#68448 01-26-2008 04:20 AM | Joined: Jan 2004 Posts: 104 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Jan 2004 Posts: 104 | With what my dad is going through, it hasn't seemed right to share that I have seen our ENT on Fri. 1/18 for myself.
The lining of my mouth is burning like crazy, and the white lines that are across both my inner cheeks now have a "lacy" white appearance. The ENT I saw has taken wonderful care of my family for 20 years. I trust his opinion. He said he believes it looks like what my dad started out with. Either oral lichens planus, or oral leukoplakia. He said that although smoking isn't good for it, it didn't cause it. I have had the lichens planus rash on my wrists and feet since Feb. 07. So it makes sense to me that I might have it orally, and that would cause the burning as my feet burn like crazy too. My parents both had/have psoriasis, and my son has been diagnosed with Psoriatic arthritis. I've had problems with my immune system since my late teens, that Cleveland Clinic diagnosed as Lupus.
I see my Dads doctor at Cleveland Clinic on Tues. 1/29.
I don't know if he will biopsy then or not.
I'm shaking like a leaf writing this, I am scared.
I'm researching this site and web for info.
Came across a finding that was reported in Science news daily about avocados..."September 5, 2007
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Dell,, you seem so sweet and caring. I hate to hear of youo going thru this. If there is anything I can d, please let me know.. I have you in my prayers,, your Dad too.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jan 2004 Posts: 104 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jan 2004 Posts: 104 | Morning Jim,
Thanks for the kind words, thanks for being here!
Deb
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Dell , you have been here for me and I shall be here for you thruout whatever needs to be done. You are a sweet caring lady . I will be looking for posts from you to keep us updated.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Apr 2007 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2007 Posts: 794 | Oh Deb!! You tell of my biggest fear. You must be in such a panic knowing how difficult these tx's can be. On the positive side you were aggressive seeking help in your care--I'm so proud of you for being so strong!
My neighbor Maureen makes an awesome chicken salad with alvacado, as soon as I can get in touch with her I'll send the recipe out if you are intersted.
I'm hear if you need me.
Love,
Donna
Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | This SOUNDS like lichen planus, which your doctor is right is not related to tobacco use. Leukoplakia however is, and is common on the palate of smokers and the vestibule between the lips/cheeks and mandible in spit tobacco users. Both can have that lace like look, but it is most commonly associated with lichen planus. Lichen planus has never been shown conclusively to be a pre cancerous condition. Only 25% of leukoplakias turn into malignancies. That you have had LP elsewhere makes you a good candidate for it as your diagnosis.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Brian I was glad to see your answer ro Dell. She is a good friend of mine and I know this will put her mind at ease. It just relaxed mine. Thank You
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jan 2004 Posts: 104 Senior Member (100+ posts) | | OP Senior Member (100+ posts)
Joined: Jan 2004 Posts: 104 | Donna, I would like a copy of the chicken salad with avocado's recipe, it sounds delicious, and your support and friendship are a godsend!
Jim, your an angel on earth, I couldn't have even shared this with the group if it wasn't for your caring, you inspire me everyday!
Brian: I'm clinging to your knowledge and experience.
Thank you for sharing it with me.
Dad had oral lichens planus, and oral leukoplakia before T2 SCC,2 nodes.
DX10/23/03
IMRT 12/29/03.30 rad,3 boost.
Brachytherapy 3/8-3/11/04.
Recurrence Nov07 Stage IV.
4 Surgeries
No rads, no chemo
I have oral lichens planus,
thrush,leukoplakia 2/20/08
6/2/08 biopsies "inflammation"
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Avocados are delicious "as is." A really soft avocado can be eaten with a spoon straight from the shell. Avocado can be mashed and used like a spread, or instead of or combined with oil in a dressing. If acid is not a problem lemon juice or even better lime juice can be added to avocado. Try tuna with softened cream cheese and mashed avocado. Avocado can be chopped up and added to a salad. For people who can chew, try fennel(it is also called anise or finochoio and looks like celery with fern on top), avocado and olive oil and, if tolerated a little taragon or basalmic vinger. Tomatoes and avocados are a good combination.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Deb, thank you for the compliment. I know some that wouldn't agree with you about my being an angel. LOL..You are a special person yourself Mam.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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