CSN Login
Members Online: 13

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

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

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

christinecarl's picture
christinecarl
Posts: 539
Joined: Sep 2009

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's picture
Lovekitties
Posts: 2942
Joined: Jan 2010

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's picture
maglets
Posts: 2406
Joined: Jun 2006

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's picture
idlehunters
Posts: 1792
Joined: Apr 2009

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
Posts: 93
Joined: Nov 2011

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's picture
idlehunters
Posts: 1792
Joined: Apr 2009

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
Posts: 1428
Joined: Feb 2011

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.

zazaka
Posts: 2
Joined: May 2013

I have just had one FOLFOX treatent 9 days ago and I can't stop with the hiccups or what I call spams........does this ever go away??  Doctor told me the problem is the chemical Oxaliplatin and they are going to reduce the dosage by half at the next infusion scheduled for May 21.  Unless I still have this issue in which case they will delay one week........thank you anyone...Zack

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

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's picture
idlehunters
Posts: 1792
Joined: Apr 2009

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's picture
abrub
Posts: 1531
Joined: Mar 2010

if it contains alcohol (most mouthwashes do) it might be doing more harm than good.

Take care, Jennie. I feel for you!

Alice

steved
Posts: 836
Joined: Apr 2004

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

zazaka
Posts: 2
Joined: May 2013

So how long did it take for your ONC to stop the Oxaliplatin.......my issue is sever hiccups or spasms......Baclofen does and does not work.........did they have to replace it with some other drug........

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

This thread is old, a few deceased.  Please PM the person or start a new thread.  and look at dates before posting old threads.  Thanks

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

...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's picture
steveandnat
Posts: 887
Joined: Sep 2011

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
Posts: 521
Joined: May 2011

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's picture
pepebcn
Posts: 6352
Joined: Aug 2010

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's picture
idlehunters
Posts: 1792
Joined: Apr 2009

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
Posts: 125
Joined: May 2012

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

Nana b's picture
Nana b
Posts: 2912
Joined: May 2009

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's picture
thxmiker
Posts: 1225
Joined: Oct 2010

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's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Thanks....... I will definitely be trying those!

Jennie

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Mike

I agree 100% with your notes.

Good Stuff

Joe

pokismom's picture
pokismom
Posts: 153
Joined: Jul 2009

Hi Jennie,
You sound just like me, the roids make me have this unsaciable hunger, I feel like I'm never going to be full and I'm looking up recipes all night. My kids hate to spend the day with me on binge days cause they say I make them fat. I did folfox in 2007 and remember when I would sit up in bed I would let out the biggest burp ever, I even had acid reflux from folfox after I was done with it. I'm probably going to be on the same route as you because they're not sure if the folfiri is still working. Had four mets in my liver and I did sbrt a couple of months ago for lung mets. I also have bleeding from hemmoroids or something with itching, been using some Vaseline and sometimes prep h but warm butt soak works well also! Take care
Aloha
Donna

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

So very good to see your face.....been a while....thanks for the input......
It seems there's a LOT of little things with this Folfox but all have been manageable thus far. I have not been on any chemo for 10 months ....other than Vectibix,,,,,,and it was like taking nothing! So now my body has just got to get use to the poison again. That was like a little 10 month break so hey....I'm good! :-). You take care

Jennie

Luckygirl2
Posts: 308
Joined: Mar 2012

I wore gloves almost round the clock, prefer my water at room temp now thanks to oxi couldn't eat or drink or touch anything the least bit cool, felt like swallowing broken glass and the minute I opened the fridge without gloves, wow! Kept the baby wipes handy but I didn't have any blood issues. I had a mouthwash my pharmacy concouted but luckily never got the mouth issues. Still have the neuropathy in my feet my hands I think are back to normal. Thinking bout you!

Debbie

fatbob2010's picture
fatbob2010
Posts: 395
Joined: May 2012

I am on FOLFOX and have all the same symptoms that you have, just not the bleeding. Use gloves to go into the refrigerator (if I must) and cold anything is a NO NO. Gargle with a 50-50 salt baking soda in 8 ozs of water is helpful when done at least three times a day. Might find that a spritzer bottle of water (primitive bum wash) may be helpful as well. Hugs of strength and comfort to you...If I can do it (wimp at heart). Hopeful you can too.

