Issues with Lips - Oral Cancer Support - Survivor / Patient Forum

I have been having alot of issues with my lips the past two to three months, in particular my bottom lip. It's beyond any type of chapped lips, this hurts and is getting to be a problem. They will start to feel perfectly fine and then it seems to start all over again with the burning, small blisters and sore areas, etc. I should own stock in vaseline intensive care lip therapy. I didn't have these issues until January, after we took a ski trip. About two days after we got home my lips swelled up like a balloon and after some steroids, etc., they went down. Took about three to four weeks and they started to feel better..............then they would swell up again...............start to feel better. It's really strange. My bottom lip is always sore, red and has kind of a burning sensation. Anyone else experience this?

Minnie,I know you are an "outdoor" gal. Have seen you on a horse. But being a [long ago skier], I wonder if your lips got excessive exposure to the sun and cold, and maybe the sun block you were using on your lips while skiing had a chemical in it that you are allergic to? Amy

Dear Minnie,

Not sure if this is your problem or this will help at all, but a long time ago I learned that any lip product that has "petrolatum" in it will cause the lips to dry out. It actually sucks the moisture out. Amazing as it may seem, most "Vaseline" products and many other brands are petroleum based. Even Chap Stick has it. I think thatt Bonnie Belle (sp) is one brand that has no petrolatum in it.

Check the ingredints in what you are using and try switching. If you can't find anything in your area, send me your address. I always stock up when I ski out west where these are more readily available and I'm pretty sure that I have extras in the house. I'll send you one.

Jerry

Minnea
Could you have picked up the "cold sore" virus?
Exposure to sun can make it kick up.
When I get this I use a prescription product , Denavir, and it really helps.
Marica

Minnie,
After radiation my mom being blonde and blue eyed developed skin cancers on her scalp, lips and shoulders. They are squamous cell but very slow growing skin cancers. Maybe you should see a dermatologist. Most of them were frozen off but some had to be surgically removed.

I have heard the same thing as Jerry regarding the petroleum based lip ointments. I don't know if you guys have Victoria's Secret out there but they make a great lip moisturizer that works miracles for your lips. Let me know if you would like me to send you a tube?

Take Care,
Dani

Hi Minniea, I think you replied to a post from me a couple of weeks ago. I had the same exact thing done that you have had , but, my was done Feb 28 of this year. Starting Rad on the 18 of April. Anyway, I have extreme pain in my lower lip. To the touch, it feels numb, but, it hurts so badly and feels like it is on fire. I told Docs about this yesterday, and needless to say, they got side tracked and I forgot to ask them again.
I know this wasn't any help, but, when I go back, I'll talk to them again.

Your "pain in the lip" buddy...LOL

Molly

My personal experience with Chap Stick is that it is an absolutely worthless product that actually makes the condition worse. Try speaking with a local esthetician and get a product that works.

Addendum
I spoke with my wife, who is a licensed esthetician and she recommended:

Epicuren Lip Balm - comes in stick or tub forms, spf 15 - no petroleum.

Another is Zilactin-Lip, also in stick form - indicated for sun blisters, dry, chapped lips and cold sores. spf 24 - no petroleum Zila Pharmacueticals I was not able to verify the existence of the product although, interestingly, thay are marketing the "Viz Lite Plus" for oral cancer detection http://www.vizilite.com/

Gary
Chap stick has on peculiar property, it is brilliant for a sore nose during a streaming cold..
Sorry I digress from the topic
Sunshine... love and hugs
Helen

You could use Vaseline for that and it's a lot cheaper - but what do I know?!?! I live in the San Francsico Bay Area and we never even have a freeze here!

Thanks for all the replies. Gary, I'm trying to track down the two types you mentioned, thank your wife for me please.

Dani, my doctors saw me in January when all this started. Said they didn't see anything that was worrisome to them. My lips will be red, will have some small blisters, but they eventually heal and feel like they're getting better. Then we will have a weather change, and boom, they're crazy acting again. What type of symptoms did your mom experience with her lips? I want to make sure I don't need to investigate this further.

