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oxy side effect..help!

carrieh
Posts: 116
Joined: May 2012

Hi guys,
Im on my second folfox treatment and my hands are all tingly of course which I expected...but im getting really bad cramps/muscle spasms in them as well. I don't know how to describe it really but (for instance) my thumb will go backwards and its hard to put it back down...my fingers will curve into a claw like shape and its hard to open my hand for a minute...is this normal? Stuff like this scares me..i feel like im poisoning myself forever..

If anyone could help i would really appreciate it. Im still pretty new to all of this and you guys seem to understand when there isn't anyone else who does. I just hope I can help someone someday instead of always being the one who needs it in here.

thank you,
carrie

Doc_Hawk's picture
Doc_Hawk
Posts: 685
Joined: Jan 2012

Hi Carrie,

When I was on oxy, I'd get very bad cramps usually after my hands and/or feet had been exposed to cold. It was pretty much as you've described and the pain was very intense. I found that soaking them in hot water when possible helped a lot. The cramps and cold insensitivity always passed a few days after the infusion ended.

Ray/Doc

herdizziness's picture
herdizziness
Posts: 3477
Joined: Apr 2010

When your hands or fingers gets cold, that's a side effect from it(the oxy), it's perfectly normal and common. You'll notice you get leg cramps too. It's just muscle spasms or cramps, and when your hands warm up, it goes away. Had that myself today, had the oxy on Friday, but usually don't have the problem this long as I usually get cal/mag infusions which helps with the tingling and spasms, but I had a late oncology appointment and didn't get the cal/mag infusions and so the side effects are lasting longer.
Warm your hands up and it will go away, and within a week of the oxy, it's gone until the next infusion, it's temporary, not permanent. Weird though the first few times it happens, so understand your being a bit frightened the first time it happens.
Don't recommend the hot water, because then after you are done putting your hands in the warm water, the fingers get cold the minute you leave the water and the tingling starts all over again, put your hands under your armpits or stomach and warm them up, but as soon as you get them warm it'll stop. Try and not get them cold dear, no refrigerator, wear gloves etc.
Winter Marie

carrieh
Posts: 116
Joined: May 2012

thanks..you guys are the best..up late like me i see..its hard to sleep sometimes when the mind is racing. I don't like this tingly stuff! Even doing laundry is tough,driving in the morning, typing..wow..and not eating or drinking anything cold is the pits. Im such a 2am cereal girl..and icecream (totally miss). I guess that will go away too though? I hope. cocoa is great but ten times a day not so much.
Carrie

herdizziness's picture
herdizziness
Posts: 3477
Joined: Apr 2010

I've been getting a bit tired of cocoa myself lately. We were in the 80's on Sun, Mon, Tues and I wanted ice water sooo bad. Then today it was sooo cold and the tingly came.
I've also been drinking hot apple cider, coffee, tea and just had some starbucks pumpkin spice, made with hot milk and add Starbucks mix and stir (pretty good). Just a couple more days and cool drinks can come. It takes me about 7 days before I can drink something cool, some people are luckier I hear and can drink sooner, but nonetheless, in a few days you can enjoy your icecream again. I have a Dairy Queen Banana split Blizzard the day before infusion as my little treat to myself. But yes, cold drinks and cold food is dearly missed for a few days, sure makes them taste all the better though when you can have them.
Oh, for driving try and drive with the palm and area between thumb and index finger for control while keeping the finger tips off of the steering wheel, believe me, it will help to use the fingertips as little as possible. Wear rubber gloves when doing the laundry, the cold from the wet clothes can be prevented a wee bit by doing that.
Winter Marie

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I sometimes get "stiff" hands after oxy, and I was getting bad calf cramps. My onc recommended magnesium and calcium, and they really help. He also recommended trying B complex vitamins and glutamic acid for the cold sensitivity, but I haven't tried those yet.

