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#38238 02-23-2005 09:58 AM
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Robr Offline OP
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Hi all,

I just finished my 1 year follow up visit. I can proudly say that they kicked me out for 6 months.

All clear after one year.

To my family out here, thank you so much for your kind words, prayers, smart ass comments, tears, hope, joy. I love you all.

To all newbies, no matter what happens, every second of every day, is a gift.
Yes, you will feel normal again.
And most of all PLEASE PLEASE PLEASE do your homework and get the best care out there. You owe it to your family if not yourself.

Thanks you all.

Robert, Christine, Alison, Robby, Tommy, Billy, and Scotty Hamilton


SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
#38239 02-23-2005 10:05 AM
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Dear Robert and Family,

CONGRATULATIONS!!! That is fantastic news, all clear for one year! I love hearing this kind of news, it gives the rest of us a lot of hope. I'm sure you are walking on air right now. Hope you and your family go out and celebrate tonight, you deserve it.

Thank you,

Shelley


Caregiver to husband, Ron. Throat cancer, Stage II. No Chemo or Surgery. Completed 35 Radiation Treatments in November 2004.
#38240 02-23-2005 11:08 AM
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Rob,
Great news!
Best Regards,
Dave


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.
#38241 02-23-2005 11:17 AM
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Wonderful news, Robert.

These posts are the best ones for me to bring to Tom. - - Although I think he's turned a psychological corner, he is often depressed with the slow rate of recovery - esp. weight gain. He hates the sound of his voice, which used to be very strong and a great tenor. He is hoping once his throat allows more solid food down that the voice will return a bit (??) What say you out there?

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.
#38242 02-23-2005 12:08 PM
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Rob
Yeahhhh congratulations to you and your
family. I just love good news.
Nicki
It will get better , eventually. Like the rest of the guys patience is probably not his strong suit!

Take care
Marica


Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
#38243 02-23-2005 01:18 PM
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Marica - you are right-on when you say patience is not his strong suit. He's a stubborn fellow - very strong-willed - and he refuses to stand in line for a movie or restaurant or museum or ANYTHING now that I think about it! He is one of the hardest working men I know, and this has realllllly put the brakes on that aspect of his life. He's coping OK with that part because he has such a strong team at work and the business is thriving. He is NOT coping well with not being able to do things around the house like he always has. I told him that would get better because it HAS to! smile
He is exercising his arms, shoulders and neck and that at least makes him feel productive.
(Boy, I just realized how much I missed talking to everyone here! I can't stay away so long...!)
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.
#38244 02-23-2005 02:30 PM
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Robert, good news to cheer us up. Your doctor is really confident about your health as he won't be seeing you until 6 months later. I am still on a 14 week interval although I am approaching my 4 year mark. Maybe your cancer is of an earlier stage than mine. My advice is in between your next appointment, always be on the alert to your body.
Nicki, me too! The first thing I turned on the computer every morning is to get to OCF to read members' messages and I look forward to reading good news.

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.
#38245 02-23-2005 02:57 PM
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Robert,

Congratulations! I got good news from my doc last Thursday. That's 2 years, 2 months, 2 weeks and 6 days after my initial surgery... but who's counting? Live strong!

Ken


SCCA T2N1M0 diagnosed 11/02, radical neck dissection, 7 weeks radiation, 6 surgeries to deal with osteonecrosis, 10 weeks hyperbaric oxygen. "Live strong. Laugh often."
#38246 02-23-2005 03:18 PM
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Hi Robert,
I was so excited with my one year check up.........I'm glad you get to feel the same way! You have a beautiful family and this news must make their day also.
I'm with Karen on keeping a close watch on your body during the 6 months until you go to the doctor again. I am 7 months ahead of you and still see my doctor every other month.
Take care,
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.
#38247 02-24-2005 08:30 AM
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Robr Offline OP
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Hi Thanks everyone. I agree and do keep quite a good tab on things that are going on. While I was treated and diagnosed stage IV, my metastasis was 2.8 to 3.0 depending on the measurement. I personally believe that I am stage III and two of my three doctors (Surgeon, Oncologist) agree.

