Side effects calf cramping and painfully tight

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SuseB
Posts: 33
Joined: Thu Feb 04, 2016 11:34 am
Facebook Username: Susan Bomkamp Burke

Side effects calf cramping and painfully tight

Postby SuseB » Sun Mar 20, 2016 10:43 am

Hello everyone...I just finished my 3rd round of FOLFOX, pump removed yesterday, and have been having severe tightening of my calves, pretty painful, hard to walk. Also some claw like spasming of the hands. any stretching, etc trying to relieve it makes it worse. I tried an Epsom salt bath and the whirlpool tub last night; helped a little bit, but right back this AM. Anyone ever had this happen? It happened last round to a lesser degree and when I mentioned it they said they hadn't encountered that before. Thanks for listening!
61 y/o female
Dx May 2015 Stage 1T2 rectal cancer
Surgery 06/08/2015 clean margins 16 lymph nodes all clean
Post surgery bowel issues and sacro pain
6 mon f/u w/onc 12/23/15 ordered cat scan for bowel pain issues-
liver lesions
PET Scan 01/14/16 mets liver & pelvis
03/31/16 done 4 rnds FOLFOX w/ Avastin
Scans 04/15/16 all shrunk!
2 rnds FOLFIRI done 05/12/16
Liver resection 06/08/16
CEA 06/08/15- .9 (post Stage 1 surgery); 12/28/15 (post pet scan) 3.9
02/03/16 (pre-treatment) 13.0 ; 03/31/16 - 2.0

midlifemom
Posts: 1358
Joined: Wed Jan 15, 2014 10:58 am
Location: NJ

Re: Side effects calf cramping and painfully tight

Postby midlifemom » Sun Mar 20, 2016 10:50 am

Suse,
You are not alone in this.
When on folfox I had muscular issues as well.
My hands turned into claws and my legs felt dead.
My onc said neuropathy is more common with oxaliplatin, but muscular issues can happen too. My oxali dose was reduced and problems went away.
Good luck.
Stage 3 cc - dx Jan '14 age 53, cea 2.9
t2n2m0, KRAS mutant, MSS
Folfox Feb - Aug '14
Nov '14 cea 27.7 -2 liver masses
Dec '14 left lobectomy and HAI
Jan '15 FUDR and FOLFIRI
Aug '15 fudr done, liver clear, add avastin for lungs. Cea 4.3
Feb '16 CEA rising
May '16 2 wk break then drop Iri for 6 weeks.
Jul '16 cancer grew, constricted main bile duct. Stent inserted. On break till jaundice clears. CEA climbing. Doing reduced Folfox. Allergic to Oxali.
Sep'16 chemo failed. Trial or hospice?

SuseB
Posts: 33
Joined: Thu Feb 04, 2016 11:34 am
Facebook Username: Susan Bomkamp Burke

Re: Side effects calf cramping and painfully tight

Postby SuseB » Sun Mar 20, 2016 10:56 am

Well it's nice not to be alone, but wouldn't wish it on anyone. I seem to have both the neuropathy and muscular issues. I will discuss lowering the dose with him. Thanks for the reply. Best to you and yours.
61 y/o female
Dx May 2015 Stage 1T2 rectal cancer
Surgery 06/08/2015 clean margins 16 lymph nodes all clean
Post surgery bowel issues and sacro pain
6 mon f/u w/onc 12/23/15 ordered cat scan for bowel pain issues-
liver lesions
PET Scan 01/14/16 mets liver & pelvis
03/31/16 done 4 rnds FOLFOX w/ Avastin
Scans 04/15/16 all shrunk!
2 rnds FOLFIRI done 05/12/16
Liver resection 06/08/16
CEA 06/08/15- .9 (post Stage 1 surgery); 12/28/15 (post pet scan) 3.9
02/03/16 (pre-treatment) 13.0 ; 03/31/16 - 2.0

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WriterGirl1969
Posts: 489
Joined: Sat Mar 05, 2016 3:48 pm
Location: Central NY

Re: Side effects calf cramping and painfully tight

Postby WriterGirl1969 » Sun Mar 20, 2016 2:57 pm

For what it's worth, I have peripheral neuropathy in both feel from a botched epidural, and I often get sever foot and leg cramping along with it. In my experience, the two do seem to be related.
--Tracy
DX 3/4/2016 Colon Cancer; age 46 Mom of 4-yr-old
Stage IIIB: T3N1M0
3/31/16 Left Hemi
4 to 10/2016: Xeloda Monotherapy
CEA: 10/16 0.56, 1/17 0.54
3/6/17 CT clear; 4/17/18 CT clear;
NED 2 years
“If I can help somebody as I walk along, then my living shall not be in vain.”

