Guess a new side effect has shown up

Please feel free to read, share your thoughts, your stories and connect with others!
Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Guess a new side effect has shown up

Postby Volfan » Tue Aug 08, 2017 8:24 am

Yesterday I got my 9th treatment. After I was done I stood up and almost fell over due to my calf muscles being so tight. After a little walking they improved some. Then when I got in bed and tried to sleep (good luck with that with the steroids) I could feel my legs muscles twitching all night. Now this morning right calf muscle is tight if I sit for awhile.
Is this something y'all have experienced?
Also chemo yesterday seemed to really hit hard on the tiredness. Luckily I'm off today so lots of Netflix for me.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

NHMike
Posts: 669
Joined: Fri Jul 21, 2017 3:43 am

Re: Guess a new side effect has shown up

Postby NHMike » Tue Aug 08, 2017 9:34 am

I'm only on Xeloda and I haven't had any muscle tightness or cramping since starting radiation and chemo but I do regular stretching and I have been taking additional electrolytes to avoid dehydration. Maybe it's the Oxaliplatin?
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

Tdubz
Posts: 94
Joined: Sun May 07, 2017 11:01 am

Re: Guess a new side effect has shown up

Postby Tdubz » Tue Aug 08, 2017 11:12 am

I had my legs feel very weak for a day on my off treatment week. It felt as if I had done a very hard leg workout. The next day my legs were sore. Then it was gone. I didn't do any exercise at all so it was a bit strange. I've also had sore muscles in my back. Not sure if that's from the chemo or just that I'm laying down a lot more lol.

James65
Posts: 364
Joined: Thu Mar 06, 2008 9:41 am
Location: Exeter, NH
Contact:

Re: Guess a new side effect has shown up

Postby James65 » Tue Aug 08, 2017 11:16 am

I had muscle twitching that drove me nuts on my first folfox round and managed to figure out in between rounds that one or a combination of the meds they gave me for side effects was causing it. Sounds like what you are experiencing is probably different, but thought I'd throw this in the mix.
Diagnosed with stage III rectal tumor (though probably late stage II) January 2006.
Chemo/Radiation
Full APR Surgery
Folfox Chemo
So far NED.
Oops. Liver tumor diagnosed 10/13 after elevated CEA. Liver resection for 5cm tumor 12/6/13. So far so good.
Oops again, one tumor in each lung diagnosed 8/8/16. One too small to deal with and the other resected in late September. Wait and watch for now.

JudiB
Posts: 67
Joined: Sun Mar 05, 2017 5:30 am

Re: Guess a new side effect has shown up

Postby JudiB » Tue Aug 08, 2017 2:33 pm

Hello Volfan
I too had muscle twitching but just a couple of times and during the night.it was earlier than the 9th, I think after the third chemo. My leg twitched quite strongly and I also shivered violently at the same time. It was scary, but passed after about an hour.
I think it may be a nerve thing like the neuropathy. Oxi does wierd stuff!
Hope yours passes quickly... number 9, so you're almost at the finishing post! Well done!
Xxxx
May 2004 Breast cancer lumpectomy followed by radiotherapy, Tamoxifen 5 years, then Femara 2 years.

Jan 2017 resection around colo-rectal junction
T2bN1 M0
March 2017 Chemo Folfox started. Oxaliplatin for 4 treatments, then just 5 FU and Leucovorin for remaining 8 treatments.
June 2017 clear scan
Last chemo August 2017
August 2017 clear scan

veckon
Posts: 106
Joined: Thu Jul 27, 2017 7:44 am

Re: Guess a new side effect has shown up

Postby veckon » Tue Aug 08, 2017 2:50 pm

Toward the end of FOLFOX muscle spasms for me got really weird. Like my hands would curl up and spasm. Not exactly twitch but I imagine it's related?
27 yo male
Metastatic rectal cancer diagnosed 12/16
Liver metastases and peritoneal carcinomatosis
Lynch syndrome, MSI-H
Failed liver resection 3/17
FOLFOX6 12/16 - 05/17
Keytruda 5/17 - present
@Memorial Sloan Kettering

User avatar
juliej
Posts: 2748
Joined: Thu Aug 05, 2010 12:59 pm

Re: Guess a new side effect has shown up

Postby juliej » Wed Aug 09, 2017 6:30 pm

Volfan wrote:Yesterday I got my 9th treatment. After I was done I stood up and almost fell over due to my calf muscles being so tight. After a little walking they improved some. Then when I got in bed and tried to sleep (good luck with that with the steroids) I could feel my legs muscles twitching all night. Now this morning right calf muscle is tight if I sit for awhile.
Is this something y'all have experienced?

