1st Chemo; Day 2

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Kiter
Posts: 5
Joined: Tue Oct 06, 2020 7:59 pm

1st Chemo; Day 2

Postby Kiter » Tue Oct 06, 2020 9:35 pm

So I'm new to the group and thought I would drop a quick note and perhaps there might be a question or two in there too :)

Today is day 2 of my first Chemo. It's FolFox with the med pump for the next 2 days. Thus far my side effects have been minimal, but mostly just weird:
  • Sneezing and runny nose the first day until midnight and then is just shut off.
  • Hiccups starting midnight first day. Seems to go for a few hours, then shut off for an hour and then start up again. Still getting them at 7pm second day.
  • Cramps in toes... once in a while. Woke me up last night!
  • Extremely stiff jaw (both sides) when starting to eat. Jaws are almost locked up. Takes a minute or so to work it out.

The doc told me to take ondansetron 2 times a day. Does that mean it lasts for 12 hours and I should take it once every 12 hours? I took the first at 10am; figured I would take the 2nd at 10pm to get me through the night (although, thus far no nausea issues).

I've read that I could be very tired on day 4 and 5? Is that so? I'm trying to decide if I should cancel my Friday (day 5) plans or not :roll:

Regards

P.S. I tried to figure out the TNM values to include in my sig, but got lost in all the details.
Diagnosed Aug 2020, age 56, male
Aug 2020 Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
10/5-7/20 round 1 FolFox (with Avastin); CEA after 1721
10/19/20 Neutrophils at 0.3
10/29,30/20 (2) Filgrastim-sndz injection(s) to raise Neutrophils level
10/30/20 Neutrophils at 33.67
11/3/20 round 2 followed by Neulasta injection; CEA before 1051
11/18/20 rnd 3; CEA 518
12/4/20 rnd 4; CEA 213
12/11/20 rnd 5; CEA 163
12/31/20 rnd 6; CEA 56
1/15/21 rnd 7; CEA 39
1/29/21 rnd 8; CEA 33

User avatar
beach sunrise
Posts: 369
Joined: Thu Mar 05, 2020 7:14 pm

Re: 1st Chemo; Day 2

Postby beach sunrise » Wed Oct 07, 2020 12:05 am

Make sure you tell your onc first thing about these side effects. My fingers locked up with cramps akin to what I would say someone with RA suffers. A forum member here said it was neuropathy. Oxaliplatin is rough stuff to say the least.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
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. Adding Everolimus soon.
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

roadrunner
Posts: 97
Joined: Sun Jan 12, 2020 8:46 pm

Re: 1st Chemo; Day 2

Postby roadrunner » Wed Oct 07, 2020 12:04 pm

I recently finished my 8th (and I hope last!) cycle of FOLFOX 6. Here are some comments: Yeah, I had the hand cramps. I’m a guitarist, and in the first few cycles this side effect meant a day or two when I couldn’t play. It worsened with the number of cycles, so that by the later cycles it lasted longer and got bad enough that just holding a plate could trigger it. Good news is that it went away fairly rapidly — 3-4 days of each cycle, tops, and was intermittent on those days. Not a huge deal. This is the Oxaliplatin — when it was dropped for cycle 8 I experienced no hand cramps. The progressive neuropathy is a real issue, though, and should be watched closely. My oncologist pulled Oxi in cycle 8 because I’d had a great response by then and I’d made vague comments about “my toes feeling a little numb.” Turned out he was right — the numbness built for about a month after the Oxaliplatin was removed, though it seems to be slowly reversing now (5-6 weeks out). Others have experienced much more serious versions of this than I did. You can look it up on many threads here by searching “neuropathy,” though you may have to adjust for the FOLFOX/Oxi context specifically.

The jaw thing sounds like a version of “first bite” syndrome. My enjoyable take on that was a little more interesting than yours — felt like someone was jamming railroad spikes into my jaw for a bit when I took that “first bite.” Goes away after a few seconds, though, so no big deal. Interestingly, oncologists really don’t seem to recognize this one — I even got to the point of joking with mine that I knew they were going to say they never heard of it; I think they all get together and pull our collective leg on this one: “What? that’s odd, never heard of that one!” When many, many patients on Oxaliplatin report it. But really, it’s just an annoyance and they have more important things to worry about :)

I had lots of other side effects (some fairly serious), so you seem to be doing really well so far. Overall, Days 1-2 were ok (love the steroid!), days 3-4 were the worst, pretty fatigued, vaguely sick, shortness of breath, etc. just need to keep your head down and plow ahead. Day 5-6 got better, but it was pretty marginal. Then got real improvement and was nearly normal in week two (off week). The good times got shorter as the cycles mounted, but YMMV. There’s a great, super deatailed blog post about the FOLFOX chemo experience posted by a colon cancer patient that really helped me. I’ll try to find it and link it for you in a separate post.

