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KJCorri
Posts: 14
Joined: Aug 2012

Hi,
My name is Kylie- I live in Maumelle, Arkansas (just north of Little Rock) and I was diagnosed with a stage 3 Sarcoma in my right maxillary sinus on June 29, 2012.

I feel blessed that several circumstances came together and I was seen by the Chairman of the department of otolaryngology- head and neck surgery-at the University or Arkansas for Medical Science (AKA- UAMS, where i am an employee) Dr. James Suen on July 2, and had surgery to remove said tumor on July 5th. Per Dr Suen, he got it all, clean margins, etc...(although the path report notes that one edge was questionable)

My tumor was very large- it had started eroding the bone in the bottom of my eye socket, it got the bone in front of my sinus, between my eye and my mouth, it infulltrated my nose and went all the way across to the outside edge of my cheek under the outside corner of my eye... I think if I had not had surgery when I did I might very well have lost my eye. I managed to keep my cheek bone so the shape of my face remains intact- something I was worried about if I have to admit it- and he managed to save a couple teeth on the right upper jaw so that one day I have a decent place to anchor some kind of dental partial to. Currently i have to wear an obturator so that i can speak normally and eat as i have a hole in my palate that opens into my sinus.

My Oncologist was not quite sure what to do with me- in the end we decided to go with what she called a "limb sparing" kind of protocol, usually something they would do for a sarcoma prior to surgery but she felt it would be the best choice when considering the overall impact on me and the benefits vs. the risks. I actually have my last chemo tomorrow, the second chemo day in the third of 3 two week sets. First week is Gemzar and the second week is Gemzar and Taxotere, and those two weeks are repeated three weeks apart- for a total of 3 sets. In between I am doing daily radiation. And- i would choose chemo over radiation anyday!!! As i said- my last chemo is tomorrow, and then i only have 7 readiation sessions left (out of 30).

I have had a lot of mouth issues, I have not had any solid food in about 4-6 weeks (i didn't keep track of exactly when i stoppd solids altogether) I am lucky that the radiation is aimed at my sinus- so although my mouth is involved- i have had no difficulty with actual swallowing. I have had thrush on top of all the blisters and ulcers, thankfully we took care of that and it hasn't been back. In addition to the mouth sores, I have also got blisters in my nose and i have to irrigate my nose several times a day with the same salt and soda mixture i usee to rinse my mouth. I am finally *really* feeling the pain in my mouth and my ENT- Dr Suen- prescribed the fentanyl patch for me yesterday, so far so good- better than just the percoset.

I've been a bit chatty- sorry about that- but i am just so glad to have found this discussion board. I have not had a chance to really share with folks that understand- although i have had excellent medical care- there are not that many options for local support groups. I have read through several posts/threads and have learned quite a bit already. Again- so glad that i finally found time to check out the threads and post, i have been so impressed with the positive support and feedback in everything i have read so far, i look forward to participating and helping support others.

Kylie

CivilMatt's picture
CivilMatt
Posts: 2954
Joined: May 2012

Hi Kylie,

Welcome to our neck of the woods. It sounds like you have been through a lot and are in very good hands.

I had Stage IVa, SCC, BOT, HPV+ and have been through surgery to remove a spot on my tongue and 1 lymph node on my neck, plus radiation and Erbitux chemotherapy.

It sounds like you are right in the middle of the worst part of rads. I would suggest Magic Mouth Wash, but have no idea if you are qualified to use it. Hopefully, the pain meds you described are working well.

There are others with the H&N forum which can identify with your particular conditions. I hope they drop in for a visit.

