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side effects of Oxaliplatin, Leucovorin and 5-FU

Robert W
Posts: 18
Joined: Aug 2009

I have had two treatments of the above chemo drugs and I am having a real tough time with the side effects. Although I take anti-nausea medication I still experience dry and sometimes wet heaves. I have no appetite and have fatigue along with weight loss. I will be talking with a nutritist. I still have 10 more treatments. Have anyone out there experienced these side effects and was able to deal with them. The chemo is destroying whatever quality of life I have.

I need help

Robert W

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

HI Robert, speak to your oncologist and maybe he will reduce the dosage. I never had the extreme reactions you're speaking of but my dosage was reduced before my 3rd tx because my white cells were way too low.

This will be over sooner than you think!

Diane

Robert W
Posts: 18
Joined: Aug 2009

Thank you Diane..I was planning to speak with my oncologist

christinecarl's picture
christinecarl
Posts: 543
Joined: Sep 2009

The first two weeks were rough for me too, but then it got better. I did tell my Onc and they gave me a different anti nausea med (Emend) I also got fluids on the day they removed the pump along with more IV anti nausea meds on that day. I hope you and your Dr can find away to make this more manageable for you. Hang in there!

lizzydavis's picture
lizzydavis
Posts: 893
Joined: May 2009

Hang in there. It will get better! Keep thinking of the light at the end of the tunnel. I had the same treatment (FolFox). I took Ativan which was very helpful. It helped me rest and relax. For nausea, try Ginger tablets. I take them everyday and believe they help. The lemon citrus candy also helps nausea. I ate soup, saltines, fruit cocktail, applesauce, popsicles, pudding, chocolate, etc. Drink lots of fluids - grape juice, apple juice, etc. Hope these suggestions help you.

Robert W
Posts: 18
Joined: Aug 2009

Thanks for the info...I will be talking with both the oncologist nurse and the MD. I have never been this sick in my life and it is a tough battle but I plan on fighting all the way

butterfly23's picture
butterfly23
Posts: 257
Joined: Mar 2008

Hi, I'm going through just what you are! I am on my 3rd treatment of xeloda avastin, oxyaplatin and I am having a hard time with nausea and neauropathy of my hands. I am taking anti-nausea pills and am trying the ginger candies, I have not tried the lemon drop candies, I do not like sour candy, but I heard they do take away the nausea! I am going to my onc. next week and I will let him know, maybe he can adjust the dose!! Good luck!
Hugs
Karyn

johnsfo's picture
johnsfo
Posts: 47
Joined: Oct 2009

I had nausea and lack of appetite from oxalyplatin, and during another chemo course I had nausea and vomiting from Irenotecan. The qualities of sickness for each drug were different and I found different remedies. For oxalyplatin, I tried several antiemetics prescribed by my onc, but marijuana worked best. It immediately relieved the nausea and the disgust I felt for food and gave me an appetite. I also took some ginger candies, and they relieved the nausea during the day. My sister-in-law was pregnant at the same time I was doing chemo, she had morning sickness and recommended the candies, called "Preggie-Pops" -- love that!

For the nausea and vomiting caused by Irenotecan, I found a combination of Atavan (lorazepam) and Promethezan worked well. (Marijuana made it worse, in part because I was also having severe pain from cancer at the sacrum, and the pot made me hyper-aware of the pain.) Side effect of premethezan and lorazepam, though, is extreme sleepiness. Even so, that was better than the feeling the side-effects of the chemo.

My doc also reduced dosage when other symptoms (neuropathy) became too severe.