I had the same thing! Calf muscles so tight I staggered around like Frankenstein! :shock: It's definitely the oxaliplatin that's causing it. Not a lot you can do, but try increasing your hydration, especially consuming a drink with electrolytes - not just plain water. Gatorade or any sports drink with electrolytes should work. I used Nuun tablets and dissolved one in a bottle of water.

Also, I can empathize with the steroid buzz! They kept me up all night too until the onc nurse suggested taking an Ativan before bedtime. That seemed to work pretty well. I could finally get some sleep and it also helped with morning nausea so two for one! :D See if you can get a prescription from your onc.

Hope this helps!
Juliej
Stage IV, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/11
LAR, liver resec, HAI pump 11/11
Double lung surgery + ileo reversal 2/12
Adjuvant Xeloda 3-9/12
VATS rt. lung 12/21/12 - benign granuloma!
NED 3/17/12 to 10/2/2017, CEA<1

NHMike
Posts: 669
Joined: Fri Jul 21, 2017 3:43 am

Re: Guess a new side effect has shown up

Postby NHMike » Wed Aug 09, 2017 6:35 pm

Can you drive after taking the Oxaliplatin?
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: Guess a new side effect has shown up

Postby Volfan » Wed Aug 09, 2017 6:52 pm

Thanks for the replys.
My wife picks me up after treatment but they won't let me drive if I get the Ativan which I do on chemo days. Not sure about the oxi though.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude

Soccermom2boys
Posts: 145
Joined: Tue Nov 10, 2015 10:29 pm

Re: Guess a new side effect has shown up

Postby Soccermom2boys » Wed Aug 09, 2017 10:05 pm

NHMike wrote:Can you drive after taking the Oxaliplatin?


I drove home after all of my infusions of FOLFOX so it is definitely possible if nothing else is administered that would impact your driving ability. As with all things chemo, it will depend on how your body takes to the oxaliplatin, but it is definitely possible.
8/3/15 Went in with a hemorrhoid, came out with a tumor
8/12/15 Biopsy from colonoscopy confirms RC (45 yrs old--zero family history!)
9/21 - 10/29/15 chemorad 28 tx (with Xeloda)
12/17/15 APR with perm colostomy
Pathology report stages me as IIIA (T2N1M0)--1/15 LN detects cancer
2/3/16 chemo port inserted
2/8-6/2/16 8 rounds of Folfox
With these odds, how have I not won the lottery already?!

Tdubz
Posts: 94
Joined: Sun May 07, 2017 11:01 am

Re: Guess a new side effect has shown up

Postby Tdubz » Wed Aug 09, 2017 10:51 pm

I'm hesitant to drive at all during chemo weeks. I feel like my brain slows down a bit on that week and I don't react as fast. I've driven before but went very slow lol.

NHMike
Posts: 669
Joined: Fri Jul 21, 2017 3:43 am

Re: Guess a new side effect has shown up

Postby NHMike » Fri Aug 11, 2017 6:13 am

Soccermom2boys wrote:
NHMike wrote:Can you drive after taking the Oxaliplatin?


I drove home after all of my infusions of FOLFOX so it is definitely possible if nothing else is administered that would impact your driving ability. As with all things chemo, it will depend on how your body takes to the oxaliplatin, but it is definitely possible.


