FOLFOX side effects??? I dont know...can you tell me?

idlehunters
idlehunters Member Posts: 1,787
Howdy All! :-)

I just started Folfox last week and I thought it was going ok....but all these "new" things are coming up and I don't know if they are related? ....side effects??? are really what to think...and of course who better to tell me than those that have lived it!!! God...I'm blessed!!
I have refused to not eat cold cause I love cold so I have not gave up ice cream....or soda....or ANYTHING cold...and it was a little annoying the first 3 days but not at all anymore....so thats good! (MAGS...you still laughing?? LOL)

ok...wierd stuff happening.... mouth peeling skin off gums....swelling gums at times...sore gums and hard to eat at times...this all comes and goes.

I have had heartburn the past 2 days...NEVER get heartburn. anything I eat I get a stomachache and literally belch a mouthful back out....sorry for the graphics. Then I'm good.

The big thing is my butt has been bleeding. Bright red blood like hemroid blood. BUT there is small amounts of blood IN the stool too. Not a lot but enough to notice. I might mention that I am eating an obscene amount of food at this time and it is causing me to poop...A LOT...cause its a LOT of food!! I eat all night long because of these Steroids.....and I have to be on them 2 more weeks so that aint gonna stop soon. You think all this eating and pooping is causing the bleeding or is it FOLFOX related??? Does Folfox cause gastric symptoms. Oh my God I am so full and cant stop eating.....LOL...its really retarded!!!

So...If you are Folfox knowledgeable I sure would appreciate some input! Thanks guys!

Jennie
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Comments

  • christinecarl
    christinecarl Member Posts: 543
    I had really bad heartburn
    I had really bad heartburn while going through Folfox, I used Tagament a lot. Cold things made me feel like I was drinking shards of glass, I missed cold beer the most. I lost my sense of taste so eating a lot was not an issue, I did eat the amount I needed and stuck to comfort food. You definitely want to call your Doc about the blood.
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Jennie
    I have no personal experience with Folfox, but have read that about 40% of those taking it have mouth sorness problems.

    As for the heartburn...too much food in the stomach/over eating can cause heartburn. As you mentioned the Steroids have given you a crazy appetitie, that may be a contributor.

    I hope that for these issues, and particularly the bleeding, you have contacted your doc for his/her assessment. When on chemo, no issue is too small to bring to their attention if it is out of the norm.

    Before I let you go to get on to more helpful responses, I was wondering when you are scheduled for cyberknife.

    Prayers for all that you are doing to be totally successful.

    Hugs. Luv ya!

    Marie
  • maglets
    maglets Member Posts: 2,576

    Dear Jennie
    I have no personal experience with Folfox, but have read that about 40% of those taking it have mouth sorness problems.

    As for the heartburn...too much food in the stomach/over eating can cause heartburn. As you mentioned the Steroids have given you a crazy appetitie, that may be a contributor.

    I hope that for these issues, and particularly the bleeding, you have contacted your doc for his/her assessment. When on chemo, no issue is too small to bring to their attention if it is out of the norm.

    Before I let you go to get on to more helpful responses, I was wondering when you are scheduled for cyberknife.

    Prayers for all that you are doing to be totally successful.

    Hugs. Luv ya!

    Marie

    me????
    hhahaaa Jens....far be it from to say told you so.....

    ahhhhh baby girl....soo sorry....yup dat cold thing is a kicker....and for sure the mouth sores and peeling....we had a local doctor who concoted a mouth wash and you just had to ask for it....unfortunately I do not know the ingredients....aloe for sure and some kind of pain killer

    as for bum blood? nope had none of that...but heartburn for doubletriple sure....

    so kiddo....I am going to look up my oxy journal but will be gone for a bit ...up to the camp

    Jen wishing you only the very best....I really do not like this drug very much but is is doable....I always say....if I can do anyone can do it cuz I am a wimp

    hugs and prayers for you girl

    mags
  • idlehunters
    idlehunters Member Posts: 1,787

    Dear Jennie
    I have no personal experience with Folfox, but have read that about 40% of those taking it have mouth sorness problems.

    As for the heartburn...too much food in the stomach/over eating can cause heartburn. As you mentioned the Steroids have given you a crazy appetitie, that may be a contributor.

    I hope that for these issues, and particularly the bleeding, you have contacted your doc for his/her assessment. When on chemo, no issue is too small to bring to their attention if it is out of the norm.

    Before I let you go to get on to more helpful responses, I was wondering when you are scheduled for cyberknife.

    Prayers for all that you are doing to be totally successful.

    Hugs. Luv ya!

    Marie

    Thanks Chris and Marie..
    They actually gave me something stronger than Tagament in case of stomach aches but it REALLY made me feel icky so I didnt take anymore. I do have Tagament. I am going to eat some of those and see if it helps.

    Marie..... I went in last week and was fitted for my Cyberknife "mask". They are working on my program now to zap both areas in unison which they are pushing for the beginning of next week. I have to stay on those darn Steroids for a week past Cyberknife so I am hoping to get thru this as soon as possible.