Best wishes,

John

Robert W
Posts: 18
Joined: Aug 2009

I have been sucking on sugar free candies but they don't seem to be of help. Maybe I will try the ginger candies. Thinking that I have 10 more treatments ahead I hope the Onc will come up with a new approach

just4Brooks's picture
just4Brooks
Posts: 987
Joined: Jun 2009

My name is Brooks and I'm on the same thing you are om. I just got done with my 5th chemo treatment out of 9. I was soo sick after the first two treatments that my doc started me on Emenmd it has lelp a lot!!. Then after my 3rd treatmeny they lowerd my Oxy by 20% becouse my fase was numb for 4 days. I also smoke some pot from time to time and it's a big help with nausea and appetite. I'm California so I can get it legaly and have my card. You need to find a way to get through this. Someday we'll look back and laugh

Life is funny sometimes
Brooks

Robert W
Posts: 18
Joined: Aug 2009

Thanks Brooks..unfortunately pot is not legal in NY. I will talk with my Onc about Emenmd. Thanks again

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

I am sure you can still get it in NYC, only not "legally" :) My sister was dx in 03/09 and she too is on oxaly. The sensitivity to the cold is what gets to her the most. She also had a loss of appetite in the beginning and drank alot of protein shakes to keep up her strength. Keeping you in my prayers. Keep the hope alive! Marie

Holdtight's picture
Holdtight
Posts: 138
Joined: Aug 2009

Did they ever increase the Oxy back up! I developed extreme shoulder pain in my right shoulder that was diagnosed as internal shingles. Scary. I went in and told my doc I quit chemo. I couldn't bear the pain thre was no way I could go on. He looked at my counts and was able to lower my oxy by 30% which took the shouler pain completely away. I heard that chemo will go directly to the weakest points of the body and let us know and also a lower immunity will bring out the shingles. My question to you - have you ever heard of oxy being brought back up and does it make a big difference in our remission if not. I don't want it increased that's for sure. I don't have the nausea or I'd ask you to send me a pack of those cigarettes once you stop laughing and having a good time out there. LOL. Any advise thanks.

Annabelle41415's picture
Annabelle41415
Posts: 4412
Joined: Feb 2009

My post disappeared, however, I would talk to your doctor as others have said. I had side effects, but they were never that severe. I do remember that my second treatment hit me hard though. I hope that your future treatments go better for you.

Kim

coloCan
Posts: 1873
Joined: Oct 2009

Ill be starting this Mon what you're already on as my second round of chemo.First round got to me badly,with radiation at same time. Dread second round but its something we must do.Hang in there. I'm in Brooklyn,what part you from of NY?......Steve

Robert W
Posts: 18
Joined: Aug 2009

Hi Steve...I live in Rockland county. To be precise Pomona NY. (near West Point) The Chemo I am receiving was after two major surgeries. The second surgery remove any and all tumor. I was then given "Hot Chemo" twice while I was under. The Doc's told my family and me that there was no visible tumors in my gut. The chemo is designed to knock out any microscopic particles that may have escaped. I don't know what is worse the surgery or the Chemo. Howerever if this torture is what we must go through then so be it. Hopefully we can find some balance between the chemo drugs and their side effects.Where are you getting treatment? I am receiving treatment at MT Sinai in NYC. Good luck Steve with your treatment and just remember the "end game". We are winners

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

room temp ginger ale? I did that a few times, wasn't bad. Always carried lemon drops with me, and they weren't the sour kind, but they seemed to work.

You're just starting and winter is almost here - get really warm gloves and socks, they will be a great help.

I lived off of warm tea, room temp orange sunkist (that was a buzzard suggestion). Soups, some spicy foods were really good. Donna had a great recipe last winter for a spicy dip, and fightformy love has some awesome chinese recipes that taste good, are easy to make, and healthy.

through all of it the most important thing is to stay hydrated, and eat what and when you can, and of course - attitude - keep your head up, you will get through this!

Best of luck - Sherrie
(freezing in Minnesota)

bunny62
Posts: 8
Joined: Mar 2009

Someone else from Minnesota? I thought I was the only one. My doctor dosen't know what to do. I am her only patient. I have nausea also and dosen't look like I am a candidate for radiation as I have extensive Bowens disease and whole canal is diseased. I also have multi-focal hpv. Any suggestions would help. I am new to this site and this is my first reply. Thank you.

christinecarl's picture
christinecarl
Posts: 543
Joined: Sep 2009

Bunny,

I am also in MN I really like my Dr. I am not sure if you are in the Cities, but I can give you his name if you are looking for a new Dr.

