Colon cancer: my treatment and side effects

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Jannine
Posts: 102
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Mon Dec 17, 2018 8:42 am

At my last infusion I let my oncologist know that I'm having to put my hand on the wall when I close my eyes in the shower, because I don't feel very steady on my feet with the neuropathy if I can't see where I am. I also let her know about the swelling in my feet. She cut the Oxaliplatin out of my last infusion because of these two factors, which was a relief to me.

For neuropathy progression, I definitely have the sensation of wearing socks on my feet all the time, and my toes and feet are oddly tingly and especially weird when I do things like go up/down stairs. It's uncomfortable but not painful, fortunately, and not keeping me awake at night. I think it's still slowly getting worse, which is no surprise.

No persistent neuropathy in my hands or fingers yet, although I do get a mild tingly sensation in my hand and fingers when I extend an arm straight. I expect that is neuropathy-related.

My last disconnect was last Thursday. I only had a couple of poor-appetite days after that. I'm super excited to have finished with chemo before the holidays! Glad that stage of things is done, and I hope I never need to do it again.

I have my first post-chemo CT scan on January 11th, and will have a colonoscopy in May.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8

Jannine
Posts: 102
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Wed Jan 02, 2019 5:38 pm

Not thrilled about my latest update, but here it is.

The neuropathy has continued to progress, as expected. My last Oxaliplatin dose was Nov. 27. Over the Christmas holiday I started to have neuropathy in my hands. It is in all my fingertips. It is worst in my thumbs, especially the left thumb, and next-worst in my index fingers. I now have to button shirts slowly, although I can still do it. Using a pen or pencil requires me to focus more than normal. I'm not having much trouble typing as long as my fingers are in the right place on the keyboard, and I can drive just fine. I'm very concerned about the neuropathy continuing to progress at this rate for another couple of months. I'm being very careful taking stairs and such.

It feels like I'm wearing 3 pairs of socks on my feet, and the soles of my feet are pretty numb. The tips of my toes do still feel things, although not well. My arches get pretty tingly when I walk. It feels like I'm walking on a bed of electricity. I have no idea how I am going to figure out if new shoes fit me.

The good thing is that it's not painful most of the time; it's just difficult to adjust to, and frustrating. It's also very distracting when I walk anywhere.

I am still getting some swelling in my feet, but it's not as bad as it was around the time of my last 5FU infusion (Dec. 11). I've ordered compression socks to try to help with that.

My first CT scan after chemo is in 9 days. I really hope things look good and they don't find anything suspect.

My husband and I split a minibottle of prosecco at New Year's. I sincerely hope that 2019 is better than 2018 was for me.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8

Punky44
Posts: 168
Joined: Mon Oct 01, 2018 4:29 pm

Re: Colon cancer: my treatment and side effects

Postby Punky44 » Wed Jan 02, 2019 7:53 pm

Sorry you are dealing with that—do they think it could be permanent or just lingering for awhile but eventually will go away? Hoping your 2019 (and mine) is amazing!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17
MRI/CT/PET puts staging at T3N2M0
Trying total neoadjuvant therapy—chemo first, then short course radiation, then surgery
11/5/18 started Folfox—6 down, 2 to go!

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

Jannine
Posts: 102
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Wed Jan 02, 2019 10:11 pm

From everything I've read here, it does tend to improve eventually, although it may not go away completely. I'm hopeful that it won't get too bad, and that it will also improve eventually. I'll check in with my oncologist about what's likely when I see her in a couple of weeks.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8

Caat55
Posts: 563
Joined: Sat Dec 23, 2017 6:01 pm

Re: Colon cancer: my treatment and side effects

Postby Caat55 » Fri Jan 04, 2019 1:05 pm

Jannine,
My last chemo was in late July. My fingers are mostly working normally now, still a little clumsy on occasion. My feet feel normal except when sheets are cold, little prickles. I am taking Turmeric and black pepper capsules from Costco. They have made a huge difference. I am a pediatric therapist so on the floor, crawling and working with infants, young kids alot. Getting off the floor, even out of bed was painful....not anymore. I can more freely again now. Good luck with the scan, I had a CT and a PET, both clean so looking forward to reversal now.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

User avatar
mobrouser
Posts: 123
Joined: Wed Apr 11, 2018 1:44 pm
Location: Ontario

Re: Colon cancer: my treatment and side effects

Postby mobrouser » Fri Jan 04, 2019 11:55 pm

Jannine I'm sorry your neuropathy is progressing too. As you know I posted about my driving issues because of my feet a few weeks ago. I'm tempted to try driving my car again this weekend to see if there has been a change. But at the same time I don't want to deal with the disappointment if things haven't improved.

Just like you I can't close my eyes in the shower and I have been thinking about putting grab bars in there so I totally understand what you are dealing with.

