How long do Folfox side effects last!

[CarolA]

I am currently undergoing Folfox and tried to go back to work full time as a 2nd grade teacher. I lasted 6 weeks. The nausea and the pain in my feet from the neuropathy in addition to fatigue lead me back to medical leave. My last treatment, if I stay on schedule, is November 30 with disconnect from Fu5 pump on December 1st. My question is do the side effects subside quickly? How about Neuropathy , I heard it gets worse after treatment ends. Is this true. I'm scheduled to go back full time Jan 25th is that enough time to recover from the effects of the chemo? Teaching 2nd grade takes a lot of energy... I'm on my feet the entire time.... and a lot of patience something I lose when very tired and feeling ill. Please give me some insight to how I'll feel after treatments. Thanks!

[Tnguyen]

Hi there,

For my mom, she used to have the neuropathy on her hands and feet when she was on folfox...but after stopping the treatment for good, her hands and feet went back to normal. She no longer feels sensitivity in her hands or feet, but the fatigue I think is ...."forever". When my mom was on folfox/chemo, she would be weak for about 4-5 days, and afterward she would be right back on her feet. Walking every morning and eating a lot. But After being on chemo for a year, it has really made her body weaker. She isn't able to walk for a long time nor be as active as before. She has to sit down after walking or standing for a long time.
Maybe you can try walking in the morning for like 10-15 min, whenever you're in a better condition to help keep your body active. You can also try eating more fruits and vegetable for more vitamins and proteins. I use to make my mom smoothies for the days she couldn't eat and that helped a little.
I wish you the best Carol!

[BeansMama]

My onc has said the neuropathy takes quite some time to get better, it can take months or even years according to him. He also said the effects from the Folfox can continue to worsen for a while after you stop receiving the treatment.

I have been off Folfox since August and my neuropathy has not improved yet. My hands are affected more than my feet, I have lost fine motor skills and my hands are numb all of the time. It is incredibly frustrating when your hands won't work properly.

I have issues with my feet as well, they are numb and wearing shoes is painful. I am dreading when I can no longer wear flip flops and have to wear shoes. Socks are a big issue with me, they have to be soft or they hurt.

I'm hoping my neuropathy starts improving but I'm beginning to think it never will. I hope this is not the case for you and yours resolves quickly. I think it depends on the severity of the neuropathy.

I can't help you on the fatigue, I am receiving Folfiri now so I still deal with the fatigue from chemo. It seems like I sleep all the time.

I will add you to my prayer list, hoping your neuropathy and fatigue resolve quickly.

[Pat]

My last Folfox tx was the end of July. At that time neuropathy in my hands and feet were so painful that I kept gloves and socks on 24/7. The neuropathy in my hands have subsided to the point that my fingers feel odd but not painful. My feet are another story, it is still painful to walk and I sleep with socks on to avoid contact with the sheets.

I also noticed, during tx and now after, an overall fatigue that is brought on when in air conditioned places - especially grocery stores. I go in feeling fine but degrade as I proceed through the aisles. I picture myself as going in perky and leaving dragging. It has only been 2.5 months so I am hopeful the side effects will continue to subside.

[AbbyDoo]

Hi CarolA,
I think if you ask 100 people this question you will get 100 different answers. I remember signing a paper stating chemo can stay in your system for 10 years( dam I hope not)
My last infusion was in march and it took 3 or 4 weeks to start feeling semi normal again. My feet did not bother me during chemo but about two weeks after they started tingling and hurting.
Today about seven months later I can clap my hands or snap my fingers without that electrical shock feeling. My feet still bother me, so its always socks. Fatigue is there but not to often.
Sometime I swear I think my wife has a voodoo doll of me. She will throw it on the ground and say OK you nap now. Or take a needle and stick it in my ass or dunk my feet in Ice water

[cashmere]

My experience was that my neuropathy set in at 2 months post last chemo. I did have it prior but nothing like it is now. Mine is permanent and I manage it with Lyrica.

It took me about a year to get most of my energy back. You are probably much younger than me, I was 52 when I finished treatments. I would never be able to stand for that long, I can walk forever, but standing is really problematic.

I wish you the best on finishing treatments and I hope you can continue working. Pearl

[CarolA]

Hi there,

For my mom, she used to have the neuropathy on her hands and feet when she was on folfox...but after stopping the treatment for good, her hands and feet went back to normal. She no longer feels sensitivity in her hands or feet, but the fatigue I think is ...."forever". When my mom was on folfox/chemo, she would be weak for about 4-5 days, and afterward she would be right back on her feet. Walking every morning and eating a lot. But After being on chemo for a year, it has really made her body weaker. She isn't able to walk for a long time nor be as active as before. She has to sit down after walking or standing for a long time.
Maybe you can try walking in the morning for like 10-15 min, whenever you're in a better condition to help keep your body active. You can also try eating more fruits and vegetable for more vitamins and proteins. I use to make my mom smoothies for the days she couldn't eat and that helped a little.
I wish you the best Carol!

Thank you for replying to my post.... I find your information useful.

[CarolA]

Thank you everyone for all the useful accounts from your experiences..... as most of you noted we each have a unique path through this journey and therefore our side effect will be unique as well. I will keep all your information mindful as I come to the end of my treatments and embark on entering the classroom again. Thank you all!

[AnnClare]

For me, the neuropathy really began to set in around cycle 8. It would diminish some after disconnect, but after cycles 11 & 12, it's hung around. My feet don't hurt, but they're tingly. Same with my fingers, and my fine motor skills are lacking.

I consider myself fortunate, as I was able to work (I'm a massage therapist) throughout my entire treatment, only taking off a day here or there due to fatigue. My onc promised I wouldn't experience nausea, and he was right. He had me get 3 anti-emetics pre-infusion, plus a Sancuso patch to wear for the week I was in Tx.

My 12th and final treatment was 3 weeks ago tomorrow (my last disconnect was on Sept. 26th) and there are still times I feel more tired than I should, but I understand this is 'normal' and to be expected.

Everyone's experience is different. I hope & pray that your side effects will be temporary and will lessen soon. This is a frustrating and looonnng process, but you have to keep in mind that as nasty as the Tx and side effects can be, it's in your best interest to hang in there.

I'm sending good & healing vibes your way.
Please keep us posted on how you're doing.