2022 12:35 am

New here

Postby ERNP » Thu Nov 10, 2022 8:44 pm

Hello all… been a hot minute since I participated on a ‘net message board. So far the info here has been pretty helpful and informative, even predictive as I started chemo today.

Back story (excuse?) is I’m in medicine and we tend to wait until something is falling off before getting it checked out. I had a completely normal cologuard test in 2019 after turning 50, then the pandemic hit and the next couple years are a workplace blur. I had a few transitional jobs and wrist surgery so add those to the distractions. In the last year I’ve lived out of my car, hotels, crappy hospital food, and various round the clock schedules. Add to that my mom’s sudden death in January followed by my sister’s emergency hospitalization and surgery for Crohn’s. It was about this time I realized I had some bowel changes and blamed it on all of the above. Stress, right? I saw my doc and after I settled into my awesome job I scheduled colonoscopy consult. But….

Then on 10/6 after laxatives I had basically two episodes over two nights of moderate clotted blood. I figured I overdid the self treatment. No BM again. On 10/11 I threw in the towel due to now 10/10 left lower quadrant pain and went to the ER. Was admitted that night for sigmoid obstruction and was in OR next day for resection. Aside from my sister’s GI disease [likely lifestyle induced colitis to Crohn’s], I am where the family history starts. We have cancer galore but none in the GI tract.

Doing super well on recovery one month out. Exercising well with precautions for abs, walking 2/mi day.

So today first of four rounds of oxaliplatin IV and that rocked me. No jaw pain but salivary glands flood the mouth with introducing of food or drink. Tongue cramping like it wants to fold up. Uvula feels dried out. Spasm at IV site (no redness) and associated pins and needles of forearm. Dizziness, hot flashes, cold flashes, sweating (like menopause again). Some cold to fingertips when I tested water (rolling eyes). Muscles spasm in places I didn’t realize could. Not the usual Charlie horse. I did apply cold gel packs for 20 mins on, 20 mins off to hands and feet. Didn’t bother me. The onc nurse was worried I’d make things worse. Weird anxiety and deja vu type feelings.

Tonight after dinner I start xeloda (4 rounds as well).

Followed the links regarding neuropathic pain as that worries me more than the possibility of going bald. Not being able to hold needles or medical tools because of neuropathy could be a job changing issue.

So, hello. Comments and helps welcome ❤️
Age 53
Sigmoid colon cancer
TIIIa, N1a, M0
“Napkin ring” tumor
Colon resection 10/12/22
1/32 nodes cancerous
PET 11/09/22 no Mets

Nor Cal
Posts: 69
Joined: Sun Dec 06, 2020 8:18 pm

Re: New here

Postby Nor Cal » Fri Nov 11, 2022 1:50 pm

Sorry you've joined us (but glad you found this site!). I had 9 cycles of oxaliplatin and don't have any lingering issues aside from a little numbness in my feet. The infusions always came with alarming side effects, but these would typically be gone by days four or five. Hopefully you have a similar experience.

Just pay close attention to your fingers and report anything to your team.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 37 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

roadrunner
Posts: 310
Joined: Sun Jan 12, 2020 8:46 pm

Re: New here

Postby roadrunner » Fri Nov 11, 2022 5:31 pm

So if I understand you right, IV is Oxi-only and the 5-FU is coming from the concurrent Xeloda? I’m just not familiar with that adjuvant protocol, so I could be a little confused. Also sounds like you did the infusion through a peripheral vein?

Based my 8 rounds of FOLFOX-6 plus subsequent Xeloda (and related research that I am now gratefully forgetting :D), I’d venture these comments:

Oxi is heavy-duty, and YMMV on side effects. None of what you describe sounds wildly surprising, though my stuff didn’t really hit (except perhaps for first bite pain and cold sensitivity) until day 3/4, and got to some degree worse as I had more cycles. By the end of the first week I usually started improving (in my first four cycles, anyway, which is all you care about).

I think there’s very little risk of neuropathy in cycles 1-4. I did 8 (2 minus Oxi), and it started creeping in around 6/7, but is nearly all gone today. Also, when it does occur it is incremental, so discuss with your oncologist if your toes go numb. Def also watch your CBC and metabolic panel, as those can show real impacts from Oxi (liver enzymes and lymphopenia). I used Neulasta for the second 4, as I was pretty neutropenic at points. It worked very well, but there’s an art to taking it.

