Are you Caring for a Partner & Parents with Dementia/Alzheimers
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Good news @arpieI googled and read his story as well, so inspirational. He hasn’t let anything stop him from living a full life.You are an inspiration as well, helping him and so many others on this network with your informative posts.Glad to know his chemo regimen is working.Take care and look after yourself.2
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@arpie that is wonderful news re Hubby. My Dad (early 70's) fell down a river bank on dry gum leaves on a fishing trip and broke his ankle in Feb. He has been in plaster and now moon boot since. His feet were angry red and peeling and Mum put on heel balm twice a day and now they are a nice looking pink colour.1
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Hi @arpie,
Such very good news for you and hubby after the harrowing last few months, I was on capecitabine for 36 months, it was hard but doable, my regime had to be changed and the dosage lowered after a 8 day stint in hospital due to toxicity but once that was sorted I managed, I did 12 days on 9 days off and 2 tabs morning and night instead of three, my feet and hands suffered quite badly, the skin peeled and they were very red angry and inflamed, I wore nothing on my feet except socks, lots of moisturizer didnt matter what brand, I used dermeeze in the bath it contained oatmeal and was quite soothing, they was no one real product that worked just a matter of keep trying, I found it quite difficult to walk at times and was not able to peel vegetables, however after all that, I kept going for almost three years, the drug certainly did its job and lowered my markers, it was just a matter of dealing with the side effects, I have photos of my hands and feet but I dont think people want to see them!! as you said if all is going okay and he is happy then onwards and upwards,you are one amazing lady arpie and I just know that your husband appreciates all you are doing for him, I am so happy that I too have a very supportive partner, with something like this its so important to have someone that supports you.Keep on keeping on.
wendy552 -
Thank you ladies ....I am just doing what everyone would do for their own loved one - and what your loved ones are doing for you xx
@PV123 - he has certainly done a lot more in his life than a lot of others, that is for sure! I reckon he should have qualified for the Special Olympics (amputated stomach) and he would have given a good shot at the triathlon! LOL
@Locksley - I am SO sorry to hear of your Dad's injury - at that age, it takes so much longer to recover & rehabilitate too
I hope it doesn't put him off his fishing - but maybe no more negotiating riverside banks! Bugger! I'm glad his feet are coming good again xx
@wendy55 Well done for lasting 3 years on it! - it is a misery isn't it but so good in lowering the markers? Yes, I've been taking pics of his feet & sending them to the Onc so she is aware of the increased damage. She's just put us onto new ointment Eleuphrat Cream .05% (previously on Hydrozole 1%.) She says that any moisturising cream with Urea in it is better than just straight moisturiser (we'd tried Sorbelene too and other moisturisers.) The pharmacist gave me some sample Dermeeze so will try that as well. A couple of his 'splits' have started bleeding ... but he is still able to walk fine. Just gotta be careful that he wears shoes of some sort when outside - we can't afford for him to step on something & cut it & get an infection. His diabetes means he has a degree of neuropathy too - so doesn't always feel pain (which is some ways is good.) Luckily, one foot is OK and so are his hands. Yes, he was on 3 tablets am & pm - and now only on 2 am & pm - and it has made a huge difference. Terrific that you have a supportive partner too - I just look at it that we are a team .... I am even sneaking out for a fish now & then too!!
@FLClover - I am so sorry that you've got the shit feet too .... The NS8 Heel Balm (for soles as well) was terrific initially (as was the NS21 for the top of the feet) but then the skin really 'caked up' and was thick & dry ..... shame we can't claim all the creams on our PBS list! It costs a small fortune to keep trying new ones!
Take care xx
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Hi again @arpie, I forgot to mention gel infused socks, just google the name you will see what I mean, they may help, also I used dermeze sensitive skin thick cream body moisturiser for sensitive skin its pretty thick but quite good, I also forgot to mention I wore white cotton gloves everyday I bought mine in the supermarket I used to have half a dozen pairs on the go and wash them after using to reuse again must be cotton though lovely and soft, I could not drive unless I was wearing mine, funny how things come back to you, I used to wear slippers, just slip on ones every day, though that may be a problem re a fall, you can buy special socks that grip the floor they were the ones I wore every day as well, its all coming back to me now!!! its been several years and several treatments ago that I was on the capecitabine, I also remember a support group which was part of the mets group in the USA as well, everyone shared there expereinces also think one in the UK as well,my hands and feet are still not 100% I do remember my hands being very very tight and having reduced movemnet in them which is why I could not peel veges and do some things on a day to day basis,but the drug worked and with you looking after him lets hope he gets 3 years out of it!!!
wendy552 -
Many thanks @wendy55, let’s hope so! He’s still got a lot of living to do ..