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CRguy
Posts: 9536
Joined: Sun Feb 10, 2008 6:00 pm

Re: Side effects calf cramping and painfully tight

Postby CRguy » Sun Mar 20, 2016 5:35 pm

SuseB wrote:Anyone ever had this happen?
It happened last round to a lesser degree and when I mentioned it they said they hadn't encountered that before.

Don't know WHO you mentioned it to ... BUTT :twisted: :twisted: :twisted:
neuromuscular problems are pretty much THE hallmark of oxaliplatin side effects !!!!!
and most patients get a dose reduction along the way at some point or possibly a slower infusion rate.

You better tell them to read up on their product inserts a little more carefully before they dismiss you again :oops:
OR at least have them read this monograph before they talk to you the next time !!!!
http://www.oncology.tv/SymptomManagemen ... icity.aspx

which specifically states : " Muscle spasms, contractions, and fasciculations may occur " .... DUH !!!!!

Seriously : muscle cramping, "first bite" pain, PLD (pharyngolaryngeal dysesthesia) are ALL very well known and maybe those folks need a little ColonTalk persuasion to take better care of one of OUR OWN ...... :twisted:

Rant over .. I'm feeling much better now :mrgreen:

SO neuropathy = YES with oxaliplatin. I still have mild sensory issues, numbness and tingling, NO pain, now 6 years out from last treatment
( BUTT I pushed for the Dirty Dozen cycles with 1 dose reduction )

Muscle cramps / first bite etc. ..... minimal when I was on oxi BUTT the cold sensitivity was my worst complaint during Tx.

FYI : back in the day (2009-2010 for me) I was also getting calcium / magnesium infusions prior to oxi. they thought it would help ameliorate or prevent neuropathy. That pretty much did NOT happen for me... BUTT with Ca/Mg in my system, both of which are very important for neuromuscular health and function, I had virtually NO issues with muscle cramps or spasms ..... SO
My point = maybe there is an electrolyte issue which needs addressing while you are on FOLFOX ??????

Ask your Docs or Onco nutritionist ? if there is a supplement which is OK while on oxi and can help with the Ca/Mg levels for muscle cramping NOT necessarily the whole neuropathy thing then they will go off on the "not proven lecture"
( sodium and potassium are also important, so things need to be considered from the bigger picture )

OH and if they still say they " never encountered this before "
......... Maybe givem' MY name here and I would be happy to "educate them" :twisted:

Cheers for getting things worked out to YOUR satisfaction
PM me if you need more ammo for this battle

CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

justin case
Posts: 4207
Joined: Sun Sep 04, 2011 8:26 am
Location: Katy, Texas

Re: Side effects calf cramping and painfully tight

Postby justin case » Sun Mar 20, 2016 6:19 pm

I also got Cal Mag with my infusions. Muscle cramps were rare, but I finally got rid of them, when Iron was added to my infusions.
Michael
7/11 diagnosed Stage 2 colon and rectal cancer
chemo/rad
lar/temp ilio
Reversal & port removal
21 round of chemo Folfox 9tx, 5fu 12 tx
Last treatment July 2012

KElizabeth
Posts: 400
Joined: Sat Oct 31, 2015 12:41 pm
Facebook Username: KElizabeth
Location: Omaha

Re: Side effects calf cramping and painfully tight

Postby KElizabeth » Sun Mar 20, 2016 6:58 pm

CR Guy, reading your response to this thread made my day. I love your enthusiasm and how diligently you care about the colon club members.

