#17400 04-22-2005 10:35 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Joyce, thanks for writing. I am so happy to see that you are doing so well after a stage 4 and aggressive follow-up.
I am well on my way toward recovery with 2,5 weeks under my belt I am eating almost normally, however slowly and speaking as I did before. It amazes me how much tongue has grown back already.
I have been back to my office, but not treating patients yet and we have been aggresively discussing updating out oral screening procedures. We will be setting up a trainig session soon with another forum member who does in office presentations. I intend to include my entire staff of 24 in the process and not just the docs and the hygienists. It is so important to me to get everyone motivated along the lines of early detection.
Thnaks for being a member of this group.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#17401 04-23-2005 01:44 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Jerry,
Glad to hear you are doing so well. Looks like you caught it at it's earliest stage. Most of us are found in the mid to late stage of this cancer.
As you know the goal of Brian's Oral Cancer Foundation is "EARLY DETECTION SAVES LIVES"
It was nice to see you make the same goal. Again I welcome you to this forum and hope you can contribute as much information as you can.
Best Wishes, 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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#17402 04-25-2005 05:12 PM | 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 | Hi Jerry, Edd and Joyce!
Welcome to the neighborhood, although I am sorry you had to find us and your automatic membership form.
May every tomorrow be better than today!
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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#17403 04-26-2005 02:06 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Jerry,
You can probably 'toss a brick into my house from where you are'. I'm across the river in Trenton and got caught in the latest flood.
I'm am glad you are recovering so well and now advocating early detection in your practice. It is so important. Email me if you need any help with local PTs etc. I got a good one in Lawrenceville.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#17404 04-30-2005 08:50 AM | Joined: Apr 2005 Posts: 3 Member | | Member
Joined: Apr 2005 Posts: 3 | Hi Jerry
Thanks very much for replying to my posting. I did write a reply to you and I thought I'd sent it but since it doesn't seem to have appeared on the board I must have done something wrong! i'm not too used to message boards and I did have a lot of computer problems just after I joined so was off line for a bit. All sorted now so will try again.
I have been told the obturator causes problems with regurgitation because it is not a perfect fit but they can't make another one till after my mouth has finished healing. I am getting used to the frequent nose blowing that accompanies meal times!
You are asked about my radiotherapy - it will be aimed at the cancer site. i have now had the mould made for my head and I start the treatments on May 11th. not looking forward to it as I am feeling so well now that it will seem a backward step to have to experience the various side effects I have been warned about (and yes I have been told about the loss of my salivary glands). Still I keep thinking that in a few months time this will all be history and hopefully that will be an end to it.
I think it is great that you are going to encourage mouth cancer awareness in your practice. I have my dentist to thank for referring me.
Glad you are recovering so well.
Best wishes, maggie
maggie
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