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side effects of oxiplatin

robertwoitas
Posts: 17
Joined: Oct 2008

got my third transfusion of oxaliplatin on friday and am taking capecitabine pills for two weeks and had no side effects before. now my hands and feet tingle, my stomach is constantly upset and i have a bad smell and taste of iron in my mounth. Anyone know what can help get rid of these or atleast make it easier to deal with?
recal cancer stage III

rmcgraw
Posts: 15
Joined: Mar 2008

I found sour things such as lemon drops, dill pickles, etc helped with the metal taste that I had. As far as the tingling sensations, my finger tips stopped within weeks of finishing up the oxiliplatin; however, my feet are still about half numb (from toes back)and it will be 2 years in August since I finished up.

robertwoitas
Posts: 17
Joined: Oct 2008

not what i wanted to hear about the tingling, i was hoping that would go away after 72 hours. Thanks for the info on the lemon drops, i'll give it a go.

PamPam2's picture
PamPam2
Posts: 376
Joined: Jan 2009

One thing to avoid is cold. Wear gloves, especially if getting something out of the fridge or freezer. If the tingling gets too bad, you need to speak to your doctor, this is the drug affecting your nerve endings, called neuropathy, and can cause permanent damage. I liked sweets when I was on chemo. always tasted good when had that bad taste in my mouth, everyone is different, so experiment with different foods, I see a lot of people do well with the tart and sour things. Hope you get to tolerating your chemo better.
Pam

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi,

When I took oxaliplatin (finished it up a year ago), at first the tingling would go away after a day or two. After several treatments of it, however, it would start so it did not completely go away. I first noticed that I couldn't feel anything with the very tips of my fingers. Then it spread to over my entire hands and my feet that it would not go away in between treatments. I should have said something sooner to the Dr./nurses because I was told they would have reduced the dosage to make the neuropathy less. The tingling is actually neuropathy, which is nerve damage from the platinum in the oxaliplatin. The more you get, the effects can build up and get worse. My feet, although better than they were, still have the effects on my toes and balls of my feet. My good news for you though, is that a year later, I now have all the normal strength, coordination, and feeling back in my hands and fingers! I know it doesn't work that way for everyone, but it did for me so there's hope! Something to take to help counteract the neuropathy during chemo treatment and afterwards is Lysine, vitamin B-6, and L-glutamine. I really believed they helped me! The key is to stop or reduce dose before it gets too bad, though. If you get to the point where it's severe or doesn't go away in between treatments, definitely let your doctor/nurse team know.

Best wishes to you-
Lisa

robertwoitas
Posts: 17
Joined: Oct 2008

thanks for the information, i will speak to my doc's about the doeage. i am trying to work while doing the chemo. no time left on the books so i have to work. the nausea and the sensitivity to cold don't help. :)

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Tingling feet and fingers.....Jersey gloves...have them with you everywhere you go...it will wear off in 3 weeks completely after the oxaliplatin is stopped , or it did for me anyway..............

Nausea...I had it worse than anyone I know......EMEND is a Godsend get it use it on the 3 treatment days back it up on the fourth and fifth and maybe the sixth with Zofran or Anzemet.....

Smell and taste....a citrus adhesive wipe that we use on ostomy pouches does wonders. I have em if you need a few to try I will send you some...I wipe them on my collar or on my tape where my port is twice a day and right before I go to bed...no more smell. When I pee I smell it also so since I live in the country and it really wouldn't matter I would do the same in the city I pee outside and stand upwind so I never smell that waft of unwanted fragrance either. ( and you thought I was gonna wipe that with a citrus wipe also...I would if I had to ...hey whatever works in this game).....

Taste.......ambient temperature "Sunkist Orange" in the 2 liter bottle is not only very tolerable to me but takes the taste away also. It was the only drink that has lasted that I can still drink lukewarm and taste very good to boot although they say water to hydrate but I couldn't hold it down the first 5 days of the 3 day treatment.......

Good Luck and God Bless ya bud.....

robertwoitas
Posts: 17
Joined: Oct 2008

thanks for the information, what is and where can i find EMEND. and where do u get the orange ostomy wipes at ? i have an illieostomy that could sure use those.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

It is I think the top dog in nausea medicine but it is a controlled substance and it is very expensive , about $108 per pill if you don't have insurance.....The wipes I can send you some but "www.ByramHealthcare.com" has the adhesive remover in the citrus flavor..My email is cjpowers@brtc.net..if you'll send me your home addy in email I will send you some of them and also give you the product number to order them for yourself.....God Bless ya.....

