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My personal list of FOLFOX - 5FU side effects

Trubrit's picture
Trubrit
Posts: 5534
Joined: Jan 2013

I just thought I would make a list of all the side effects I remember from my Chemo (Radiation had a whole seperate list). Its quite impressive. 

It has always facsinated me how each of us differ in the side effects we experiece/have experienced. 

This is my list.

SIDE EFFECTS FROM CHEMO

From the top to the bottom (literally. HA!).
 
- My scalp was ultra sensitive. It hurt to lay my head back against the sofa, or on a pillow, and it hurt to brush my hair. 
 
- My hair fell out.  I actually don’t remember if that solved the sensitive scalp problem. 
 
- Headaches.
 
- My eye brows and eye lashes fell out. Really, you don’t realise how much you need them until they are gone. 
 
- My eyes would spasm. Twitch uncontrollably. This only happened when I was outside in the cold. 
 
- My eyes would run constantly. It looked like I was crying. 
 
- I lost my sense of depth perception. Yes, I wrecked my husband's car (so glad I wasn’t in my Mini). I was banned from driving.
 
- I used a old folks walker. I fell over sideways constantly. At the end, I could not walk without someone by my side or I had to have the walker. 
 
- Nose bleeds and sores. 
 
- Mouth sores.
 
- Thursh - Fungal infection on the tongue
 
- Taste buds went haywire.
 
- Sensation of a lump in throat and chest. Felt like the food was getting stuck.
 
- Electric shock in teeth when eating. Like when you have a filling and bite on tin foil. This, thankfully, didn’t last too long.
 
- Throat would constrict when drinking anything cold
 
- Brain fog. Oh my word! This was the weirdest experience. It felt like I had cotton wool in my head. 
 
- Loss of memory. Loss of cognitive thought. I would forget what words I wanted to use, and just make up words. I talked allot like my mum did, when she had Alzheimer's. It was VERY scary. 
 
-  Dizzy. The room would spin. Of course, I had vertigo and something called BPPV (you can look it up if you like), so I think the chemo just accentuated this.
 
- All of my body hair fell out. I remember my face and arms felt like silk.
 
- Heartburn. OH MY WORD! This was so so so horrible. 
 
- Shortness of breath. I couldn’t do anything but it made me gasp for breath. I actually have this on tape and kept it to remind me how awful it was. 
 
- Bone pain. Mostly from the Neupogen shots I had every week day for a month for the low white blood count. 
 
 
- Couldn't touch anything cold for the first four treatments. This went away, thankfully.
 
- Open sores on fingertips (you MUST keep your hands moistened). 
 
- Constipation throughout Chemo
 
- Diarrhoea throughout Radiation - but thats a whole different list. 
 
- Loss of appetite - Really not the ideal way to lose weight. 
 
- Loss of sex drive.
 
- Cold. I could not get past the cold. No matter how hot the house was, I was cold and buried under blankets.
 
- My skin went brown in places. Under eyes. Skin above nails. And I got tonnes of age spots. And of course, when I was radiated, personal areas. 
 
- Neuropathy in feet, hands (especially fingertip which I still suffer from), 18 months out of treatment. Its getting better. I can feel my toes rubbing together if I wiggle them.
 
- Low White Blood Count = Neupogen Shots every week day for a month or two.
 
- Low Platelets = Cancelled Chemo twice
 
- Low Red Blood Count = 2 Litres of blood from a stranger.
 
- Fatigue - I've expereinced nothing like it in my life. I felt like a balloon deflating. 
 
 Damn! Thats one scary list. 

 

NewHere's picture
NewHere
Posts: 1343
Joined: Feb 2015

Sorry to see that list.  You have gone though so much.  Your story, and others here, are scary and disconcerting, yet also shows how strong the human spirit can be and inspiring.

Took a look at the chemo you did, even FOLFOX did this?  And I was told it is one of the easier ones.  I had a feeling that no chemo is a walk in a park.  Frown

Trubrit's picture
Trubrit
Posts: 5534
Joined: Jan 2013

Who told you FOLFOX was easy? Go shoot them. Maybe easy for some, harder for others. 

I had also fotgotten about the low red and white blood counts and low platelets, so I added them to the bottom of the list. 

Don't let it daunt you though. There are some here who have indeed breezed through the chemo, even FOLFOX, going to work throughout, and even going on trips. And that could very well be you. 

I hope others share their list. I found it quite catharic. 

Sue - Trubrit

NewHere's picture
NewHere
Posts: 1343
Joined: Feb 2015

I am from New York, can I use a baseball bat upside their head?  Laughing

I think they said relatively easy compared to other chemos, but it sounds like it is just as person dependent.  Your list is incredibly daunting, but so was the thought of having things ripped out of my stomach.  Two weeks out, not quite that bad.  Really bizarre how I can sit hear and type that.  

I am hoping to have a small list, but the one thing throughout is being ready for what could happen.  Other than the pain of surgery, did not catch many breaks so far.  Maybe the chemo is where I catch the big one.

 

As always, thanks again.

Trubrit's picture
Trubrit
Posts: 5534
Joined: Jan 2013

It will be finished before you know it, and then I expect you to find this thread and add you own (short) list. 

