#51107 01-24-2005 03:43 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Dan visited his oral surgeon today and they have found a spot of leukoplakia again. We think that is what started the whole cancer thing before. Right now it is thin but growing. They will watch it very closely and if it changes or gets thick, they will have to cut his tongue again. It was so hard to hear that today. We are very thankful that there is no cancer seen at this point. The hard thing is there isn't any cure of leukoplakia and Dan seems to have the kind that does eventually turn into cancer cells. It's always so frightening and such a battle. However, we have felt God's presence even through the things we don't like to hear and I know God and some very good friends will be there for us for whatever lies in the future. Only God knows that and He is there to provide strength and courage...sorry just needed to vent a little bit.
Take care and God bless,
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#51108 01-24-2005 04:38 PM | Joined: Aug 2004 Posts: 217 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Aug 2004 Posts: 217 | Hello, Debbie.
I am crushed to hear that Dan - and you - are facing another test of courage. God IS there to strengthen you, and we will all do what we can to get you both through whatever comes your way.
You can be sure there will be new prayers being lifted tonight for you both.
Love
Nicki
Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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#51109 01-24-2005 08:48 PM | Joined: Jan 2005 Posts: 156 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2005 Posts: 156 | hi debbie sorry sorry things are not turning out so well for you both. stay positive these things are sent to try us god bless you both
regards maz | | |
#51110 01-25-2005 03:55 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Debbie
I'm so sorry that you two are facing something else, has Dan got a good team working for him? I know you recently moved, I'll say a prayer that it can be watched for a long time to come, maybe if it's a small area they can laser it off?
Sunshine...love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#51111 01-25-2005 04:30 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Debbie, I am thinking of you and Dan and praying it all works out. I have had the leukoplakia on my tongue, too. Doc was going to remove it in his office, however, it has gone away on its own. Email me if you want, [email protected]. Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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#51112 01-25-2005 11:21 AM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2004 Posts: 417 | Debbie
Our prayers go out to you and Dan. God Bless You!
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#51113 01-25-2005 02:17 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Debbie,
Sorry to hear of Dans dx. Hope you and Dan can weather this storm as well as you have in the past. How long did they say to watch it before they act? Seems like the sooner the better!!
God Bless, Danny boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#51114 01-25-2005 02:59 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Thanks guys for all the prayers and support. We have an oral surgeon here at UAB that was referred to us by an oral surgeon at U of MD and we still travel back every other month to MD to see Dan's oncologist at the U of MD.
Dan - we will see what Dan's ocologist says towards the end of FEB and then back to the oral surgeon here two weeks after that. Boy, don't we get tired of all the visits and scares, etc. God is good to have given me this site to vent and get support...it helps so much!
Thanks,
Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#51115 01-26-2005 06:47 AM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Debbie and Dan,
I am sorry to hear of the new challenges you are facing. Is it not something that can be biopsied and lasered off? You would think they would just remove it now and not let it grow. I will be praying for His wisdom and guidance for the medical team to provide the best possible course of action for Dan, His comfort and peace to fill your hearts and His healing hands to touch you both constantly.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#51116 01-26-2005 11:49 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Debbie, prayers for you and Dan. May the Lord look after you both and provide comfort to you and your family.
Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#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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