side effects of Oxaliplatin, Leucovorin and 5-FU

Robert W
Robert W Member Posts: 18
edited March 2014 in Colorectal Cancer #1
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
«1

Comments

  • dianetavegia
    dianetavegia Member Posts: 1,942
    HI Robert, speak to your
    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
  • christinecarl
    christinecarl Member Posts: 543
    The first two weeks were
    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
    lizzydavis Member Posts: 893

    The first two weeks were
    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!

    Hang in there. It will get better.
    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.
  • butterfly23
    butterfly23 Member Posts: 256
    Hi
    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
    johnsfo Member Posts: 47

    Hi
    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

    nausea and vomiting
    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
  • just4Brooks
    just4Brooks Member Posts: 980
    Hi Robert
    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
    Robert W Member Posts: 18

    HI Robert, speak to your
    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

    Thank you
    Thank you Diane..I was planning to speak with my oncologist
  • Robert W
    Robert W Member Posts: 18

    The first two weeks were
    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!

    Thank you
    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
  • Robert W
    Robert W Member Posts: 18

    Hi
    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

    Thank you
    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
  • Robert W
    Robert W Member Posts: 18

    Hi Robert
    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

    thank you
    Thanks Brooks..unfortunately pot is not legal in NY. I will talk with my Onc about Emenmd. Thanks again
  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Treatments
    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
    coloCan Member Posts: 1,944 Member
    Hi Robert
    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
    Robert W Member Posts: 18
    coloCan said:

    Hi Robert
    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

    Thank you
    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
    daydreamer110761 Member Posts: 487
    Robert W said:

    Thank you
    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

    try
    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
    bunny62 Member Posts: 8

    try
    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)

    I hate this cancer
    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.
  • thready
    thready Member Posts: 474
    Treatment side effects
    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
  • Fight for my love
    Fight for my love Member Posts: 1,522
    Hi Robert,my husband is
    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.
  • christinecarl
    christinecarl Member Posts: 543
    bunny62 said:

    I hate this cancer
    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.

    Bunny,
    I am also in MN I

    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.
  • Buzzard
    Buzzard Member Posts: 3,043 Member

    Hi Robert,my husband is
    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.

    To the both of you Robert and bunny62
    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
  • shrevebud
    shrevebud Member Posts: 105
    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