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How long does it keep burning?

29 REPLIES 29
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Re: How long does it keep burning?

Thanks girls for you help...Abby x

Re: How long does it keep burning?

Hi Abby,
you should be over the worst point now and on the way back to normal. Ask your doc for the actiformcool dressings, they are especially for radiotherapy burns and amazing. Just like getting a fire extinguisher on it, better immediately. I think the trick is to stop the boob skin from touching the skin underneath. If it helps, once mine started improving it completely disappeared unlike some friends who still have a vivid mark.
Good luck
Lily x

Re: How long does it keep burning?

Hi Abby,

I have put for you below the link to BCC's publication regarding radiotherapy which you might find useful to read.

Radiotherapy: http://www.breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publication...

Also the link to the area of the website covering radiotherapy:

http://www.breastcancercare.org.uk/server/show/nav.718/changeTemplate/PublicationDisplay/publication...

Kind regards,
Jo, Facilitator

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Re: How long does it keep burning?

I had my radiotherapy two weeks ago and have just started having probs with itchy burn that is driving me mad . I have seen a breast care nurse and she gave me Flamazie cream that is helping a bit. How long will this torture last?.

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Re: How long does it keep burning?

Hi to all starting radiotherapy.
Have second zap today out of 23 and worrying about the burn. Just wondered is anyone taking vitamin E tablets to help prepare.?My oncologist in France is against any creams until I need it probably after 12 zaps.
Mustarm

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Re: How long does it keep burning?

Hi Pam. I live in north-east London but am having my five weeks of radiotherapy at Queens in Romford, starting on 9 February. Sounds like you might be getting away with just rads and no chemotherapy. Is that so?

Re: How long does it keep burning?

Hi Pam,
I too had a grade 2 invasive ductal and had SNB. I am now waiting to start 4 weeks of radiotherapy at Mount Vernon in Rickmansworth/Northwood. You could try putting "Queens" into the search box and see if it comes up in any recent posts.

My surgeon and his team were great; he told me exactly what he was going to do and was happy to answer questions. The oncology team is a little harder going! Because I knew i was likely to forget to ask important questions - or forget the answers - I made a list of questions in advance and left space for me to fill in the answers. I found two of BCC's publications really useful for suggesting questions - the Ask about Your Medicines one and Understanding Your Pathology Report. I was given one of the Resource Packs by my bc nurse and that has some ideas of what to ask too.

Eliza xx

Re: How long does it keep burning?

i Pam,
Hi, how are you managing? There are people from Romford on here, I live near Chelmsford so a bit further over. Your post is on a radiotherapy section so people might miss it here. I just noticed by chance, as I have now finished rads.Might be an idea to put a post on chemo or rads section, whichever you are doing next to pick uo some more contacts.
Just wanted to wish you lots of luck and you are very welcome to join us on the Essex girls thread 'undergoing treatment for cancer' section and meeting up if you are able to cope with the drive.
Lots of luck with your treatment
Lily x

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Re: How long does it keep burning?

Hi,
I am new to this I have had Lump removed Oct 10th showed I had stage 2 Invasive Ductal Carcinoma then had Sentinel Node Biopsy to remove Lymph Nodes 5th Dec: I have an appointment to see Oncology Doc on 26th Jan,I was told I will have 5 weeks of Radiotherapy, I am trying to get this in my head as nothing seems to stay in there for long lol I don't know what to expect as Surgeon has never been forthcoming with the way he was going to do my treatment only found out from my GP and Macmillan Nurse what he was going to do. I am at Queens in Romford for all this treatment and just want to say that reading all your messages has helped me a lot so keep your comments coming please !!
Also would like to speak to anyone who lives nearby that is been through this.
Pam xx

Re: How long does it keep burning?

Hi,
thanks everyone who posted. I am doing well now, not sore, but in the peeling stage. The trick is definitely to stop the radiated skin touching other skin. As soon as I take the dressings off, some sort of reaction starts up again.
I have not felt tired at all on rads Kinden. They did say you must eat and drink a lot while on rads, which suited me!!! I guess we are all different in our reactions
Lily x

Re: How long does it keep burning?

