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#137866 - 08/08/11 04:09 PM Re: Wondering if it's worth it [Re: Jenslp]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
Originally Posted By: Jenslp
Hey there -are your lips completely clean of any type of moisturizer during radiation? I had skin trouble on my chin and lips and kept moistuizer on during radiation treatments and made things so much worse - didn't even think about my chin being in the path of scattered radiation. When I realized what I was doing (after several weeks) I stopped and my lips and chin eased up quite a bit. Got a lecture from the radiation therapists too!
My lips got so swollen that they had to cut the lips out on my mask! Not sure if the solution for you is as easy (all things being relative during the hell of treatment) as it was for me- but I hope so.

I also tried a medicated lip balm by blistex which was cooling and a bit numbing - if you haven't tried it you might want to!
Good luck to you!


Yup. Lips were always wiped clean before.

As an update, apparently I've had a severe reaction, enough to suspend the radiation for a week until my mouth heals. I was burned to the point that I was sloughing off dead skin cells from my mouth (GOOD CELLS, dammit!), so if you can imagine how literally raw the entire inside of my mouth was as well as parts of my lips. I have an appointment on Thursday to see how I'm healing, but other than a scrip for Sulcrafate(sp) for pain and speed healing, I'm hoping I still have enough natural bodily tools to get healed.

One thing I intend to ask on Thursday is why the radiation is targeting the opposite side of my mouth, when all the initial analyses, including CT/PET scans did not show any metastasizing to any other area at all. Ironically, the raw mouth and lips from the burning has been on that non-cancerous side. Good cells were damaged unnecessarily, imo. Why? Just because that's protocol? Seems to me that's, er, overkill.

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#137867 - 08/08/11 04:13 PM Re: Wondering if it's worth it [Re: morgan44]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
Jen -- I literally have an arsenal of moisturizers, but found the best ones to be Bag Balm, plain Vaseline (although I did get a baby generic today that includes Vitamin E and Aloe Vera), and of all things a small tube of clear lip gloss that came with a Cover Girl lipstick. (Of course you can't find those separately..., so I'm glad other things work almost as well. Otherise, I'd be spending $10.00 on a lipstick combo just for the 2 inches of gloss!)

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#137869 - 08/08/11 06:14 PM Re: Wondering if it's worth it [Re: morgan44]
msmac Offline
Gold Member (200+ posts)

Registered: 05/01/11
Posts: 266
Loc: california
So sorry to hear that you are having such a hard time. Do your
doctors think your severe reaction is related to the Erbitux? Hope you find some relief very soon.
_________________________
Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.

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#137880 - 08/09/11 03:09 AM Re: Wondering if it's worth it [Re: msmac]
Jenslp Offline
Senior Member (100+ posts)

Registered: 11/24/10
Posts: 167
Loc: Seattle WA
Glad to hear you're smarter than me Morgan!:) I was hoping you weren't and that I might have solved the mystery of your miserable mouth! Sounds very bad - I hope the week off will be helpful with giving you a bit of a break and a little relief.

It really is amazing that the body has such an incredible capacity to heal itself - thank God or we'd all be in real trouble with the effects of this damn treament regimen!
_________________________
Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!

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#137891 - 08/09/11 01:56 PM Re: Wondering if it's worth it [Re: msmac]
Charm2017 Offline
Patient Advocate (old timer, 2000 posts)

Registered: 03/03/08
Posts: 3082
Loc: Alexandria VA
Maggie

I also question whether or not the "severe reaction" you are suffering through is related to the Erbitux. The anecdotal evidence is that the worse the "rash", the better the Erbitux is workint. But when it's not the rash but super sensitivity to radiation damage, that can be an indicator that the Erbitux is not working on the cancer, but on the "healthy" cells.
That's exactly what happened to me and in hindsight, the MO would have stopped the Erbitux and switched me to carboplatin.
Instead I kept getting Erbitux each week and each week more and more skin would peel off my face and neck until I had to start with Vigilon dressings for second degree burns.
It could not hurt to ask your doctors about this. Again, they still have no practical test to weed out the unfortunate patients like myself whose genetic twists render Erbitux worthless for head & neck cancer, although they do have them for patients taking Erbitux for colon cancer. But excessive radiation dermatitis and failure of skin to grow back is a signal of concern.
Keep the Faith
Charm
_________________________
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13