If you do Radiation, I'll post that list, but be sure to read it with a glass of something strong. 

You can borrow my Glock if you want, though a baseball bat would do the trick.

Sue -Trubrit

NewHere's picture
NewHere
Posts: 1343
Joined: Feb 2015

So far I have been told no radiation and none anticipated, but I am beginning to see there may be some half-truths, change of information as things go along.  I have not had a drink since about a week before surgery.  Not even sure when I am allowed to have one again.  Saaw some things about wine may (or may not) be okay during chemo, one glass, due to benefits.  

If I hear radiation coming, I will take your advice though.  

jen2012
Posts: 1607
Joined: Aug 2012

My husband has done well with folfox so don't be discouraged.  He did every other week from Oct 2012 thru March 2013 and then again from dec 2013 thru ??  may 2014 I think.  Second time around he was out of work recovering from a broken femur but he did work all through the first time.   He would get the infusion on Friday and have the pump til Sunday. usually Monday and Tuesdays were tough, probably because of stopping the steroid.  He likes to blame folfox for the hair loss, but in reality there wasn't much when he started!

danker
Posts: 1282
Joined: Apr 2012

Since I had a chemo pump(fu5) 24/7 concurrent with my 5 weeks of radiation,I don't know which caused the gallopping diarrhea, but that was the only side effect . After sugury in 2010, Ned--- and ever since!  Soon to be 5 years!!!

Cathleen Mary
Posts: 827
Joined: May 2011

Sue, Yikes!!!!

CM

sflgirl
Posts: 220
Joined: Jan 2015

As a relatively new person here I thought I would share what I have felt during my first two chemo treatments.  Mostly to give some hope because Sue has obviously suffered very much.  I am on FOLFOXIRI plus Avastin.  Not much else they could throw at me.  So I have it on Thursday all day with a 46 hour 5FU pump that lasts until Sat evening.  Nurse comes and takes it off and I recover on Sunday, back to work Monday. I have a power port in my upper right chest, with the cream and cold spray I don't really feel the needle going in.  The fear was worse than reality.

They prep me with steriods, anti-nausea, benadryl, pepsid and then it begins.  I can only tell you that it has been manageble.  I'm tired but not debilitated, run a little fever on Friday, feel some nausea but no throwing up.  My fingers are very sensitive to cold for the first 4-5 days and my tongue got very sore.  I expected much worse so I am grateful.

After two rounds I do have low white blood counts and go on the next two Mondays to get an injection of Neulasta to build it back up. 

In any event, I don't write much but thank everyone for sharing here.  I really need stage 4 folks to share their good news, it's very uplifting.  I'm hoping to get my liver mets out in May and want to share a good story too.

My best to all,

Andrea

 

terry scarlett
Posts: 1
Joined: Sep 2021

My husband has a white growth on his toungue after surgery on the base of his toungue. Its been 6 months and nothing is helping clear it up.. he also has a thick sticky never ending mucous thats keeping him from swallowing. Hes been a a peg tube for 6 months now. Any helpful tips or suggestions appreciated

 

Trubrit's picture
Trubrit
Posts: 5534
Joined: Jan 2013

I am sorry to hear about your husband's problem.  

I do not know anything about peg tubes, or if that would cause him to get the growth on his tongue.  Has he been checked for Thrush?  

I was put on Nystatin (antifungal) and it worked, for a while.  I do believe they had me on another drug, once the Nystatin didn't work, but I cannot remember what that was. 

I am eight years out of chemo, and my tongue is still white, though it is no longer Thrush. While I can taste sufficiently, it is somewhat diminished. 

Has his Doctor been told about this?  

Do you think the mucos might be from the nasal passage? 

I do hope that he can find some relief from the mucous. It sounds allot like the snot you swallow when you have a cold or allergies, and that is no fun. 

Tru

Real Tar Heel
Posts: 265
Joined: Nov 2019

So many side effects I can't remember them all. I'd forgotten about the brief bout with thrush, which they tried to write off as something else. I had a benefit from insurance that an NP would come to see me during the treatment, so I told them about the thrush during a telehealth visit. She prescribed something and it went away within 10 days I think.

I don't know how many of us are experiencing it, but it seems that whenever we come up with a symptom that seems really odd to us, someone is there to say, "It's just part of having cancer" or "It's just part of chemo." Then we come on here and see others who have had the same problem. Frown

So then, to terry, if you don't get a good answer from the Onc, see your family doctor/general practitioner.

beaumontdave's picture
beaumontdave
Posts: 1178
Joined: Aug 2013

Still quite a list, Tru, I was fortunate to have just a few of those symptoms and did feel spent most of the time, but I'd forgotten how bad it got for you and others. Found myself wondering about sflgirl just recently, but ''Access Denied'' seems to be a sterile, meaningless epitaph that slips in place, while we wonder...................................................Dave

RickMurtagh's picture
RickMurtagh
Posts: 590
Joined: Feb 2010

I had forgotten most of those symptoms. I had those all as well, except the hair loss.  I used a shillelagh though, not a walker and other than the still falling over occasionally, I think I looked quite dapper.

 

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