Neck Burns Poll
Merry Christmas first of all!
I don't want to jinx myself here, but I have been doing searches, and I'm having a hard time locating what I am looking for. I'm only really locating when the burns have gotten really bad for some people.
What week/s for you did your neck noticeably start to turn red and burn on the outside? I'm curious as my oncologist can see changes, but I don't notice it, and I am not having pain on the outside of my neck. Right now, I am strictly using aloe from my aloe plant all day. 100% coconut oil at night. I have Aquaphor, but it's just so greasy, and once it's on, you can't really place anything else on unless you wash it off.
I just want to avoid bad burns as best I can, and be proactive.
TIA and Merry Christmas!
I'm not mad at you Russ - Thanks - All my Best - Steph
Comments
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I was admitted to the Cancer Center hospital after radiation treatment #15, through the Emergency Dept with a " Very significant Pneumonia", as my Medical Oncologist related to me, when she came to see in in the hospital.
I was getting ruddy red then. Lower face, down into my upper chest. At Treatment #24 I was admitted again in very much Worse shape ( don't care to get into it all, today), and right lung has collapsed...Pneumonia worse, systemic infection, could not urinate, could not speak at all not swallow. My Candida mouth infection so severe that it was growing to outside my mouth ( remember, I was born immunodeficient. I started cancer treatments including chemo, with an Incomplete immune system to begin with).
That was #24 and I was a Deep Red color. That was the very least of my worries but I'm the Emergency Dept I got lots of states because this was March ( and I hadn't been to the beach!)
My Medical Oncologist rushed to the ED to see me, angrily saying that " He's burning you up, Crystal !!! He's giving you too much!! ". She was really angry...
I couldn't talk at all but I wrote down " No, I don't agree. He ( my R O) is trying to beat back my tumors. "
Anyway, right after week 2, then I started getting red. But honestly the only way I know that is by those Emergency Dept admissions to the hospital. The redeemed skin was the furthest thing from my worries. Because I had fever, Pneumonia, etc. I took very good care of my skin all along, just some blisters and peeling... But my Neutropenia, Very very low Lymphocytes, Pneumonia, dehydration, Pain etc were more affecting me .
Crystal
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You place me into reality rather quickly every time I read your experiences. You also make me realize how easy I have it right now, (I actually do. I may be going into my 4th week, but I have only had 11 treatments, I will also only have 4 treatment this coming week, so this will be dragged out to 8 weeks) and how much worse it could be. I know it will get worse before it gets better, but I also know there are so many people out there going through so much more than I am. I am amazed by your strength. As you say, you may be small, but you are MIGHTY.
I believe if I were in your situation, I don't think I would have been concerned about my neck very much either. I honestly don't know what I would be thinking. I just really wish they could get your lungs cleared up. I need to go read your last update again. I have read your posts on the other forum as well trying to keep track of you.
It's as if I think I can somehow be proactive and try to control this so the pain won't be as bad, but I don't know how much control if any I will have. I know I'm not sitting back smoking. I'm surely not partaking in having alcoholic beverages. I cannot see how those activities would possibly be helpful.
I wish my schedule would not have fallen over the holidays, as this is how it's gone:
First week: 3 days (wed-Fri)
Second Week: m-f (but there was a wreck that caused the fiber connection to go out and closed the office's internet down, appt on wed. cancelled) 4 day tx week.
3rd week: Holiday - tx 4 days
4th week: Holiday - tx 4 days
5-8-: m-f all 4 weeks - in the event no weird internet outage, etc at the office.
So, I am not sure If I would feel worse than I do If I would have had the few more days or not... But I have heard it's bad to skip radiation days... I don't know how this is a good way for me to be starting out.
Steph
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I'm glad all is well Steph-Thanks and Wishing You The Best-God Bless.
Actually from what I see you are doing exactly what is recommended by Piplilly here on CSN. Your regimen sounds perfect and you have Aquaphor as a backup.
And here is a video from Beagledad here on CSN (Don) our local Youtube celebrity which talks about it around the 12:00 minute mark but you may want to look at the whole thing if you haven't seen it he is talking about useful ideas for the Head & Neck Patient. Check out his videos and subscribe to his channel as he says there will be more coming.
Take Care-God Bless-Russ
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Yeah, I know.. My neck also had the lovely Scar running from behind each ear, around to the other ear from my Bilateral Neck dissection ( 55 nodes taken out on Right side and 25 taken out of left side) My Tracheostomy tube was out, by then.