robertwoitas
Posts: 17
Joined: Oct 2008

Thanks for the offer but due to budget cuts and a 10 percent paycut i will try to get the VA to pay for the supplies. Don't know how everyone else gets throught the finnancial end of this mess. I thank GOD I have the option of the veterans hospital, dont know how else i could do it, even with the insurances. So far your insights have helped tremendously, thanks for the encouragement. I have a PET scan tommorrow to see if it has spread, c scans showed two spots one on the lung and one on the liver. wont know results till the following friday.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

me your address and I will send you the wipes. I have enough to last you and I the rest of our lives.......and the best part is.....their free........ :-)

Annabelle41415's picture
Annabelle41415
Posts: 6249
Joined: Feb 2009

So one of the unidentified boys finally confessed to something. I knew it would come out sooner or later and now we know it is being done in the country - upwind no less. Wow wonder if the paper knows of this :) Kim

PhillieG's picture
PhillieG
Posts: 4889
Joined: May 2005

People have experienced good results using ancient
Oriental medications that have been around for centuries.
Too bad it is not legal in many states but it works the best and is cheaper too.

Those pills are so expensive and were not that effective for me. Many others love it.
Sorry you are having a rough time of it
-phil

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Phill,

I have to admit when I was a teenager and in my 20's it took me a truckload full to find out I didn't really care for it, but it will make you eat everything in sight...even a year old frozen poundcake in your buddies fridge....Haven't done it in 35 years, don't speck I'll start now but if it makes ya feel better go for it bud. I figure anyway we can feel better and get by is or should be legal...you always make me chuckle when you mention that cause it reminds me of when I was a teenager.....Hang in there buddy.....

PhillieG's picture
PhillieG
Posts: 4889
Joined: May 2005

When I was in my teens and 20's I never would have thought of doing chemo or the meds that go along with it. I really do not see any comparison to doing something in our youth for kicks, and having an inexpensive alternative to nausea while living/fighting/dealing or however you want to call it that we are all doing with cancer. There is an element in the country (I'm not saying that you feel this way) that would rather have people suffer with the side effects than smoke marijuana so they don't feel so sick. I didn't try it for that until I was 2-3 years into my cancer, before that I tried the "acceptable method" that didn't do anything except empty my wallet and gave me the jitters. I'll stop with the constant comments about it. It's out there, it works, it's inexpensive. The proof is in the pudding, which I think I will have some of right now...

Hope you're done with your treatments Buzzard and that you have good health for a very long time.
-phil

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Phil......I say if it makes you feel better then thats exactly what you should do. You are your own advocate to how you feel and react to this disease and also how you determine to treat yourself. I say if it works for you and helps you lose the nausea then im all for it. Im not criticizing you, I am with you in your decision to use age old methods...The element in this country has not been through what we have and especially what you are going through which in my mind should allow us to use whatever we decide just because of how it works, and anyone that doesn't feel the same should take a walk in our shoes and see if they don't change their attitude a little. Yes, its easy to sit in the backseat and criticize what others do but maybe if they were in our shoes there would probably be a different opinion...Hang in there bud.....God Bless ya

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

I can get it through a friend, who can get it from a friend and so on, I was so scared to try the good ole maryjane at first, because as a teen, I would take just 2 hits and it would immediately make me throw up, and then I got sleepy and had to pass out..I had only done it twice back then, and never did it again, I thought I was allergic or something, because my friends could smoke like it a cigarette, and not be bothered by it except for being goofy and hungry.

I take Emend and Dexamethasone, I also have Zofran, and Compazine, but take those when needed along with the Emend if I feel it wearing off, I had a little nausea last night, I have the fanny pack till tomorrow, but went and took couple hits off the maryjane and it was awesome, not alot of it either, just two hits, and it was gone. Funny how it has the adverse effect on me, it used to make me puke as a teen, now, it stops it! :)

I don't judge either who does what for this, I don't care, whatever helps the pain, the nausea, by all means don't suffer, just do what you have to do, including asking for MORE anti-nausea meds. I'm on my 3rd treatment and have never tossed my cookies, the first treatment I almost did, but I didn't..

What I do get is this constant swallowing feeling, like a bunch of saliva and taste of the medicine with the 5fu connected to me, and I think that leads to my hoarse throat after I'm detached from the pump as well.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I actually read somewhere that the increase in saliva is a SIGN of the coming nausea and vomiting. My onc nurse noticed me one time spitting into a cup and I asked her whether she had anything I could munch on. She asked me why, and I said my tummy hurt a little. She immediately gave me a shot of atropine and the cramping went away as did the increased salivation. I decided to look it up and sure enough it's a sign. Perhaps it is for you as well.
mary

PhillieG's picture
PhillieG
Posts: 4889
Joined: May 2005

Amen

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

Hi robert : just thought i would drop a wee note....we seem to be on the same chemo path. I was infused for the 3 rd round yesterday Thur 19 and now I too do the two weeks of capecitabine/ xeloda. My neuropathy is bad this morning. i thought I might try starting a little baby quilt but my sewing room seems too cold. It's minus one degree outside here today. I made up some flannel bags and put wheat in them....heat in micro for couple of minutes and just hold on to them plus gloves of course. Someone else just tied some rice in a sock and heated it.....that seems a lot more simple.