I too had muscle spasms while on FOLFOX, and was dismissed. ..Lucky I had a sensitivity reaction to the Oxaliplatin and stopped before too much damage was done.
Female age 39- ,2 teens.
Colon Cancer - DX March 2013
Age 34 at DX - Stage III B
Resection surgery -May 2013
FOLFOX - June, 2013 to Sept, 2013
5FU plus leukavorin Sept, 2013 to Dec, 2013
METs liver and lungs discovered Sept, 2015
KRAS - MSS
FOLFIRI plus Avastin - Sept, 2015 - July 2017
Durvalumab and Cediranib Sept 2017 Dec 17
FOLFOX with desensitization protocol - current

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DBF
Posts: 294
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Location: New York

Re: Side effects calf cramping and painfully tight

Postby DBF » Sun Mar 20, 2016 8:03 pm

Ugh, sorry you're experiencing this.

I had muscle cramps- especially in my calves- on folfox. I remember it being awful walking down stairs. My hands camped up too. The muscle cramping was the main reason I turned to marijuana. It helped me a lot.
6/13 Dx @ 29 Wks pregnant, 42 yo
Adenocarcinoma, mucinous features
7/13 C-sec/col resec/part. hysterectomy
8/13 Pulm embolism
8/13 Liv met
9/13 Liv resect
FOLFOX
CEA UP
ADAPT: Xeloda/Celebrex
2/14 oopherectomy
10/15 obstruction surg
10/17 Scar tissue removal/vsg surg
NED :D
Mom to 3 boys: 19, 8 & 4

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CRguy
Posts: 9536
Joined: Sun Feb 10, 2008 6:00 pm

Re: Side effects calf cramping and painfully tight

Postby CRguy » Sun Mar 20, 2016 9:05 pm

KElizabeth wrote:CR Guy, reading your response to this thread made my day. I love your enthusiasm and how diligently you care about the colon club members.
I too had muscle spasms while on FOLFOX, and was dismissed. ..Lucky I had a sensitivity reaction to the Oxaliplatin and stopped before too much damage was done.
Thanx for your posi vibes my friend !!!! :mrgreen:
Makes MY day !

truthfully it is SAD ... effing SAD that WE have to do our own homework and advocacy to get the "docs" to basically figure out the very basic information of the treatments they are giving us
...... DUH ...... :twisted:

I am a vet for 35 years and CRC survivor for about 10
I have attitude and TOTALLY OK to be " in yo' face bee-atch " regardless of what titles and degrees you hold
OR how big you think your ego might be ..... Doc !

BUTT ?????
WHAT about patients who have no medical experience and no backups or advocates ?????????

Bullshit IMO
if they get the short straw because some "professional" doesn't care enough to read the effing manual :twisted:
BULL
SHIT

there I feel better now :oops:

Let's always BE each others best resource
and make sure we ALWAYS advocate for ourselves

Cheers and Harmony on EVERY Journey
CRguy
Caregiver x 3
Stage IV A rectal cancer/lung met
11 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Mastan
Posts: 433
Joined: Sat Feb 19, 2011 11:12 am
Location: Albuquerque, NM

Re: Side effects calf cramping and painfully tight

Postby Mastan » Mon Mar 21, 2016 10:11 am

I did 8 cycles of FOLFOX 5 years ago after the resection. I stopped at 8 because of severe cramping in my back that affected my breathing. The cramps always happened about 36 hrs post infusion. Well the Onc did not put 2 and 2 together at the time. Since then I have had a recurrence and I am back on it 5 yrs later. The difference this time is the realization that dexamethasone is needed to supress those symptoms. I don't think patients realize how much Dex they get with the infusion. For me it is 20 mg. That is a hell of a lot and it wears off in a day or so resulting in a rough transition in your hormone level. I now take 4 mg of Dex beginning 2 days post infusion to help prevent spasms. So far so good. I then taper the Dex down to 1 mg/day until the next infusion. I should note that as the dose gets reduced I begin the have some incidents of abdominal muscle spasms but they are tolerable. Of course nothing in the shit storm is free and prolonged use of Dex can cause one to become diabetic. Talk to your Dr. and be sure he/she is paying attention!

Mark
Dx 6/2010 rectal CA

Cathie
Posts: 78
Joined: Fri Mar 28, 2014 12:09 pm

Re: Side effects calf cramping and painfully tight

Postby Cathie » Mon Mar 21, 2016 11:03 am

It's been since '02 started chemo, finished in summer of '03. I had leg cramps then and occasionally now. Then and now I drink V8 juice and problem solved. I think I got that info from this forum back in the day. Now I drink it only a few times a week, to keep the cramps at bay.