Going through my Rads I was 69- 71 pounds. My tech at the machine would left me off the table, in both arms. They were so very worried about me because they knew all my other medical problems, too.
My tumors came back 9 months after my treatments and I had 2 more " Very extensive surgeries" as described by my surgeon. I went to my R O and I literally Begged him for more radiation. Just to the new area, please!! The Margin my surgeon got was only 1 millimeter, and from 5 other tumors experience, I knew that wasn't enough margin. So, I wanted more Radiation to mop up that area.
Dr. Frizzell said " He#! No, crystal". He told me it could rupture my carotid artery ... He refused me. But I was wanting to do it, because I've had so many recurrences and I wanted to blast it out of there.
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I used AQUAPHOR when it was really bad (pus etc), but later I used “calendula cream”; ordered on Amazon. There are several brands. Went on nicely and was very effective.
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Oh yes, Calendula products are really good! Another good cream to use was suggested my head & neck oncology surgeon---- Cocoa Butter with Vitamin E. Palmer's makes it and its also good for scars ( like tight neck dissection scars. Ouch) and it also Heals tape burn ( from bandaging) Its good on chapped hands ( from so much hand wsshing!), etc.
Nivea cream is good . The one that comes in a blue Glass jar. It seems sticky at first but then it absorbs.
Thank you ronniepalsa !
Crystal. P.S. I am off to bake a layer cake, for my sister who comes tomorrow. I myself cannot eat, or even taste ( 0 ability to taste,...buttercream, no taste !!)-- just because I've been baking since age 11!! Its something I love to do, and others really really enjoy my baking. I used to compete, and win! So, I still do it for others to enjoy.
Crystal
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I don't know what kind of doctors you are seeing Steph but this forum is about sharing and support and I can't imagine what they see against it. Why wouldn't they want you to get all the support you can for the most difficult thing you may ever face in your life. I would think any cancer doctor would encourage their patients to get support anywhere they can. Take for example this topic area here and what we discussed about helping people deal with neck burns during radiation and the other facets of this treatment like feeding tubes, pain meds, bandages, dry mouth, thick saliva, mouth rinses, chemo brain, neuropathy, and the list goes on of the many subjects discussed on here and people sharing their personal viewpoint of what worked best for them, a sharing of ideas that many doctors and care teams don't share with you and for that matter may not have the time to tell you everything. On here you can throw a subject out to a large audience and most likely someone has personal experience with it and can offer a point of view on it. It's up to you Steph follow your gut feelings. For me personally during my first cancer in treatment 2013 this forum is a Godsend. At the time the health campus I was getting my treatment done had just started a Head and Neck support group, in fact, my nurse navigator was the one who started it but we only met every other month for an hour so what do you do the other 59 days for support? Well, I was looking online and found this forum and they were discussing things that were happening to me and I had been wondering if it is a normal aspect of my treatment and they verified it on here as they were going through the same thing and sharing with each other how they were dealing with it. You can't beat info like this, info coming from people who have been there and are there and know what others are going through. Such as the posting Piplily made which I can't find right now but Don knows about it, the posting telling him what treatment to use for your neck during radiation. People may think this would work or maybe that but no you don't have to test a lot of stuff here is a bonafide user saying use this method it works great, forget all that other stuff you're wasting your money.
You can't buy what you get here at any price and it's free.
Take Care-God Bless-Russ
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Aquaphor for me. They had a big reed basket on a counter to take as many little tubes as you needed, and I took quite a few for the back of my neck. Would not say my Rad team were cutting-edge by a long shot, so there very well could be better stuff, especially since my tx was in 2009.
Merry Christmas Steph
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This is kind of off topic but here goes::: our own wonderful Author here , Mike Metzler, is still " giving" with his book, because I bought 8 of his books ( I have none left! I will buy more) and 3 of them, my last 3 were included in some people's Christmas gifts. They are reading it, today!
One went to the PA, whom is Director of the Hhead & Neck surgery Program here at the School of Medicine. Another went to a 6 year survivor, and the last one went to a retired Radiographer. He is so fascinated by it and has almost finished it, today. My own mother read the copy I gave her, in 3 days. She enjoyed it so much!!
90% of the proceeds go to the Head & Neck Cancer Alliance.. Please read it,
My Two Journeys in Cancer World by Mike Metzler
Crystal
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Mine hit right after I finished rads.