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

just where are you christinecarl? I loved were i was....except that I would have preferred a warm island....

oh....you meant doctors....lol..i liked mine too...

christinecarl's picture
christinecarl
Posts: 543
Joined: Sep 2009

I am in Minneapolis. I see Dr. Sborov at MOHPA in Edina. The cold was hell on chemo, felt like my eyes would sometimes want to freeze shut, glad I am done. Where are you at?

daydreamer110761's picture
daydreamer110761
Posts: 497
Joined: Dec 2008

I was seeing Dr. Cheema at the St. Johns Cancer Center in Maplewood. Very nice crew over there. Gotcha on the eyes, scared the you know what out of me the first time it happened!

bunny62
Posts: 8
Joined: Mar 2009

My doctor is Dr. Ann Seltman(colon-rectal doctor). I also saw Dr. Robert Madoff at the UofM.I live in Oakdale. Please contact me and thanks in advance. I joined months ago but I am still learning my way around this board.

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

I am also in the Minneapolis area. There are a few of us on the board. I would recommend getting a second opinion. "my doctor doesn't know what to do"-- this is a red flag to seek out someone else!!

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I am also in MN. I would not be comfortable if I was my doctor's only patient. You want a specialist that has a LOT of experience. Feel free to PM if you'd like information on other doctors.

If you are in the metro or surrounding area, MOHPA is a big group and they have a lot of doctor's to choose from.

Robert W
Posts: 18
Joined: Aug 2009

Thanks guys I really appreciate your experience. I will try some of the sour candies. I do enjoy chinese food but been fearful of the spices. I think I will give it a shot. Once again, many thanks

thready's picture
thready
Posts: 475
Joined: Sep 2009

Robert
I am no expert, but after my first treatment with folfox I got really sick. If you get dehydrated the nausea and vomiting goes crazy.

I talked with my onc. and she has given me rx for ativan, a nausea patch and phenergan along with emen and other stuff they give during chemo. She also said that I should come in for fluids. Ask your doctor for IV fluids. I have learned that if home health comes in to do this insurance will not pay for just fluids, but will pay if the doctor adds something such as electrolytes etc. Make sure you talk with your doctor, call them as soon as possible.
Best wishes,
Jan

Robert W
Posts: 18
Joined: Aug 2009

I appreciate your comments. I am beginning to realize that the more fluids I take the lesser the nausea. I have been drinking of all things Coke. I think it has helped to some degree
Thanks again

Fight for my love
Posts: 1346
Joined: Jun 2009

Hi Robert,my husband is going to have the round 2 of 12 Folfox next week.At first round he lost appetite for a couple of days and he got heart burn for a couple of days(solved by Pepcid that members suggested here).I understand this cocktail chemo is tough and knocks you down pretty quickly.But like everybody says you got to stay hydrated and try to eat as much as you can and as often as you can.When my husband really doesn't want to eat,I will make sure that he at least stays hydrated and drink Ensure plus(it's a nutrition drink full of protein and other vitamins,you can find them in grocery store and pharmacy).Protein is the best way to help with fatigue.I also make some chinese soup for my husband when he doesn't like to eat.Here is the recipe:Tomato Egg drop soup

Chop tomato to small pieces,then put canola oil in wok,then then put some Chinese shallot in the oil,when you can smell the smell of the shallot,put the tomato in and stir.When you can see the tomato is well cooked,(This means you can see tomato pieces are soft and juicy),then put water in,wait until the water is boiled,then put salt,white pepper,put the scrambled egg in the soup,then use a big spoon to push the egg a little bit,this way the soup will get even.When the soup is boiled again,it is done.(don't overly boil the soup,because the egg drop will get hard)

PS:If you don't like vege in the soup,you can just make plain egg drop soup.You can just put oil and Chinese shallot in the wok first,then put water in,wait the water boiled,then put scrambled egg in,salt and white pepper in.Mix them until the soup is even.Before you serve it to family,if you and your family like sesame seed oil and cilantro,put them in the soup,it is very tasty.