    You take care.

    Jennie

    I will be calling doc tomorrow about blood because that bothers me.
  • RobinKaye
    RobinKaye Member Posts: 93
    Belching
    During my husbands last three rounds he had the belching, sounded almost like hiccups and it was all.the.time! Drove the poor man crazy. I'm surprised you're on steroids the whole time, Jim only had them at infusion and they made him feel good until they wore off two days later when the pump was disconnected.

    Robin
  • idlehunters
    idlehunters Member Posts: 1,787
    RobinKaye said:

    Belching
    During my husbands last three rounds he had the belching, sounded almost like hiccups and it was all.the.time! Drove the poor man crazy. I'm surprised you're on steroids the whole time, Jim only had them at infusion and they made him feel good until they wore off two days later when the pump was disconnected.

    Robin

    Hey Robin
    Thanks for input..... just wanted to tell you I am on Steroids for "another" matter. I am preparing for a Cyberknife treatment next week and have to stay on them steady until thats over. They are actually not giving me ANY at infusion since I am already on them daily. Take care

    Jennie


    HEY MAGS....... Thanks for having my back....appreciate it! Really love you my friend!
  • smokeyjoe
    smokeyjoe Member Posts: 1,425

    Hey Robin
    Thanks for input..... just wanted to tell you I am on Steroids for "another" matter. I am preparing for a Cyberknife treatment next week and have to stay on them steady until thats over. They are actually not giving me ANY at infusion since I am already on them daily. Take care

    Jennie


    HEY MAGS....... Thanks for having my back....appreciate it! Really love you my friend!

    Jennie, before you take the
    Jennie, before you take the tagamet I would check with the onc.....tagamet is cimitidine...check the label. I know my oncologists pharmacist had a talk with me about the cimitidine....I was not to take it till I was off chemo. for a certain amount of time day or two after. Something to do with how your liver handles the cimitidine and somehow it affects how effectively your liver clears the chemotherapy drugs from your body. I was on folfiri...not folfox....so I don't really know.
  • abrub
    abrub Member Posts: 2,174 Member
    I developed an anal fissure
    OOOWWW! Painful! Folfox affects all tender skin areas. Take care of your bum now - because a fissure won't heal while you are on Folfox. It took me till a month or so after finishing chemo before I could "go" without turning fetal.

    My mouthwash was equal parts baking soda and salt. I'd put a heaping teaspoon in some (5 oz) of lukewarm water, and rinse with it as often as I could.

    Alice
  • idlehunters
    idlehunters Member Posts: 1,787
    abrub said:

    I developed an anal fissure
    OOOWWW! Painful! Folfox affects all tender skin areas. Take care of your bum now - because a fissure won't heal while you are on Folfox. It took me till a month or so after finishing chemo before I could "go" without turning fetal.

    My mouthwash was equal parts baking soda and salt. I'd put a heaping teaspoon in some (5 oz) of lukewarm water, and rinse with it as often as I could.

    Alice

    Gotcha Alice
    I am all over that mouthwash. I am using straight brown Listerine. It burns but numbs area and actually ends of feeling good!
    Thanks

    Jennie
  • abrub
    abrub Member Posts: 2,174 Member

    Gotcha Alice
    I am all over that mouthwash. I am using straight brown Listerine. It burns but numbs area and actually ends of feeling good!
    Thanks

    Jennie

    Be careful of the Listerine
    if it contains alcohol (most mouthwashes do) it might be doing more harm than good.

    Take care, Jennie. I feel for you!

    Alice
  • steved
    steved Member Posts: 834
    Oxaliplatin
    Oxaliplatin is a bit of a nasty drug for some of us- I tend to tolerate chemo well but had to stop oxaliplatin after an allergic reaction and have to say I qas quite pleased as was struggling with the developing neuropathy. As for other effects mouth ones are very common, gastritis symptoms are very common (and I can't see any interaction between it and cimetidine- though there are some in vitro (test tube studies) that suggest cimetidine may reduce the toxicity of oxaliplatin while others suggest it helps stop tumour meetastasising, so not sure what to make of that (probably on balance not a good or bad thing).

    The rectal bleeding is more concerning- it is a rare reported side effect of oxaliplatin (the teechnical term on the bottle and leaflets is hematochezia). It could also be something unrelated eg piles, so best to get checked out on that front.

    Report all side effects to your team and enjoy all that food!

    steve
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    Good Thing There (Ain't) Room Service....
    ...or we could write "GoodYear" on the side of you:)

    LOL!

    C'mon, Jennie...that was a pretty good one.

    Do they make Sansabelts for women?

    LOL!

    Remember to chew - and don't lose a finger:)

    LOL!

    Okay, I'm done...hoping all goes well with your treatment and and that the 'roids will settle out of your system.

    One last one...the next time you wanna eat - remember what Nancy Regan said in the 80's?

    "Just Say NO."

    LOL!

    I'm outta' here.....love ya'...