Bottom line/my two cents: This is a bit tough (and there’s a range of toughness), and you have to keep really good communication with your oncologists/chemo nurses, but you will get through it, and there will even be lots of good times during treatment. It worked fabulously for me, and was worth the “ugh factor.” Good luck!
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

roadrunner
Posts: 97
Joined: Sun Jan 12, 2020 8:46 pm

Re: 1st Chemo; Day 2

Postby roadrunner » Wed Oct 07, 2020 12:09 pm

Here’s the link — really wonderful background for those doing FOLFOX chemo.

http://www.unixwiz.net/techtips/folfox6.html
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

Kiter
Posts: 5
Joined: Tue Oct 06, 2020 7:59 pm

Re: 1st Chemo; Day 2

Postby Kiter » Wed Oct 07, 2020 1:40 pm

Thanks Beach Sunrise and Roadrunner for the thoughtful responses.

I did have a bit of a burning sensation in the tips of my fingers when handling salami and summer sausage yesterday (day 2 lunch). Not sure if that was a temperature thing or a reaction to something in the meats. I handled other things from the fridge that should have been the same temp. So, not sure. But it went away almost immediately and I just "didn't do that again".

The biggest thing has been the dang hiccups. Whole body shaking hiccups every 5 to 14 seconds. Woke me up at 4am; kept me awake till 6:30am; woke me again at 8:00 and continued till 11:00am. Hopefully after I unplug the pump in 2 hours it'll stop.

Roadrunner, thanks for the link, I'll give it a read later this afternoon.
Diagnosed Aug 2020, age 56, male
Aug 2020 Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
10/5-7/20 round 1 FolFox (with Avastin); CEA after 1721
10/19/20 Neutrophils at 0.3
10/29,30/20 (2) Filgrastim-sndz injection(s) to raise Neutrophils level
10/30/20 Neutrophils at 33.67
11/3/20 round 2 followed by Neulasta injection; CEA before 1051
11/18/20 rnd 3; CEA 518
12/4/20 rnd 4; CEA 213
12/11/20 rnd 5; CEA 163
12/31/20 rnd 6; CEA 56
1/15/21 rnd 7; CEA 39
1/29/21 rnd 8; CEA 33

User avatar
beach sunrise
Posts: 369
Joined: Thu Mar 05, 2020 7:14 pm

Re: 1st Chemo; Day 2

Postby beach sunrise » Thu Oct 08, 2020 12:29 am

I bet its exhausting as it happens at night. Its interesting and have not heard of it but I take melatonin and it knocks me out. Maybe try it and you won't know you are hiccupping :) Idk. Let us know what your onc says.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
8 rds 6-10 CEA 11.4 4 more no oxa
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. Adding Everolimus soon.
MHL1+
PMS2+
MSH2+
MSH6+
POLD1
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

roadrunner
Posts: 97
Joined: Sun Jan 12, 2020 8:46 pm

Re: 1st Chemo; Day 2

Postby roadrunner » Thu Oct 08, 2020 9:11 am

It might be worth searching this forum for “hiccups.” There are a number of threads. I didn’t research it, but my vague impression was that this seems likely to be linked to the steroid, so maybe that could be subbed out.
7/19: Rectal cancer: Initially staged as IIIA, T2N1M0
Initially approx 4.25 cm, low/mid rectum, mod. well diff. adenocarcinoma
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (lots of side effects/reduced size est. 70-75%)
Switched to neoadjuvant chemorad in 11/19 (Xeloda and approx. IMRT, 60 Gy, 33 fractions)
Trying to achieve cCR.

jumpman50512
Posts: 11
Joined: Thu Jan 10, 2019 10:36 pm

Re: 1st Chemo; Day 2

Postby jumpman50512 » Tue Nov 03, 2020 2:11 am

I used to have almost all the same side affects as you

the lock jaw sucked

but drink a lot of water I mean a lot i drank a gallon it helped me a lot with the lock jaw

wishing you positive energy
Stage IV Survivor Currently (Diagnosed @ 29) currently 33
1 Met to the Liver
Colo-Rectal cancer surgery
12 rounds of chemo + Radiation + Oral Chemo
12/1/21 Colonoscopy Clean
2/1/21 CT scan Clean
CEA currently at 5.6 (maybe due to marijuana)

Kiter
Posts: 5
Joined: Tue Oct 06, 2020 7:59 pm

Re: 1st Chemo; Day 2

Postby Kiter » Wed Nov 04, 2020 12:27 am

Hey guys, sorry to be slow with the reply. Days 4 and 5 of the 1st round of Chemo knocked me out. Mainly 'cause I did not sleep the previous nights due to those hiccups. Then I got caught up in feeling good again and then my WBC/Neutrophils count was so low that we had to postpone round 2 for 2 weeks.

