side effects of Oxaliplatin, Leucovorin and 5-FU

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  • daydreamer110761
    daydreamer110761 Member Posts: 487

    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.

    and...
    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...
  • P_I_T_A
    P_I_T_A Member Posts: 133
    Hang in there
    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
    booboo1964 Member Posts: 7
    folfox
    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.
  • Robert W
    Robert W Member Posts: 18

    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)

    Thanks
    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
  • Robert W
    Robert W Member Posts: 18
    thready said:

    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

    Thanks
    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
  • Robert W
    Robert W Member Posts: 18

    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.

    Thanks
    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.
  • Robert W
    Robert W Member Posts: 18
    shrevebud said:

    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

    Thanks
    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.
  • Patteee
    Patteee Member Posts: 945
    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.

    I am also in the Minneapolis
    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!!
  • christinecarl
    christinecarl Member Posts: 543

    and...
    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...

    I am in Minneapolis. I see
    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?
  • earied
    earied Member Posts: 22
    Emmend
    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
    Kathryn_in_MN Member Posts: 1,252
    I'm on round #2 right now.
    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.
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252
    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 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.
  • geotina
    geotina Member Posts: 2,111
    Anzamet
    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.
  • Holdtight
    Holdtight Member Posts: 151

    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

    HI Robert!
    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.
  • daydreamer110761
    daydreamer110761 Member Posts: 487

    I am in Minneapolis. I see
    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?

    Woodbury mn
    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!
  • sfmarie
    sfmarie Member Posts: 602
    Robert W said:

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

    Robert
    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
  • bunny62
    bunny62 Member Posts: 8

    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.

    Hi out there in Mn.
    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.
  • anothersunrise
    anothersunrise Member Posts: 8
    Oxali, 5FU, and Leukovorin
    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!