Hopefully this recipe is going to be helpful.Good luck to you with the rest of the treatment.

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

Robert, there is only one thing worse than doing Oxal/Leuc/5fu....thats not doing it. It is the most sickening cocktail I have ever had and I have had a few. It will make you gag,puke,spit,choke,shake,freeze,cry,vent,cuss,stomp,pee in your pants, poop in your drawers, well you get the message, but it will save your life...cut and dry it will save your life, and it doesn't matter the quality of life you have after chemo, at least there is a life, and its quality let me tell ya. I did the same chemo as you are and I stayed sick with nausea and neuropathy till the end. but it saved my life. Just keep the onc up to date with every abnormal ache and pain and above all don't suffer, they have meds to take care of everything.Use them......

Now, bunny62, if your Dr has only 1 patient and its you, theres a great big fat reason for that.....She hasn't a clue what in the crap shes doing......RUN, don't walk, RUN as fast as you can to the nearest cancer facility and get some real help before you end up a statistic and the Dr ends up batting 0%. I wouldn't care if it was my sis or my mom if she didn't know what she was doing then she wouldn't be using me as a guinea pig...If you have to fly to get somewhere do it......and please keep us informed of your journey, we care about your care....{{{{{{hugs to you both Robert and bunny62}}}}}}}.....Buzzard

Robert W
Posts: 18
Joined: Aug 2009

You are the second person to speak of chinese style cooking. I will give it a shot. I have been drinking ensures and my wife make a malt with high protein from GNC. I try to drink at least one or two glasses a day. She loads the malt with ice cream and banana. (sometimes other fruits). I skip the ice cream when I am getting the chemo (cold) and my wife warms up the milk.

shrevebud's picture
shrevebud
Posts: 106
Joined: Aug 2009

Hi Robert:

I am stage IV and have been fighting this for coming up on three years now. I have been through nearly a full course of the medicines you are on. After nearing the end of this regimine my oncologist stopped the treatment because the neuropathy was spreading up my hands - I already had it in my feet and to this day one of my feet is still affected by it - my hands got ok after we stopped the Oxaliplatin. Emend for nausea is one of the more expensive drugs. I took a drug called kaytril ? on a sample basis - it seemed to work better than compazine. I also had IV nausea med before my treatment and that helped a lot. In my state marijuana in any form is not legal. Since medical marijuana (the smokeable kind) is not available in NY, you might ask about Marinol - the pill form - it might be legal. Just some suggestions. How are you doing with the cold effects? That can be really challenging too. I'm on different medicines now and am having problems with low appetite - sometimes I just have to make myself eat so I understnad what you are talking about. Just remember you can get through this and there are a lot of good people on this forum with some good advice. I often say I wish I had come across this board when I first got diagnosed. Anyway, I will be remembering you in thought and prayer and hope that you get over this rough spot soon. Take care. Roy

Robert W
Posts: 18
Joined: Aug 2009

Hey Roy..I appreciate your comments.As I sit here I am experiecing some nausea. I try not to give into it but the fact is it is tough. Prior to giving me the chemo they load me up with an anti-nausea drug Sofron? If works for the first few days and then it is down hill from there.I do take the generic for twice a day but I am not sure that it helps. It is like a roller coaster. I do drink these high protein shakes (GNC) and that seems to boost my intake.

