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How sick does folfox (oxyplatin) make you

carrieh
Posts: 114
Joined: May 2012

Finished radiation and 6 weeks of 5fu..starting folfox next week..just wondering what other folks went through on it? what side effects bothered you the most? kind of nervous..the 5fu wasn't so bad..radiation caused some really bad cramping...anyway thanks for any replies..it helps to hear from other people who have gone through this stuff

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

Hi Carrie,

When I was on oxy the worst of it was the intolerance to cold. Be it touching or tasting anything cold. The first time I experienced it was while cutting up an onion and when my fingers touched the cold inner part after cutting it there was almost an electrical shock. I soon learned to keep a pair of gloves next to the fridge. On the one occasion that I drank something cold, my lower jaw and throat seized up tight. The panic that followed was pretty bad, but the seizure didn't last long.

Another side effect is low white blood cell count. After treatment one day, mine tanked on me. By time I got home, I was so weak a kitten could have beat me up and my temperature jumped up to 103. It landed me in the hospital for about four days.

Hope this helps and doesn't scare you. We're all different and react to treatment in different ways.

Ray/Doc

SharonVegas's picture
SharonVegas
Posts: 189
Joined: Feb 2012

I did 8 rounds of Folfox6 plus Avastin. Nausea, stomach cramps, extreme fatigue, and neuropathy in feet and hands were my biggest side effects. I was also sensitive to sunlight and cold items. I still have a little neuropathy left in my feet but nothing major. Good luck with your treatments,
Ron

Momof2plusteentwins's picture
Momof2plusteentwins
Posts: 445
Joined: May 2012

I have done 7 of 12 rounds of Folfox so far. 5 more to go. The biggest thing to me is pure exhaustion. Disconnect day and the day after are the worst. The cold sensitivity is getting progressively worse. I usually can't drink anything cold for 4-5 days, the last 2 rounds my tongue feels numb, cold anything hurts tongue, throat, and lasts 7-8 days. Fingers tingle, cant wash hands with cold water or even touch anything cold. Some nausea, but I take Zofran and that usually helps. I feel like I'm in a boxing ring getting beat up and keep going back for another punch. Good luck ~ remember we are all different.
Sandy :)

YoVita's picture
YoVita
Posts: 541
Joined: Mar 2010

First keep the above in mind. I did have all the side effects including: nausea, diarrhea, constipation, cold sensation, mouth sores, huge blisters on feet, neuropathy, numb tongue, hair loss and others I can't remember. I got through it by asking for help for the symptoms as soon as they appeared. The nurses/doctors had aids for most everything. For some, I got prescriptions beforehand in preparation (nauseau, anxiety, constipation, diarrhea, etc). Although I hate taking prescriptions, I learned that this time I really needed to let go of that and take the bloody pills. Good luck to you! Post any specific problems you have - someone will have an answer.

jen2012
Posts: 1195
Joined: Aug 2012

My husband has only had 3 treatments so far and is still working full time plus keeping up with other activities. Sensitivity to cold is lasting a few days.

lepperl's picture
lepperl
Posts: 39
Joined: Jul 2012

Everyone is different but oxi is usually tough. I had an anaphylactic reaction. But still took it under desensatizing procedure. Cold neuropathy was horrible. Couldn't stand the knife stabbing tingling and numbness in hands and feet. could not eat anything that was not warmed and even when I did my jaw locked up. Now there is the bad news. Good news is if you can tough it out from all of my research it is the number one heavy hitter for colon cancer. So I hope it works for you. Before you start ...... Hydrate, hydrate, hydrate. If you get cold sensitivity drinking and eating will be tough. So eat up now and get strong before you start. Good luck. Wishing you the best. Some people get very few side effects and I hope this is the case for you. Also keep in mind my situation was worse case senerio when I was taking it but I am one of the lucky ones whos symptoms went away after stopping the drug. A very few people will have neuropathy for life with it.

Lori

thxmiker's picture
thxmiker
Posts: 1213
Joined: Oct 2010

HI Carry!

Sending good thoughts and prayers your way!

Everyone is different. The side effects can vary, mine also increased over time. About round three, the tingles in the lips, and then the fingers and toes. Cold was around round two and shocking at round 4. By Round 4 I had to wear winter clothes everywhere. Where gloves to get something out of the freezer. Cold drinks actually hurt, like a bad sore throat. I only made 10 out of 12 scheduled FolFox treatments. I wound up in the hospital after round 6 and 8.

At the same time, does it make the cancer less aggressive? One will never know? I still have tingles in the fingers and feet 18 months later. I lost some eye sight, and hearing. I look healthy and have an occurrence of cancer. I am scheduling surgery and Chemo to follow.