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Can't believe you just mentioned the bottle......just tried that out this morning....all I can say is... AHHHHHHHHH.....man that felt good! Thanks

Jennie

Phil64's picture
Phil64
Posts: 461
Joined: Apr 2012

Jennie,

My doctor’s office covered the following side effects with me for FolFox.
1. Fatigue. They said that the fatigue is the most common side effect and usually starts when the infusion is completed (the portable pump is removed). I definitely experienced this as they warned and slept for almost 1-1/2 days.

2. Cold sensitivity. They said that this should go away a few days after the treatment ends (when the remove the portable pump). Suggested I could try a little cold on my lips, and then if that is okay, take some in my mouth and swoosh, and if okay, try swallowing, etc... In other words, take it slow and see how I do. I did experience this, where drinking cold drink caused my throat to feel bad. I did try to avoid cold things for the first few days like they suggested.

3. Sores in mouth. They warned me that sores in mouth could happen and suggested I rinse a few times each day with luke warm water, 1/4 teaspoon of baking powder, and 1/8 teaspoon of salt. Also, avoid alcohol based mouth wash; use gentle brush, tooth paste with fluoride.

4. Constipation. They suggested I may have constipation a few days during and after the pump is removed. I did experience this and had to go a lot (a little each time) and it was painful.

5. Diarrhea. They also warned that diarrhea could follow the constipation. They said that at the first sign of this I needed to take Imodium. And if that didn't help to call a.s.a.p.

6. Fever / infection. Because red blood count may be lowered I would be susceptible to infection. They warned me to take my temperature and if over 100.5 to call them immediately.

Also interesting to me, he explained that FolFox is actually an acronym for:
Folic Acid, 5-FU, and Oxaliplatin.

The other thing he was going to give me besides the FolFox was Calcium and Magnesium to help minimize the neroapathy from Oxaliplatin…

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Thanks for all that! Appreciate it. I stopped with the Listerine I was using cause Alice was talkin bout the alcohol interaction..... Pretty sure it was making things worse so that was a great help. Mouth not as raw as I started using miracle mouthwash from doc. I guess this is all just learn as you go as with anything new. I just am so glad I have people like y'all with the experience to make this a much better experience. Take care sweetheart....and nice pic!

Jennie

dmj101's picture
dmj101
Posts: 526
Joined: Nov 2011

Phil has got you covered.
I had the mouth issue only the 1st few days while on oxy..
Hated it.
The hot and cold seems extreme when the temp is 100 degrees... doesn't it..
I somehow was able to eat jello cold but not icecream and occassionally was able to tollerate an ice pop... I used gloves to open freezer and take anything out.. sometime from the fridge too.. most everything at room temp..
be carefull of air conditioning too.. cold floor on bare feet.. ouch...
Seriously watch for neuropathy and report to onc as soon as it starts. don't be a marter. like I was.
I craved red meat..
but I do recall gass issues.
Also anything open will not heal well so if you are bleed**** from an unhealed surgery or a new cut expect it to remain raw.. oxy hinders healing.. my barbie but incission never healed properly while on oxy.. it seemed to heal up when they started cutting back on the oxy and then done with it.. I don't know may have been coincidence..
I also had a runny nose and still do..
Hope this helps.. Oxy is a very unkind drug..
Donna

Sundanceh's picture
Sundanceh
Posts: 4298
Joined: Jun 2009

Absolutely, Phil:)

Yes, Jennie - ask them for "The Mags." It is Magnesium Sulfate - if it works for you, it will really help the cold sensations in the mouth - you could have a margarita right out of infusion, LOL! (Actually, no kidding).

It will help ease some of the other neuropathy - wuill lessen it but not totally eliminate it, but it will help.

Does not work for everyone - but if your number is called, it will make your ride alot easier and give back more quality to your life while on the treatments.

"If I'm lyin' - I'm dyin'."

You know Jennie, it's summer time in Texas - and as such, it's "Hotter Than Hell" - I was just thinking how one of those frozen Cabo concotions would taste on a hot day like this? No patio though - inside to the A/C.....