P_I_T_A's picture
P_I_T_A
Posts: 133
Joined: Oct 2009

Looks like we'll be roughing this out together. I'm on the same FOLFOX Tx. Just got my pump unhooked for Tx #1 yesterday. Mine wasn't too bad as far as side effects. I did get nausea around the afternoon of the 3rd day. My onc gave me Zofran and Compazine to help with the nausea. I took a Zofran before I went to bed the 1st night and had no morning sickness the next day (took the preventative approach.) I didn't do the evening Zofran the second day, and by lunchtime I was feeling a little sick. Took a Compazine and felt better a little later. So, looks like evening Zofran is in the mix for pump days at least. CAUTION: If you do this take a stool softener or eat something that will keep you moving(unless you're experiencing diarrhea), cause the day 3 constipation was not fun. My main side effect was fatigue. I can't remember the last time I slept this much during a 3 day span (as an infant maybe)? Like most folks usually slept 5-6hrs a day before Dx. A little chemo head too, but I can manage to post messages so it must not be too terrible. Hang in there, we'll knock this out together.

-DJ

booboo1964
Posts: 7
Joined: Oct 2009

Emmend helped me the most. I had 8 sessions May-Aug. 2009 The last 2 i skipped the oxaliplatin. The nueropathy and mouth sores were too much for me. I did have the 5-fu for the full 8 treatments.. Still have the nueropothy but I think it is getting better,very slowly.... I was put on Steroids and found fatigue was awful when you come off them.. I would start to feel good about 4 days before my next treatment started.. Talk to your Doc. Good Luck.

earied
Posts: 22
Joined: Aug 2009

Talk with your doctor's office or a social worker, you can apply to get the Emmend for free. I used it for the first 2 treatments that I didn't need it and the compazine was good. The diarrhea and fatigue was what I delt with. Ate a lot of bagels. I am a bread person. The neuropathy started but usually went away before the next round, but came to stay a month after treatment was done and is in my feet and fingers.

Ann

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I'm on round #2 right now (day #2 - I get unhooked tomorrow afternoon). It isn't as bad as round #1 so far. I got Emend this time, and I did not get the bolus of 5-FU before being hooked to the pump (my blood counts were really low).

First round I got the usual Decadron and Aloxi at the start of treatment. I had scripts for Zofran, Compazine and Ativan. You can't take Zofran for the first 3-days if they give you Aloxi - same drug family and it lasts for 3-days. So I took the Compazine. I had an allergic reaction to it. The Ativan isn't really a true anti-nausea drug, but anti-anxiety med, so it can really help with sleeping. I had such a rough time that on day 7 I went in for IV fluids and they gave me Kytril via IV. That helped a lot. On day 9 I was back for more.

This time I had the Decadron and Aloxi AND Emend. I'm having a much better time. I am still nauseated. But I don't want to die like last time.

If you feel you aren't getting enough fluids in - go to your oncologist's office. They'll get some fluids into you and that makes a big difference in how you feel. Also when you are dealing with severe nausea, it is hard to get a pill down. They can give you stronger meds through the IV and you won't have to take a pill.

Just make sure your doctor knows how hard this is on you. Speak up! You have to. They have a lot of different things to try, but only when you let them know all your side effects and how severe they are to you.

geotina's picture
geotina
Posts: 2071
Joined: Oct 2009

For what it is worth, my husband received some IV fluids and then an IV of Anzamet (sp) for nausea and he just completed his 12th round of the drugs you are getting plus Avastin. The Anzamet for nausea worked very well, he did not experience any nausea. During chemo, he liked to drink Canada Dry Gingerale if thats any help. Sorry you are experiencing so many problems. Hang in there.

anothersunrise's picture
anothersunrise
Posts: 8
Joined: Aug 2009

Hi Robert...sorry you are having such a tough time. I too had this same cocktail for 8 treatments along with radiation everyday for 30 days. I did not have as much nausea, but I did have some - along with neuropathy, extreme fatigue, loss of appetite, uncontrollable diarhea, pain, and anxiety. I even had an anaphylactic allergic reaction to the Oxali and ended up in ICU. I ended up having to switch to Cisplatin, 5FU, and Leukovorin in which I experienced much more nausea and a metal taste in my mouth. The only thing that I can say is hang in there because it will get better. Buzzard is right, it will save your life - I have anal cancer and my tumor was over 5cm. But now, my tumor is gone and my doctor is throwing the word remission around. Talk to your doc and by all means ask for drugs and take them!

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