Hi Lily
I have been using Aloe Vera GEL and they sell it in the health food shop, Holland and Barrett. It works really well
good luck
deb x

Re: How long does it keep burning?

Lily

Really pleased to see that you're feeling a bit better. I was told that it kept cooking for 10-14 days after the last treatment which did seem to be accurate, so you are nearly through the worst. Are you tired at all? I was by the end of rads, now 6 weeks later I'm feeling more energetic.

Kinden
x

Re: How long does it keep burning?

Hi,
just an update the actiformcool sterile dressing has been absolutely brilliant and has worked really quickly. I still have peeled bits of skin but they are not bright red or annoying me at all now. I would say the trick is to stop skin touching skin.
Lily x

Re: How long does it keep burning?

Thanks for all the info Lily, hope that you get some relief quickly from the new medication. It sounds like they should have taken a bit more notice when it all started?
I've bought some almond oil today and after your reaction to the aloe vera gel I think I might give that a miss now. Mine is 99.9% pure too, but it might not be the best thing to use after all. I've ordered myself a Bravissimo vest top with bra insert today, the sale prices are quite good and I must admit, as I am hoping to have a recon asap I don't really want to buy any new bras until after then, but all my bras are oldish now and not giving the good boob much support. Still, thats a different story and I won't hijack your thread any more.

Good luck with the sores, hope it gets better soon.

P xx

Re: How long does it keep burning?

Hi (the next step!)
Sailed into town, straight into holland and Barrett, spoke to a lady who nearly gassed me with her cigarette fumes!!! I bought 99.9% aloe vera gel after explaining to her why. I came home, applied it and within an hour felt odd and I had strips of brown skin just hanging off the underneath of my boob. Underneath it was really really tender tomato red skin. So I have been back on to the rads hospital and got a sister this time who chatted for ages. She said 'you are right on the crux of when it starts to turn and heal' but you have now reached the point that yours is better off having a dressing over it.
For anyone who gets the same problem, she told me to ask the nurse at my surgery for Intrasite gel and lyofoam dressings. The practice nurse I saw this time was on the ball and by the time I got there had an even better solution called actiformcool. It is a special dressing, which feels a bit like gel things you put in shoes but much softer. It is specially for radiotherapy damage, burns and leg ulcers and just clings to your body. It is absolutely brilliant at cooling it (still cool after 5 hours) and apparently works on the nerve endings so they stop hurting, and promotes a healing environment.
Here's hoping!
I would say don't suffer go and get help early because they say mine is still cooking from new years eve, and today is the 9th Jan. Good luck and don't forget they have no idea why some people react differently to radiotherapy, so yours might be just fine. I hope so.
Lily x

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Re: How long does it keep burning?

Hi
I am trying out a cream from the U.S.A. I did some research online after reading an article in a magazine about a cream full of natural products, no perfume , that was being tried out by someone having rads . I couldn`t get hold of that cream but found an alternative that I could buy online . It`s called " Recovery Cream " . The site is quessence .
I am on my 5th rads today . Using it in the morning , straight after rads in the afternoon and again after a shower . I moisturised for 2 months before rads with a honey body cream . My boobs were as soft as a babies bum . I showed the head radiographer the cream . She wasn`t impressed by it, said it probably wouldn`t be any better than aqueous cream.
we`ll see . Karen

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Re: How long does it keep burning?

Hello,

Finished rads 4 weeks ago and skin just about back to normal, although I think it's true about the microwave effect. Was told cabbage leaves very soothing, especially if cooled in the fridge, and they were! Aqueous was ok, but I hadn't realised the treated area was such a mathematically precise rectangle and I kept missing a bit until the burn marks showed up. Hmm. All sorted now, but a bit of the rectangle reacted in the burny/blistery way that Lily's described.

Re aloe vera gel: very common for rads patients to be given this in the States, apparently, and it's nice and cooling and has a skin-softening effect. I loved it on my prickly baldy bonce during the summer. Very soothing. But maybe not so protecting as the aqueous stuff. Easily obtained from H & B.