I often think of those two Fall days we spent out on that patio - laughing and pretending that there wasn't a care in the world...that was a special time...and always will be:)

-c

-Me:)

joemetz's picture
joemetz
Posts: 493
Joined: Nov 2011

Jennie

there is a lot of great info and feedback in this string.
i won't repeat everything, but i will share what i've been through.

I've had 23 treatments of FolFox 6 with Erbitux.
(Oxiliplatin, 5FU, leucavorin)

they have had to add magnesium pills for me to take every day as low magnesium is a side effect that caused concern for my docs.

the mouth sores got so bad that they stopped all the chemo for 3 weeks.
my hands and feet tingle ALL the time... and worse in the evening.
soft finger nails and toe nails that break very easily... and some problems with balance.

Personally, i would recommend exchanging the over eating for over drinking of water, gatoraide and juice. (don't JUST drink water... but get lots of each)
I would drink more and more liquids with each meal.
also, the steroids are what's keeping you awake at night as its hard to sleep a long time while on those.

mouth sores as well as nose sores and nose bleeds were/are a problem for me.

as for the bleeding... i agree with everyone else... contact the doc on that!

I hope you can struggle through this and you're able to feel better soon.

lastly... some 421 is definatly helpful!!!

pete43lost_at_sea's picture
pete43lost_at_sea
Posts: 3915
Joined: Nov 2010

its so long ago, i wish well over a year since i finsished and my balance and nerve damage are almost 99% recovered.

my serious advice is to get serious advice from a really really good naturopath, i did folfox with tcm and supplements for gut and liver and the rest ie slippery elm, gut relief, probiotics. for me chemo was a none event, except for the steroids and sleeping and mood issues. so what these, you can get the steriods reduced and maybe even the antinausa stuff could be cutout.

I liked having a good naturopath heal me from some of the damage chemo was doing, just something to think about.

i had tcm while on folfox everyday, except infusion days.

some of your reactions sound serious, so i would pressure the onc.

hugs,
pete

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Hey Pete..... I am still under the care of a TCM who I adore! I actually have an appointment with him Tuesday to start sum new things.....tweak sum things.....and manage the symptoms of this new Folfox crappola. I know he will do me sum good because he always does. I am in total agreement as far as the benefit of TCM to aide chemo side effects. The most serious thing going on right now is the anal bleeding. That is ALL related to those nasty steroids that I HAVE TO TAKE in prep for Cyberknife. Luckily this is temporary....just gotta put up with the "crap" .....for now. Hugs my friend.

Jennie

tanstaafl's picture
tanstaafl
Posts: 969
Joined: Oct 2010

Jennie, we used this formula for 5FU-folate damage ~2 yrs ago to help repair oral and GI mucosal membranes:

to THK: "relined - L-glutamine is a preferred nutrient for restoring mucosal cells and epithelial surfaces - including mouth and gut. We mixed some glucosamine, ~1/2 cap 500 mg, niacinamide ~1/2 cap 500 mg, lysine ~1/2 cap 500 mg, [1/2 cap zinc gluconate] and [magnesium/]sodium ascorbate 1/4 tsp or 1 gram ca, with 2-3 tsp glutamine. My wife would hold a little dab on the sores 10-15 minutes and then swish, and swallow. We also got fanatic about removing synthetic folate sources from anywhere - bread, multivitamin (mixed own from individual components, or a few multis use leucovorin or L-5MTHF for B9 instead of folate) while on 5FU-LV."

I'd grind and mix a batch with spoons, and store about 1/2 oz of mix powder in shot glasses, sealed with Saran wrap to keep air and moisture at bay for 1-2 weeks.

Also, previous 2010 remarks.

idlehunters's picture
idlehunters
Posts: 1792
Joined: Apr 2009

Who would have thunk it...... Homemade Miracle Mouthwash!!! Love that shot glass idea and yup.... I'm gonna set me some up tomorrow. My TCM doc said he will add to that idea so I can't wait to see what he is adding to the mix. Will let ya know tho!