However, my Radiation Oncologist (who in my opinion holds the key) said stage IV and he wont hear any arguments to the contrary.

So catagorigly and historically speaking I had a small primary (1.6cm) border line (III,IV) met. I was considered a very curable case.
Of course we all know what that information is worth. Remember Lynn?

Once again, thanks for your concern. I check my neck nodes at least two hundred times a day and try to feel inside my mouth in the morning and at night (you all know the drill).

Also, since I wrote my first post my Surgeon


SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
#38248 02-24-2005 09:15 AM
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Congratulations Robert and your family

How wonderful for you all, big celebrations in Libertyville I'm sure. Thankyou for your inspiring post.

I was very similar to you Robert, RH tonsil (remnant), very small primary but major lymph spread. I am 2 yrs out and doing well also. Like you, I believe every moment is precious. I live a quiet, peaceful life and I'm so HAPPY in myself.

Love and light to you all, from Helen


RHTonsil SCC Stage IV tx completed May 03
#38249 02-24-2005 02:10 PM
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Robert I am glad to hear the good news and happy to read at the bottom that you will still see someone at 3 or 4 months. It feels good to have those "all clear" checks anyway, so why not have one every 3 months!

At nearly 4 years for me, My ENT said 6 months....I'm not sure I am ready for that! I'll probably come up with an excuse to see him say maybe 4 months?

Nicki, Tell Tom that I joined my church choir at about 6 months out. My voice got pretty good but at least several notes lower and not much falsetto left (although that has gotten better over time). No problem, I now sing bass. The one thing that I haven't got back is my whistle.


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.
#38250 02-25-2005 08:10 AM
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Robert,

Congratulations. I am 10 months and so far so good. News like yours gives me hope. My doc just took me to three months and I am a little nervous about that. Great news. Thanks for sharing it.

John

#38251 02-26-2005 06:24 AM
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Hey Mark, that is funny cuz my oral surgeon has tried to wean me to like every 3 months check up but I manage to get in there earlier every time! In fact, the last visit he asked if I would like to have a bed set up there. Smile!

I am having surgery on 03/08 for reconstruction on my flap and neck scar revision. Has anyone else had the flap reconstruction?

Thanks,
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---
#38252 02-28-2005 02:21 AM
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CONGRATULATIONS Robert & Family!!!
I say "and family" because this disease is not a "solo" thing. As the wife of a survivor I must say that every appointment/test/etc feel like they are mine as well. So, I can attest that your family feels the happiness with your good news just as much as you!

I must say though, just like the others, my husband and I both go through withdrawals if there isn't some sort of doctor's appointment at least once a month. Amazing how we came to rely so much on their words of encouragement. Great news though that your doctors are so confident!

Enjoy each and every day...

Lorie


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.
#38253 02-28-2005 09:55 AM
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Robert, congrats on the good report at one year out. Its nice to hear them say " cancer free" at each visit. Its also nice to be able to see the doctors at a longer interval. I'm sure your family is happy to hear the good news also.


Regards, Kirk Georgia
Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
#38254 03-01-2005 06:51 AM
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Hello Robert,

Thanks for sharing your great news!!! It picked me up a notch and when your only 5'7" It made me feel as tall as Mark!!!

Does this mean you have to continue to watch the Bears? You could get a feed for the Packer games and enjoy your Sunday afternoons a little more!!!
Do you want me to send you a cheese head?

Love you and your lovely family!!!!

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
#38255 03-16-2005 04:19 PM
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Robert,

I am so sorry I missed the great news but a very warm and sincere belated congrats to you!!

May you and the entire tribe have many more happy semi-annual visits!! I love you, too, dude.

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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