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

Sorry he's having a time of it.
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...

tammybrook said:

well he is on oxy beginning
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!!!:)

side effects
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 said:

Oxy was hard---no doubt
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

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

Semira said:

Oxi...
... 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...

Lots here! lack of appetite , pain, stomach issues, headache
vision issues, neropathy , weakness, mentally cloudy but if it works it's worthy .........
Hugs!
( ahh, and some unconbortable hemorrhoids to be added )

Erinb said:

It is great that the
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

Oxaliplatin
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

Oxy sides
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