Best,

Matt

katenorwood
Posts: 1827
Joined: May 2012

Kylie,
Welcome to the group. I'm so glad you found us, there's quite a few very well informed survivors on board that can answer alot of questions for you. I'm trudging thru ACC (submandiblar gland removed "11). You sound you're in great hands...and will get through to the other side of treatments....praying with few side effects. Again welcome ! Katie

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

You meet the criteria for joining this exclusive group, and you are obviously tough enough to be a spokesperson. Sounds like youve gotten great care. Yours is a tough situation, but it looks like youve grabbed onto it and done what you could. I finished my second round of rads 8 months ago, with enough to my maxillary sinus to leave me a fair amount of sinus issues. Which seem to be slowly resolving. Be prepared for your radiarion symptoms to increase for awhile after completion of therapy. We all notice that. Your patch was a good idea, and you know you can supplement with pain pills as needed. I line in Rogers and get my healthcare in St Louis. Look forward to hearing from you.

Pat

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

Hi Kylie, welcome to our little slice of the internet. Sorry you have
to be here but you will be sure glad you found us. There are many
wonderful and suportive people that are like "Family" to each other.
I was stage II HPV+ tonsil, I only had 33 rads only, I'm almost 7 months
out now and doing pretty darn good, feeling fantastic, eating everything
even though it doesn't taste the same but eating non the less, doing
everything I did before C.
It does get better and you will soon be there, have FAITH and stay POSITIVE.

God bless
Tonsil dad,

Dan.

Grandmax4's picture
Grandmax4
Posts: 585
Joined: Dec 2011

this site is the best, advice and posters...sorry you are joining but you'll be able to get honest, compassionate answers here

ditto1
Posts: 630
Joined: Mar 2012

You can be chattie anytime you shared good information. I had BOT (base of tongue) Stage IV with multiple lymph nodes, 2 cisplatin chemos/ 9 Erbitux and 33 RADS. Six months of ups and downs but CT scan showed NED, hopefully so will my PET scan in December. So welcome to our group of great folks who will be here day or night for you. Good luck and prayers to you.

Skiffin16's picture
Skiffin16
Posts: 8086
Joined: Sep 2009

Sorry that you had to find your way here, but you have landed in an excellent place.

I was Dx, STG SCC Tonsils and Lymphnode HPV+ in January 2009..., clean an clear since Tx

You'll find much support here, awesome people ae here.

Best,
John

phrannie51's picture
phrannie51
Posts: 3721
Joined: Mar 2012

we all wish we could have missed out on. It sounds like you've gone thru a lot, with more to come....radiation is so hard! However you're in the single digits now, and next week at this time we'll be doing the countdown with you...4, 3, 2, 1....OVER!! :)

I'm glad you found this forum...the people here are SO supportive, knowledgable, and kind...a place to "land", and actually talk about the day to day stuff, that is so hard for others to relate to...like those mouth sores...They are horrible...they were the worst part of the whole thing for me, anyway. Once chemo and rads are over, they do heal up, and we get to start trying to eat again...it's slow, but time just keeps rollin' on.

You stick around, ask questions...and know you're not alone in this...

p

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Please don't apologize for being chatty - I prefer it - it gives us a better picture of you.

Sounds like you have hit the "intense" portion of rads. Glad teh fentanyl is helping.

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

Sorry I am so late in my posting a hello...can't add to what others have said...they got it all covered :).

Keep us posted and check in often ...we care!

Best,

Tim

Mikemetz's picture
Mikemetz
Posts: 343
Joined: Nov 2011

Sorry to hear that you pass the membership test for this exclusive club, but glad you found us. I was 2+ years post-treatment before I discovered this great group of people, and even though I had tremendous support while being treated--and since, it would have been nice to be in touch sooner with folks in my same boat. Keep in mind that you are probably not alone on anything you are experiencing, so be sure to ask any questions that you have--somebody will have "been there, done that" and can give you lots of insider information, advice, and support.

mike

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I've had my vocal cords removed, but that seems like a walk in the park compared to your ordeal. I hope you post often, I'm sure your story will be a source of encouragement to all of us. None of us want to be here. But since we do find ourselves in this condition, we do all we can to make the best of our new bodies. And I think we may even surprise ourselves some of the time. Rick.

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