Oxiplatin Side Effect

Oxi
I've been on oxaliplatin at least twice. (Bad memory!).

It does have side effects -- and some peculiar ones. But, for the most part, I found them to be minor annoyances rather than anything too sinister.

As you have probably heard, you need to be careful about both (a) touching and (b) eating or drinking anything cold for at least a few days after the chemo. For me, this wore off after a few days but I still stayed away from ice in drinks, etc.

Many people experience something which has been called "first bite syndrome" or ?? (can't remember other names it has been referred to). For a few days after the chemo (in my my case), the first bite of food you take say at dinner causes a jaw spasm. Can be just weird or sometimes painful. Lasts a couple of seconds and from the second bite on, all is fine.

Some people get peripheral neuropathy in fingers and toes/feet. For me, this was more 'odd sensation' than pain. But it is unpleasant. For many people it resolves after chemo, for others it can stay, at least in part. Mine resolved 100% after several months, both times i was on oxi.

Some people do have an allergic reaction to oxaliplatin. Of course this is something your doc/nurses will be monitoring carefullly. Some people stop immediately once they have an allergic reaction. Mine was relatively mild (rash) and controlled by pre- and post-chemo steroids and antihistamines.

I think that's the major side effects but I'm sure others will pitch in if I have forgotten any.

I hope this information does not increase your anxiety. I want to be honest with you about my experiences and what I understand is common for others. I think that is what you were wanting.

Only you can make the decision about whether to proceed. My understanding is that there is some pretty solid research evidence to show oxaliplatin can make a difference, in certain situations. But of course it is up to each of us to decide whether the risks/side effects outweight the possible benefits. I wish you luck in your decision-making. And, should you decide to pursue oxaliplatin, may your side effects be minimal or none!!

Love,
Tara

Oxi Side Effect
Kim,

What Tara said pretty much cover all the possible side effects of Oxalipatin. It doesn't mean you will have all the side effects. I have had 12 treatments of Folfox last year without any major side effect. The only thing I can remember is the cold sensation and metallic taste of food. I did develop the neuropathy one month after finish chemo. It is just a little bit of numbness in my fingers and toes. They are all gone 5 months after chemo.

Peter

lisa42 said:

oxaliplatin- on another thread
Hi Kim,

I made a long post on oxaliplatin under lmliess's "Folfox and Avastin" thread on May 5. Rather than rewrite what I wrote there, maybe you could scroll down and find that thread. There are also a couple of other posts on that thread that may be helpful to you.

Best wishes to you-
Lisa

not too bad
Kim,

I did not have much trouble with the Oxi. I did have some difficulty swallowing the first few treatments and was given a slurry to mix and drink to help coat my throat. After a few cycles didn't have any trouble. Also a LITTLE bit of peripheral neuropathy. I had a pair of gloves by the frig if I needed them.(though my kids would almost never let me get anything out of the frig)and made sure that I was very bundled up during cold weather (treatments started Nov.07)I even stood outside in many cold days watching soccer games!! What we won't do for our kids. I know many have it much worse. I guess I was lucky. I had more trouble with 5fu.
Each person responds so differently. I'm hoping you are lucky too and have minimal side effects. If not we are here to help you through.

Take Care,
Dawn

maglets said:

oxy
Kim I was exactly like you. I think my onc had me terrified of this drug and I was so nervous on the first day of infusion. Not only that but I had no port so I was going with the poke for every infusion. Everyone has different reactions and side effects, but honestly Kim I have not found it too bad.

yes you will probably react to the cold and have some numbness maybe tingles. I have just finished round 5 of 6 and I will be glad to be done but Kim it has not been that bad.


all best wishes and hugs
~mags~

Angel was on that
Its a hard drug to take because of the side effects but the drs always have a med to help with the side effects Angel did 6 months of that medication And received his purple heart award for completing the chemo he was proud of that . I hope the best for you.

michelle

Hi Kim,
I won't sugarcoat anything, it's not my style, yet I won't scare the you-know-what out of you. We all have variations of side effects from the Oxy or maybe none of the side effects at all. What I remember having was the cold sensitivity. I started it in Feb/March so it was cold out and I remember not being able to take my after lunch walks with my co-workers. I also had trouble holding a cold beverage. I did get some neuropathy in the hands and feet but it was never anywhere near where I had no feeling nor did it affect my driving. I also was still able to play guitar with no problems. However, I was never able to play the violin again which didn't bother too much since I never played it to begin with.