Hey Vertangie: about the worst thing you can do with a burn, frying pan or not, is stick cream on it. Cool the burn site (under running tap, bag of frozen peas,whatever), keep it clean and let air do its stuff...cover lightly with a dry dressing if necessary, if the burn's very bad clingfilm it and seek help, but cream, whatever brand, isn't a good move, no way, nohow...

At least that's what they tell us on First Aid courses. Thought it was worth while mentioning, just in case anyone's tempted.

Best to all,

L x

Re: How long does it keep burning?

Hi,
Angie, I have been using vit E on my scar right through too and while I have an almost invisible scar, it did not help the rads burn unfortunately. I have used aqueous cream at least 5 times each day, even starting it before rads, so disappointed with that.
The rads unit is 25 miles away in a different hospital and town, so none of my usual team are connected to it, although I can try to describe it over the phone! When I rang they would not say yes to aloe vera, only hydrocortisone cream. That took the heat out but not the itch and blisters that are popping and peeling. I am really surprised by it as I sailed through the treatments and had big gaps because of Christmas. Just my luck it started after I had finished. I have very dark hair and a slightly oily skin, so that theory didn't work for me. When I sunbathe I have no reaction at all, even at very high temperatures and then i suddenly go very brown and it stays for months, so I guess it is maybe following the same pattern. The homeopathic lavender burned so I am wary of using that again.
No air is getting to it as I am constantly freezing still and wear lots of layers, another factor maybe. My temp was only 34.4 earlier this week while I was quite active, so I am wrapping up or I shiver even with central heating and a blanket at times. I wonder if my thyroid has gone caput now! Peacock I was worried about oil too as suncreams and oils cook me in the sun more than no protection. Perhaps I cooked myself in aqueous cream. Yummy!!
Oh well at least I am not a horse. They might shoot me!! LOL
Thanks so much everyone. Sorry to worry those travelling along behind me down our snakes and ladders path.
I am trying the hanky next and going to try to buy aloe vera tomorrow.
Take care
Lily x

Re: How long does it keep burning?

Hi Lily,

Let me know if you have any luck with the aloe vera gel. Vertangie's recommendation of homeopathic burns is good. I'm keen on holistic medicine and will go and get that as well prior to the radiotherapy. I seem to try and get prepared for the next treatment by reading up on it or looking at what people hae said on here and try and be prepared for the worst case. At least if things go wrong etc., it's not such a shock.

I think my plan will be moisturise like hell leading up to the radiotherapy sessions, drink absolutely loads to keep hydrated, use almond oil and aloe vera gel and then use the burns cream if skin starts to redden etc. Whaddya think...good plan?

Thanks for starting this thread as lots of good ideas and helpful comments have come about .

Fiona

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Re: How long does it keep burning?

Peacock... Almond Oil (and I think Olive oil too) contain lots of vitamin E. That could be why I didn't suffer very much at all as I've been using vitamin e oil on the area since my mastectomy. It nourishes the skin so it would make sense that the nourishment would help avoid it drying out too much.

I was told some people react more than others and that while it's like sunburn whether you're prone to sunburn or not isn't really an indicator of how you'll react to the rads. I do burn easily (blonde and pale skin) but the rads hardly made me pink, but it did itch for a few days.

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Re: How long does it keep burning?

Vertangie, My homeoepath has recommended the nelsons burn cream too. I am awaiting radiotherapy probably at the end of Jan.

Re: How long does it keep burning?

Just got back from my 4th zap and reading this is a little worrying. Sorry to hear Lily that you are now suffering, after 3 weeks of treatment.
I've got some aloe vera gel which I have been using, but my rad team told me to use just almond oil or even olive oil. I thought that sounded a bit strange, surely if you're cooking anyway adding oil will cause a bigger burn???? Maybe that's just food though I'm thinking of.
Strangely enough today is the first day I've bothered (won't go into it) to wear a bra with my spongey thing, and can feel it rubbing already.
I will try the tips you have all suggested, perhaps to try prevention.
Not looking forward to the next 21 sessions.

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Re: How long does it keep burning?