I woke up one morning, and my nightdress and hair were stuck to my neck, had to shower to get anything to 'let go'
Went to radiation dept in tears, Kathy my radiation nurse, took me to a room, came back with a cleaner (whose name I can't remember) and a cream.. also, cant remember.. padded dressing, and a tubular dressing.
My son cleaned it twice a day, then added cream and new dressing, then wrapped me in tubular bandage. Took 1 - 2 weeks for my skin to heal up, but apart from the later dissection, I have no scars
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Hi Sue J,
Your skin manifestations hit right at the Plateau, which a lot of people do not realize us After treatment ends. I am glad you has your son to help you dress the wounds.
I remember a few weeks after treatments, I woke up with the Submental Edema------ that ugly Turkey waddle under my chin. Ugh, what's this? I called my R O and he returned my call telling me it was Submental Edema. Over 3 years later, its mostly gone.... By the way, I'm really close to my R O. He is really a wonderful man. Last year I gave him a stitched artwork piece I made ( and art supplies for his son)--and wow, he sent me a Christmas card telling me how much they all enjoyed it. His wife wrote in the card telling me how perfectly it went, hanging in their den. And his son wrote in the card too.
Suz, they do take very good care of us. I've had that experience too, in head & neck surgery clinic. They Know what we go through.
Stay safe 😷
Crystal
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My neck/skin only got “bad” after my series of radiation treatments was over: 22 treatments, over 6 weeks. My neck got very red; broken skin in places and some pus. As stated before: treated with lots of Aquafor (resigned myself to changing sheets and pajamas often), and calendula cream.
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Hi Stephie75,
Just encase you did “jinx” yourself and I do not believe you have, there is (my favorite) treatment for sever neck burn ie Silver sulfadiazine Cream. This is fantastic stuff and I used a lot of it after I discovered it worked for me. Let me capitalize IT WORKED FOR ME. I have run into a few H&N members who did not like it. But, it took away all me pain and it leans toward being messy, but it worked, I liked it.
When ever I found a product that worked or a certain methodology I needed to follow to help get through the cancer treatment side effects, I would just do it! Messy or not, this stuff we all go through, the pain, the dry throat, the doubts and insecurity is all temporary and you will be on the other side soon and all these th
ingsyou have learned and employed to help you will all fade awayCivilMatt0 -
Hey Matt,
Silvadene is the common name for thst, and my Dermatologist prescribed it in 2 different strengths for me while I was going through Radiation. Silvadene.
The first more powerful strength was for me Neck. Then a lesser more safe formula for my Face ( my lower face was hit hard with radiation because of active and inoperable cancer on that level)
Silvadene is an old medicine and used widely for Burn patients... And other uses too, like diaper rash. It has several uses, in Drrm medicine.
Yes, it is Great for camping down the burns and healing them. I was told Strictly though to NEVER ever apply it, nor anything else before Going in to have your daily treatment. If you have Anything on the skin of the irradiated area, it can make things much worse!!
So, keep skin clean and dry and free from all lotions and creams, then go get the treatment and Afterwatd, apply the healing medicines. Next day, wash it all off and start clean again.
CivilMatt, you reminded me of this really potent prescription!
Crystal
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Every day when I got home from tx I applied a chilled rag to the neck area for 15 minutes then applied Aquaphor to the area. It was very greasy and I ruined several t-shirts but it was worth it. I had no redness or burning to the neck area. My oncologist was very complimentary of my neck after the radiation tx.
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I like your tactic, Big G, of using the chilled cloth first.
Yeah, just wear an old shirt, and if you have long hair like me, -- First pull the hair back into a Braid. A braid is better than a ponytail, because with a ponytail the hair will still get onto your neck and stick in the ointment. A braid will stay on your back. I do this a bedtime a lot anyway!
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My husband used hydrogel pads and antibiotic ointment for neck burns after radiation. At U of C, they used these while he was inpatient and we ordered them on Amazon for the weeks he was home. They really made a difference in keeping his skin hydrated and comfortable. We held them in place with gauze, but now I would use cling wrap around his neck, because in hind site, I think this would work better. Hope you find the products that work for you.
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Hi Steph, I mentioned it before, I used Lubriderm fragrance free lotion and still do. Right after treatment was done when I got in my car I’d apply it. I kept putting it on through out the entire day.
LitlCJdoll is spot on about going to your treatment clean and free of all products. No deodorant or anything until after treatment.
It will be impossible to not get burned, the key in my opinion is to try and not get blistered. It may or may not happen.
You can read and post what and when you want. It is up to you to discern what action and how you handle your own case with the help of your hired professionals.
Be well, Seige
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