Other than that, good luck and strength to you! Chemo sucks but it’ll be over before you know it. Also, sounds like you’re doing well on exercise. I am a runner and tried to exercise through FOLFOX. Didn’t do great—walked a little but watched a lot of tv! Xeloda was much easier. But if possible for you, I think it’ll reduce bad side effects and enhance immune function.
7/19: RC: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/19-10/19 4 rds.FOLFOX neoadjuvant, 3 w/Oxiplatin (reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Chest CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign
CT/MRI 9/11 Clear
11/9/22: Rectal exam/scope Clear (2 yrs.)

DarknessEmbraced
Posts: 3727
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: New here

Postby DarknessEmbraced » Sat Nov 12, 2022 11:51 am

I'm sorry you're having such a hard time. *hugs* I hope your doctor can prescribe something that will help.
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

ERNP
Posts: 4
Joined: Sun Nov 06, 2022 12:35 am

Re: New here

Postby ERNP » Sat Nov 12, 2022 3:47 pm

roadrunner wrote:So if I understand you right, IV is Oxi-only and the 5-FU is coming from the concurrent Xeloda? I’m just not familiar with that adjuvant protocol, so I could be a little confused. Also sounds like you did the infusion through a peripheral vein?


Yes, oxaliplatin peripheral IV only. Will have total of four infusion every three weeks. Xeloda (Capecitabine) by mouth twice daily two weeks on, one week off for three rounds. I had completely forgotten that I had a dexamethasone infusion which probably added to some of what I felt immediately after (anxiety, heart racing, emotional, out of body). That has subsided and I will be asking for ativan next infusion. I feel like the oxaliplatin s/e might be leveling off.

roadrunner wrote:Other than that, good luck and strength to you! Chemo sucks but it’ll be over before you know it. Also, sounds like you’re doing well on exercise. I am a runner and tried to exercise through FOLFOX. Didn’t do great—walked a little but watched a lot of tv! Xeloda was much easier. But if possible for you, I think it’ll reduce bad side effects and enhance immune function.


I wholeheartedly agree it sucks and am grateful my course is short. I am forcing myself to be as normal as possible, exercise by force, and a little "fake it til ya make it" because I got back to work next week after six weeks out.

Thank you all <3
Age 53
Sigmoid colon cancer
TIIIa, N1a, M0
“Napkin ring” tumor
Colon resection 10/12/22
1/32 nodes cancerous
PET 11/09/22 no Mets

margiej
Posts: 108
Joined: Sat Apr 14, 2018 8:46 am

Re: New here

Postby margiej » Sat Nov 12, 2022 11:28 pm

Hi! Our diagnoses and treatments sound similar. I had six rounds of capeox and have neuropathy in my feet and just in the tips of my fingers. Fingers don't bother me at all but the feet neuropathy is a little bothersome. I can hike and run and function just fine, but my feet are sensitive. Sheepskin slippers or UGGs are there only things that really feel good on my feet.

It sounds like you opted to not get a port. That was my choice, also. My first infusion was in my hand and my hand and arm were very painful for a couple days. Subsequent infusions were higher up in my arm and much less painful. An electric throw/blanket helped a lot.

I had a lot of nausea that got worse as I went along in my treatment but I don't think I was typical. Do your best to stay hydrated. I was always trying to eat really healthy but my recommendation is to eat and drink anything that tastes good to you. I didn't have access to cannabis gummies back then but I think they would have been really helpful.

Four rounds is going to be really doable. It's not super fun but it will go fast and your side effects should be minimal. Wishing you all the best!

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

kiwiinoz
Posts: 1165
Joined: Thu Jan 03, 2013 11:44 pm

Re: New here

Postby kiwiinoz » Sun Nov 13, 2022 7:23 pm

Hi,

Sorry you had to join this club, kinda sucks to join and once you join it you tend to want to unjoin as soon as possible.

I am not familiar with the regime you are taking as I had FOLFOX via a port I had installed in my chest. However the oxaliplatin is effects are cumulative and get harder as you go on.
I did 10 / 12 rounds with Oxi but after talking to my Onc we canned the last 2 rounds as most of the benefits were attained with the earlier rounds.
At that stage, 10 years ago, well before COVID, I was going to work with shirts, ties, suits, the whole kit and caboodle, and I always wore cuff links. Towards the last few rounds I was having a hard time doing up buttons and couldn't put on the cuffs and had to ask my wife for her assistance to do so. Maybe you need to talk to your Onc once the peripheral neuropathy kicks in and monitor it.

I don't think you have any risk of going bald, as it is my understanding that this drug doesn't cause those side effects.

One thing I found is that staying hydrated made a massive difference between good rounds and bad rounds. I had one round where I was vomiting constantly, and I tried to drink which led to more vomiting and I ended up having to get fluids via IV.
After that I was always super careful about making sure I had plenty of fluids before I underwent any chemo.

