Hi all.I haven't been on here for quite a few months as I was super unwell with chemo, (that's a story in itself) My chemo has come to a close now due to many side effects etc, so now I move to the next phase Radiation.While I have the info all laid out in black and white, its always helpful to hear from you all on any thing that made your treatment more manageable or not.I have 6 weeks of this to look forward to, plus I'm told they will also be targeting my lower neck, that was bit of a surprise to me, as I was on the understanding it would be left breast and left arm pit from.I suffer from dermatitis too just to add in another layer of pain, so I do react to many different lotions.I did ask about this special skin plaster that's like a film they can lay over the area to also protect the skin, (they don't use it at where I'm being sent to)So asking nicely if anyone out there may have some helpful tips or tricks they found that worked for them? I will be driving myself to treatment as I have no other way to get there.Its a short drive thankfully. Thanks for sharing :) have a great day all

Hi Maree,Really sorry to hear you had such a rough time with chemo. The good news is not everyone has a bad experience with radiation skin wise, so I'm really hoping you all into that bucket despite your dermatitis. The oncologists said it's impossible to judge how you might react, so it's not really related to skin type (I have Irish skin, but that wasn't a problem). Almost everyone seems to have some fatigue though.I finished on Wednesday, and got through with only some redness by the end - like mild sunburn (not painful), although I've been told it will continue coming to the skin's surface for a couple of weeks, maybe slightly worse but not much. My radiation was the five-week one which was at a lower dose than the shorter version - so your six weeks may be at a lower dose as well. My oncologist decided to give me the five week version because they were covering such a large area going up to the lymph nodes in my neck, which sounds like what you're having.I used strata xrt - not every hospital is into it. Here in WA, they gave me lots of sample tubes, and I was given a card (stamped by the hospital) which gives a 40% discount if you order from Stratpharma direct - I also got one from Breast Care WA, the lovely nurse there sent me a 10g tube, I don't know where she got that from!) so there may be other organisations who have a discount card.It's hard to know for sure whether the Strata made a difference, but the nurse I saw this week certainly thinks so. You apply it very thinly, but you still might use a bit if you have a large area to cover. I bought a 20g tube and was given about 25g worth of free sample tubes. I did use the sorbolene in the evenings because I might not have had enough otherwise, I'm still going on my 10g tube now. A nurse told me to ask for more samples if I needed them, but I didn't.The other things to consider are - because you have to spread the strata quite thin, you have to apply very gently so as not to stretch the skin. A nurse told me to put little dots of it on the area and then spread out gently to join the dots. So I put the dots especially on the reddest area, then spread out gently from there. It didn't wind up being a problem for me but if your skin got tender it might be tricky, if that makes sense. If you are able to get samples, you could try it out for a little while before ordering the $100 tube (hopefully reduced to $60 plus postage).Secondly - in favour of the strata, you can have a shower in the morning, put it on and let it dry a few minutes, then it doesn't matter when you have your radiation. Whereas with sorbolene, I was told you shouldn't put that on within a couple of hours before going to radiation, as it can attract the radiation to the surface of the skin (or something like that - at least that's what a nurse told me).Also - the only pain I experienced was, after a little while, stretching my arm back in position for the radiation sessions. There was a little stretch on the front of my chest. So do your physio exercises religiously, and if it gets too bad, go see a physio. I was going to see the hospital physios, but I only had a little while to go and it didn't get too bad, since I was doing my exercises, and the radiation sessions are so short.Anyway I hope that helps in some way, all the best with it. :)

Hi @Maree72 I used the strata xrt and it did the trick - I had to send away overseas to get it - my facility ( Genesis Care in Sydney) gave me discount coupons but it was still expensive)There is a trick to applying it - the nurses showed me how.I had 28 sessions after a mastectomy and had only mild pinkness.

@Maree72 Oh my, you’ve really had a rough time through this, haven’t you 😟. I’m happy you’re sticking up for yourself though. Good on you! I know it’s not easy to ‘be loud’ at such a vulnerable time, but sometimes it’s absolutely necessary and you’re doing well for yourself 💖. Stay in touch and let us know if you get either the Mepitel or Strata cream, and how it goes 🙌🏻🤍.

@Maree72 .... I've just been told to take Vit D too - apparently it is for a bit of a pain relief too!@FLClover may be able to chat with you about it - she ordered her own (when her Rads place normally don't use it) and had it put on prior to the first treatment - you can read her story here:https://onlinenetwork.bcna.org.au/discussion/22492/help-on-mepitel-film/p1 (page 2 is when she bought her own.) xx