Jennie

tanstaafl's picture
tanstaafl
Posts: 969
Joined: Oct 2010

Yeah, Jennie thought you'd like that. I made the freshest looking, sparkliest shot glasses, sterilized in boiling Everclear strength vapors. This gets 'em real clean for oils and hard water soap salts, I have a legal, low tax option, and I like the Real Thing better than methanol or isopropyl alc. ;>

herdizziness's picture
herdizziness
Posts: 3402
Joined: Apr 2010

Did anyone mention the jaw pain? I see most everything else is listed, but I don't remember seeing that. The Oxy gave a jaw pain, just for the first few bites and then it goes away, it's always a surprise when you forget about the jaw pain and then go to eat and there it is, I think it was a month or two into it that the jaw pain hit.
And the soft wet toilet wipes? Yep, those are sure nice, go for the name brands though, they are indeed soft. Hope your effects are mild, mine were, but I sure hated the amount of days waiting to drink something cold, for me it started out at least 5 days before I could then increased to over 7 days, and I had the mag and (heck forgot the name of the other) but in any case they didn't make a difference in my being able to drink cold things, it was awful. I'm glad to see it isn't affecting you too bad.
Thinking of you as usual.
Winter Marie

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

However, since Jennie didn't mention having it, I didn't mention it in my posts. The jaw pain was horrendous, and yes, that is one of those "rare" side effects that they don't mention in advance.

Alice

Phil64's picture
Phil64
Posts: 461
Joined: Apr 2012

Yep, The doc did mention this as well and I did have pain when chewing, on occasion. It wasn't there all the time and it didn't seem to last too long for me but I did have this jaw pain he mentioned.

I'm going for FolFox treatment 2 on 7/5 (thought this would be better than bbq ribs :0)

fatbob2010's picture
fatbob2010
Posts: 395
Joined: May 2012

Round four is over and the pump was removed without incident. Each round seems to get more interesting with different little twists to hold my attention. In this case the nausea has been more persistent and troubling. Numbness (neuropathy) in the fingers is a little more intense but not debilitating. The chemicals affect the ability to swallow and drinking or eating cold things is like swallowing broken glass. Also, I found it tender to chew at times. Interestingly my lips and face seem to have some numbness as well which the Oncologist says he has not seen before and attributes to diabetes. Speaking of diabetes, the PCM doubled my meds to try and hold the blood glucose down. He said that the increase is not to be alarmed about over the short haul but not good over a long time.

Just got the date for the next scan...July 11, 2012 @ 0825 with a surgical consult to follow at 11:00. SCANXIETY to the max right now for us as we wait for the results. The Oncologist has scheduled two more rounds of Chemo post scan as well as more blood work just in case.

Hope this is helpful...((Hugs of caring))

relaxoutdoors08
Posts: 521
Joined: May 2011

FatBob2010,
My Mayo Oncologist had not heard of facial numbness either. After my 5th Folfox Treatment, I had an episode of "eye slammed shut", Jaw pain and jaw locked up" when I felt cold snow on my cheek Day One after finishing Oxy while I was on the 5FU Pump. I now have a damaged facial Nerve that causes my eye to be dry, my sinuses to hurt and drip, teeth feel like I had novacain at the dentist, and jaw pain. I am 1 year from finishing Folfox and I still have nueropathy on my hands and feet. But the facial nerve damage is most irritating.

My oncologist had not seen this but a fellow Oncologist had a patient with the same issues. It is an oxy effect not diabetes.