Cathie
Dx'd colo rectal cancer Oct 2002
radiation chemo November December 2002
Surgery Mar 2003 which was a temp ileo
Summer of 2003 more chemo
Ileo reversed Mar 2004
Cancer free since then

SuseB
Posts: 33
Joined: Thu Feb 04, 2016 11:34 am
Facebook Username: Susan Bomkamp Burke

Re: Side effects calf cramping and painfully tight

Postby SuseB » Mon Mar 21, 2016 9:28 pm

Ok for some reason I can't figure out how to reply to an individual post here.... So CRguy thanks for that! I really appreciate your offer of assistance. And eveyone else for the replies and support.
They did add a cal/mag drip after the first round and going forward because my jaw pain was so intense as was the tingling. In retrospect, maybe they thought that would address the cramps etc which weren't nearly as intense then as in this round, so they were dismissive of that? They were definitely surprised about the intensity of the jaw pain. I'm going to give them a call tomorrow to alert them that I want have this on the table when I show up for my pre chemo appointment. I also take a magnesium supplement, B6 & B12, 10,000 units of D, alpha lipoic acid. I'm all good with the whole marijuana thing; just wish I was in a medical state, as random smoking doesn't seem to do much for me. Lol. Much to my disappointment. :D well I take that back- it's great for that initial nausea and appetite, so I've been keeping it on board periodically for that.
Having said that, I really do like my team. My onc is kinda of roll his eyes at the supplements but has said he's fine with anything that causes no harm, including the pot. But I will be insistent about this. And look into a nutritionist for more advise on supplements that may help. I'm terrified about losing function in my hands especially because I work with my hands and doing my stained glass keeps me sane.
61 y/o female
Dx May 2015 Stage 1T2 rectal cancer
Surgery 06/08/2015 clean margins 16 lymph nodes all clean
Post surgery bowel issues and sacro pain
6 mon f/u w/onc 12/23/15 ordered cat scan for bowel pain issues-
liver lesions
PET Scan 01/14/16 mets liver & pelvis
03/31/16 done 4 rnds FOLFOX w/ Avastin
Scans 04/15/16 all shrunk!
2 rnds FOLFIRI done 05/12/16
Liver resection 06/08/16
CEA 06/08/15- .9 (post Stage 1 surgery); 12/28/15 (post pet scan) 3.9
02/03/16 (pre-treatment) 13.0 ; 03/31/16 - 2.0

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: Side effects calf cramping and painfully tight

Postby Nik Colon » Mon Mar 21, 2016 9:29 pm

SuseB wrote:Ok for some reason I can't figure out how to reply to an individual post here.... So CRguy thanks for that! I really appreciate your offer of assistance. And eveyone else for the replies and support.
They did add a cal/mag drip after the first round and going forward because my jaw pain was so intense as was the tingling. In retrospect, maybe they thought that would address the cramps etc which weren't nearly as intense then as in this round, so they were dismissive of that? They were definitely surprised about the intensity of the jaw pain. I'm going to give them a call tomorrow to alert them that I want have this on the table when I show up for my pre chemo appointment. I also take a magnesium supplement, B6 & B12, 10,000 units of D, alpha lipoic acid. I'm all good with the whole marijuana thing; just wish I was in a medical state, as random smoking doesn't seem to do much for me. Lol. Much to my disappointment. :D well I take that back- it's great for that initial nausea and appetite, so I've been keeping it on board periodically for that.
Having said that, I really do like my team. My onc is kinda of roll his eyes at the supplements but has said he's fine with anything that causes no harm, including the pot. But I will be insistent about this. And look into a nutritionist for more advise on supplements that may help. I'm terrified about losing function in my hands especially because I work with my hands and doing my stained glass keeps me sane.

