Please help! DH having a lot of trouble with FOLFOX tx #2

okthen
okthen Member Posts: 232
edited March 2014 in Colorectal Cancer #1
Hi everyone! Have some questions...
Dh was unhooked last friday ...he's doing FOLFOX. This was his 2nd tx...swallowing was a bit more painful, cold liquids were painful for about 2 days, but no problem after that.
His main problem is his skin on his bottom is burned, to the point that he is in a LOT of pain. We have tried every cream we can buy, powders etc. The only thing that helps is a bath, but then he hurts quite a bit for a good while after.
He is not having diarrhea at all...almost the opposite.
We haven't tried like a yeast cream, but thought I might get some tomorrow, just to see if it helps. We talked to his chemo nurse about this but she had no new suggestions.
He's saying if this is how it's gonna be for 6 months then he can't do it.
Please any suggestions are needed!
If anyone had this issue did it last the whole 6 months of tx?

Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #2
    AQUAPHOR
    its used by a lot of radiation patients that have burned bums....just like petroleum jelly but is great for what hurts him...any onc most likely will have it in house...it saved my tail.....Buzz.......
  • okthen
    okthen Member Posts: 232
    #3
    Buzzard said:

    AQUAPHOR
    its used by a lot of radiation patients that have burned bums....just like petroleum jelly but is great for what hurts him...any onc most likely will have it in house...it saved my tail.....Buzz.......

    Thanks Buzz...we have used
    Thanks Buzz...we have used Vaseline....I feel so bad for him. )o:
    Our dang hot water heater can't keep up with the baths he needs to take to feel better.
    I sure hope he doesn't give up....maybe the ONC could lower the dosage?? Would that help maybe?
    He also seems forgetful and confused at times...has done and said some wild things..I just keep trying to stay on top of things so he doesn't have to hurt or be worried, but feel like the butt burn is going to do us in if we cam't find what works for him. Chriss
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #4
    Chris
    Chris,
    **** had quite a lot of pain as well. He had it on folfox and folfori. He got so raw and it really hurt. He used Butt Paste and felt that helped. He also took advil for the pain. We also went out and bought a TOTO toilet seat that he says has saved him. It is $$$ but he doesn't have to wipe. It sprays warm water and even blow dries.

    Hope your hubby feels better.

    Aloha,
    Kathleen
  • claud1951
    claud1951 Member Posts: 424 Member
    #5
    There were two different
    There were two different creams that I used.
    One of them was Eucerin. This is a white cream and comes in a jar (not the tube). Put that on then put cotton gloves/socks on. You can get this at the drug store.

    The other one was from MaryKay. It's called Night Emollient. Very thick stuff but it worked. (only thing is, it has a scent which he may not like)

    I did have some more issue with Folfox, but remember, we are all different so he might not have them.
    I had muscle spasms. Calves of my legs, hands, etc. For me, I found out if they (the nurses) used a slower drip (to put the folfox in) Ididn't have it quite as bad. It takes longer but I was okay with that.

    Yes...cold sensitivity is a biggy.I couldn't even touch our dresser drawers or my finger tips would tingle.

    Try drinking with a straw or if metal silverware is an issue, use plastic.

    Best of luck. Keep moving forward
    claudia
  • pepebcn
    pepebcn Member Posts: 6,331 Member
    #6
    Kathleen808 said:

    Chris
    Chris,
    **** had quite a lot of pain as well. He had it on folfox and folfori. He got so raw and it really hurt. He used Butt Paste and felt that helped. He also took advil for the pain. We also went out and bought a TOTO toilet seat that he says has saved him. It is $$$ but he doesn't have to wipe. It sprays warm water and even blow dries.

    Hope your hubby feels better.

    Aloha,
    Kathleen

    Sorry chris i cant help as i hadn't this kind of
    issues while in folfox, i had a bit of rush easily manageable with TALQUISTINA is
    like talk powder with some antihistamines on it,l don't know the name there but helped a lot
    Hope everything goes better very soon, also why don't you visit a dermatologist?
    he probably will know how to handle this better than anybody else.
    Hugs.
  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
    #7
    cream
    I used bag balm on my hands and feet four years ago with Xeloda. It is thick and greasy and it needs to be covered with gloves and socks. I assume underwear would work to. But with Folfox this time I am using Utter Cream. It is not greasy and is absorbed better into the skin and smells pretty good too. Use it every day as needed. There are some creams with topical pain relievers in them. I don't know much about them since they were suggested four years ago when I had radiation but I never got burned so I didn't get them.
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #8
    Lotrisone
    Hi,