I did chemo during the Australian winter, which is nowhere near as cold as the US winter, and I did a lot of running, and ended up running a lot inside on a treadmill. I could keep running but I was not as quick, nor could I run as long as I did previously so just keep doing some exercise
Stage IV Rectal Cancer (39 Year old male at dx)
pT3N0M1 (wish that was M0)
Diagnosed 05 Dec 2012
LAR 05 Jan 2013
VATS 27 Feb 2013
FOLOFX April 2013 - Sep 2013
Clear Scan 03 Dec 2013 - August 2020
Port Out 26 March 2015

User avatar
Jacques
Posts: 617
Joined: Sun Dec 28, 2014 10:38 am
Location: Occitanie

Re: New here

Postby Jacques » Mon Nov 14, 2022 7:35 am

Welcome to the forum.

My comments are:

  1. Try to have the Oxaliplatin run at a slower infusion rate (see comments in link below):
    https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59287&p=469490#p469490
    .
  2. After chemo is finished, have your doctor set up a Comprehensive Survivorship Care Plan for you, and then be sure to follow it closely for the next few years.
    https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=59411&p=471581#p471581

ERNP
Posts: 4
Joined: Sun Nov 06, 2022 12:35 am

Re: New here

Postby ERNP » Mon Nov 14, 2022 10:15 pm

Jacques wrote:Welcome to the forum.

My comments are:

[list=1]
[*] Try to have the Oxaliplatin run at a slower infusion rate (see comments in link below)
.
[*] After chemo is finished, have your doctor set up a Comprehensive Survivorship Care Plan for you, and then be sure to follow it closely for the next few years.]


Thanks I will ask about the slower infusion rate at next session.

And on my post-op surgical visit and onc consultation, both physicians discussed with me that plan and my PCP is involved as week.

Thank you!
Age 53
Sigmoid colon cancer
TIIIa, N1a, M0
“Napkin ring” tumor
Colon resection 10/12/22
1/32 nodes cancerous
PET 11/09/22 no Mets

ERNP
Posts: 4
Joined: Sun Nov 06, 2022 12:35 am

Re: New here

Postby ERNP » Mon Nov 14, 2022 10:18 pm

kiwiinoz wrote:One thing I found is that staying hydrated made a massive difference between good rounds and bad rounds. I had one round where I was vomiting constantly, and I tried to drink which led to more vomiting and I ended up having to get fluids via IV.
After that I was always super careful about making sure I had plenty of fluids before I underwent any chemo.


Hydration is my challenge now. For some reason water is absolutely nauseating. I can eat and drink other things but water, which I normally drink a gallon of daily, is a beast. I’m trying my best.
Age 53
Sigmoid colon cancer
TIIIa, N1a, M0
“Napkin ring” tumor
Colon resection 10/12/22
1/32 nodes cancerous
PET 11/09/22 no Mets

User avatar
beach sunrise
Posts: 724
Joined: Thu Mar 05, 2020 7:14 pm

Re: New here

Postby beach sunrise » Wed Nov 16, 2022 12:53 am

Maybe Biolyte once a day for electrolites would help some also.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

margiej
Posts: 108
Joined: Sat Apr 14, 2018 8:46 am

Re: New here

Postby margiej » Wed Nov 16, 2022 9:58 am

I had a really hard time swallowing water, too. You can get hydration in other ways.. juicy fruits and juices usually tasted good, tea, chocolate milk. I often took my xeloda pills with pineapple juice. Whatever works and what tastes good. In addition to all the anti-nausea meds, I found mints and gum and ginger candy all helped with nausea.
Thinking of you and hope you are feeling better.
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

MadMed
Posts: 187
Joined: Sun May 02, 2021 5:52 pm
Location: Massachusetts

Re: New here

Postby MadMed » Wed Nov 16, 2022 6:11 pm

Same with drinking water. My onc arranged for off week saline drip. I would get a litre through my port and was as new.
This was after an episode where my bp dropped to 90/45.
52M DX: RC lower rectum, guessing now 2cm from AV 4/27/2021
T3N0M0 adenocarcinoma with signet ring cell features
Tumor size 30mm
Tumor grade: G3
Baseline CEA 1.0
MSI status: MSS pMMR
Started Folfox 5/12/2021
Switched to FOLFIRINOX from session 2. 8 rounds total.
CT+MRI tumor contained shrunk 80%, no spread to other organs.
CRT started xeloda + 28 days Radiation 9/27-11/04
NED as of 4/06 CT/MRI/sigmoidoscopy
On W&W 04/06/2022


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