To reply, hit the " in the upper right of the post :)
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc

SuseB
Posts: 33
Joined: Thu Feb 04, 2016 11:34 am
Facebook Username: Susan Bomkamp Burke

Re: Side effects calf cramping and painfully tight

Postby SuseB » Mon Mar 21, 2016 9:34 pm

Nik Colon wrote:
SuseB wrote:Ok for some reason I can't figure out how to reply to an individual post here.... So CRguy thanks for that! I really appreciate your offer of assistance. And eveyone else for the replies and support.
They did add a cal/mag drip after the first round and going forward because my jaw pain was so intense as was the tingling. In retrospect, maybe they thought that would address the cramps etc which weren't nearly as intense then as in this round, so they were dismissive of that? They were definitely surprised about the intensity of the jaw pain. I'm going to give them a call tomorrow to alert them that I want have this on the table when I show up for my pre chemo appointment. I also take a magnesium supplement, B6 & B12, 10,000 units of D, alpha lipoic acid. I'm all good with the whole marijuana thing; just wish I was in a medical state, as random smoking doesn't seem to do much for me. Lol. Much to my disappointment. :D well I take that back- it's great for that initial nausea and appetite, so I've been keeping it on board periodically for that.
Having said that, I really do like my team. My onc is kinda of roll his eyes at the supplements but has said he's fine with anything that causes no harm, including the pot. But I will be insistent about this. And look into a nutritionist for more advise on supplements that may help. I'm terrified about losing function in my hands especially because I work with my hands and doing my stained glass keeps me sane.

To reply, hit the " in the upper right of the post :)

Lol I'm pretty sure you told me that the first time I posted. I keep forgetting... And I have a new tablet that I'm not used to. Sticking to that excuse. Lol. Thanks.
61 y/o female
Dx May 2015 Stage 1T2 rectal cancer
Surgery 06/08/2015 clean margins 16 lymph nodes all clean
Post surgery bowel issues and sacro pain
6 mon f/u w/onc 12/23/15 ordered cat scan for bowel pain issues-
liver lesions
PET Scan 01/14/16 mets liver & pelvis
03/31/16 done 4 rnds FOLFOX w/ Avastin
Scans 04/15/16 all shrunk!
2 rnds FOLFIRI done 05/12/16
Liver resection 06/08/16
CEA 06/08/15- .9 (post Stage 1 surgery); 12/28/15 (post pet scan) 3.9
02/03/16 (pre-treatment) 13.0 ; 03/31/16 - 2.0

User avatar
Nik Colon
Posts: 5210
Joined: Thu Jan 08, 2015 3:35 pm
Location: MN

Re: Side effects calf cramping and painfully tight

Postby Nik Colon » Mon Mar 21, 2016 9:36 pm

SuseB wrote:
Nik Colon wrote:
SuseB wrote:Ok for some reason I can't figure out how to reply to an individual post here.... So CRguy thanks for that! I really appreciate your offer of assistance. And eveyone else for the replies and support.
They did add a cal/mag drip after the first round and going forward because my jaw pain was so intense as was the tingling. In retrospect, maybe they thought that would address the cramps etc which weren't nearly as intense then as in this round, so they were dismissive of that? They were definitely surprised about the intensity of the jaw pain. I'm going to give them a call tomorrow to alert them that I want have this on the table when I show up for my pre chemo appointment. I also take a magnesium supplement, B6 & B12, 10,000 units of D, alpha lipoic acid. I'm all good with the whole marijuana thing; just wish I was in a medical state, as random smoking doesn't seem to do much for me. Lol. Much to my disappointment. :D well I take that back- it's great for that initial nausea and appetite, so I've been keeping it on board periodically for that.
Having said that, I really do like my team. My onc is kinda of roll his eyes at the supplements but has said he's fine with anything that causes no harm, including the pot. But I will be insistent about this. And look into a nutritionist for more advise on supplements that may help. I'm terrified about losing function in my hands especially because I work with my hands and doing my stained glass keeps me sane.

To reply, hit the " in the upper right of the post :)

Lol I'm pretty sure you told me that the first time I posted. I keep forgetting... And I have a new tablet that I'm not used to. Sticking to that excuse. Lol. Thanks.

No problem :)
KRAS-mut G12V,MSS
Stage IVa Sig CC 2 lvr mets 1/12 Ln
(3, =<3 lng spots at dx til 5/16)
=T3N1aM1a 4cmX4mm (lng not included)
dx 12/2014 at age 39
CEA 1/15-4.9, 12/16-4.9 again
neoadj FOLFOX 1/15-3/15 (4tx, 3w/1wo oxi)
Col/Lvr surg 4/23/15 NED
adj FOLFIRI start 6/15-9/15 (8tx, 5w/3wo iri)
1 sml lvr spot/cyst
12/6/16 multi lung spots/mets?
No longer NED :(
My tx ongoing-start 1/20/15
Adding your SIGNATURE, etc


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