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who has had very bad side effects from oxyaplatin???

tammybrook
Posts: 43
Joined: Oct 2011

dad is back on oxy with xeloda pills following for 2 weeks...this time the oxy is kicking him in the butt!!!!! he feels like he has the flu and tired...he also has the neuropathy with the cold...did anyone ever have bad side effects from oxy and if so what and how long did they last? hes discouraged (when you don't feel good) but last pet scan was great! tumor shrinkage and others not active anymore...keep telling him to think positive!told him to go on this site and talk to people who unfortunately have to go through it like him and let him ask some questions! hope he will, but if not ill still be here! :)
Lou

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

Mine were moderate to severe. It is a lot like having the flu every other week. Then right when you start to feel better you "get the flu" again. The sensitivity to cold stops after the treatment but you can still have numbness in fingers/toes for a long time and it can vary from mild to moderate to severe. While everyone's different to some extent, that protocol is tough.

I found this from another member while searching on side effects:
"As you may already be aware, oxaliplatin has some strange side effects including (for most but not all people): sensitivity to cold (drinking, touching), neuropathy (tingly pain) in fingers toes, "jaw spasm" (sore feeling in jaw on first bite of food - may just last a day or 3)."

It would be great if your Dad could stop by here. He could just "lurk" like many others do...
Tell him to hang in there, it gets better.
-p
PS: Hopefully others will chime in...

LilBitaWitch
Posts: 10
Joined: Mar 2012

When drinking anything cool my brother used to describe it as having a porcupine in his throat. I live in AZ and have been on it three times myself, in 2010 I didn't have anything with ice from March until the end of Nov. If doing treatments every other week you might only have a couple of days just before the next treatment when it isn't too bad. I have been off it since last Sept and still have a little problem with touching anything cold for too long but no more problem with drinking something cold. My motto is "this too shall pass". I am having more problem getting over effects of Avastin then the Oxyalaplatin. I have genetic colon cancer that has went to liver (twice). I am younger than most people going thru this but am 3rd generation and my teenage daughter has the gene. Not sure how bad your fathers liver is has anything been said to him about a SIR Spheres procedure since you said he is not a canidate for surgery?

p.s. thanks P... I forgot about the saliva glands going crazy when you first take a bite of something. LOL.

tammybrook
Posts: 43
Joined: Oct 2011

well he is on oxy beginning every 4th week...hes on two..off one then back on..so hopefully he gets a little good time in between..i tell him that people say its like flu symptoms and thats how it is for him...hope by monday he feels a little better and can go to work...he still does that! the liver has been overloaded with pain meds the past month but good enough to do chemo...last chemo really helped stop growth in liver and like i said before eliminated all but one tumor in lung...hope this works the same...
the eating he has also with the food... did anyone lose weight during the few days after oxy? hes pretty good still with weight now...told him to drink fluids to stay hydrated...
\what were the side effects of avastan??
the spheres would be an option but down the line....if next scan if good they could possibly do that new radiation on the tumor in lung which he just had on the neck..(and only needed one session...that was a procedure though with the mask and immobilization!) hes been through a lot in a short period..but we keep him positive and going!!!:)

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

Hi Tammy,

Sorry to hear about your dad and family. When I was on Oxy after a few treatments I landed in the hospital for the first time in about 30 years with a seriously depleted white blood cell count. After that I had to get Neulasta injections after every treatment. The insensitivity to cold was pretty nasty also and I had to use gloves whenever I got something out of the fridge or freezer. Probably the worst experience was when I was riding my motorcycle home from treatment on a blustery autumn day and by time I got home the muscles in my face were in spasm very painfully. I've been off Oxy since Dec 2010 and still have neuropathy in my feet but then I'd been getting treated for that since before my dx.

Hope that he feels better soon.

Ray

tommycat's picture
tommycat
Posts: 790
Joined: Aug 2011

Oxy was hard---no doubt about it. I would get the IV on Wed. and would feel really bad Friday through Sunday. It felt like the world's worst hangover mixed with the flu, and I found it extremely depressing.
Here is the blunt bad news: It got worse every time. An accumulated level made it even worse.
Here is the good news: Your Dad has most likely been prescribed "x" number of times for the infusion. It would be helpful to remind him that "He's almost halfway" or something along those lines...the reminder might be heard best when he's feeling better between infusions.
To know that there is an end in site---a goal to reach---may make it tolerable.
You are a good daughter :)

Kenny H.'s picture
Kenny H.
Posts: 503
Joined: Aug 2010

Had my last treatment of that stuff almost one yr ago and still have numb hands/feet.

Semira's picture
Semira
Posts: 378
Joined: Mar 2012

... is really hard stuff :-(

Thorsten had the 5th of planned 8 iv 10 days before and the side effects are getting worse but still stay manageable. He is very cold sensitive and the first week after the iv he can't get anything out of the fridge without gloves. For about 10 days he also can't eat or drink something cold without getting a strange and unpleasant feeling in his throat. Also his appetite is "down" for about a week, so he looses 1 - 2 kg each time (and get's them back again the following 2 weeks :-) )

(phew, difficult do put the german thoughts in english words)

The first days after the iv he feels "wobbly" on his feet if this is the right description but luckily up to now this feeling faded away after some days.

