The Colon Club

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.

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.

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!

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.

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

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.
mob

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.

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

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!

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

Susan

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.

Wonderful results! Congratulations!

My neuropathy seemed like it had stopped advancing by late January. Changes are so slow that I can't tell a difference day to day and it's iffy whether I can even tell week-to-week. The major change I have noticed is that in early January I had to really focus in order to write anything, and I was no longer able to write small. I still can't feel my fingers very well, but I am able to write small without having to focus, which is definitely a mechanical improvement.

I can now fully straighten my arms in some directions without feeling like an electric shock is going through the length of my arm. Also I'm having less trouble with buttoning buttons. So those are some other things that aren't as bad as they were.

I feel like the soles of my feet might be getting to be a bit more tingly than they are numb, but I can't decide if that's a real change or if I'm just imagining it.

Oh, I DO feel like I can feel my hair with my fingers a bit now when I wash it in the shower. So there's a sensation thing that seems improved.

At any rate, I think that my neuropathy is improving by tiny increments, even though I don't feel like sensation in my extremities has changed much. My legs still feel numb up to the knee; my toes don't feel any less dead when I wiggle them, etc. But being able to write and button my shirts reasonably easily is a HUGE improvement in feeling like I can take care of myself. I'm hopeful that sensation will gradually return, for the most part.

I am scheduled to have the port taken out next week. Really looking forward to getting rid of that thing!

It is amazing how good it felt to have the port removed. Congratulations. !
susan

Port was removed a week and a half ago. I had it removed in radiology, which wasn't an area I had been to before. It turned out that they had sutured it in place, so it was the devil for them to take back out again. I think I was in there for about 50 minutes. Just had local anaesthetic. The Dr. was good and kind. He was amazed that he couldn't find the scar from when they put it in; I had healed up really well. I had been diligent about keeping it out of the sun. I've replaced the dressing a few times and it seems to be healing up well, although it looks like almost a 2" scar.

I've been running about once a week. Not as often as I'd like, but weather and such haven't helped my tendency towards inertia, ha. This past Thursday I ran/walked about 4.2K (GPS watch kicked in late so I'm not sure about the exact distance). The port site didn't bother me during the run, which was a relief. Looking at my stats, it was among my top 10 efforts in average pace. That makes me feel SO good. I am signed up to run in the Baltimore Shamrock 5k next weekend. I'm hoping that I'll at least come close to last year's time on the 5k. That would mean a lot to me. That race last year was my best 1k and my best mile ever. (Okay it helps that the first 1.5k is all downhill in that race!) I feel like I'm getting close to being back in the same shape, which is really exciting. I've never been diligent in my training, so I always end up walking a fair bit, but that's okay with me.

Hopefully I'll manage something close to the same finish time this year. And if not, well I still get to wear my ridiculous green tutu that I bought for this race last year. I love seeing the silly outfits people wear!