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#137896 - 08/09/11 04:58 PM Re: Wondering if it's worth it [Re: msmac]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
No, the reaction wasn't from the Erbitux. I've actually had only two of those treatments, but my usual weekly one scheduled for tomorrow was also canceled since I guess the plan is to partner with the radiation. I've had no reaction to the Erbitux except for the one day of constipation which was easily resolved :/, and which I'll get ahead of next time by popping a laxative as soon as I get home that day.

Today my lips are a little better, formed some scabbing overnight and itch a little (a good sign), but still extremely dry. I'm hoping for a little progress every day until I have to go back under that hideous thing next Monday. (That part is a breeze; it's what comes later, as everyone knows.)

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#137899 - 08/09/11 05:01 PM Re: Wondering if it's worth it [Re: morgan44]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
I guess copying a smiley into a post doesn't give you a visual? A picture says a thousand words. ( smirk ) Oh well, maybe I should read the directions. Ya think?

Now it worked. Go figure.


Edited by morgan44 (08/09/11 05:02 PM)
Edit Reason: 'tis a miracle

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#137920 - 08/10/11 02:19 AM Re: Wondering if it's worth it [Re: morgan44]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 870
Loc: Ohio
Hi, Margie
do you happen to have dental work that could be causing scatter onto your lips? Probably not but a question couldn't hurt.

You wrote - "One thing I intend to ask on Thursday is why the radiation is targeting the opposite side of my mouth, when all the initial analyses, including CT/PET scans did not show any metastasizing to any other area at all."

The target volume delivered to the tumor and other areas that would be likely candidates for it spreading will be as per guidelines (such as the NCCN ones on the site) and your doctors' judgement. In addition, there is going to be scatter to areas where they don't want the radiation to go, but can't just tell it to go in 2.5 inches, then stop. Your RO should be able to show you how the radiation is being painted on the tumor; if he hasn't discussed this with you in detail, don't be afraid to ask.
_________________________
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

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#137940 - 08/10/11 04:34 PM Re: Wondering if it's worth it [Re: Maria]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
Thanks. I plan to ask specifically about the targeted radiation tomorrow, because no, it was not really explained to me (in lay terms). My teeth aren't the problem, because I've been a denture wearer for 16 years (can't wear them now, however). Ironically, I initially thought the sore on my tongue was caused by denture friction, which I'd had before but it eventually went away just like a kanker sore does. So of course I invested $900 in a new set of lowers, which were worn down and not creating a good fit with the uppers. Then this happened. Murphy's Law. I think I wore the new ones twice, so when cancer treatment is finished, I will need to go back and have my dentures refitted.


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#137942 - 08/10/11 04:49 PM Re: Wondering if it's worth it [Re: Charm2017]
morgan44 Offline
Contributing Member (25+ posts)

Registered: 07/08/11
Posts: 33
Loc: VT
Thanks for the heads up, Charm, about Erbitux possibly being the culprit giving me the "rash" inside instead of outside. But I haven't had an Erbitux infusion for two weeks now, so one would think I would have had this particular reaction before now. (??)

Another question to ask tomorrow. (I'm sure he looooooves to see me coming with my little notebook!)

This is Day Three on the two meds for the hoof 'n mouth disease (Sorry, but I can't help but make jokes because if my brain tried to absorb all the medical terms, I probably would be dreaming in calculus all night.) The sloughing process is rather 'interesting' and it does seem to be working. I only have one lesion on the outside of my lip now, but my whole mouth area is still red and mean looking. Pain is tolerable, but the goo is back, although not collecting in my throat and gagging me like it did initially. I've found that Arizona ice tea with honey and ginseng works better than water for keeping the inside of my mouth fresh(er) and moist.

I'll give ya'll a full report after the consult tomorrow. I really appreciate this site and the opportunity to share, vent, learn. It's a Godsend.

Maggie

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