Do what you feel is right!!! Do not let others push you where you do not want to go. I have little regrets, yet Chemo has some downsides.

Best Always, mike

thxmiker's picture
thxmiker
Posts: 1213
Joined: Oct 2010

My CEA went from 1125 to 2.0. I have a small tumor, imagine what it would have been if my CEA was still 1125? The CEA is a measurement of the new blood vessels that possibly feed cancer.

Best Always, mike

LOUSWIFT
Posts: 360
Joined: Aug 2006

I went through the full 12 treatments but around #7 I started to get ascites (fluid on abdomen). Turns out the folfox gave me chemo-induced cirrhosis. My Onc ignored the signs so keep an eye on you. It will be hard doing this since so many other things will distract you...I learned to sleep on the toilet; terrible sensitivity to cold; always tired; hand and foot syndrome well the list goes on and some people don't get all the side effects. As for me the race is on which will kill me first cirrhosis;cancer;doctors. All three are pretty deadly. Best of luck Lou

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

For me the worst treatment was my first one...I had diarrhea, vomiting, no appetite, everything tasted bad, neuropathy, and fatigue...slept for like 3 days. I am now on my 6th treatment...number 7 is next week. I am doing so much better... The diarrhea only happened again with #2 treatment... No vomit tin. Now I am slightly fatigued... Usually on pump disconnect day I will take a nap in the afternoon. I do still have the bad taste... Ask for magic mouthwash if you start to develop thrush...it really helps. The neuropathy is the main sideffect that I get now...the end of my tongue is now completely numb....and I can't eat or drink or touch anything cold. The other side effect is that I have lost a lot of hair. I am going to order a wig...i had long dark thick hair... I have lost about half of my hair....and it is still comming out. I have cut it a little shorter...I will probably cut it again.

Good luck with Folfox ... Hopefully you won't experience all of the side effects.
Alex

marbleotis's picture
marbleotis
Posts: 483
Joined: Mar 2012

On August 23,2012. Each treatment was a little different. Diarreha treated well with meds. Usually on disconnect day. I have neuropathy hands and feet. Used to be in teeth and lips and tongue - but that's improved. Alot of fatigue and "chemo brain" at times. For the neuropathy my Onc added mag/calcium drip before and after each treatment at #6 and on. Do not be nervous! Take one at a time, I found it easier to take in small chunks. Try to also live your life. You will need to be careful about infection since your immune system will be very compromised. I just stayed away from people for a while. I never got sick - so it worked. You may have a delay due to low counts (platetlets, WBC...), don't worry we all have had that happen. Please keep us updated.

sammer4u
Posts: 23
Joined: Dec 2011

As many have said everyone is different. For me, I just completed my 12th and last round. I can say the first treatment was weird not knowing what to expect. It was December 20th and I came off the pump December 22. I felt okay till Xmas eve, missed church services and actually took a nausea pill as I felt some of it. But I was fine. I did 8 treatments and then had surgery and followed up with the remaining 4 treatments. As others have mentioned the main issue is the cold sensation. I hate warm drinks, and it was very hard to get use to. Everything to me tasted different. Liquids tasted the same and tasted like tin. I have nuerapathy in my toes, heals, and fingers. They are constantly numb and I am told that will go away potentially. Not sure how long, but I hope soon as in a few months or at least lessen. That is the only side effects I had, the cold sensation, and nuerapathy. No hair loss, no sickness, just weak, and tired, were noticed but not bad. I worked full time around the chemo days.

Good luck and I hope all things go well for you! My next step is my ostomy reversal and then the 6 month check ups.... otherwise I should be good to go!

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

Bad news or good news first...hm. Here's the bad news: Folfox gets progressively harder each round. If you plan for it--for instance having someone give you a ride to and from the last treatments, and scheduling nothing for a few days after the infusion--you can make it a little easier on yourself.
The good news is that Folfox is one of the best heavy hitters out there for cancer.
You can do this! I told myself that I was willing to trade a couple of lousy months for many happy years ahead of me. It became a mantra of sorts.
You can do it too.
Hugs from California~
Tommycat
Dx Stage 3 rectal cancer 2009. Currently NED.

swimmer22
Posts: 53
Joined: Oct 2011

Ditto what Maxicat said... my first treatment was by far the worst. I came home from infusion, threw up and landed in bed for 24 hours. I felt like crap and thought I would never be able to get through another one. That first week following treatment I was not feeling very great.

Well, the preceding ones weren't nearly as bad. I did have the cold sensitivity and went through treatments in a northeast winter. I also suffered with leg cramps on certain days. The calves of my legs would really cramp and make it hard to walk sometimes. I still have a bit of lingering numbness in my feet when they get cold and I've been out from treatment for about 17 months. Best of luck to you. Stay positive and you can concur the treatments!

