| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I just received the phone cal I have been waiting for. I go see Dr Chess from Allegheny General on the 20th to discuss whatever the Scan shows for this anneurysm. I tried to at least get a hint for what it showed , but the nurse said the Dr will tell me about it on the 20th. Geez, I hope it is half way decent news.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: May 2004 Posts: 218 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2004 Posts: 218 | 7 Years Out.
Man o man it hard to believe 7 years ago I was literally at the lowest point of my life.
My wife was pregnent with our 5th child and I I was diagnosed with stage 4 Tonsil cancer.
My goal at the time was to make it to his birth. I just saw him march off to 1st grade last week. He is 6. He will remember me! Even if its not that clear. No matter what, if it came back today, he will remember me. My biggest fear was I wouldnt live long enough for that.
OCF was one of the biggest reasons I made it through. There was always someone to talk me off the ledge.
Back then all I wanted was to talk to a long term survivor as you just didnt see a lot of them.
Well, looks like I am a long term survivor now!!!!!!!
Still have dry mouth. Still have neck pain. Still lack the ability to taste certain foods. All in all a small price to pay.
Thanks to all for their love and support.
Prayers to all who didnt make it through (Marci, Danny Boy, Sam).
Hope, prayer, family. Every day is still a gift.
Love
Robert, Christine, Alison, Bob, 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
| | | | | 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 | Great to hear Robert! Since I have never known exactly which date to celebrate, I use my end of treatment which is coming up on 7 years October 8! Like you, I wanted to see my boys graduate from high school. My youngest is a sophomore at my alma mater, the University of Kansas (3rd generation at that) so mission accomplished. I have officially made it to the first day of school every year with both boys! I tried to renegotiate with God but He reminded me I have packed a life or two into the past 7 years alone and I only asked for 5.
Congratulations to you and good to hear from you.
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
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Congrats to both Robr and Uptown. This is great to hear about both of you.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Aug 2005 Posts: 307 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Aug 2005 Posts: 307 | Congratulations Robert! I remember you....so nice to see your post. You are so right about every day being a gift. All the best to you and your family.
Shelley
Caregiver to husband Ron. Throat Cancer. Finished 35 radiation treatments on 11/21/04. 8/2/11 small lesion on lower gum, laser Procedure to remove. 3/6/12 Doc. removed another lesion on outside of his neck. Did a skin graft from his chest to replace the skin on his neck. Went to Heaven on 6/24/12.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Best of luck with your appointment Jim.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Thanks Christine. I go this morning to meet with the Dr and get his views about this anneurysm. I hope he says it is no worse and we can wait longer. I hate to face another major surgery.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Here is the latest from the Drs. The anneurys has grown from very small to a 5, which is the ready to burst stage. The Dr asked me if I knew that it could brak at any time and I would be history, I already knew that. LOL He thinks because of the location in my lower body that he should be able to go thru my groin and repair it. WOW is that ever good news . I would be up the next day and go home but have to rest for a month. The earliest the operating room is available right now is November but if there is a cancelation, they will take me. I told him I need a couple of weeks to get a few moere things ready for winter but when he calls for me to just do what he wants to. He then told me that he heard from other Drs that I am a tough man and he like them likes it that way. I never complain or interfere with their job. Hell, I have trusted all of them and still do.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Jim Im glad you are finally getting this taken care of. Nov is only about 6 wks away. Please dont overdo it before the surgery.
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | Hi, Jim, I agree with Christine. Take it easy...also, no climbing trees, no jumping jacks, no roller coasters. LOL!
Both my parents had this surgery...called triple A. Her procedure was in 2005 and his was in 2002. Mom is now 82 and Dad turns 81 on the 29th. They are doing great!
You still have a lot of life in you. All the best as you get ready for your surgery.
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
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