I’ve already bought a couple of pairs of white cotton gloves (in case he feels the cold as much as anything, as touch wood, his hands aren’t affected so far ... tho he was 11 years ago with his first chemo. He hasn’t worn them yet.
I’ll definitely check the gel infused socks! I got him a couple of pairs of slip ons, but he waddles like a duck in them and I am actually scared that he WILL fall over, so may hide them. I’m on a couple of stomach cancer groups but no one has mentioned the hand/foot issue yet! Weird!
thank you xxx1 -
The chemist gave me a Dermeze sample pack - and the Treatment Ointment (far right) looks VERY promising! I used it on hubby’s foot last night and this morning .... it is greasy and sticks on well. The foot looked better this morning so have put another lot on. Each is only a small pack, but I reckon I’ll get 3-4 treatments out if it. A little goes a long way.
The little pack is a terrific way to try all the bits, before committing to buy a bigger bottle!
Cos it is costing a fortune to buy stuff and then find out it doesn’t work! Grrr
I wonder if Moogoo does the same?0 -
I totally agree @arpie. This is why I usually just don’t buy if I’m not sure it’ll work. Or I’ll ask around first if I can. Cost adds up, it’s too much to give for nothing. I love sample packs. I hope this one works 🤞🤞.
I found a Moogoo cream that is specifically meant for the scalp, although it can be used other places too. I’ve had a dry and itchy scalp for years. Since treatment it’s become worse. I have spots that are actually bleeding. The Moogoo cream has really helped. The itchiness and flakes are almost gone. And has healed the bleeding parts too. I think I only used it on my soles once though. I think they’re a really good brand, so might be worth trying one of their creams 👌🏻.Only problem is for me they’re hard to find.0 -
Moogoo makes SO MANY creams tho! Which one are you finding the best, @FLClover? Hubby has a couple of bleeding cracks that I am keeping an eye on ... one between his toes! Being a diabetic, we’ve gotta be even more observant!
This is the one I am trying on top of the foot (using the Dermeze Treatment Ointment on the sole and heel just now.)
I’ve tried Cetaphil as well ....1 -
When I looked up the ingredients for the ointment, it seems to be basically petrolium jelly...good old Vaseline. Heve you tried that yet, or the bum cream mothers put on babies' bottoms?1
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@arpie I’ve just started using Cetaphil as a body moisturiser. I like it. I apply it on my feet too. This is the Moogoo cream I use. I put it on my scalp, face and feet. I also have a little patch just under my eye that’s very dry, itchy and flaky. I put this cream on it and it helps. I’ll try it more often on my soles and let you know if it helps 👌🏻.
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Hello @arpie sorry I’m so late to reply. I’ve recently finished 6 months of Capecitabine and therefore, hopefully, my active treatment. Initially I was on 3 pills twice a day, a total of six a day, and after a few weeks I could hardly walk my feet were so sore. So my onco immediately stopped me taking it until my feet healed, and we dropped the dose back by one pill down to 5 a day. That fixed it for me. I used Moogoo exczema and psoriasis cream on my feet.
My hands eventually went dry and leathery too, they felt really really yucky and sometimes my palms felt like they were burning. Oh joy! I just moisturised multiple times a day with Dermaveen hand cream. Felt really nice and not too greasy.
Im so glad his bloods are looking much better. Well done both of You!
hugs
Caz xx0 -
Many Thanks for that @Caz1 ... we’ve also dropped the Capecitabine from 6 a day to 4 and if the foot get worse towards the end of the 2 weeks, the Onc said that I can stop them a few days earlier. Weird that only one foot is affected tho! His hands are fine too!
Mind you, he’s had a toe nail fungus for years that no meds can cure unless he goes on the tablets, which can lead to liver failure, so it’s not worth the risk.. The cakey toe nails actually started 11 years ago with his original chemo!
I’ll try a pair of Scholl Dry Skin PediMask too (gel socks) .... they are only $7, so worth a try.
SO many choices in Dermaveen and Moogoo ...
Thinking back to a friend in the 80s who had a severe case of Pityriasis Polaris Rex (similar to psoriasis but worse) - 100% of her body was peeling (where she was shedding skin just walking across the room) ... she ended up in hospital and was covered in cream daily, wrapped in warm, wet lengths of cotton wool and then wrapped in plastic as a ‘fake skin’ .... it took months but eventually she came good. She see to out oatmeal flakes in a stocking and dunk it in the bath which made the water ‘slippery’ (instead of using soap.)
take care xx0