Here's for great results on the 11th. That will make all these other issues less troublesome.
8) mob
CC Dx Oct 2017 @ age 58
Laparoscopic right hemi-colectomy Dec 2017
Adenocarcinoma ascending colon – 6cm x 6cm x 2cm, Low Grade, penetrates to peritoneum
T4a N2a M0, Stage IIIC
lymph nodes 6 positive out of 18
FOLFOX started Jan 16 2018; finished Aug 2 2018 (felt like a year)
CEA - 01/15/18 - 2.8; 07/29/18 - 5.3
CT scan Aug 8 2018 - Clear
PET scan Sept 6 2018 (thought about bringing the cat :wink: ) - Clear

Jannine
Posts: 102
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Sat Jan 05, 2019 9:16 pm

I was so sad for you when I saw that you had to quit driving your stick shift, Mob. It has been years since I've driven one, but I understand the disappointment. Hopefully you'll be driving it again soon.

Susan, thanks for the reminders about Turmeric and black pepper; I had bought the former a while ago but had put it away and forgotten about it. I took one this morning. :) I'll look for black pepper too.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8

Caat55
Posts: 563
Joined: Sat Dec 23, 2017 6:01 pm

Re: Colon cancer: my treatment and side effects

Postby Caat55 » Sat Jan 05, 2019 9:48 pm

Jannine wrote:I was so sad for you when I saw that you had to quit driving your stick shift, Mob. It has been years since I've driven one, but I understand the disappointment. Hopefully you'll be driving it again soon.

Susan, thanks for the reminders about Turmeric and black pepper; I had bought the former a while ago but had put it away and forgotten about it. I took one this morning. :) I'll look for black pepper too.

The come together in a single pill. I love driving our Subaru, 6 speed, feel connected. I do struggle with nuisance in shifting, getting better as time passes. Again reminders to all who read thread avoid foods enriched with folic acid, seems to increase nerve damage.
Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

Jannine
Posts: 102
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Mon Jan 14, 2019 7:56 am

My CT scan was Friday. My consultation with the oncologist is tomorrow but they went ahead and posted my final CT Scan results in the online portal already:

Abdomen/pelvis summary:
Postsurgical change from left hemicolectomy without evidence of intra-abdominal metastatic disease.

Lung summary:
Faint groundglass changes in the right middle lobe which may be inflammatory/infectious.

I also have a small fat-filled umbilical hernia, which doesn't surprise me; I thought I might have one. Things don't look any different on the outside, though.
Not sure what's going on with the groundglass changes.

I do have a small liver lesion that is unchanged since Feb. 2018 (when I got my first CT scan, before diagnosis) so they think it's benign.

I'm hopeful this means I'm NED, but I want to hear her say it!
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8

Caat55
Posts: 563
Joined: Sat Dec 23, 2017 6:01 pm

Re: Colon cancer: my treatment and side effects

Postby Caat55 » Mon Jan 14, 2019 11:29 pm

That is good news, congratulations. You deserve to hear it over and over again.

Susan
55 y.o. Female
Dx 9/26/17 RC Stage 3
Completed 33 rad. tx, xeolda 12/8/17
MRI and PET 1/18 sign. regression
Surgery 1/31/18 Ileostomy, clean margins, no lymph node involved
Port 3/1/2018
Oxaliplatin and Xeloda start 3/22/18
Last Oxaliplatin 7/5/18, 5 rounds
CT NED 9/2018

Jannine
Posts: 102
Joined: Wed Jun 20, 2018 7:46 am

Re: Colon cancer: my treatment and side effects

Postby Jannine » Thu Jan 17, 2019 9:11 pm

Got confirmation this week that the results look good. Yay!

The groundglass changes are apparently nothing to worry about at this point, since I'm not noticing any problems.

She didn't have clear advice for me regarding taking care of the hernia. I'd really like some specific advice so I'll know what kinds of exercises I can do and what kinds I can't, and what I can do carefully. Should I talk to my primary care physician about that? Or someone else? My oncologist mentioned that there are elastic belts I can wear to help protect it, but I have no idea to what extent that will help, or how.

My next CT scan is in 6-12 months; colonoscopy is in May.

She didn't recommend against my going ahead and having the port taken out, so I'm planning on doing that. Maybe a bit premature, since they didn't get a look at the rest of the colon when they tried to do my original colonoscopy, but man do I hate that port.

Also, has anyone here gone ziplining with a port? I'm concerned about the harness rubbing on or compressing the port and I'm leaning towards not doing it. If anybody has experience with this (or would say "don't!") please respond here and let me know!

Also, I'm going to sign up for a clinical trial that will be looking at whether exercise helps with neuropathy. I might end up in the control group, of course. But they said if I do they'll offer a physical therapy/exercise program after the trial is done, so those participants will still get something out of it.
DX: sigmoid colon cancer 5/2018. 48 F
laparoscopic sigmoid resection (24 cm removed); no stoma.
7.5cm adenocarcinoma -- mod. diff.
1 noncontiguous tumor deposit removed; 0/31 lymph nodes
T3 pN1c M0
5/18 before surgery, CEA 11.2
6/18 began FOLFOX
7/18: CEA 1.9; added neulasta post infusion
9/18: CEA 2.8
10/18: 25% chemo reduction
11/18: CEA 1.8


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