#37409 06-01-2004 02:55 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello All,
Met with the medical on'gist today. Any Chemo if I decide to take it would be purly pallative. She suggested Texol & Carboptztin (Cisptztin) but had reservations about it doing any good. She suggests repeat scans at 6 weeks and again at 12 weeks. She was honest an upfront. I thank her for that.
She ordered a cat scan of my chest and lungs for this Friday,June 4th. A MRI of head and neck for Monday, June 7th and a Cat scan on June 9th of my neck. Pick up all films on Friday June 11th and see the on'gist again on Tuesday, June 15th. Will have a much clearer picture than.
Her best guess is anywhere fron 3 to 6 months. Im betting much longer. I am a stubborn son of a Bitch!!!! Thanks again for all your kind words and support,
Love, 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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#37410 06-01-2004 03:28 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: Dec 2003 Posts: 528 | Dear Dan
I am desperately sad to read your news. You are in my heart - your courage and determination are inspiring. I am sending positive energy to you and your family.
From Helen, with love
RHTonsil SCC Stage IV tx completed May 03
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#37411 06-01-2004 04:00 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | Dan,
Pretty much crushed to hear that news. Hoping for all the best, and am betting on your side as to much longer.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#37412 06-01-2004 04:30 PM | Joined: Apr 2003 Posts: 13 Member | | Member
Joined: Apr 2003 Posts: 13 | Dan,
was sad to hear your news. Has anyone suggested photodynamic therapy. I don't know much about it but I am one to just keep looking for new things. I have heard it is usful for some people. Hope your scans go better.
shirley | | |
#37413 06-01-2004 05:01 PM | Joined: Dec 2003 Posts: 116 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Dec 2003 Posts: 116 | Dear Dan, It's good to have a plan! I think it's hopeful, time-wise, that your doc is scheduling tests to "see where things stand." Scott's docs didn't bother ordering tests because they knew he only had a few weeks after that third recurrence. Up-front and honest is best. I'm glad you and your doc seem to be on the same page. Stay stubborn!!!   Christine
Wife of Scott: SCC, Stage I retromolar 10/02--33 rad; recurrence 10/03--Docetaxol, 5FU, Cisplatin; 1/04 radical right neck, hard palate, right tonsil; recurrence 2/04--mets to skin and neck; Xeloda and palliative care 3/04-4/04; died 5/01/04.
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#37414 06-01-2004 06:13 PM | Joined: Jul 2003 Posts: 235 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2003 Posts: 235 | Dan,
I'm at a bit of a loss for words. Your spirit and strength is relentless, and we're all here to help in any way we can. Please email me anytime for whatever reason. You know I'm here for you buddy. Talk with you soon.
D
Mom's caregvr. DDS failed to dx 01/03. Dx Stg IV SCC 05/03. Induct. chemo, IMRT, 5FU, H, Iressa, Neck disect, radiation. Dad's caregvr. Dx 01/04 Ext. Stg SCLC. Mets to liver/bone 08/04. Died 11/12/04. Mom tongue CA dx 06/13, hemiglossectomy (80% removed) 08/13. Clean margins and nodes, but PNI. 6/15/15: Tongue CA at base of remnant tongue. Declined further tx; hospice.
Died 10/13/15. What a long and difficult journey.
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#37415 06-01-2004 10:21 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Dan
Take what ever treatment they offer.. that's the only way to defeat the odds..
prayers.. love and big 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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#37416 06-02-2004 01:01 AM | Joined: Apr 2002 Posts: 80 Likes: 1 Senior Member (75+ posts) | | Senior Member (75+ posts)
Joined: Apr 2002 Posts: 80 Likes: 1 | Dan, my prayers are with you and your family. Lots of love your way!
JOAN
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#37417 06-02-2004 02:14 AM | Joined: Apr 2003 Posts: 148 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2003 Posts: 148 | Danny,
I am so sorry to hear your news. I wish wish wish there was something I could do for you. I have a luminaria in your honor at our Relay for Life on Friday night.
My thoughts and prayers are with you and your family, and all of your family here, too.
Sincerely,
Lisa in Ks
Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
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#37418 06-02-2004 02:54 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2004 Posts: 1,116 | Danny, only God knows how much time each of has on this earth. I am praying for you and thinking of you....Keep Looking Up!!! 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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#37419 06-02-2004 04:33 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Dan: Very sorry to hear your news. Keep fighting because there is no way to be sure until the fat lady sings. Your positive attitude can be the difference. My prayers are with you and your family. Prayer works and if it is the Lord's plan, it will work for you also. I pray he will be with you and your family as you work through this and fight it. Love, Kirk.
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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#37420 06-02-2004 04:49 AM | Joined: Apr 2004 Posts: 50 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2004 Posts: 50 | Dan,
I have not been on this site long, diagnosed in early April. You have the heart of a lion. I am proud to have made your acquaintance.