Last night after infusion my site was sore so i ended up taking a tylenol....I don't have a port.....do you???? and sleeping on the dexamathesone isn't easy either. Also I fill up a thermos with very warm water and if I nedd a drink in the night I don't get the throat pain.

I have constantly upset stomach too....I take Anzemet for two days and then switch to metoclopramide....I don't think it's a really big hitter like the emend but it keeps down to a dull roar. I also find lots of small meals help and I like high carb and high protein too like veg lasagna with lots of cheese .....oh and I find some milk of magnesia for the first few days helps things along.

sorry to bore you with the long list Robert....these are some of the things I am trying. I am find the oxy not too bad....I think I had myself worked up for a lot worse....of course we are just on round 3.....how many rounds are you booked for Robert?
I have stage 4 colon....already had 2 re-occurs on liver.

Hope you find some relief

all best wishes and HAPPY SPRING to all

Mags

robertwoitas
Posts: 17
Joined: Oct 2008

hi maglets, they told me about four to six months of treatments one every three weeks. i also use the rice in a sock to help keep warm. its not so bad now but every once in a while i will forget and take a drink of cold water and boy does that hurt. luckily i live in a warm climate so it doesnt bother me that much.
Just had a pet scan to check on two spots one on the liver nad one on the lung. hopefully i'll get some good news for once.
All we can do is "NEVER GIVE UP"

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

Hi again....good luck with those PET results....will they take a long time....I don't like the waiting. i have a CT on March 30 to check the liver....and I just had the CEA"s taken but that takes 2 weeks where we are to get the results from that blood

ok thinking and sending good PET wishes....
I am not giving up.....not yet maybe never

Mags

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

HI Robert, I'm pretty new to this, only two treatments so far, but when I was having my first treatment, a man came in for an IV treatment to help with his upset tummy. He was in the chemo room for about 20 - 30 minutes and was so thankful to the nurses as he left. I assume that type treatment for nausea would be covered by insurance. Be sure to ask!

My doc gives me 30 mins. of an anti nausea med before chemo and it lasts for 3 days. I've not had any nausea so far. Exhaustion, weakness.... yes. I HATE the chemo smell! I've gotten those automatic air sprayers and have them in every room. It helped over power the smell in my nose for those few days I had on the pump and it was clearing out of my system.

Peeing in the wind..... Always make sure the wind is AT YOUR BACK, Buzzard!

God Bless!

Diane

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

Hi robert....wondering how your nausea is?

My rounds one and two were so good and this time I have really been feeling it since infusion on thursday.....can't say my stomach ever settles down.

Have you had any luck getting the old stomach settled??

~Mags~

robertwoitas
Posts: 17
Joined: Oct 2008

my nausea is bad enough that i am not eating or drinking enough and had to go to the er for meds. Thye told me the results of the PET scan, it has now mets to the liver, one small lesion. talk to the surgical tem on friday about what do i do next. pretty bummed out today.
hope you find something for your stomach to ease the quizzines.

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maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

oh robert I am so sorry....liver mets...or at least met crap! I'll bet the surgical team will give you some good news on that....been there twice....it's doable Robert.

My nausea is easing maybe a little.

Ok now it's Wed and you have to absorb this new info.....glad you can move to the surgical team by Friday ...not too much waiting. There will be an answer Robert....please keep trying to eat and drink...

oxaly buddy
~Mags~

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Do update as soon as you can.

shoppergal
Posts: 118
Joined: Mar 2009

but it helps appetite. I lived on alot of junk food because the only thing that tasted good was sugary things. No matter what I did I always had that awful taste in my mouth and I always worried that I had bad breath, so I chewed alot of gum.I never thuoght I'd make it thru chemo but I did. Now on my pet/ct scan they found some nodes that all we can do is watch and wait, but there is a possibilty I might have to do more chemo. Won't know for a few months. Good luck you can do it!!!

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

any word from surgery Robert?

thanking about you and Lisa and Cheryl today!]

hugs,
~Mags~

robertwoitas
Posts: 17
Joined: Oct 2008

nickle size tumor on the liver. surgery team has to talk to the tumor board to see if they do the resection soon or go after it aggresivly with chemo first. good news is that they can do all the surgeries (gall bladder removal, illeostomy takedown and the liver resection) at the same time.

maglets's picture
maglets
Posts: 2589
Joined: Jun 2006

Hoorah Robert....that is all good news....there are things to be done. The first time I had my liver re-sected they took my gall bladder....non one bothered to tell me and I didn't miss it for a year:)

So waiting for the tumor board....ok....maybe chemo maybe surgery straight away....all good

thinking of you

Mags

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