Prayers for a good scan July 11th.
NB

mskautz
Posts: 30
Joined: May 2012

Had my first round 2 weeks ago, my second is scheduled for the 3rd. I had the jaw pain and asked the nurse about it, she said it was because I triggered the nerve by eating something cold. I had had a turkey sandwich with cold tomato the first day. It went away after about a week but it would happen every time I ate something for the first 4 to 5 bites. Also for awhile when I would drink something cold it felt like I had something stuck in my throat on top, a sharp pain. Had the bleeding once or twice, very sore butt, have almost fallen 3 times, didn't know loss of balance was a symptom. Constipation was bad for a couple days, but if not that I have to deal with the other too much! Hair was thinning before chemo, Dr. said it was probably stress, now its really coming out, will shave it in a couple weeks. Had the heartburn and take Tums. didn't ask my Dr. about that, is Tums ok? The nurse said I would get extremely tired the day after the pump was removed but I got that that day and slept the day away. Had the nausea but the nurse said it's because I didn't take the nausea medicine right cause I thought I was supposed to take it if I got nausea, not before..dumb me. So if I got all these symtoms with the very first round I'm really in for hell I suppose cause I got lots more ahead of me, 5 1/2 more months. Some days I would feel ok but then I get real tired off and on, is this normal?? Does the hot weather add to the feeling of crappiness?

Phil64's picture
Phil64
Posts: 461
Joined: Apr 2012

My first FolFox treatment was on 6/21/12. And it did come with some of the side-effects. The Sunday following treatment was definitely a day of rest. I was completely exhausted and slept the entire day. But as the week unfolded I felt progressively better. I was able to eat cold things (cold sensitivity seemed to go away). I was able to exercise. I was even thinking about golfing as it seemed like I was doing pretty good.

We had a pool party this past Sunday (7/1). This heat has been crazy in Michigan and so I decided to take a cautious dip in the cool pool. It felt good to swim.
Later in the evening, after eating dinner, I started to feel aches and pains and chills. It felt like a flu bug was starting to come on. The muscle aches and chills and fatigue continued through Monday and Tuesday. I also had some bad constipation as well.

So now I’m wondering:

Was the flu like symptoms a side-effect from the FolFox? Maybe I should not have gone in the pool? Maybe it was a combination of the cool pool and hot sun (although I didn’t spend too much time in the sun and I had 50 power sun block). Or maybe I was actually battling a flu virus?

Also, round 2 of chemo is scheduled for Thursday and I have some anxiety as I understand that the side-effects may worsen as the treatments progress.

Another side question – Is it okay to have a beer or two during threatment? Like and mid points between treatments when I’m hopefully feeling pretty good?

I could ask the doctor, but I thought I’d ask the veterans first. And my wife won’t let me have a beer until I get the green light.

tanstaafl's picture
tanstaafl
Posts: 969
Joined: Oct 2010

Pools can have lots of things swimming in them without too much chlorine.

LazrTekr's picture
LazrTekr
Posts: 4
Joined: May 2013

 

Hi all! New to the site.

I was diagnosed with S4a Colon Cancer in November of 2012 and went through a colon resection to remove the tumor, along with 6" of my colon, 21 lymph nodes (10 were cancerous) and unfortunately, they could not resect the liver (met tumors) because they are on both sides. I am so lucky the surgery went well and I was back to work in 2 weeks.

I have done 9 rounds of FolFox so far and the first 4 were a cake walk. Other than the cold sensitivity, it wasn't bad. After the 4th and on, it has gotten much worse. Heartburn (belching and hiccups), mouth sores, slight neuropathy, exhaustion and most annoying now, the rectal pain from constipation/diarrhea. Started Avastin on my 7th cycle of chemo and that has affected by taste greatly. Add that to the mouth sores and lack of appetite and you have a trifecta of reasons not to eat.

My ONC gave me Acyclovir for mouth sores and that has really helped keep them at bay and taking an antacid/acid reflux pill has helped with the heartburn issue. I have also begun using "finishing wipes" at the toilet. These again have helped but no amount anything is going to negate the fact that I am inflamed inside, using the bathroom often, and this is causing a lot of pain. At this rate, I am going to call my ONC and see about getting pain meds like some of the others that have commented about rectal pain.

My liver tumos have been reduced by 2/3rds at my last scan, after 6 cycles of FolFox and doing well.  I start cycle 9 next week and cannot wait for cycle 12 (finished?)!

 

Thanks for listening and hope all goes well with everyone!

 

Brian

 

PatchAdams
Posts: 272
Joined: Nov 2011

This is a very old thread and several, including the lady who began this thread, have since died.  Please start a new thread and take note of dates when searching.  

LazrTekr's picture
LazrTekr
Posts: 4
Joined: May 2013

Patch,

 Thank you for the information and I apologize.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network