Best regards,
John | | |
#37421 06-02-2004 07:26 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Dan,
Can't they move any faster than that on this? Why can't they get the tests scheduled sooner and why is this oncologist waiting so long to see you? I just had a CT scan of the lungs at a major cancer center. Took 24hr for appt and results from scan done at 5:PM were available the following morning. If I were you, I'd push to get the tests and appointment moved up. I'd also get a second opinion on surgery, chemo, and clinical trials at a major cancel center and I'd make that appointment now so you don't have another 2 weeks after the films are ready. Someone else just posted about having successful surgery on an inoperable tumor after getting a second opinion. How did your ENT and oncologist possibly miss all this and it get so out of control? Keep fighting!
You are in everyone's hearts and prayers.
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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#37422 06-02-2004 08:24 AM | Joined: Mar 2003 Posts: 251 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Mar 2003 Posts: 251 | Dan,
I admire your courage and fortitude in the face of all you are going through. You truly are an inspiration.
Anita
Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
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#37423 06-02-2004 09:00 AM | Joined: Aug 2003 Posts: 71 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2003 Posts: 71 | Dan,
You are in my prayers day and night. Keep fighting, and as my husband says "never ever give up!". I am going to send you a story on private email. I read it yesterday and I know that the prayers everyone sent my husband's way are what are keeping him alive. You have the prayers of not only your family and friends but everyone here on the OCF...remember they are your "guards" in this fight...and they are sending loads of love & protection. You are an inspiration.
Lorie/wife of Don, DX:8-7-03, Tonsil cancer left side stage III, IMRT x 35, 6 chemo (Cisplatin/Taxol), clear CT Scan 12-26-2003. Mets to both lungs & AML 11-6-05, mets to brain Jan 2006, mets to liver & bones April 2006, passed away July 20, 2006.
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#37424 06-02-2004 09:13 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | Keeping fighting, my friend. And as someone else said, keep being stubborn against this!! I, too, would advocate being a bulldog with appointments, second opinions and such -- you deserve to be at the head of the line...
Praying for miracles for you and that you would know the peace "that passes all understanding" during this time...
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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#37425 06-02-2004 09:16 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Dec 2003 Posts: 207 | One more thing -- I've been reading a lot lately about nuitrition and the fight against cancer spread. I realize there is a lot of bogus info out there and it's hard to separate the wheat from the chaff, but some of this stuff also makes a lot of sense at least to my small mind (i.e. propping up your immune system with good eating, etc.)... Might be worth considering some of these "alternative" approaches in addition to all the familiar stuff, if you haven't already...
Love ya, kid... hang in there...
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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#37426 06-02-2004 09:39 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Dear Danny,
My heart and prayers go out to you and your family...I do pray for you everyday. You have and continue to be such an inspiration to me and to Dan, and to so many people on this board. I pray that they can find something to treat the cancer and for healing. Phil. 4:13 says "I can do all things thru Christ which strengthens me". Hang in there and know that you are loved!
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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#37427 06-02-2004 10:42 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 | Danny Boy,
I just want you to know how much we all love you and the prayers for you that are taking place all over the world. You are a true warrior and have touched me in so many ways, so many times. As everyone else has said, whatever you need please do not hesitate to ask. Somehow, someway it will be done for you, my friend.
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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#37428 06-02-2004 10:44 AM | Joined: Apr 2004 Posts: 146 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 146 | Dan,
My heart breaks for you and your family. Keep your spirits up and keep fighting and being as stubborn as a mule if need be. We're all here for you and my prayers and uplifting thoughts are being sent your way.
Hang in there - we need you!
Hugs, Nancy
Stage IV oral cancer (tongue), T3N2, total glossectomy with right and left modified neck dissection 7/03, rad /chemo ended 11/03
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#37429 06-02-2004 10:50 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Dear Dan,
You are the bravest and strongest man I know, as well as being one of the most generous.
3 to 6 months, "PHOOEY" they don`t know you very well!
You are being prayed for all over the world and we all know prayers work.
May your God go with You.
Love
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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#37430 06-02-2004 03:41 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | Dear Dan, it is heartbreaking to read your news. Please remember that the verdict given by the doctor is never final. No one knows how long one lives and there are a lot of stories about terminal patients who survive much much longer than doctors' projection. My gut feeling is that you will be one of them for sure! Be strong and take whatever treatment available and have faith in it.
Karen.
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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#37431 06-02-2004 04:36 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Aug 2003 Posts: 1,627 | Danny,
Will you and your family be ok financially? I know you just went back to work. Please let us know.
3 months, 6 months, 6 years, whatever it may be, live it your way on your terms.
Love,
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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#37432 06-02-2004 11:35 PM | Joined: Sep 2003 Posts: 30 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2003 Posts: 30 | Danny, My prayers are with you and your family.
Keep up the fight and don't give up.
Mary | | |
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