Hi Lily

OOH you have my sympathy, it happened to me not long ago. Top tips, try to get as much air to your boobs as poss and after showering (warm not hot!) do not dry the sore area with a towel but with a cool hairderyer. I found "proper" bras uncomfy for a while so cut the bottom half off my swimming cozzie and wore the top half with foam cups (have big boobs) If you have larger breasts another tip is to put a clean cotton hanky folded under the breasts while no bra, stops the skin rubbing together

Wishing you better soon

Louise x

Re: How long does it keep burning?

Hi
thank you all so much for your posts and helpful ideas. I forgot to mention that I have been using aqueous cream religiously throughout each day, even starting it before the first zap. It seems to do no more than cool it for a couple of minutes on the worst part. The skin there is really dark and it has triggered lots of skin pigments like moles underneath too. I also have a red spotty rash all over the boob most of the time. I have a 9 month post op check with my surgeon on Monday, so I can see an expert fairly soon. The lavender gel from the homeopathic section that I was recommended was not helpful and even burnt a little at first, so not sure whether to persevere with that or not. I am going into a larger town tomorrow so hopefully aloe vera exists beyond the village boundary!!!!
Just one more hurdle to get over I guess
Thanks
lily x

Re: How long does it keep burning?

Hi,

It is like microwaving the skin apparently. Mine came out worse like everyone else's after I'd finished in spite of using aloe vera gel - allergic to the E45 and other cream they gave me at rads. Went to docs and was prescribed Fulcidin cream as it has hydrocortisone and some antiseptic/antibiotic stuff in it and that helped loads. Once it started to calm down I used Liz Earle skin repair (google the website) as I have that anyway - supposed to be a face moisturiser but I use it everywhere. Not cheap but gives just the best results. Still use it on scar 12 months on ! The rads area still looks a bit darker than the rest but it's not that bad & I'm sure it's only me who notices because I know what's happened !

Liz

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Re: How long does it keep burning?

Lilly have you got a holland and barrett near you. They do an Aloe Gel, I'd get the purest you can. But as you know I used Nelsons Burns Cream which really is a proper health shop thing and by the time you got it online the burning may have started to subside... Someone mentioned that rads is a bit like a microwave and you continue to cook for at least another week. It was about 2 in my case but I'm still sensitive, but not pink anymore but in all honesty I didn't go that pink. Although that burns cream really is that good that I've seared myself with a frying in the past, slapped on the old burns cream and not even blistered so that may be why.

Hope it goes down soon.

Angie

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Re: How long does it keep burning?

Lily I was told to use aloe vera gel - not the cream. I am still walloping on loads of aqueous cream which appears to be working wonders. Have you tried that?

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Re: How long does it keep burning?

Hi Lily,
I finished rads early in November and went on holiday 10 days later, my skin was just like yours..almost black and blistered and so sore!

I was first given hydrocortisone cream, but when I started to blister they told me not to use it on broken skin and they gave me Tri-adcortil cream which was brilliant.

I was also given geliperm dressings, you keep them in the fridge and the relief was fantastic (my B.C. nurse got me those so it`s worth asking your team)
After two weeks holiday (they didn`t need to tell me to keep out of the sun!)my skin was was pretty well healed.

I personally wouldn`t use anything that wasn`t recommended by your team its not worth the risk.

I went swimming today for the first time in nine months so I am on a high, there really is light at the end of the tunnel!

Good luck,
Love,
Janx

Re: How long does it keep burning?

Hi Lily

http://beta.breastcancercare.org.uk/upload/pdf/radiotherapy_mar_06_0.pdf

page 4 has some advice on caring for your skin while having radiotherapy,

Hope this helps

Ann

How long does it keep burning?

Hi,
I had 15 short rads to just the breast area and had no problems at all. However,the day after I finished them (new years day) the area unber the breast started to get darker and darker and darker and burn like I was on fire. it is now 8 days since finishing and is still really annoying. The skin is very dark and blisters appear and peel open, which is were the most irritation is. I phoned the rads unit and they would only recommend hydrocortisone cream, which I am using. It took the hot sting out quite well so I don't feel like I am about to go up in flames any more but it is still really irritating and making me squirm.
I have tried to get aloe vera cream but none in stock everywhere I have been (are you all out there buying it?) so today was told to try lavender.
Any good thoughts or ideas would be wonderful
Lily x