#3185 08-03-2004 02:22 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello All, Haven't been on the board to much lately. Been busy landscaping a 6000 sq ft. lawn. Sodded 4500 sq.ft. of it three weeks ago. It looks great. Am waiting for rain to finisn the job. It hasn't rained more than 1/2" in the last 24 days. (poop) The reason I'm writing tonight is I wanted you to know I finished my last (scheduled) chemo session on Monday. I had a total of 6 treatments. I will be having an MRI of my neck this Friday. Meeet with the on'gist Monday, August 16th to get the results. Was taking Taxol & Carboplatin. I'm hoping the chemo has arrested the growth of my reoccurance. The scheduling Nurse came in with the appointment and had scheduled me to see the Doctor and than have another chemo session. This offended me for real. I told her that decision won't be made until after I see the doctor and get the scan results. At first the chemo didn't bother me but the last two sucked. If I am terminal what's the point? They can never tell you how long or whats going to happen. I would think if you work in the field and have seen so many cancer victims you would have a pretty good idea of what the progression will be like. I told my On'gist I was offended to a degree of her dx that I was terminal. How can I feel the same as I did 4 months ago and you tell me I am uncureable? The statement was not made in an angry way. Just something I felt I had to tell her. She said she understood. I am most curious about the progression of my reoccurance. What will happen to me? Will I be in pain. Will I suffer more than I already have? I want to let my friends at the OCF know how I'm doing and if her dx is correct I want to share my experience as I go down hill, and lean on you as much as I can. I've always said who understands more than someone who traveled the same path. I noticed there are several new members in the last couple of weeks. I welcome all of you to a website that has more to offer than any other I've experienced. I am proud to be a member of the Oral Cancer Foundation! I am honered to have so many friends from all over the world. I am counting down the days to Vegas. (53 Days) Remember anyone who can't attend can attach a photo to an email and send it to me. "No Nudes Allowed" Got that Gary  Well Ive rambled on enough for one posting but I wanted to say one more thing. "I love each and every one of you and the support I've received from so many people I've never met astounds me" Your Friend, Danny Boy No one can ever take away the friendships I have made on this site in the last year. There are to many to mention in one posting.
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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#3186 08-03-2004 02:48 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Danny,
I was just thinking about you today and wondering how the chemo was affecting you. Sounds like you are staying very busy in spite of it all. Remember that I pray to God everyday that the chemo shrinks those tumors into nothing...just burns them right outta there! We are moving to Birmingham, Alabama tomorrow so I will be off the board for a few days...Dan's PET/CT showed some activity of some kind in lung and also his supraglottic larynx...something more for me to worry about but so far they are not concerned...will wait for the next PET in 6 weeks. This disease sure is funky! I am a bit anxious about leaving my boys and my support system, but God has given me strength that I need and I rely on His peace and comfort on this new ride!!
Take care and I continue to pray for you and your family!
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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#3187 08-03-2004 03:54 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Danny Boy -- you're an amazing dude... I, too, am praying that those tumors will disappear into nothingness...
I think the word "terminal" should be eliminated from a doctor's vocab with regards to cancer. Tell me how serious things are yes, but don't pronounce me on the way to death. That rules out miracles and I'm sure for some causes them to give up the fight. Then terminal becomes a self-fulfilling prophecy...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#3188 08-03-2004 04:18 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Hi Dan and others, Danny I hope you do keep us posted what ever happens. I have even given some thought to asking Brian if there could be another category for "Terminal" posts. That is to say a place where we can share the thoughts and support of people that may be loosing their fight. It might be better to have a seperate space for us since by nature the subject may be difficult for newcomers.
Glad to hear you have that "piss and vinegar" attitude.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#3189 08-03-2004 04:40 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 | Hey Danny Boy!
I pray for you daily and wonder about you but I am so worried of taking even a moment of your precious time with your family.
I wish we lived a wee bit closer and I would be laying sod and helping you with the landscaping. I love anything that involves lawn or garden. I have worked about 9 dump trucks (3 yds each) of organic compost and such around the perimeter of our house. I planted about 80 shrubs and about 20 herbs in the herb garden. We usually plant about 500 flowers or so each spring and the same in the fall (pansies usually) to give some nice color around the house. We got behind a bit last year and are just getting around to plucking the bermuda out of the flower beds. (Actually, I paid someone to help.) I'll be sure and add a prayer for a little rain to help your sod.
Please feel free to lean on me all you want. I am sure that holds true for any us on the OCF Forum. I love you, too, brother and I am so looking forward to hanging with you in Las Vegas!
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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#3190 08-03-2004 10:32 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | Sorry Danny - no nude photo! I'm going to appear there in person. See you in Vegas...
Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#3191 08-04-2004 02:15 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Danny-boy
I suppose the only thing that is certain in our lives is that the word terminal has to apply one day, BUT I don't want to know when that day is to be and I'm sure you don't. Do what you have to and what you can in this fight against OC.. YOU make the choice of direction, you are travelling the road.
Wish I could get to meet you, but my operation date has been changed yet AGAIN, now I hope the 11th of Ausgust, so Vegas is a no show for me, WHEN I get my computer back I will mail a pic..
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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#3192 08-04-2004 02:39 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | Danny-
You have always been in my prayers and heart as you started this journey. Your beautiful landscaping project shows you are looking to the future as you fight this disease! What inner strength you have! Every day we have is a miracle and may you have many more. Know that you certainly aren't alone and we are walking with you. Love- Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#3193 08-04-2004 06:45 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Danny...you tell `em champ !
You obviously have a lot of energy, positive energy..our thoughts and prayers are with you.
Cheers
Marica
Caregiver to husband Pete DX 4/2003 stage IV base of tongue and doing great!
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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#3194 08-04-2004 07:40 AM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | Danny
I love your approach and attitude. That will get you far and hopefully very far relative to what the doctors have said. Please keep us posted and we are thinking, praying and supporting you through this.
SCC R-Tonsil T2 NO MO Dec 2003. Completed IMRT Radiation only to tonsils(72Gy) and neck(55Gy)March 04. Detected at age 50.
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