Neutrophils count: (1.36 on Oct 15th; 0.3 on the 19th; 0.51 on the 26th. But, after 2 shots of filgrastim-sndz (over 2 days) I'm at 33.67 Neutrophils and 42.6 (i.e. 42,600) WBC. So, ya, that seemed to work -- maybe a bit too exuberantly. And that means I can restart the Chemo, which we did today. So, this is my Chemo #2 - Day 1 and everything is fine thus far. With suggestions and comments from this forum I feel a bit more prepared this time. Have some sleep help if needed (thanks Beach Sunrise); drinking even more water for the "lock jaw" (thanks jumpman); and I've got some cannabis 'relief' waiting to be used as mentioned in the link that roadrunner provided (thanks roadrunner).

Thanks all for your input.

P.S. answering my own question about the ondansetron in case someone searches for the answer... My doctors clarification was to take it 2 times a day: AM and PM. Specifically at least 30 minutes before meals. If needed, 3 a day could be taken but keep them 8 hours apart.
Diagnosed Aug 2020, age 56, male
Aug 2020 Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
10/5-7/20 round 1 FolFox (with Avastin); CEA after 1721
10/19/20 Neutrophils at 0.3
10/29,30/20 (2) Filgrastim-sndz injection(s) to raise Neutrophils level
10/30/20 Neutrophils at 33.67
11/3/20 round 2 followed by Neulasta injection; CEA before 1051
11/18/20 rnd 3; CEA 518
12/4/20 rnd 4; CEA 213
12/11/20 rnd 5; CEA 163
12/31/20 rnd 6; CEA 56
1/15/21 rnd 7; CEA 39
1/29/21 rnd 8; CEA 33

Kiter
Posts: 5
Joined: Tue Oct 06, 2020 7:59 pm

Re: 1st Chemo; Day 2

Postby Kiter » Fri Feb 05, 2021 5:35 pm

Just an update:

Well it's long past my 1st Chemo days...
Am now just finished round 8.
My CEA has gone from 1000+ to 33 and my tumors were reduced by 40% after round 4.
So it seems to be working.

Am also doing Mistletoe Therapy along with a strict Keto diet and Testosterone Therapy.
All combined, I feel that my side effects are minimal compared to others.
Diagnosed Aug 2020, age 56, male
Aug 2020 Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
10/5-7/20 round 1 FolFox (with Avastin); CEA after 1721
10/19/20 Neutrophils at 0.3
10/29,30/20 (2) Filgrastim-sndz injection(s) to raise Neutrophils level
10/30/20 Neutrophils at 33.67
11/3/20 round 2 followed by Neulasta injection; CEA before 1051
11/18/20 rnd 3; CEA 518
12/4/20 rnd 4; CEA 213
12/11/20 rnd 5; CEA 163
12/31/20 rnd 6; CEA 56
1/15/21 rnd 7; CEA 39
1/29/21 rnd 8; CEA 33

Nor Cal
Posts: 10
Joined: Sun Dec 06, 2020 8:18 pm

Re: 1st Chemo; Day 2

Postby Nor Cal » Fri Feb 05, 2021 7:50 pm

Glad to hear. If you're still on Folfox after 8 cycles then it seems that you are tolerating things well. Keep up the good thoughts.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. BRAF mutation. CEA 39.5
7-12/20 9 cycles FOLFOXIRI (plus Avastin cycles 2-6)
CEA 2.9
12/20 radioembolization (right lobe) cea 2.0
1/21 chemoembolization (left lobe)
1/21 1 cycle FOLFIRI
2/21 chemoembolization (left lobe)

User avatar
horizon
Posts: 1604
Joined: Tue Apr 12, 2011 10:10 pm

Re: 1st Chemo; Day 2

Postby horizon » Sat Feb 06, 2021 11:13 am

No one warned me about "first bite pain". I learned about it on this forum. I got advice to swish with apple juice before eating. It did seem to help. Might have been a placebo effect but that was fine with me.

viewtopic.php?t=27973
I'm just a dude who still can't believe he had a resection and went through chemo (currently 9 years NED). Is this real life?


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