The Colon Club

Just got home from the hospital after getting infusion #8. Not so great news. My platelets are down to 96. So they gave me the regular Oxali/Leucovorin dose and also the 5FU take-home bottle, but I didn't get the 5FU bolus/push, and next infusion they're going to cut both drugs down by 25% to try to keep from having to delay any treatments. I'm glad that I don't need to delay treatments yet, but ugh. It makes me nervous, that I won't be getting the full amount. I would rather do that than have to delay, I'm sure, but still.

Maybe with the Oxali dose reduction I'll avoid getting any neuropathy before I'm done with chemo. We'll see.

Apparently the canisters they have been giving me for 5FU are no longer available, so instead I got a bigger-around double bladder doser thing without a hard exterior. They put that in a heart rate monitor bag since the new thing didn't fit in my bag for the canister. Kinda weird but I guess it works. I am nervous about maybe banging it into something and damaging the bladder, though.

I hope my chances of beating this aren't going to be tanked by reducing the chemo dosage.

Had my 9th infusion yesterday. With no bolus at infusion #8, my platelets went back up from 96 to 125, a nice improvement. My liver enzymes are at the lowest they've been since early August, too; one is just a hair inside of normal range, and the other is less than 2x normal.

This round my chemo was cut down by 25% across the board (bolus restored but cut by 25%, as well as Oxali and 5FU cut back). This was to prevent my platelets from dipping too low. The cold sensitivity seems just as bad as normal, although I'm noticing less of a tremor in my hands and calves than usual for today. My appetite is about as blah as it usually is, too. None of my symptoms seem notably worse. Still no sign of neuropathy so far.

Having trouble believing I only have 3 more infusions left after this. I hope it's all been super effective!

So glad your treatment is going well. You got this!
Margie

Toward the end, my treatments were every 3 weeks because my platelets were too low. I am almost positive in Europe you get 8 treatments of Folfox. I keep thinking this because when I was in Austria I am pretty sure they were talking about 8. I came back to the USA. Once I passed 8 I felt a little more relieved and figured anything above was "extra". I did not mind skipping a week at the end, quite possibly it helped me with neuropathy. 6 months out and it feels like I am walking on wet sand or that my socks are bunched up in my shoes. Weird, but certainly tolerable!

AppleTree, that's how I feel about it too. I know they are looking at whether 7 or 8 doses of FOLFOX is sufficient compared to 12, and the common wisdom seems to be that making it to at least 7 or 8 is best. I did talk to my oncologist about potentially cutting out the oxaliplatin after that, but she felt that my additional risk because of the 2nd noncontiguous tumor deposit they found (close to my original tumor, fortunately) makes it important for me to complete all 12 rounds. Not a hard sell for me at this point, since I don't have neuropathy yet and my side effects haven't been bad. Hoping everything holds steady for me. I know neuropathy can show up after treatment ends, I hope it's a slow onset for me if it does happen, so we can adjust accordingly.

Jannine
My tingling in feet showed up about one month off chemo. It is different than the tingling, painful feeling from cold but definitely the cold makes it worse. It isn't always an issue. I do hope it goes away but I can live with it.
S

Well, today -- infusion #10 -- has been weird.

I got the same 25% cut in dosage as before, as I expected. My neuropathy showed up a week after Infusion 9, a week ago today, and has held steady and has only been mildly tingly in my feet and a little numb in my fingers when I rub them together. I did speak with my oncologist's nurse, and she said this is what they do when it's very mild and not painful. They had seen the note I entered in the system a week ago about my neuropathy. My oncologist is at a conference so was not there to see me (this was an off week for me to see her). I will see her the next time I go in for an infusion.

We finished up by 12:30pm, which was by far the earliest we've ever gotten out of there. We got lab results back very fast and also the chemo drug request went through very quickly. We ate downtown at a local deli/grill my husband likes, and then came home. When I got home I felt really lousy and my stomach felt off, so after I did a small work thing that was time sensitive and needed to be turned in today, I went to bed around 3pm. I woke up shortly before 8. I feel a whole lot better, but I hope I don't just lie awake most of the night. I had intended to drink lots of water to flush out the toxins today, so I'm now trying to catch up on that. I do think I needed the sleep, so I'm hopeful it'll be fine. I'll probably go to bed a bit late.

I was really surprised to sleep so long on an infusion afternoon; normally I don't get tired until disconnect day.

(Edited because it looks like I hadn't mentioned my onset of neuropathy in this thread yet)

Thank you so much for sharing your experience after each infusion. My mom just started her first round on Monday. I know everyone will react differently but it helps to get some insight into another’s experience.

Good luck to your mom, Punky! And I'm glad this is helpful. That's pretty much why I'm writing this. Other people's experiences have been so helpful for me to hear about, to get perspective and understand where my side effects fit in on the spectrum of "not so bad" vs. "TALK TO YOUR DOCTOR ASAP." It also helps me to know how most doctors tend to handle side effects. Then I have an idea of whether what we're hearing fits in with what others have heard, or if the approach seems oddly out of whack with what others like us report.