Thanks @arpie ☺️😘, I’m very happy to help. Hi @Maree72 🙂. So sorry to hear you going through all this as well. It’s not a fun ride at all. I was also told that my rads centre didn’t use Mepitel, but I’d read so many positive comments on it, I was determined to use it. So, I ordered a pack of my own online and my oncologist said they’d use it. When I turned up for my first session, the technicians said they didn’t know what it was and how to use it. Basically, they wanted to go ahead without it. I was almost in tears because I was so desperate to use it. Let me just say, thank goodness I persisted!!!! It saved my skin!! And, luckily my onc showed up just then and told the technicians I wanted to use it and had a nurse put it on for me. It needs to be applied before your first season, or it won’t be as effective. Now, I had had a DMX with expanders put in. Big, curvy expanders. As one technician called them, bricks (😄). Therefore, it absolutely is possible to use the Mepitel even when you have breasts there. It’s very hard to apply and it’s really fiddly, so I think that’s why most centres and nurses don’t like it. But they’re not the ones who might be burnt to a crisp. I had a couple small areas where I got burnt because the Mepitel had come off due to sweating, and believe me, it’s PAINFUL. Really really painful. I almost felt sick from the pain, and it wasn’t even all over my breasts. So I’m beyond thankful that I stuck up for myself and got it used for me. The skin on my breasts didn’t burn at all, and was smooth as a baby’s bottom as soon as I took off the dressing. It’s beyond worth it. There’s also a cream that you mentioned too, which is just as effective apparently, called StrataXR or something like that. Lots of ladies swear by it. It’s expensive but also worth it. Please look into these things and insist on them. They can’t deny you these things, and remember, they’re not the ones who’ll be in possible severe pain. Good luck with it all 🍀, and please ask me any more questions you might have. I’m happy to answer all ☺️. M Xx

tip or tricks on getting through radiation?

arpie
Member
12 months ago
So sorry to hear you had such a rough time of your chemo @Maree72  xx I hope the side effects have stopped now xx

Maybe cook up some meals now & freeze them, so you don't have to worry about cooking when you get home after your treatment?

With your dermatitis - take whatever lotions you know won't make anything worse ..... be aware that the flesh WILL be rather warm during & after treatment finishes (which feels really weird, but you really only notice it when you put your hand on the area!) It is Very important to maintain the lotions for a good 6 weeks after treatment finishes, too, possibly more, as most of us only have up to 4 weeks Rads. The flesh continues to stay warm for some weeks, so important to keep the moisturisers up to it.

Weird that they don't use the Mepitel (or similar) skin .... did they give a reason for not using it? It really is to the patient's advantage to have it - usually causing less burning & skin breakdown .... so that's a big bummer! Maybe ask your Onc if THEY can source some for you - particularly as your skin is susceptible to dermatitis ... they do NOT want you to get an infection whilst the treatment is going on!!

You may feel a bit of fatigue from about the halfway mark - so be kind to yourself when you get home. Make a cuppa & put your feet up ..... sometimes there is a lot of sitting around before your treatment, so take your iPad or magazines/Suduko to while away the time xx.

My own Rads treatment was 1.5hrs away, so I stayed at the Hospital Lodge for patients/family & only went home on weekends for the 4 weeks.

Take care & all the best
Maree72
Member
12 months ago
@arpie , thank you for your message
when I asked about the film dressing, I was told they don’t use it as they don’t find it effective for patients who still have their breast , apparently it dose not sit well with all our curves etc
they offer this cream instead ? Forgotten the name of it if I’m honest

I have another appointment with them this coming Thursday before I sign on the dotted line to agree to treatment

my oncologist has recommend me to start taking vitamin D plus calcium supplements
so I’ve stated that yesterday in lead up to being zap by radiation

thanks again for your reply to my question
arpie
Member
12 months ago
@Maree72 .... I've just been told to take Vit D too - apparently it is for a bit of a pain relief too!

@FLClover may be able to chat with you about it - she ordered her own (when her Rads place normally don't use it) and had it put on prior to the first treatment - you can read her story here:
https://onlinenetwork.bcna.org.au/discussion/22492/help-on-mepitel-film/p1
(page 2 is when she bought her own.)

xx
FLClover
Member
12 months ago
Thanks @arpie ☺️😘, I’m very happy to help.

Hi @Maree72 🙂. So sorry to hear you going through all this as well. It’s not a fun ride at all.
I was also told that my rads centre didn’t use Mepitel, but I’d read so many positive comments on it, I was determined to use it. So, I ordered a pack of my own online and my oncologist said they’d use it. When I turned up for my first session, the technicians said they didn’t know what it was and how to use it. Basically, they wanted to go ahead without it. I was almost in tears because I was so desperate to use it. Let me just say, thank goodness I persisted!!!! It saved my skin!! And, luckily my onc showed up just then and told the technicians I wanted to use it and had a nurse put it on for me. It needs to be applied before your first season, or it won’t be as effective.
Now, I had had a DMX with expanders put in. Big, curvy expanders. As one technician called them, bricks (😄). Therefore, it absolutely is possible to use the Mepitel even when you have breasts there. It’s very hard to apply and it’s really fiddly, so I think that’s why most centres and nurses don’t like it. But they’re not the ones who might be burnt to a crisp. I had a couple small areas where I got burnt because the Mepitel had come off due to sweating, and believe me, it’s PAINFUL. Really really painful. I almost felt sick from the pain, and it wasn’t even all over my breasts. So I’m beyond thankful that I stuck up for myself and got it used for me. The skin on my breasts didn’t burn at all, and was smooth as a baby’s bottom as soon as I took off the dressing. It’s beyond worth it.
There’s also a cream that you mentioned too, which is just as effective apparently, called StrataXR or something like that. Lots of ladies swear by it. It’s expensive but also worth it. Please look into these things and insist on them. They can’t deny you these things, and remember, they’re not the ones who’ll be in possible severe pain.

