Confused about Radiation Moisturizing

macdebbie

Everything I read about radiation stresses how important it is to moisturize (with appropriate creams) after radiation treatment to provide comfort and prevent possible skin breakdown.

I had a horrific day today that I won't go into, but suffice it to say my radiation "Simulation" appointment today after which I was supposed to meet with the nurse for education about how to care for my skin, didn't happen thanks to the clinic dropping the ball and not getting my appointment pre-authorized (which I found out by accident after I had already driven an hour to get there).

So they rebooked me for tomorrow for BOTH appts - the simulation and first treatment - not sure how I feel about that as I was SO sore holding my arms over my head for 45 min for my first planning session. I called and asked to speak with a nurse to go over prep with me - can I shower, can I moisturize? If yes, with what? How far from my appt time does the moisturizing need to be? Can I use deodorant?

I didn't get to speak to the nurse - they called after hours and when I called back all I got was the answering service. But earlier in the day the admin of the radiation oncology dept told me that I could moisturize after my shower, but not within 2 hours.

The nurse was supposed to go over what I could use, but he never called me back. I asked the admin what I could use and she said they prefer that their patients use nothing. What?? I have a genetic skin condition called ichthyosis, and if I HAVE to moisturize to achieve anything even resembling normal skin. So NOT moisturizing is not an option.

And what about comfort for pain, redness, etc.? I don't get it. I'm starting to worry the place is really behind the times and starting to wonder now about the care. I asked if I could use Mepitel film, and she told me "no". She said everyone goes on the internet and finds things and wants to use them, and they like "simple" and as little as possible. MD Anderson uses Mepitel, so it's not some out there You Tube thing.

I'm stuck with this practice, as there are only 2 in the area and the other one doesn't take my insurance. But I am really confused on the conflicting moisturizing info. Can anyone recommend what I could use after my shower tomorrow (my appt isn't until 12N) - I have Calendula lotion, Avocado oil gel, something called "Nipple Cream" (it's great) which is calendula and olive oil, and Aquaphor, but that seems too thick for after shower moisturizing.

Thanks. Hope tomorrow goes better.

serendipity09

macdebbie. sounds like you had a rough day! The arms above my head for simulation was difficult for me too, but for the actual treatments will be doable as they are very short.

As far as moisturizing, the rule of thumb with MY radiation was nothing on the skin four hours prior. Maybe you can make sure to take your shower earlier to ensure you don't apply anything two hours prior to your appointment, then discus it in detail with them tomorrow.

Every RO is different. Some don't want their patients putting anything on until they are experiencing some type of discomfort. My RO was very strict as to what he wanted me to use.They provided me with Miaderm (has calendula in it) and that is all I used throughout rads. After I finished I switched to Aquaphor and a different calendula lotion. I was given Mepilex after I finished rads when the skin under my breast blistered. I am three weeks and two days after my last session and my skin has healed beautifully; a little pink still on the side of the breast and a little peeling, but that is it.

I really hope that tomorrow goes better for you and that all your questions are answered.

macdebbie

Thank you Serenipity. Yes, not a day I want to repeat.

I am worried about getting through the simulation and being as sore as I was the first time and then having to hold my arms above my head again for my first treatment. I was supposed to not have the radiation treatment the same day, but because of this mix-up now I have to.

How long is the actual radiation treatment?

Hopefully I can reach someone by 8am and they can tell me if what I plan to use is OK. Do you know what the timeframe is about? Does lotion react with the radiation beams?

