Radiation doubts

StageThree

49 years old. BC Stage3 invasive lobular, 8 out of 16 lymph nodes positive. 5.2mm tumor, clear margins. Was not staged until after Bi-lat surgery in June 2017. ER+/ PR+/ Her2 Neg.

Finished chemo Dec. 2017. 8 treatments: 4 AC, 4 Taxol. Had nausea with AC and used marinol for relief. Taxol was easier than AC. Had trouble sleeping due to steroids and Benadryl for a few days after. Did end up losing my two big toenails. Hair is coming back slowly but happy about that. It was my second best feature next to my OG breasts.

I am in the middle of rad treatments. Prescribed 31. Have 11 left. During the 4th week started having extreme pain. Couldn't sleep. Had no rad last week due to this. Skin peeling and raw. They won't allow use of lidocaine- not much of a reason was given. Prescribed a narcotic for my pain!!! Really? No topical relief... stumped. I had been using aloe gel (no alcohol) and organic cold pressed coconut oil. They told me to stop using coconut oil and I tried miaderm, no help, r1/r2 gel, no help!!! I need help.

Unresponsive medical office didn't return call Friday. Suffering through the weekend. Started using coconut oil again and now triple antibiotic ointment. Afraid of infection now. Feel like I'm getting the run around. Told to do what makes me comfortable but not given any alternatives to coconut oil except products that have all kinds of crap in them including alcohol. WTH?

Anyone out there quit rads? How do I get through 11 more if I'm already this miserable. Would rather do chemo. All of the people who are part of my support group said rads was a cake walk. So frustrated and confused.

Appreciate any words of wisdom.

Thx- StageThree, Tampa

Bonnie7

Hi there,

Sorry to hear of yr pain/discomfort and hope u receive some helpful replies soon! Can u try fresh aloe vera?

I had rads 16 yrs ago, skin held up through out and blistered on the second last day, but had a reconstruction 2014 (lat dorsi) followed by a reoccurence (not certain these were related!) chemo over and now expecting to start rads in March - worried re same as I am pretty small, all ribs and bones with implant out and wonder how my skin will hold out this time!

Sounds like you need a break, you don't go back out in the sun if you are sun burned and in Scotland they say "if in doubt, do nought".

Good luck xx

gb2115

The not wanting you to use coconut oil is because it's hard to completely wash off and will just make your burns worse. If any is left on your skin it will act like a boost on the skin surface, which is not what you want. And you can't scrub that off radiated or peeling skin. With lidocaine I think there's something about it being dangerous applied to broken skin, I don't know, maybe you absorb more of the active drug.

I don't have an answer... I had problems during rads that took a dermatologist to fix. They couldn't help me at radiation because I ended up being allergic to the one product they wanted me to use. It was frustrating.

If it were me, tomorrow I would bust in there and make them help you. I feel like there is a special bandage you can put on peeling skin to soothe it, but I don't know what it's called. I had to threaten going to the ER for sedatives...that got me an emergency derm appointment. But yeah if they specifically tell you to avoid a product definitely consider listening. And if you need the painkillers there is no shame in that.

Hope you feel better!

Georgia1

Good morning and I'm so sorry this is tough on you and it doesn't seem like your RO is being helpful. Most of us slathered on Aquaphor three times a day and stopped wearing bras altogether. Taking melatonin to help you sleep also helps.

Calendula cream is proven to help reduce the redness but Aquaphor is better for broken skin. You can alternate as needed.

I'd also suggest you say hello over on the "going through rads in February" board. Having a supportive online posse really helped me. Do hang in there! After you're done the skin heals pretty quickly.

cindyanne

I am sorry you are having such difficulty. I have had radiation twice in the same area........Fifteen years apart. This last one my skin did get raw towards the end. My RO prescribed silvaderm cream.....works great!

Legomaster225

I got Spand gel pads from the RO when my skin was bad. They were refrigerated and helped soothe the skin. They devised a netting that went over my shoulder that helped hold them in place.

Aquafor was the only lotion I used.

melmcbee

You arent stuck fir the weekend. I would call the rad doctor thats on call and ask for medicine to be called in to put on it. Thats his job. I also used silvadene cream but I cant remember whether I used it during active treatment or after it was over. I also remember there were medicated cold pads I put on. I burned bad too. The doctors job is to help patients get through all of their treatment. I would call him. Prayers and healing hugs

StageThree

Thank you for your responses! I’m just waking up and will try calling their office for on call doctor. RO had all last week to come up with solutions and never offered these relief pads that I keep reading about. Specifically when I told them I work full time and can’t take a narcotic during the day and must have said a dozen times that I wanted topical relief. Also, my RO DOC just has his nurses deal with me. Not fond of him right now.

Funny thing about the coconut oil is I feel less residue from that then the aquafor which is basically Vaseline and think it relieves better and it’s natural with no other ingredients or alcohol. Aquafor has alcohol in it. Also no bra since treatment #20.

I unfortunately can’t use silvaderm due to an allergy. I got Silva sorb and it doesn’t go on easy - rolls up into balls.

I know it’s up to me to get through the best way I can. Just feel so defeated and angry with RO.

Thanks for prayers an well wishes. I’m sending the same to you all.

macb04

I quit, didn't do the last 7 boost. I was burnt straight through to my back. I had ooozing, bleeding sores. I couldn't keep them safely covered, the Telfa would shift, then the sore would stick to my shirt, tear loose the forming scabs and then the blood would run down my chest. I was on narcotics for the pain, which was unreal. See my thread,

Topic: Wish I had never,never done rads, DEEP REGRETS

Forum: Radiation Therapy - Before, During and After — What to expect from treatment and ways to cope with side effects.