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Oxaliplatin?!

ccfighter
Posts: 429
Joined: Jan 2012

Hi,

I am from the gyn boards.  I have metastatic and recurrent cervical cancer.  I had debulking in December to remove a lung nodule and a tumor on the abdominal wall that had attached to a small bowel loop which was also resected.  Started chemo again in Feb. with carbo/gemzar.  Counts tanked, Platlets to 30 and WBC 1.  So we decided to switch to cisplatin and then I had an allergic reaction with hives and everything.  Tried it again with premeds and had another reaction so that is out.  I had a molecular profile done of my recurrent tumor and it indicates that it should be platinum sensitive with little benefit of any other chemo options.  So, in order to try to get some platinum into my body, tomorrow we will be trying oxaliplatin.  I will get this every two weeks with gemzar.

My question is what should I expect from this Oxaliplatin.  I have read through some old posts here and the chemo care website.  What exactly is this sensitivity to cold like?  How long does it last.  Is this side effect dose dependant?  Does it worsen?

Nausea?  Is this well controlled with Zofran and Compazine or do you need heavier Emend type meds?  I am very familiar with Platinum chemo, I did 6 Carboplatin and 5 Cisplatin at my original diagnosis so if anybody can make a comparison to those chemos that would be helpful.

What is the infusion like?  Any immediate reactions?

Has anyone here every had an allergic reaction to another platinum drug before?  If so, did you try another platinum and you were ok or did you continue to have reactions to platinum chemos?

Having allergic reactions to chemo is scary and I am really nervous about trying another one.  I will premed with prednisone and they may give me benadryl as a precaution also.  Just want to have this be over with.  The weather is turning beautiful and all this chemo is cramping my style.  And, I am not quite prepared to die of an anaphylactic reaction when I have no evidence of disease based on March CT scan.  Thanks.

 

thxmiker's picture
thxmiker
Posts: 1283
Joined: Oct 2010

Welcome to the Cololn forum!

 

The Oxy will make you drowsy, diarrhea, nauseated, cold, nerve damage, and thin hair.  It also made my fingernails brittle, and my skin dry.

The symptoms will come and get worse with each treatment.   My wife got Ove Gloves for me.  They allowed me to get thing in and out of the Fridge, and Oven. Once cold, I would have a difficult time to get warm again. Don't let yourself get cold.  Cold drinks are a no no also.  They will burn your throat. (I joke you not.)  All drinks will be warm or room tempature. I would get a glass of juice and let it sit for an hour to drink.  Now I just juice. Then the juice is at room temp.

For Nausea I ate ginger, ginger tea, ginger cookies. The darrhea, Lomotil and Zofran helped me a lot.   Bananas for the depleted times.  Drowsy, take a nap. lol  Oatmeal helps a lot for the diarrhea also.  It slows the bowel and keeps one full.

 

I added Juicing for the nutrition.  It tastes good and really helps when one feels depleted. It also add micro and macro nutrients that w can not get else where. (I don't care what the pill says.)   Switch to real food and throw all the boxes and frozen foods away.  The chemicals are just adding complitcations to the chemo. (Look up Food Deset, 100 days of real food, Take part are all goood resources of good nutrition.)

Best Always,  mike

 

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

I did 12 treatments of FOLFOX (5FU + oxaliplatin).  I had no nausea problems with that regimen.  The cold sensitivity is mainly in your hands/feet and oral (when drinking cold liquids).  I would describe the oral sensation as trying to swallow glass when drinking cold liquids.  I also had some calf cramping with oxy, but magnesium and calcium took care of that (started taking the pills 1-2 days prior to infusion and continued for 2-4 daus after).  The biggest problem is that you will eventually start to get some peripheral neuropathy.  Mine started at about treatment 7 and continually got worse until I stopped after 12 tx.  I've been off oxy for 3 months or so and the neuropathy is no better, but no worse either.  My isues are numb feet and numbness in the very tips of my fingers.  From what I have heard, oxaliplatin has the fewest side effects of the platinum drugs (cisplatin and carboplatin being the other two).  Best of luck with you treatment, but I wouldn't worry too much about oxy.  I had no immediate post-infusion problems ever, but some people do get allergic to oxy.  I saw one lady at the clinic have a reaction to it, which usually occurs after 6-7 tx.  She said her tongue felt strange, and she started to break out in hives, so they stopped the infusion immediately and got her on benadryl and some steroids, and she was fine but they said no more oxy for her.