TB90

Radiation burn comes from the inside out. I really feel that more education is needed prior to radiation therapy. It is preferential to put nothing on the skin. Similar to prior to receiving a mammogram. More seriously, the radiation beam can be affected by anything on the surface of the skin unless planned for like a bilious. If you have a skin condition then discuss with your dermatologist after advising them of your radiation. And then discuss with your RO too. The less you can use the better. But once symptoms start, you cannot prevent damage, but you can alleviate pain and discomfort. Even icing the area helps. Pure creams like aloe are also soothing. I hate to be harsh, but there are more important considerations than your skin. Like effectively beaming the area intended and avoiding unnecessary exposure to heart and lungs. Your skin will repair itself. It can get extremely painful towards the end, but then there are treatments. Prevention really isn’t possible. Most people experience very little discomfort. I ended up having pretty extreme pain, like a horrible sunburn after the radiation was done. It just keeps on working for up to two weeks after. This is nothing like the sun. But it was tolerable. All the best and perhaps you will just breeze through this.

ShetlandPony

You could just tell them No, I will not do both the simulation and the first treatment on the same day. And start treatment the following day. I thought the radiation oncologist needs time to check the simulation.

Why not put whatever you need on your skin right after your radiation session? I used homemade cold aloe vera gel as that was what my doc preferred and the store brands had additives which might irritate. No deodorant until after, and you will wash it off before your next session.

Since the problem is not really burns but skin that does not repair fast enough, I believe getting good sleep helps because our bodies heal while we sleep.

macdebbie

Hi ShetlandPony. I thought of that, because I don't want things rushed and things not done that were supposed to be done. I also wanted the proper sit down with the nurse for the education about the radiation and skin care. That was what was supposed to happen yesterday.

But I have 16 treatments, and I was supposed to have my last treatment the day before Thanksgiving. If I delay things a day, there will be Thanksgiving day, the following Friday, Saturday and Sunday in between before my last treatment and I the RO told me a treatments have to happen every day to be effective.

I LM for my RO to call me yesterday to discuss, but she never did. I don't know if that's common, but same thing happened with my BCS. After the surgery I couldn't get in to see her, and it seems I can't talk to my RO after the scheduled consult. Frustrating...

exbrnxgrl

macdebbie,

As you can see, there are different recommendations for skin maintenance and each doctor has their own preferences. I had rads to a bone met on my femur so it was a bit different but certain things seem to be fairly standard. No deodorant or anything on the skin prior to each rads session. I brought a bottle of aloe Vera gel with me and applied it when I was dressing after each tx. I then applied a very thin layer of Aquaphor 2-3 times a day and repeated this after each session. My skin pinked up a bit toward the end but nothing lasting. Again, different docs, different approaches. I had not heard of mepitel film so can’t comment on that. Most docs are fine with things like Aquaphor, aloe Vera, calendula, etc. so I wouldn’t fret too much . Take care

jhl

Debbie,

I am hoping today is going well for you. I was one who had both simulation and first treatment on the same day. I didn't need any blocks or masks made so the simulation part involving me was the length of time it took to have the CT. The dosimetrist and physicist were able to calculate my needs which were then approved by my rad onc. So, although the appointment was longer (about 2 hours) I was only on the table for about 30 minutes. Each subsequent treatment was less than 10 minutes of actual time on table. Each week I had one longer appointment (about 30 minutes) to rescan and verify the measurements had not changed. I had a brief meeting with the rad onc at that appointment who told me all was going well.

Take care,

Jane

Spookiesmom

I wouldn’t worry too much about thanksgiving. The first time I did rads, the machine either needed updating or repaired. Think it happened 3 times. Then weekend. Then my skin broke, so had a week off to heal, plus 2 weekends. I got through it all ok. You will too.

Each RO has their own preferences on what to use. Ask yours

serendipity09

TB90 is right, nothing is going to prepare the skin for what radiation may or may not do. For me, the Miaderm soothed my skin after every session, so that is why I used it. I know you read the August thread and it was a bit overwhelming to read some of our experiences. My experience was was not a good one from the beginning, and continued to get bad throughout and became worse for up to two weeks after my last session. My skin is now completely healed and all the pain I endured from rads is gone. As I mentioned to you in the other thread, everyone is different and will react differently.

Hoping everything went well for you today and that you had all your questions answered.