But all these neuropathy seem to be less intense since he takes glutamine. (in agreement with his onc / 15g / 2 times a day /during the first week after iv)

The nausea is very variable - some times intense some times rarely sensible. The fatigue is really worse this time but nausea and fantigue may also be caused by the Xeloda pills. And his hair is getting thinner - but only noticeable for those who know him well.

We are curious what will come...

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

vision issues, neropathy , weakness, mentally cloudy but if it works it's worthy .........
Hugs!
( ahh, and some unconbortable hemorrhoids to be added )

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

sorry to hear oxy is being true to form.

i hope you guys can all navigate your oxy issues.
likely everyones will be different.
a good functional doctor or naturopath can work on healing the issues and some tcm on the side also was benefical. after all tcm is just some strong chinese tea, I really don't know what all the fuss is about taking it. its been tested on 5 trillion chinese for 5000 years so theyt have worked out all the kinks in the system.

i'd have a look at the 48 hour fasting post as well. that was an interesting read.

you can insist to have some extras iv'd in before oxy, its not for me to say here, but any great doctor should be able to make these suggested improvements. now of course the onc's want have a bar of it. they want everyone treated to the standard so their stats all line up nicely or the hospital budget stays in the black.

a great alternative doctor may suggest some gut healing, some probiotics, some protein added to vegetable juices and oh a few coffee enemas and some supplements. a really good one might suggest chelation of the platinum you are likely storing for a rainy day. maybe thats where the fasting can be worked into a good regime. it won't be easy, but it might be effective. just a few ideas from the alternative side of the fence.

and for pain don't discount good old fashioned panting and breathing. then even some meditation can take the edge off as well for most.

hugs,
pete

hugs,
pete

Erinb
Posts: 295
Joined: Apr 2010

It is great that the treatment is working and the cancer is shrinking. The first time my husband completed his 12 rounds he felt sick, had low blood counts, and had temporary nueropathy. However, when he had some of his tumors removed the cancer showed complete nuecrosis (dead cancer). Tell him to hang in there. The doctors will monitor him closely. The next time my husband was put on OXY (round 15) he almost had respitory failure and broke out in an immediate red rash. He is now allergic to OXY and not allowed to have it again.
Erin

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Hi all again: I had 12 treatments of cisplatin + gemcitibine (no problems with that regime) followed by 12 treatments of folfoxfiri - oxaliplatin + irenotecan + 5fu + leucovin. Right after the first treatment of oxi I got the first bite syndrome, very bad neuropathy, cold intolerance, the shakes, all of the side effects the literature tells us about. Upon the advice of someone who had gone through it, I started taking daily the following supplements: L-Glutamine 5-10 grams of the powder in juice, alpha lipoic acid 1 tablet after each meal, 1 tablet of calcium:magnesium each day in the morning, and Vit B6&12 1 tablet/day. I still do this regime even though my last chemo was Nov 4/2011. It worked for me! I could even drink cold drinks right after chemo. I don't think there is anything there that can hurt anyone so give it a try. We get a lot of anti-nausea pills before, during, and after chemo where I'm treated so that was never a problem. I never really found a "cure" for the severe diarrhea caused mostly by the irenotecan and 5Fu - just went with the "flow" so to speak. I also had embarrassing hair sweating but don't know which chemical caused that.
Cheryl

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

I felt like the best description of the side effects is a hangover with some jetlag and the beginning stages of the flu.

I get Oxy every other Tuesday as part of a three day treatment of 5FU, Folfox 6, Erbitux and Lucevorin (sp?). they also give me other pre-meds to deal with side effects.

Today is week 12, and I have been scheduled for 12 more weeks. So, I'm at "halftime".

I cannot touch anything in the fridge or freezer. When i go out to eat, I order water without ice and ice tea with half ice, but cannot touch the glass so i drink out of a straw. I have a colostomy bag, so the diarea isn't really an issue... but i definately have a lot of that and imonium AD is my friend.

the dizziness has gone away as I am more hydrated than before.

A few things that i've done that has helped greatly.

1. I drink 1 ensure plus drink every morning (room temparature)

2. I am on an Iron pill for my low hemoglobin, and I have to drink a tall Orange Juice with each pill. My wife poors that when she wakes up in the morning, and after about an hour of sitting in room temperature, it is easier to drink without the ice-crystals sensation in my mouth.

3. Next i drink 1-2 sports drinks every day, again at room temperature. (CostCo and Sam's sell lower cost sports drinks as well as cases of the Ensure Plus.)

4. And the last thing was a gift from a former cancer survivor... who had terrible side effects and nausea that wasn't solved until he tried going back to his college memories and eathing the old hash-brownies. I've tried these at times when i feel the lowest... and the "munchines" take over and I begin to eat more and they work! not sure if you know of anyone that can help you in this area... but it's worth a try. I found a friend of a friend who makes them and they worked for me.

5. Lastly, positive spirits and support and love of family is the best! You are on the right track with your caring love and support for him

my best to you.

Joe

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