Tedd

Trubrit's picture
Trubrit
Posts: 2213
Joined: Jan 2013

I'm on Oxaliplatin, six session with three to go (YAY!) My answers are just my experience, others will have different ones.

What exactly is this sensitivity to cold like?  How long does it last.  Is this side effect dose dependant?  Does it worsen?

 Cold stuff in my mouth, is like little electric shocks going off on my teeth. And the throat constircts if anything cold, even room temperature at the beginning, goes down.  And yes, for me it has gotten worse the more sessions I have.  Also, when I am totally drained of energy, I get so very, very cold. I bought an electric lap blanket, and that really helps.

Nausea?  Is this well controlled with Zofran and Compazine or do you need heavier Emend type meds? 

The only time I experienced nausea was when I missed one of my Zofran doese. 

What is the infusion like?  Any immediate reactions?

Infusion day is a real doddle for me. The only reaction I get is a tightening of the throat. I enojy when I can talk to the other chemo patients, it helps pass the time a little. 
 
Good luck with this new regime of medications. Be sure to come tell us how everything is going. 
jen2012
Posts: 1492
Joined: Aug 2012

My husband had the cold sensitivity from the second treatment on. Lasted for about a week after each treatment. I had to warm his drinking water on the stove. The neuropathy is his biggest issue. Feet and legs are still numb...been probably 2 months since the last oxi dose. He also has a hard time picking up small items..buttoning his shirts..etc.

Good luck!

abrub's picture
abrub
Posts: 1591
Joined: Mar 2010

"First Bite Pain" - an electric shot of pain through your jaw on the first bite of food, while not common, does occur (I had that).  It subsides by the second bite, and you can eat.  Side effects are from the moment of infusion, and last longer each time.  I had loss of all fine motor skills if I was in an evironment cooler than 70 degrees.  I couldn't fold a piece of paper in half to stick in my purse.  I couldn't button buttons, or latch my own seatbelt.

Yes, do be aware of any allergic reactions - people do have allergies to oxaliplatin.  Make sure that they watch you. 

I had extremely severe side effects - most people don't have them like I did, tho I'm certainly not alone in having bad side effects.  It's a very tough drug.  Can't compare to the other platinums, as I never had them.

Alice

ccfighter
Posts: 429
Joined: Jan 2012

Thank you everybody.  All your replies help ease the fear a little but this cold sensitivity doesnt sit well with me.  Do most of you have an infusion every three weeks or weekly or every two weeks?  I dont really know how many cycles of this I will have to get through.  Somewhere between three and five I am guessing, but each cycle is 4 weeks long with two infusions.  Wont make it through the hot summer months without cold Ice Water.

I get Aloxi at infusuion and didnt need much else in the way of antinausea meds with the carboplatin but did with the Cisplatin.  Cisplatin causes the peripheral neuropathy as well, hearing loss, kidney damage-none of which I experienced.  The nausea was worse and the taste changes made food and drinks unappetizing, but otherwise I handled it pretty well.  Had the Cisplatin every week for 5 weeks with radiation.  Carboplatin was given every three weeks.  Did three of those with Taxol when I was diagnosed.  Did two more of Carboplatin after I finished radiation. 

I feel like a toxic cesspool.

Thanks

Trubrit's picture
Trubrit
Posts: 2213
Joined: Jan 2013

 Do most of you have an infusion every three weeks or weekly or every two weeks?  

I have miy infusions every two weeks. Fingers crossed for this coming week, as my platelettes were on the cusp last time. 

I do relate to two of our other posters. The neuropathy in my fingers is interesting. I forgot to put gloves on when I went into the fridge the other day, and I dropped a big carton of yogurt. I get frustrated when I have to prepare vegetables with gloves on, and stil the cold makes it through them. 

I'm so looking forward to my treatments to be all over and get back to a new normal.

abrub's picture
abrub
Posts: 1591
Joined: Mar 2010

For those of us on Folfox, we had infusions every 2 weeks, tying in with the IV 5FU every other week.  For those on Xelox (oral 5 FU), infusions are every 3 weeks to tie in with the 3 week xeloda cycle.  I'm afraid that the sensitivity to cold is one of the pretty universal side effects, but you learn to live with it.  You'll probably be able to drink ice water a few days to a week after your infusion.  Believe me, you won't want it while you are sensitive!