Went in for infusion #11 yesterday. My platelets were up by 20k, much to my surprise. I had been worried that they might drop another 20k and be down to the point that I would have to delay chemo.

My other numbers were mostly a shade low, but nothing that would prevent getting chemo. So I just need to go in for disconnect and then one more chemo, which hopefully will happen on time.

I got approval from my oncologist to travel to Costa Rica in January, 5.5 weeks after my last infusion (if it stays on schedule). I already have all the immunizations needed, so that's not a concern.

I'm no longer having first bite at all, and haven't for the last several infusions. I don't miss that! Also still not having problems with nausea, although I do have a lot of trouble with my appetite for 4-5 days after an infusion. I try to make up for that once I get my appetite back. I'm so looking forward to gaining back a little weight.

I'm noticing that I'm having a harder time keeping up my usual brisk walking pace for long. I'm planning to start a couch to 5k training program right around the time my treatment ends, although I'll definitely need to ease into that, to avoid wearing myself out. It is a 10-week program which will be helpful in that regard.

My neuropathy in my feet is a little more noticeable and tingly than it was, but it's still not bothering me in bed, and my hands are still unaffected. So I got my oxaliplatin dose (at the same 25% reduction) this time. We'll see how things feel at the last dose.

Also my CEA was down to 1.8, which seems like another good sign. Almost done!!

You’re almost there!

Having the goal in sight is a great motivator and I like your physical goals too. C25K is a fantastic program and has helped millions of people get active. It looks like you are already active. Chemo really whacks your stamina but the ability to get it back fast should come back after a month or two.

Ugh. Was going to go to the first Couch to 5k training run this morning, but I felt lousy after getting up and then I threw up 10 minutes before we were going to leave. I decided I'd better stay home even though I felt a bit better after getting the nothing out of my stomach that was there (hadn't even had coffee yet; I'd only had some water to try to settle my stomach). This was the day after my neulasta shot, and the only other time I've vomited through all of this was also the morning after a neulasta shot. So I think the neulasta must be causing the (fortunately brief) nausea. Fortunately it hits early and once I get rid of the nothing in my stomach, I feel a lot better. Still feel a little shaky and icky, but my stomach doesn't feel unsettled at least. I've eaten a little breakfast and lunch without mishap since. This was maybe my 9th neulasta shot, so I'm not sure why it's only had this effect twice.

Not a great start to the day. I'll just go for a walk before dark to make up a bit for the missed run. Sigh.

Yesterday was the 2nd Couch to 5k running program date. Temperature was in the 40s. Much to my surprise, I was able to do the run 1 minute/walk 2 minutes scheme without feeling especially challenged. I did need to keep my hands in my pockets the whole time to keep my hands warm, and I was having some cold sensitivity tingling in my fingers towards the end, but it didn't get too bad. I just got some silk liners in the mail so I'll try wearing those under my running gloves. (I do have running mittens too, but I have looked everywhere and haven't found them yet. They may still be in a winter clothing box, which I'm still working on unpacking.)

I won't make tomorrow's training run because we have theater tickets that evening, but I should be able to make Sunday's. My last chemo treatment is next week, and I'll probably pause my C25K participation at least while I have the bottle with me.

I feel like my side effects this round weren't nearly as bad as usual; I didn't feel this good right after the 25% cut in chemo. My appetite was the best it's ever been after chemo; a couple of the days where I normally eat very little after chemo, I had a good appetite. Not sure if that's a cumulative lessening of the impact of the chemo due to the dosage reduction or what, but I'll take it.

Overall I'm feeling pretty good about everything, and really looking forward to being done with FOLFOX after next week.

Jannine wrote:Yesterday was the 2nd Couch to 5k running program date. Temperature was in the 40s. Much to my surprise, I was able to do the run 1 minute/walk 2 minutes scheme without feeling especially challenged. I did need to keep my hands in my pockets the whole time to keep my hands warm, and I was having some cold sensitivity tingling in my fingers towards the end, but it didn't get too bad. I just got some silk liners in the mail so I'll try wearing those under my running gloves. (I do have running mittens too, but I have looked everywhere and haven't found them yet. They may still be in a winter clothing box, which I'm still working on unpacking.)

I won't make tomorrow's training run because we have theater tickets that evening, but I should be able to make Sunday's. My last chemo treatment is next week, and I'll probably pause my C25K participation at least while I have the bottle with me.

I feel like my side effects this round weren't nearly as bad as usual; I didn't feel this good right after the 25% cut in chemo. My appetite was the best it's ever been after chemo; a couple of the days where I normally eat very little after chemo, I had a good appetite. Not sure if that's a cumulative lessening of the impact of the chemo due to the dosage reduction or what, but I'll take it.

Overall I'm feeling pretty good about everything, and really looking forward to being done with FOLFOX after next week.

Progress is progress.

I have the problem with running gloves too. I have one pair (Arcteryx) right now. I had a New Balance pair - son took it. I have a North Face single. These are nice to leave around at home, car and office as you can use them in a pinch or for running.

It feels very good to get your body back to normal. Or at least approach normal. Where you can feel the strength, stamina, flexibility in your body where it was taken by cancer treatment. It's part of the trip back to normal.