Managing hand & foot syndrome? (Vent)
TL;DR: I have H&F syndrome and need advice for limiting pain and still get stuff done. Recommend a certain type of gloves?
I (68F) have stage 4 colorectal cancer (dx and surgery 2024) and I'm currently getting infusions every two weeks of Erbitux, Leucovorin, and 46-hour 5FU pump (session #10 out of ??* -- *they originally said 12, but I now have infusions scheduled out through July and more coming). Also Decadron because of a previous allergic reaction to Erbitux. (Steroid, to explain why I'm up at 3:00 in the morning venting on Reddit.) They stopped the oxilaplatin back on #7 bc of side effects.
I was on CAPOX in 2024, but found I have the DPYD gene anomaly and ended up in the hospital after first chemo for 11 days with sepsis, got ALL the side effects at once and thought I was going to die. If you have any Western European ancestry ASK TO BE TESTED before starting Capox or Folfox. In Europe, they automatically test, but here in the good ol' USA they figure the collateral damage is worth saving 20 bucks per patient. Could've saved themselves half a million dollars if they'd tested me.
One of the side effects was H&F syndrome, but it manifested differently then than now. Skin puckered and thickened, cracked and peeled off, twice. This time the cuticles on my fingers are separating from the nails, bleeding and very painful. I have one thumb nail that has started to split just above the cuticle at the bottom of the nail, and I'm dreading how that's going to play out. The skin on my hands is very thin and tender. It feels like I have 10,000 paper cuts. There are cracks in the calluses that also bleed. If I hit my finger tips on anything, it's a show stopper: hissing and cussing and stomping of feet ensue. Ever reach in your purse and shove the tines of a comb under a nail or four? Yeah, that, only worse bc it doesn't stop.
I asked how to mitigate the pain since it seems I'm going to be on chemo for life -- and functioning at any level without using my hands is not working out well. The answer was to use that sticky, smelly Urea 20 cream and wear gloves. All. The. Time.
Regular gloves, not rubber gloves (try getting rubber gloves on hands drenched in cream... not fun!): fabric gloves that will let the cream ooze out onto/into whatever you're doing, that slip and buckle and prevent you from doing anything that requires any sort of dexterity, that keep you from using your phone, washing dishes, cooking, writing notes, making a bed, transferring laundry from washer to dryer, folding laundry, cleaning the bathroom, dressing yourself or someone else, anything where water is involved, etc. To be fair, a lot of the above activities are almost impossible already, but sans gloves, I can grit my teeth and do it anyway. The skin on my feet is also splitting but it's a minor irritant compared to my hands.
I am my mother's (88 yo) full-time, live-in caregiver, and these activities are not optional. At least until they are not possible, but that's for a later vent.
So I guess what I'm asking is: does anyone with this version of H&F syndrome have any suggestions for miracle gloves? Or any other pain relief during regular activities?
If you read this far, I apologize for the rant, and thank you for bearing with me.
Fuck cancer.