Here's a link to Epicuren, they have a list of people who sell it. It's mainly only available in spas on on-line.

http://www.epicuren.com/PuvPrtcton.htm

Here's another interesting link on lip balm in general - enjoy:

http://www.kevdo.com/lipbalm/industry.html

Minnie,

Her lips were dry and cracked and there was one spot that had a sort of blister she would use chapstick and it would seem a little better but never got completely better so yours sounds different. We have a history of skin cancer in our family because of our light skin and hair her dermatologist says that the cancers would of shown up eventually even if she didn't have the radiation but the radiation just made them come out quicker. Both her ENT and dermatologist say they are not related to her oral cancer. What did your doctors say that it was? It doesn't seem like the same thing as my mom. I wouldn't worry about it. Since radiation my moms skin just hasn't been the same. I'm sure a lot of people have problems with their skin after radiation especially those with fair skin.

Take Care,

Just another suggestion for a product to try... my husband was given this by a nurse's aide when he was an inpatient second week after radiation began. It is Toothette Mouth Moisturizer, made by Sage Products, Inc. (Reorder No. 6083) Phone: 1-800-323-2220. It works very well for dryness and burning. It doesn't have any petroleum in the ingredients. It can be used inside the mouth as well.

Michele

Chapstick conspiracy............I'm still laughing at that one! Have any of you REALLY looked at the HUNDREDS of chapsticks available? Crazy.

Dani, your moms lips do sound different then mine. Mine are not cracking, they just feel dry, get red, have become swollen twice now and will have tiny blisters in the morning. They also burn at times. They feel much better since I stopped using the Vaseling intensive care. I started using Carmex until I can find what Gary's wife suggested, and there has been a dramatic difference. I was literally putting the Intensive care on my lips approx. every 15 minutes, I was hostage to the stuff. Now, I'm only feeling the need to use the Carmex every few hours............and my lips are the normal color now. Still a tiny bit sore and still feel dryer then usual, but that may be all the weather changes in my area.

Gary, my daughter is in San Diego for the week, she arrived today. None of us has ever been to the West Coast and she said it's just beautiful. Her fiance is graduating from the Marines bootcamp out there and they may stay there for awhile.

I lived in San Diego for 2 years while I was on active duty in the Navy there. Had a lot of fun and wild times...

I particularly liked the chapstick 12 step program - complete with traditions - VERY funny!

That was a big thing in Napoleon Dynamite.

Dear Minnie,

Glad your lips are getting better. Perhaps you missed my post on the 3rd. I would be more than happy to mail you a lip balm without petrolatum.

If you want one, just send me your address.

Jerry

Thats strange how using something that is supposed sooth and cure chapped lips was actually making them worse. My daughter would get really bad chapped skin under her pacifier and I tried a bunch of stuff and Carmex was the only thing that cured her chapped lips too. I'm so glad your lips are getting better. Is your daughter thinking of moving to San Diego? It is very nice there and theres lots to do. If you ever come out to California I would love to meet you!

Take Care,
Dani

THE CHAPSTICK CONSPIRACY........I cannot stop laughing about it. I've had so many conversations with my friends about this in the past few days. My best friend is a "Chapstick Addict" and she is "drying out" she calls it. So funny the things she says. But, she did say that spending two days MAKING herself resist putting chapstick on and lengthening the time between applications has made her lips feel more naturally moist.

Dani, if her fiancee is stationed in San Diego for his school (he's in the JAG division) then we don't know what she will do. He's hoping for a school in North Carolina that is only two hours away so she doesn't have to worry about moving. She's attends Regent University and really loves it. So, we'll see. If she ends up out there, I can promise that every month she will have one of her sisters or her father and I there visiting her...........so we'll have to meet up! I'd love to meet you also.

Jerry, I did get your post. I believe it was you that stated not to use petroleum as it actually makes the lips dryer. You are right! Thanks for the advice.

Chapstick Conspiracy...................hey everyone, ask Gary about the 12 Step Program for this.................and visit the website he linked us with, it's hysterical.

There is also a product called soothe & shine - I bought mine at Walmart I believe. It is made by oraLabs and I have never had the drying out that I have experienced with chapstick and other brands that you are describing. It has no petroleum - but has mineral oil and corn oil instead. It is very light and non - greasy. I've been using it for a year or so and love it. Mine is in a purple tube - but that might have changed - and it has SPF of 15 already in it. It was pretty cheap too!