Morning Girls, I am have one of 'those' days. SO close to tears & a complete meltdown.I have a rash all over my arms that is bright red & hot to touch & the Oncologist tells me its hand & foot syndrome from Xeloda just not on my hands & feet. Why do they not listen when you talk??? I have had this rash since before Christmas, 3 months before I was put onto Xeloda.I go in my tepid bath with either Pinetarsol or QV Oil in it every night to kick moisture into my skin, I have a tepid shower in the mornings & slather on the moisturizer afterwards.... Some days its better than others, today its bad, its hot to touch it itches like crazy. Im really at the end of my endurance today.I just dont know what to do with myself.Why dont they listen?? my skin has always been reactive & after 53 years I think I know what works & what doesnt.... they dont listen & so I get nowhere I just suffer, mostly in silence, till it becomes too much then I have a vent , on here...Sorry Girls, just feel I need someone to listen to me...

Hugs Cate64 I feel your pain my skin is my reactor to things.... It is hard when we don't believe we are being listened too...I wish it was as simple as just having a bath in something to get rid of it... It is OK to VENT on here we get you .... Can you try some Epsom salts to soak your arm in it tepid water plus Epsom salts maybe lather on some moisturizer or coconut oil after to see if that helps you with the itch and heat. I soak in cup of Epsom salts in bath for 20 mins it helps me settle my skin but I know we are all different. I hear you more hugs Solidercrab

Hi CateI'm new to this site and just came across your post. I am so sorry you are suffering. I wish I could offer something positive suggestion wise to help but I'm not you and I can't think what would help except to say 'I hear you and yes, it sucks, and blows that this is happening'. Can your breast care nurse offer any suggestions??

Hey Cate, Just wondering if the rash has gotten worse since starting Xeloda & that the extreme heat you are experiencing is also something new ? Given that you have had this rash since Christmas, have you noticed that the symptoms/rash/side effects are worsening ? Yes, hand & foot syndrome falsely leads us to believe hand & foot only !!! As Xeloda is tablet form, I guess it is prescribed from your oncologist directly & that the oncology dept where you are having treatment could be a go-to option is not an option ? @Cate64, I am so sorry that you are having so much grief here. Perhaps some of our lovely admin ladies could provide some help here (or Cancer Council) ??Big hugs xxx

@Share how lovely you are here. How are you??The symptoms are just the same my lovely, some days worse than others.... I am just over the Oncologists blaming it on the Xeloda instead of helping me get it under control.... I feel once again, TNH is letting me down...

Hi cate64, sorry your having a hard time. I have hand and foot syndrome from paclitaxel and my feet and hands just burn and feel sore. Using ice packs helps relieve some discomfort. Sorry I can't be more help.

what to do?? | BCNA Online Network

19 Replies

Cate64
Member
8 years ago
@wendy_h67 it is listed as a side effect of my treatment but let me tell you how things have changed just in the last week....
They put me on 50mg of solone for 5 days & nothing still as bad as ever... that was some weeks ago..
Now my Mum is coeliac & so is my Dads brother so I was tested at my insistence as it can manifest as skin issues instead of gut issues, but i tested negative.
2 weeks ago i decided what the hell & completely eliminated gluten from my diet after 2 days a little improvement followed by no further improvement for 10 days now 3 days after that its almost gone...
So now Im wondering..... will see how things pan out during my next cycle of Xeloda, see if it comes back or not...
wendy_h67
Member
8 years ago
Hi Cate, I had a problem with a skin rash when I first started on Abraxane 5yrs ago. My oncologist blamed it on something I had eaten but my radiation oncologist got me to see a skin specialist. He did some investigation into the treatment I was on and found that it was an uncommon side effect from the chemo. He gave me a low dose of a steroid cream which helped and the rash eventually disappeared.
Cate64
Member
8 years ago
@Scooper I will send you a message, have hospital on 16/06 if you want to catch up for coffee??
Scooper
Member
8 years ago
Hello my friend! Just logged on! So sorry you have this bloody rash! It sounds so awfully painful! You are always so upbeat and positive on this site! Sending you much love! Hope we can catch up soon for coffee!
brightspace
Member
8 years ago
Hi Cate may be check with naturopath..
perhaps overtime your skin has developed a sensitivity to pinetarsol .
goatmilk soaps and creams are also used for skin problems
I assume you also avoid uv creams ,washing powders.
Lycra and nylon fibres can also be a problem.sometimes excessive body heat due to exercise can cause flareups
TonyaM
Member
8 years ago
Yep,Dermaid is great for any rash/itch like that. It's a very low dose steroid cream.Maybe check with your chemist or doc first. Hope you are feeling better soon.
KimW
Member
8 years ago
oh Lordy yep thats it damn brain doesn't work like it used to may be worth looking into though
SoldierCrab
Member
8 years ago
@"kim wood" do you mean shingles ?

Cate64 the other thing that helps cool my skin or daughters when we have itchy skin is rolled oats in a stocking then wet it in bath or shower and let the oat milk seep onto the rash.
Zoffiel
Member
8 years ago
Dermaid is an ointment that has a topical steroid component. It is available over the counter and isn't expensive. It might be a good idea to do a small test patch and see if it helps your rash. The other option may be an oral antihistamine, one again, just to see if one makes a difference. This isn't intended to be medical advice, it's just stuff I've found helps with weird itchy shit.
melclarity
Member
8 years ago
Cate, it is tough going and you have every right to be upset!! Its not an easy road, but you do it with no fuss, you dont let it interfere with your aspirations in any way. So yes there would be days that just get too much, the rash seems quite bad. Surely there is something that can help. Naturopaths are amazing!!! certainly have helped me heaps, but I dont know what they could do when symptoms come from medication, can you ring your Oncologist? Sending a big hug!!! xo Melinda