Thanks. I can arrange rides but I'd rather just drive myself.
6/23/17: ER rectal bleeding; Colonoscopy+Biopsy
7/13: Stage 3B rectal cancer. T3, N1b, M0. 5.2 x 4.5 x 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6 mm, 5 x 5 mm
7/31-9/8: Xeloda 3,400 mg/day+radiation
7/5: CEA 2.7; 8/16: 1.9; 9/8: 1.8. 11/30: 0.6
MSS, KRAS G12D
10/6: 2.7 x 2.2 x 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 mm (-75%), 5 x 3 mm (-40%). 5.1 CM from AV
10/30: Surgery: LAR, Temp Ileostomy
Path report: Tumor regression grade: 0 (complete response).

User avatar
LeonW
Posts: 318
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: Guess a new side effect has shown up

Postby LeonW » Fri Aug 11, 2017 7:43 am

Tdubz wrote:I'm hesitant to drive at all during chemo weeks. I feel like my brain slows down a bit on that week and I don't react as fast. I've driven before but went very slow lol.

Same here, except that I NEVER drove during chemo. Worst were the infusion days and 3-4 days after. Besides dizziness and some twitching, eyesight became affected as rounds progressed. Worst were the latter cycles when everything moving came thru as quick series of stills - as a rapid succession of pictures rather than a smooth flowing movie. I didn't pick up driving until a few months after the liver job - some 9 months after end of chemo.

Today, brain is still slow and anything that requires thinking, causes fatigue. I've learned that it takes one or two days to recover from most things that make life interesting. Driving is also OK, but same effect: any significant trip (2+hrs) wears me out. The good thing is that it's so predictable - no surprises, and it doesn't feel as a failure no more. Just part of the new life that was given, embraced and enjoyed. :D

Best wishes, Leon
Last edited by LeonW on Fri Aug 11, 2017 7:48 am, edited 1 time in total.
Dec 2012 - Dx CC; MM 65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen (IVa T3N1bM1a) 2/26 nodes, MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (liver failure, bad delirium, emboli, encephalopathy) pCR; cancer gone
2014/15 - recovery; benign polyp
Apr 2016 - new house/town/life
clean CTs and 1.3/1.4 CEAs: 4x2014, 4x2015/16, 2x2017
next: June 2018 w scopy - 5yr getting close

tater
Posts: 31
Joined: Wed Jul 19, 2017 5:53 pm

Re: Guess a new side effect has shown up

Postby tater » Fri Aug 11, 2017 7:45 am

My wife is on FolFOX right now. It makes her eyes twitch really bad for the first day. She is also having twitches in her fingers and her thumb and pointer finger get locked sometimes. Its weird.
DH to 38 wife w/kids
Stage 3C DX 3/3/17 CEA 29
5-fu and radiation ended May 17, 17
Stage 4 Liver mets 3(5mm-6mm) and iliac node July 17, 17
FOLFOX + Avistan July 18 CEA 2.3

Volfan
Posts: 73
Joined: Sat Mar 11, 2017 7:58 am

Re: Guess a new side effect has shown up

Postby Volfan » Fri Aug 11, 2017 7:50 am

juliej wrote:
Volfan wrote:Yesterday I got my 9th treatment. After I was done I stood up and almost fell over due to my calf muscles being so tight. After a little walking they improved some. Then when I got in bed and tried to sleep (good luck with that with the steroids) I could feel my legs muscles twitching all night. Now this morning right calf muscle is tight if I sit for awhile.
Is this something y'all have experienced?

I had the same thing! Calf muscles so tight I staggered around like Frankenstein! :shock: It's definitely the oxaliplatin that's causing it. Not a lot you can do, but try increasing your hydration, especially consuming a drink with electrolytes - not just plain water. Gatorade or any sports drink with electrolytes should work. I used Nuun tablets and dissolved one in a bottle of water.

Also, I can empathize with the steroid buzz! They kept me up all night too until the onc nurse suggested taking an Ativan before bedtime. That seemed to work pretty well. I could finally get some sleep and it also helped with morning nausea so two for one! :D See if you can get a prescription from your onc.

Hope this helps!
Juliej


This is exactly what I have with my calf muscles. I will definitely try something besides just water to see if it helps.
Stage IV Rectal cancer with liver mets
Oxaliplatin, avastin, 5fu
48 yr dude


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Bing [Bot], heiders33, MaryannW, Yahoo [Bot] and 34 guests