Ah, yes, feeling like a toxic cesspool!  Those of us on the IV 5FU have 46 hour-long infusions, where we wear the pump at home, and have a chemo kit, including hazmat equipment in case there is any chemo spill/leakage.  And that's what they are putting into us!  We hear you!

Alice

herdizziness's picture
herdizziness
Posts: 3647
Joined: Apr 2010

You won't have problems with the cold for the whole time, after infusion it lasts between 4 to 7 days on average, then you can drink and love all the ice water you want, until then I had apple cider, teas, hot chocolate, etc., it isn't fun but is doable.

also sometimes your hands and legs will go spastic on you, it is quite strange but goes asome sometimes in minutes, scary first time if you aren't aware of it.

i had the Oxy every three weeks. Also cal/mag infusion helps lessen the cold affect so see if your onc has it prescribed and ask him for it if he doesn't along with your Oxy infusion.  Right away after the Oxy is midway in your system the cold reaction starts, you'll notice if you have to go to the bathroom and touch cold handles and when you wash your hands, at least it did for me.

Hopeing for the best,

Winter Marie

Maxiecat's picture
Maxiecat
Posts: 544
Joined: Jul 2012

I did 12 tx with FOLfox ...I tolerated the oxaliplatin fairly well...just got used to not reaching into the freezer, not drinking things tat were cold, and staying indoors during the wintertime.  I have had a lot of neuropathy ..it started at treatment 7 or 8 and got worse after finishing chemo.   I cannot feel my hands and feet most of the time.  I have a lot of shooting pain in my hands and feet now...but after 3 months out from chemo it is finally starting to get a little better.   I am getting used to it.  I was taking gabapentin for the neuropathy but I wound up with liver issues from it...so now I only not taking anything for the neuropathy.

alex

ccfighter
Posts: 429
Joined: Jan 2012

Thank you everyone.  I will let you know how it goes.  Fingers crossed.

Coloncancerblows's picture
Coloncancerblows
Posts: 296
Joined: Feb 2013

I get my treatments every two weeks.  The cold sensation with drinking has never gone away with me.  I have to drink everything at room temperature.  After day 11 of chemo, we went out to eat and I asked for room temp water.  Well the glass was cold and I couldn't pick it up so I still have that in the fingers.  Keep a pair of gloves by the refrigerator.  Also, I don't get the diaherria; I get the constipation.  I take two SEnacot at night and that seems to help.  Also, make sure you rinse with warm salt water or baking soda so you don't get mouth sores.  I do that at least two a day for at least a week after getting the chemo.  I've had 5 treatments and have 7 more to go.  My feet are freezing all day long and when I'm at work, I have my heater on them and they're still freezing!  Hate that part.  The thing I"m most looking forward to after my chemo treatments is drinking a coke iccee!  Best of luck to you.

smokeyjoe
Posts: 1428
Joined: Feb 2011

I just started on Folfox which includes the oxy. yesterday.   The cold sensitivity hit me later in the day,  when I touched my cold house keys to put in the lock.   Didn't really notice it the rest of the evening.   But,  on the keyboard this morning could feel tingling .... then I went to empty my dishwasher and the cold really hit me handling the silverwear and cold plates.    Ran some warm water over my hands at which point my left arm went all gimpy on me for about a minute then it went away,  it was strange crampy loss of function in my left arm ... but it dissipated after a bit.   Westie suggested the l-glutamine, cal mag. helped her  so I'm trying that.     

ccfighter
Posts: 429
Joined: Jan 2012

Well, I survived my first oxaliplatin infusion.  No allergic reaction.  Yea!  I did start to experience the weird hand problem by the time I got home.  Started unloading the dishwasher and my fingers got tingly and started to feel like pins and needles stabbing them.  Very strange and awful.  A little nausea today but nothing terrible.  Thank you all for your help and input.  Makes this less scary.  Hugs.

jen2012
Posts: 1492
Joined: Aug 2012

Good excuse to not do dishes!  Glad it went well though.

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