    -c
  • steveandnat
    steveandnat Member Posts: 886
    similiar side effects
    Ive been doing folfox for years and similiar side effects. A lot of belching...the loaded the better for relieve...can be embarrassing at times. My heartburn goes down after about three days from treatment. Have to watch spicy foods. I gargle with a prescription mouth wash for sores. The cold bother me for a few days during treatment. I try to avoid cold during that period. Pray for you and side effects get better. Jeff
  • relaxoutdoors08
    relaxoutdoors08 Member Posts: 521 Member
    Think Mouthsore, Heartburn, Burning Gut
    Then Get a Prescription for Miracle Mouthwash. You Swish, Gargle, and Swallow to heal your mouth, throat, stomach and gut.

    Thinking of you with with best wishes as you go through your treatment. Prayers for good results.
    NB
  • pepebcn
    pepebcn Member Posts: 6,331

    Think Mouthsore, Heartburn, Burning Gut
    Then Get a Prescription for Miracle Mouthwash. You Swish, Gargle, and Swallow to heal your mouth, throat, stomach and gut.

    Thinking of you with with best wishes as you go through your treatment. Prayers for good results.
    NB

    I have been twice in folfox and different issues each time !
    stomach issues ,mouth, vision , neuropathy, nose bleedings! so you can expect anything.
    Roids are also a big problem as I used to go to the toilet many times , so I thing don't have to worry too much about it!
    Hugs and hope you feel better very soon!
    Praying for it!
  • idlehunters
    idlehunters Member Posts: 1,787
    pepebcn said:

    I have been twice in folfox and different issues each time !
    stomach issues ,mouth, vision , neuropathy, nose bleedings! so you can expect anything.
    Roids are also a big problem as I used to go to the toilet many times , so I thing don't have to worry too much about it!
    Hugs and hope you feel better very soon!
    Praying for it!

    Thanks everybody!
    Craig...... You are just being TOO funny..... You know me tooooooo well with that room service comment,,,,had me really laughing dude! I am pretty sure now that that all of this just goes with the ball of wax and knew I could count on you guys for that peace of mind.....thanks again........ ONWARD!

    :-). Jennie
  • omrhill
    omrhill Member Posts: 125

    Thanks everybody!
    Craig...... You are just being TOO funny..... You know me tooooooo well with that room service comment,,,,had me really laughing dude! I am pretty sure now that that all of this just goes with the ball of wax and knew I could count on you guys for that peace of mind.....thanks again........ ONWARD!

    :-). Jennie

    funny
    Craig's comments remind me of one of my favorite ( and fitting!): what did zero say to eight? "Nice belt."
  • Nana b
    Nana b Member Posts: 3,030
    omrhill said:

    funny
    Craig's comments remind me of one of my favorite ( and fitting!): what did zero say to eight? "Nice belt."

    I had to use the miracle
    I had to use the miracle mouth wash, my once perscribed it, google it. No blood in the stool. I only had blood with constipated like on vicodin. I was on protonix the entire time I was on folfox, presribed by my ONC. I am actually taking some now, it helps with XELODA. The cold problem for me never went away, I had to wear gloves while in the fridge. I drank room temperature lemonaide. I had nose bleeds and clots. The hands turned the color purple. half my hair fell out. Other then that, I was okay :}
  • thxmiker
    thxmiker Member Posts: 1,278
    Folfox must haves
    I am sorry to hear about the issues from FolFox. As a vet of Folfox, these are my recomendations:
    1: Alcohol free Baby Wipes
    2: Soft Toilet Paper
    3: Ginger - Dried, candy, cookies, what ever form you like
    4: Nupercanal - My hiney got sooooo acidic that this forms a barrier and helps not to get burned.
    5: Ove-Glove - These are kevlar gloves that you can take things out of the oven or the freezer with. They are still useful today.
    6: Elektrolyte replacement drink
    7: Bananas - help replace the potassium and elektrolytes.
    8: Balanced diet and Exercise

    Keep a good attitude and diet. You will do well.
    Best Always, mike
    PS Sending good thoughts and prayers your way.
  • idlehunters
    idlehunters Member Posts: 1,787
    thxmiker said:

    Folfox must haves
    I am sorry to hear about the issues from FolFox. As a vet of Folfox, these are my recomendations:
    1: Alcohol free Baby Wipes
    2: Soft Toilet Paper
    3: Ginger - Dried, candy, cookies, what ever form you like
    4: Nupercanal - My hiney got sooooo acidic that this forms a barrier and helps not to get burned.
    5: Ove-Glove - These are kevlar gloves that you can take things out of the oven or the freezer with. They are still useful today.
    6: Elektrolyte replacement drink
    7: Bananas - help replace the potassium and elektrolytes.
    8: Balanced diet and Exercise

    Keep a good attitude and diet. You will do well.
    Best Always, mike
    PS Sending good thoughts and prayers your way.

    Wow....great advice
    Thanks....... I will definitely be trying those!

    Jennie