Good luck with it all 🍀, and please ask me any more questions you might have. I’m happy to answer all ☺️.

M Xx
Maree72
Member
12 months ago
@FLClover thank you
yes StrataXR is the cream the rad oncologist spoke about
nearly or over $100 per tube so I’m lead to believe
that’s the cream the centre uses
I’ve found in this cancer journey you have to be your own advocate with strong will power
by goodness did I have to use every inch of mine during the fight to keep my breast as the medical team wanted me to have a mastectomy, but here in qld there’s up to a 2 year waiting list for reconstruction
and then there’s conditions you have to meet to be considered for the reconstruction too

then through the horrifying chemotherapy treatment journey I had to really become my own voice a very loud one when things went wrong with the picc line, the blood clots, all the side effects etc right up to Good Friday’s massive holy to carrying on with chemo

so I’m getting use to being my own boss so to speak

thank you for your advice
I’ll definitely take it on board and research into the options

thanks again
HelenlovesSnoop
Member
12 months ago
Hi Maree,

Really sorry to hear you had such a rough time with chemo.

The good news is not everyone has a bad experience with radiation skin wise, so I'm really hoping you all into that bucket despite your dermatitis. The oncologists said it's impossible to judge how you might react, so it's not really related to skin type (I have Irish skin, but that wasn't a problem). Almost everyone seems to have some fatigue though.

I finished on Wednesday, and got through with only some redness by the end - like mild sunburn (not painful), although I've been told it will continue coming to the skin's surface for a couple of weeks, maybe slightly worse but not much. My radiation was the five-week one which was at a lower dose than the shorter version - so your six weeks may be at a lower dose as well. My oncologist decided to give me the five week version because they were covering such a large area going up to the lymph nodes in my neck, which sounds like what you're having.

I used strata xrt - not every hospital is into it. Here in WA, they gave me lots of sample tubes, and I was given a card (stamped by the hospital) which gives a 40% discount if you order from Stratpharma direct - I also got one from Breast Care WA, the lovely nurse there sent me a 10g tube, I don't know where she got that from!) so there may be other organisations who have a discount card.

It's hard to know for sure whether the Strata made a difference, but the nurse I saw this week certainly thinks so. You apply it very thinly, but you still might use a bit if you have a large area to cover. I bought a 20g tube and was given about 25g worth of free sample tubes. I did use the sorbolene in the evenings because I might not have had enough otherwise, I'm still going on my 10g tube now. A nurse told me to ask for more samples if I needed them, but I didn't.

The other things to consider are - because you have to spread the strata quite thin, you have to apply very gently so as not to stretch the skin. A nurse told me to put little dots of it on the area and then spread out gently to join the dots. So I put the dots especially on the reddest area, then spread out gently from there. It didn't wind up being a problem for me but if your skin got tender it might be tricky, if that makes sense. If you are able to get samples, you could try it out for a little while before ordering the $100 tube (hopefully reduced to $60 plus postage).

Secondly - in favour of the strata, you can have a shower in the morning, put it on and let it dry a few minutes, then it doesn't matter when you have your radiation. Whereas with sorbolene, I was told you shouldn't put that on within a couple of hours before going to radiation, as it can attract the radiation to the surface of the skin (or something like that - at least that's what a nurse told me).

Also - the only pain I experienced was, after a little while, stretching my arm back in position for the radiation sessions. There was a little stretch on the front of my chest. So do your physio exercises religiously, and if it gets too bad, go see a physio. I was going to see the hospital physios, but I only had a little while to go and it didn't get too bad, since I was doing my exercises, and the radiation sessions are so short.

Anyway I hope that helps in some way, all the best with it. :)
Maree72
Member
12 months ago
@HelenlovesSnoopy that’s some solid advice
thank you
i was hoping to ask for samples to see if I react, fingers crossed I don’t
thanks again
FLClover
Member
12 months ago
@Maree72 Oh my, you’ve really had a rough time through this, haven’t you 😟. I’m happy you’re sticking up for yourself though. Good on you! I know it’s not easy to ‘be loud’ at such a vulnerable time, but sometimes it’s absolutely necessary and you’re doing well for yourself 💖.

Stay in touch and let us know if you get either the Mepitel or Strata cream, and how it goes 🙌🏻🤍.
Julez1958
Member
12 months ago
Hi @Maree72
I used the strata xrt and it did the trick - I had to send away overseas to get it - my facility ( Genesis Care in Sydney) gave me discount coupons but it was still expensive)
There is a trick to applying it - the nurses showed me how.
I had 28 sessions after a mastectomy and had only mild pinkness.
Maree72
Member
12 months ago
@Julez1958 thank you for sharing
I’ll be definitely asking more questions this week when I go back to see the rad oncologist
I’m pleased to hear that your experience was a positive one
that’s fantastic
I’m hoping that radiation may be kinder to me than the chemo round
I have 30 sessions to look forward to
so hearing your story gives me hope
thanks for sharing