Tedd

herdizziness's picture
herdizziness
Posts: 3477
Joined: Apr 2010

gives cal/mag infusions with the chemo, it cuts a couple to three days off, but that's about it, I did without the cal/mag this last infusion and so am still suffering the cold effects now two days out longer then usual, but other then that, I can't tell much difference, but it's worth it for the extra days off of the tingling. Though some lucky people, it helps a lot!!!
Winter Marie

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

yes these are the normal side effects..
However it makes me angry that everyone thinks we should accept this.. Tell your doctor ASAP the extent to which you are getting these side effects. They may want to cut the dosage down.
B6 and vit e may help with these issue.. but please tell your DR...
there are other drugs too .. but I don't suggest them. I found there effects worse..

Good luck on your journey..

Labra
Posts: 6
Joined: Oct 2012

I agree totally. I had to have my dosages cut because of the side effects

Annabelle41415's picture
Annabelle41415
Posts: 4351
Joined: Feb 2009

Contact your doctor and tell them because everyone reacts different to this awful drug. They might be able to reduce the dose. You don't want to be left with permanent neuropathy like me, but mine is more manageable but still bothers me everyday. Please let them know and hope you are feeling better soon.

Kim

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I had my oxaliplatin cut by 25% the last couple of treatments. It really has helped with the neuropathy. My hands and feet do still get that feeling...have not had cramping hands since treatment #2. ... That happened in the grocery store...did not have gloves with me.... But I still feel the effects from the cold. They cut my oxaliplatin because the numbness went to my tongue...the tip of my tongue is constantly numb.

Alex

jen2012
Posts: 1245
Joined: Aug 2012

My husband had the calcium and magnesium added yesterday....his 5th treatment. He said he didn't notice much of a difference...and doesn't know if its worth adding an hour to an already painfully long day! Three hours before he got started yesterday..grrrrrrr..is that normal?

For the leg cramps....bananas and coconut water are helping him. Both high in potassium.

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Jen,

I don't think three hours is normal. I think it is unacceptable. People going through cancer treatment have enough problems. Should not have to deal with such a big delay. They need to get their act together. I schedule Steve's apps for morning to get in before they get backed up. Three hours is ridiculous.

Chelsea

lilacbrroller's picture
lilacbrroller
Posts: 320
Joined: Jun 2012

HI - I'm on my 8th hit of folfox (with avastin), looking forward to number 9 this week... I sometimes get the hand cramps so I bought some carpal tunnel braces (from Amazon - there is no cancer side effect that an Amazon product cannot alleviate, I say.). I get the cramps the first few days of treatment sometimes, and find that the little braces help, especially if I sleep with them. I'm able to do more because I move my hands as if they were old fashioned hooks, from the upper arm muscles and not my hands. Anyway, for what it's worth, try it and it might help you function better when you get the spasms.

I can eat ice cream and cold things too after about 7 days as well. For protein, I eat a cup of greek yogurt every morning, and I've just learned to like it room temperature! Even when I can eat it cold I don't because it tastes better to me warm. Isn't that weird? I still nuke water and lemonade and drink them hot.

One tip my onc nurses shared with me - drink tons of water, at least 2 liters a day - and this will help alleviate side effects. Also don't exercise and work up a sweat (causing dehydration) because that I"m told will also exacerbate side effects.

good luck with your treatment!
Karin

marbleotis's picture
marbleotis
Posts: 507
Joined: Mar 2012

Carrie,

I had calcium and mag added before and after each chemo starting at #6. I had 12 in total. The oxali was never reduced - which I was ok with. I had neuropathy in hands, feet, lips, teeth and tongue. I am almost 3 months post-chemo and the neuropathy is still in hands and feet. Some days it is a little better. I can feel a very slow improvement. I still cannot hold anything cold or metal.

dmj101's picture
dmj101
Posts: 527
Joined: Nov 2011

what I forgot to mention....
my neuropathy got worse after I was all done..
my hands are finally starting to feel managaable 1 year following the last treatment of oxy.. but my feet i fear will never come close..
take our advise tell your doctor and hopefully they will be sympathetic..