    I have had problems off and on with this while on chemo too. I've used all the mentioned creams and ointments too, with so-so results. The one that worked the best for me was desitin diaper rash ointment, but I couldn't stand the smell of it and it was sticky and gross.
    I just got a new cream written as a prescription- the skin down there was red, dry, and cracking (then it would really hurt). My dr said (I happened to have an exam by the colorectal surgeon recently)- she said it looked almost like radiation burn, but I reminded her I haven't had radiation in over 2 yrs and it just gets like this on occasion, usually just the few days after a chemo infusion.
    Anyhow, the newly prescribed cream is a combo emollient for protection and something for yeast/fungus, in case that's part of the problem.
    It's called Lotrisone. Lotrisone is the brand name- the generic version just says "Clotrimazole and Betamethasone Dipropionate Cream USP".
    I actually haven't tried it yet, but it may be something to ask the dr. about since it addresses two issues in one cream.

    Good luck on that-
    Lisa
  • abrub
    abrub Member Posts: 2,174 Member
    #9
    I don't remember if your husband had rads
    I didn't. But I developed an anal fissure while on the Folfox, made even thinking about a bm blindingly painful. Lots of sitz baths; nupercainal, and my surgeon gave me a cardizem-based cream (needed a pharmacy that makes up prescription creams.) Yes, Cardizem is a heart med, but he had me applying it anally to decrease the constrictions of the sphincter, and hopefully minimize the pain.

    I never had diarrhea - more prone to constipation on Folfox, so I always supplemented with Colace and Senna.

    He must tell the dr, and must do everything to keep his stool soft.

    If it is an anal fissure caused by folfox, it might not heal until he's done with chemo. I was warned about that, and ended up quitting chemo after 7 cycles for a variety of reasons (the most significant being that with appendix cancer, they didn't know if the Folfox was useful at all). It took a couple of months for the fissure to heal.

    Wish I could be more encouraging - hoping it's not a fissure, but instead something that can be more readily resolved. In any event, I feel his pain WAY TOO MUCH.
    Alice
  • okthen
    okthen Member Posts: 232
    #10
    abrub said:

    I don't remember if your husband had rads
    I didn't. But I developed an anal fissure while on the Folfox, made even thinking about a bm blindingly painful. Lots of sitz baths; nupercainal, and my surgeon gave me a cardizem-based cream (needed a pharmacy that makes up prescription creams.) Yes, Cardizem is a heart med, but he had me applying it anally to decrease the constrictions of the sphincter, and hopefully minimize the pain.

    I never had diarrhea - more prone to constipation on Folfox, so I always supplemented with Colace and Senna.

    He must tell the dr, and must do everything to keep his stool soft.

    If it is an anal fissure caused by folfox, it might not heal until he's done with chemo. I was warned about that, and ended up quitting chemo after 7 cycles for a variety of reasons (the most significant being that with appendix cancer, they didn't know if the Folfox was useful at all). It took a couple of months for the fissure to heal.

    Wish I could be more encouraging - hoping it's not a fissure, but instead something that can be more readily resolved. In any event, I feel his pain WAY TOO MUCH.
    Alice

    You're all so appreciated!
    Thanks guys for your suggestions! I talked with ONC nurse again today, had a few requests for meds that I read about here and on the colon club site. 3 were nixed by doc for various reasons, he did okay calmoseptine, Jack tried that today and said he thought it was more soothing, so crossing fingers.
    I guess there is no way to prevent this, hopefully he will forget the pain between treatments and carry on with the Chemo.
    Kathleen, I will look into the toilet seat…not caring about cost at the moment, he just needs to not hurt! Thanks for that info..didn’t know it existed.
    Alice, I wondered about a fissure…when it’s time to go he looks like he’s going to pass out from the thought of it. )0: He sees the surgeon on 12/2…maybe we’ll try to get it earlier…
    Lisa..I thought I had read a post where you suggested L Glutamine for mouth/nose blisters. His onc said absolutely no on that…would interfere with the chemo..I tried to explain to the onc nurse that he would not be drinking it, just dabbing on the blisters..I don’t think she really heard me..not her fault, it’s been an ongoing problem all my life that I’m not heard…haha…need to speak up for hubby, this stuff is no joke. Anyway, if that was you that used it, were you on FOLFOX when you used it?
    Pepe, Claudia and Lou thanks to you all too for sharing what worked for you, it is all appreciated!
    Chriss

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