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
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
OR at least have them read this monograph before they talk to you the next time !!!!
http://www.oncology.tv/SymptomManagemen ... icity.aspxwhich 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 ......
Rant over .. I'm feeling much better now
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"
Cheers for getting things worked out to YOUR satisfaction
PM me if you need more ammo for this battle
CRguy