Try to keep calm and be aware of what can happen, but also be aware of what may not happen. Don't worry yourself into a panic, you will see how you react when you get there. For some reason, cancer taught me patience. It's funny that it did but I have little problem waiting in doctor offices. Not that I have to wait all the time but sometimes it happens and if my wife is with me or if we are at the kid's doctors, she is climbing the walls. They will get to us when they do, if it's taking too long I have no problem asking what is up and to get us in there. Sorry, off topic here. There are things you can control and others you can't. Think positive and you're halfway there. Follow advice from fellow members you agree with. Remember, we are all different.
Also, it will be over before you know it.
Hang in there, be well
-phil

scouty said:

How many treatments will you be getting
I think that is key. The worse side effects are cumlative. I had 16 treatments of Oxy (with Avastin and 5FU/folfox) over an 8 month period and have to say the first 3 months were a cakewalk. The next 3 were tougher and the last 2 plain sucked but my body had taken a beating from a perforated colon and subsequent acute peritonis.

I had the cold avoidance thing for 3-4 days, I don't remember when first bite started but I have to say I still get that every once in a while (after almost 5 years) and have learned to not take a bite out something really hard first thing in the morning (banana over an apple) but it's only that first bite that hurts. My fingers and feets started cramping at about 6 months and took months to subside. I don't have any problems today from my fingers but my feet are always cold and will cramp up every once in a while.

Find Betsydoglovers post about B6. I took a bunch of supplements (all approved by my onc)but when the nausea got so bad that last 2 months I couldn't get them down so the side effects knocked me on my bootie.

Lisa P.

Kim
Like they all said - everyone is different. But to add to them - I had a bit of every side effect I think - Doc laughed at me - in a funny way of course. Everything that has been said above here. I also have problems with my eyes, like when I cry it hurts (but i keep watching tear jerker movies). On my first night of treatment my legs hurt and I have a bad headache, I have vicodin for that. I only got nauseated 2 times, the first bite hurts but i can drink cold stuff by saturday. I just posted something about lipoic acid, and that helped the cold hands and feet, and I drank cold stuff today (and i had an infusion today). Sometimes, while being innfused, my chest feels like there is a brick on it, but that goes away soon as the infusion is done. Chemo brain is a good one, forgetting things, like what other side effects I've had! Anyway, nothing has been unmanageable once I figured out how to manage them )asking here has been a life saver!). I think the leg pains were the worst, and the tiredness. I guess what bothers me most is being tired so much and not getting done things I'd rather be doing - soon enough tho. Keep a good sense of humor about it and it will be over before you know it.

Hugs
Sherrie

bdee said:

Oxi side affects
Sorry to say I had all the side affects you can have from a drug. While I was being infused my hands would start to hurt and if I had to go to the bathroom while being infused, I had to have something around my hands to push the pole.
I quit Oxi almost five weeks ago and I still can't taste food, all I can eat(Drink) is Ensure. I live on it and slushies that I make here at home.
I lost all my hair and lost hope it was so bad. After five weeks of no chemo, I had decided to quit and just live the rest of my life in a good way instead of in bed. My doctor, of course, did not like that statement. So he took me off Oxi and now I am at 700 mg of 5FU and 800 of Avastin. He told me I am on maintenance that I can't take Oxi anymore without being in a hospital. He also told me he has 70 patients right now on the Oxi, 5FU and Avastin routine and only two of us couldn't do anymore. Me (I'm 54) and a 70 year old man with Parkinson's and colon cancer. So don't take what I say as what can happen to you. When I told the doctor I knew someone taking 5FU had bad side affects. He told me(very strongly) that you could not compare yourself to your neighbor. He was very adament about that.
I still have chemo brain which makes it where I can't work (either from home or the office) but I'm assured it will go away in time.

Good luck to you.
bdee

one step at a time.
Kim I won't go over the side effects again...I think everyone has covered those really well. I have said that I was really scared of oxy and I was but I only have one left and I think I'm going to make. Just wanted to add that I did several months of 5fu after my colon surgery and I was way way more sick on that drug. Honestly oxy wan't bad but every single one of us does react so differently

So just breathe, take it easy, one dose and see how it goes.

Hugs....~mags~

Oxy side affects
Kim, I had 12 treatments with oxy, and have experienced nueropathy in some form since I started it in April last year. I finished it it in Sept. I had great results so felt it was worth the misery. My hands are pretty numb, but it is my feet that really give me problems. I had the sensitivity to cold and was usually only happy under my quilt! I think the hard part was wanting to drink cold water! I finished that treatment in Sept. and took 3 months off. Unfortunately tumors grew back and multiplied without the drugs. I am now on Avastin and irionatecan with basically no side affects. Scans show the tumers shrinking again. (They are on my lungs) I could not take avistan until now as one of my side affects on oxy was an incredible chest and left arm pain. My heart was checked out completely and all seems good, ut Drs. said no to avastin at that time. Now I', glad because it is working well now. Dr. said I will probably stay on these drugs indefinitely as long as they are doing there job. He feel the stage 4 diog. will continue returning if I stop drugs as it is into my blood so much. I know this was a wierd side affect, Dr said he had not seen it, but everyone is so different. You really have to have confidence in your Drs. If not, you need to check around! You'll do great!