fatbob2010's picture
fatbob2010
Posts: 434
Joined: May 2012

Carrie,
I had a rather bad and dramatic reaction post surgery that put me back onto a walker. Could not dress self or perform many personal activities. My hands turned to claws and I could not even hold a pen. This lasted for a week or so. At the same time my Platelets dropped well below minimum acceptable levels. There was a concern expressed that this may become a permanent problem if they did not stop the Oxi. The Platelets have yet to come back up and they have also stopped the leucovorin. Very good advise to tell your medical team what is happening to you...

Good luck with your treatment.

Art

P.S. Last scan was NED and continue on Avastin and 5FU every other week.

schnauzerheads's picture
schnauzerheads
Posts: 51
Joined: Jan 2011

I went through the same thing... Another side effect I experienced, my eyes crossed briefly during and after treatment, that one really annoyed me. Hopefully you don't have to go through that one. Hang in there!!
I'm a drummer, so the "claw" was quite annoying when I would be playing jobs. I often wonder if that helped me to keep my fingers loose? Massage your hands, have someone do it for you. There are probably dietary things, bananas come to mind. It will pass. It completely freaked me out, so you are totally rational in your thinking. I would say drink plenty of water (cold sensitivity was sooooo hard for me living in TX, not being able to drink iced tea). I would flavor it, warm water never quite did it for me. I would urge you to speak with a qualified nutritionist, be very educated on things to eat and NOT to eat... I know there are supplements you'll want to avoid. Lots of good benefits in juicing also.
It seems like you're completely messing your body up, but I have to remind you to consider the alternative. Hit it hard, it's not something you want to go lightly with. This too shall pass. I didn't think I could get through it, but it's been two years since my last infusion, God willing I continue this way. Don't let the side effects beat you down. You'll look back on this and remember the hardships, but the good news is, you'll be looking back on this. I still have tingling fingers and my feet feel like cotton balls, so that's a little bit of a bummer... I've learned to live with it.
All the best to you, I look forward to seeing your post when you beat this

Kevin

joeowilson
Posts: 1
Joined: Nov 2012

I am on Oxilaplatin and Xeloda and Avastin. I have had 5 treatments so far. The Oxilaplatin causes muscle spasms in my arm. Usually my left. I have had problems with my eyesight, cognative thinking, balance, diahreaand bloated feelings. My doctor keeps lessening the amount of the Xeloda and Oxilaplatin with each treatment. When the effects get to bad i stop taking the Xeloda and it seems to stop the side effects. The Xeloda is supposed to make the Oxilaplatin work better. Hang in there and keep praying. God makes all things possible. Stage IV colon cancer which spread to 6 spots on my liver and one lymph node.After surgery I have 1 spot left on my liver and it has reduced over 2/3 in size. I am confident in my recovery because of the amount of prayer that is going up for me. I will keep you in my prayers. Oh this winter weather sucks for the numb and pain in my fingers, toes and face. My lips get numb and feel like they are just laying there. LOL Got to laugh. Keep a smile and keep busy. Oh did I mention that I have an illiostomy at the same time. A word of advise if you have one. Avoid sweet drinks. They really move things through a lot quicker. Oh and my voice sounds like it is being dragged through a gravel pit now.

Chelsea71
Posts: 1170
Joined: Sep 2012

Hi Joe,

Hate to sound nosey but your situation sounds an awful lot like my husbands. Where is the lymph node? Is it in your abdominal cavity? My husband has two retro-peritoneal lymph nodes. He has an ileostomy too. He is doing Folfiri with avastin. His voice sounds gravelly too.

By the way, welcome to the forum.

Chelsea

I'm very curious about the location of that lymph node.

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Joe

you posted your first post here on 11-14-2012... but we haven't heard from you since then.
there was a question posted, and I was checking for your reply.

hope you're doing okay.

thoughts and prayers going out to you.

Joe

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