FOLFOX side effects??? I dont know...can you tell me?
Comments
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Hunger
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
Donna0 -
Gloves and socks
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!
Debbie0 -
Hugs of strength and comfort to you...
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.0 -
Hey...hi Donnapokismom said:Hunger
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
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
Jennie0 -
Fatbob....:-)fatbob2010 said:Hugs of strength and comfort to you...
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.
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
Jennie0 -
side affects
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…0 -
Hey Phil....Phil64 said:side affects
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…
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!
Jennie0 -
"The Mags"Phil64 said:side affects
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…
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:)0 -
Phil has got you covered.idlehunters said:Hey Phil....
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
I
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 bleedimg 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..
Donna0 -
Best replythxmiker 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.
Mike
I agree 100% with your notes.
Good Stuff
Joe0 -
folfox
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!!!0 -
sounds like you have been folfocked
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,
pete0 -
our oral swish
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.0 -
Folfolked! Love that!!! LOLpete43lost_at_sea said:sounds like you have been folfocked
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
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.
Jennie0 -
Hey Tans......tanstaafl said:our oral swish
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.
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!
Jennie0 -
Jaw pain
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 Marie0 -
shotidlehunters said:Hey Tans......
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
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. ;>0 -
I had the jaw pain, tooherdizziness said:Jaw pain
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
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.
Alice0 -
Forgot to mention...herdizziness said:Jaw pain
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
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)0 -
Just finished fourth round of FOLFOX
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))0
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