Folfox chemo treatment

Hi

• I had 12 rounds of Folfox.No real symptoms for first 3 days other than tingling fingers.Then I experienced lots of burping,terrible taste in mouth and difficulty choosing something I wanted to eat and drink.I couldn’t stomach tea or coffee.I never felt nauseous but felt “yucky”.Gradual improvement for next few days.Then you start again
• Its not great but you will get through it.

Thanks for taking the trouble to reply.  That's really helpful. Now my  6th day and no sickness,  just feeling yucky as you say and, yes, i seem to be burpingl lots.  

Hello I had 6 cycles of the same treatment, I kept up with the anti sickness drugs even if I didn't need them. I never felt sick at all. I was told best to prevent it. I found day 4-9 I was extremely tired, also had a horrible taste in my mouth, certain foods tasted awful.I did get oral thrush but this was soon treated when I phoned my GP. I have been left with neuropathy in my feet but they say it may get better over time. Once I had finished my treatment it took about a month for my taste buds to go back to normal. I loved my picc line it was so easy for the treatment and for bloods to be taken. Since then I had my op 5 weeks ago , all cancer successfully removed , no nodes involved now and no spread, so no more chemo needed. Just recovery now. I do have a temporary stoma but that is a non event (nothing to worry about at all ). So 6- 12 months I can have a reversal. Hope this helps a little .

Julie

Thank so much Julie.  What anti sickness medication did you take?  Great news your treatment and surgery were successful.  I hope my outcome is as successful as yours.

.

Hello

,Best to talk to the team on the oncology ward about sickness tablets , they will find the best one for you. Like I said the advise given to me was to take the meds even if you don't feel sick. Prevention is best.

Julie

I was given anti sickness - Domperidone.  They obviously did not work for me as I was sick twice in the night.  That's why I asked which tablets you were given.  I am happy to report that I have not taken any more Domperidone and have not felt nauseous since.  

Hi Patchwork,

Below is my experience of Folfox (March - June 2021).  I posted this last year to someone who wanted similar information.  I've just updated it with the stuff in italics.  Hope it helps - apologies for length of reply!  Best Wishes. Net77

On a day to day basis I felt like this:

Day 1 – Infusion and pump fitted – no sickness, felt almost normal but felt slightly zoned out. Sneezed quite a lot and runny nose. From late afternoon when take first mouthful of any liquid (room temp or above) tongue feels weird (if you’ve read the Harry Potter the best description I can come up with is it feels like I’ve drunk Polyjuice potion). Not an unpleasant sensation but weird – it lasts about 1 minute.
Day 2 – Pump in situ – as above except Polyjuice sensation from when I first drink anything (still only lasts about 1 minute)
Day 3 – Pump in situ for part of day, disconnected usually early pm. Felt as above.
Day 4 – Starting to feel quite tired during day and starting to go off the thought of food, but can eat when food is actually put in front of me, a lot doesn’t have much taste, or tastes of cardboard. The steroids start to take effect and kept me awake at night even though I’m tired (continues for 2/3 nights). Learnt to just rest even if didn’t sleep much and my oncologist let me reduce steroids by 50% as I didn’t suffer from sickness and this helped with sleeping at night. (NB: Also take the steroids you’re prescribed before 13:00).
Day 5 – As day 4 plus very slight oozing of blood from inner nostrils (continues for a few days, no pain and not enough to drip)
Day 6 – As above, some cycles I had a rash in mouth (not painful) sometimes my throat was a little sore, sometimes my tongue was tender and sometimes my neck glands were slightly swollen. Lasted between a day & 3 days. I didn’t get mouth ulcers and I didn’t need to change to a soft toothbrush, my gums stayed in good condition throughout.
Day 7 – Starting to feel much better and can actually think about food, but still not much energy.
Day 8 – Feeling fairly ‘normal again’.
Day 9 – As Day 8
Day 10 –As day 8
Day 11 – As day 8
Day 12 – As day 8
Day 13 – Usually felt quite good
Day 14 – Usually felt quite good
Next cycle starts

• The side effects tend to be cumulative and I found the tiredness and weakness got worse as the cycles progressed, but manageable. Around the 4th day was the worst for weakness and couldn’t shower without sitting down.
• I felt pretty much zoned out from the 3/4th day to 6th day on most cycles.
• Suffered from chemo brain from around 3rd cycle to end (couldn’t think straight and forgot things easily). I seem to be improving now and feel like my brain and memory are functioning much better.
I’m now 15 months post chemo and I don’t feel as though my brain works as it used to do, I certainly can’t remember things as well as before.
• From the 3rd cycle (mid April, so not that warm outside) I occasionally had a throat spasm with first drink of the day, and wore my thin gloves if I went outside.
• I usually had a sleep or at least a lie down in the afternoons for a couple of hours from Day 2/3 to Day 7. Sometimes I didn’t get up in the morning until after 10:00 and was usually in bed by just after 21:00. I could have slept for Britain.
• I tried to have a walk most days or at least spend time in the garden pottering
• When the weather permitted, I spent time outside lying in the shade even if I had fleeces and throws over me – I felt much better for being outside.
• My neutrophils dropped on a couple of occasions which delayed the next cycle.
• I suffered from oral thrush a number of times.
• I developed severe proctitis and my oncologist recommended I didn’t have the last cycle as it could cause too much damage. I had 5 of the 6 cycles originally recommended.
• I was told I wouldn’t lose my hair but it would thin and eyebrows and eyelashes could suffer too. My hair has thinned quite a bit on the top and front (but I have very fine hair and not a lot of it normally) but I haven’t noticed my eyebrows and lashes thinning. The hair thinning started around the fourth cycle and still continues (now 6 weeks after last (5th cycle)), but it will grow back.
My hair continued to fall out after chemo finished and this continued until about 6 months after chemo finished.
• After around 3 months post chemo I felt as though my energy had returned.
• I can honestly say my side effects were very manageable. However, I am retired so didn’t have to worry about working during it or what time I got up in the morning and I could sleep and rest as much as I needed to do. I am very lucky my husband does most of the cooking normally so I didn’t need to worry about that and he took on most of the housework too.
• I didn’t suffer from sickness at all and didn’t take any medication. I did very occasionally feel a tiny bit nauseous.