Patteee's picture
Patteee
Posts: 948
Joined: Jul 2009

I do agree that people on this board have had such a wide range of issues on oxy, not everybody has everything. I for one, no nausea, no vomiting. After the first round, my WBC tanked big time, ended up in the hospital with a blood infection from the port site. That wasn't nearly as bad as it sounded, just a week in the hospital and major major antibodies through the port site for several weeks. So I got shots for awhile to build up my WBC and that was never a problem again. The worse thing for me was increasing fatigue, horid swollen mouth and sores as well as thrush. Everything I put in my mouth tasted like, well, like sh*t. I was hospitalized 2 more times- once because my mouth was so swollen, gums up over my teeth- couldn't open my mouth. The last one was the worse- kept fainting, couldn't get upright, massive diarrhea (I had a colostomy and went through many bags, and left quite a mess)- finally called the paramedics for my 3rd hospital stay. After that, thinking it was #8, my oncologist took away the oxy and I just got the 5fu. Still it was a long time coming back- I did feel better after the oxy, but man it whooped my butt for a long time after. Just no energy, had to use a mobile cart when I went shopping, white as a ghost, sweat running down my face. Always kinda felt out of it, like I just wanted to go home and go to bed.

Annabelle41415's picture
Annabelle41415
Posts: 4231
Joined: Feb 2009

It was mostly tolerable except for being sick after being disconnected from the pump. Hard to eat and felt no energy. The cold sensation was terrible though and hated that big time. Just going into the grocery store and picking up a cucumber was painful. My hair thinned but no one really knew it because I've always had thin hair. Be careful in the sun too as you can get burned very easily. If you do get sick, please let your doctor know as there are plenty of medicines out there to help you. Try to eat well too. You might not want to, but it will be beneficial to you and your treatment. Good luck.

Kim

carrieh
Posts: 114
Joined: May 2012

thanks to everyone..i stayed up the other night until some absurd hour..just crying and freaking out...ive been having a hard time emotionally with the ostomy (permanant in my case)..and just felt like a big scared baby about starting oxy. I really appreciate the you can do its'...and all of the sharing...you guys are all just awesome

herdizziness's picture
herdizziness
Posts: 3395
Joined: Apr 2010

I just started back on the oxi last Friday. I'm actually blogging how it feels and how it is going so that others facing oxi can see ONE perspective of it. So if you go click on my name and go to blog, you can see the daily feelings I have while on oxi/xeloda/avastin starting 10/12/12. I did this same combination back in 2010 and it did wonders for shrinking and calcifying my tumors, but I didn't think to write about how it felt, you forget things as time goes on.
It isn't that bad hun, you can do this.
Winter Marie

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

Just to clear up a few things. Most people taking oxy are actually doing FOLFOX (5FU + leucovorin + oxalyplatin). The pump you wear is to deliver the 5FU, as it works better when delivered slowly over 48 hours. The leucovorin and oxy are given as a bolus in about 2 hours. Most of the diarrhea, mouth sores, peeling of skin on hands/feet is actually due to the 5FU. Oxy side effects are cold sensitivity (and other neuropathy) as well as cramping (jaw and calves are common). If you get the cramping, you can take calcium and magnesium and it really helps (me at least). Leucovorin really has minimal side effects, as it is actually only a vitamin (folinic acid) that helps the 5FU work better. If you take avastin as well, it has side effects like nosebleeds and effects on white blood cell counts. Hope this helps.

Tedd

beauty21
Posts: 1
Joined: Nov 2012

Hi Carrie. I just finished my 2nd folfox treatment a week ago today. My side effects were much worse this time than the first. They also have lasted much longer. With my 1st round the side effects lasted 4 days. This time its all week. I get the 46 hr 5fu infusion as well. I have experienced severe headaches, nausea, and neuropathy the 1 st day after chemo. My 2nd day was nausea and neuropathy. Day 6 im getting the tingling really bad in my hands, jaw tightening and my throat feels swollen. All this started on the 4 th day. I had a colon resection and was then told it was metastatic to my liver and stage 4. Im 44 yo and plan to leave any wine. Alcohol and beer alone altogether. My taste buds for food is really bad this week along w the swollen throat. I would like to know does the symptoms get worse and last longer with each treatment. Im not looking forward to them getting worse than what it is. Anyone have an answer to that question? Does it get worse with each round.

rogina2336's picture
rogina2336
Posts: 188
Joined: Apr 2011

My husband did 10 rounds of 5fu with oxy and I guess the worst side effects were the cold sensitivity and he did have WBC issues and thrush, but it sure worked over his tumors!! otherwise he was on 5fu until this summer when he started Vectibix and that is doing very well for him now. Kim

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