#51117 01-27-2005 05:09 AM | Joined: Jun 2004 Posts: 85 Senior Member (75+ posts) |  Senior Member (75+ posts)
Joined: Jun 2004 Posts: 85 | Debbie,
Hang in there girl. I find that I rejoice and laugh on the good days and cry on the hard days. You are right, this cancer and dealing with it is very frightning. Stay focused and stay in the moment.(easier said than done...I know) Take each day as it comes. The future is unpredictable so don't worry about it until you have to.
I'm so sorry to hear of your recurrence and I continue to keep all..ALL... of you in my prayers.
Psalm 17:6
Brenda, David's wife
T1N0M0 Partial Glossectomy 2/04, Recurrance w/ another P.G. 5/04. IMRTx33 7/04-9/04. T2N2M0 recurrance in throat, 11/04.
2nd tumor 1/06/05, Chemo 1/11-05 Died 02-16-05 Wife: Brenda
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#51118 01-27-2005 05:58 AM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Hi Debbie,
Keep us updated on what they decide to do with Dan's treatment. I'll keep both of you in my prayers.
Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#51119 02-06-2005 03:25 AM | Joined: Jan 2004 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2004 Posts: 104 | Debbie,
There is now new treatment for oral lichens planis that is very promising!
My dad is seeing a dermatologist at The Cleveland Clinic for oral lichens planis and they are doing treatment that includes...
dislucan 200 mg tablet, 1 weekly
soriatane 10 mg capsule, 1 daily
dexamethasone .5 mg 1-2 tsp daily, oral rinse no bad aftertaste! Makes the pain go away!
He is receiving oral injections about every 4 weeks, he didn't have the name of the medication available for me this morning, but he will get it and I will pass it along to you.
And he is to brush his tongue with Adolf's Meat tenderizer.
This treatment was recommended by his cancer team, and has been wonderfully successful, and the dermatologist is now part of his team.
Debbie, my dad says these treatments have turned his condition around! He was treated for SCC T2 with 33 IMRT treatments, 3 boost treatments, and 5 days of oral brachytherapy in Jan. & Feb. 04.
This treatment has made his pain go away, he can now eat anything he wants and his taste buds are almost normal. His saliva is also better. He is so happy! We want to share this amazing new treatment for lichens planis with everyone.
I will get the name of the medication that is injected, and share that as soon as possible.
Good luck to you and Dan, Debbie, you are in my prayers.
Edited to say, the size of the spots of lichens planis is reducing to what my dad says is level now. The treatments have enabled him to eat and drink without burning pain, and have reduced the spots, it's amazing! Maybe there is finally a breakthrough for this pre-cancerous conditon.
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"
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#51120 02-06-2005 04:00 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Deb
This sounds very encouraging,I am so glad it was successful for you Dad, it`s not a protocol I can ever remember hearing about.
What about the rest of you guys ? Brian?
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#51121 03-05-2005 02:59 AM | Joined: Jan 2004 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2004 Posts: 104 | I'm sorry it has taken so long to get the name of the medicine that Cleveland Clinic is injecting into the lichens planis areas of my dad's mouth, he had his one year follow up appointment yesterday and the name of the injected medicine is Kenalog. At first, he received the injections plus the treatments mentioned above about every 4 weeks, now it will be every 6 weeks. This therapy has greatly improved his quality of life.
I hope it can help others as well.
Best regards,
Deb Ellis
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"
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