| | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Friends,
July 2nd was the 13th year since my diagnosis, so this time of year I usually post about how fortunate I have been to be cancer free and to have lived a mainly normal life since I healed from my treatment. I have been around to watch my kids grow up, graduate college and become fine young adults and I outlived my dear mother who died last year at 95. I returned to work and have been married to a wonderful woman for 10 years and we have traveled the world together. So no big complaints....
But, the degeneration in my jaw has apparently continued and I have an appointment for my third sequestectromy to remove more dead bone where a tooth came out and never healed despite the HBO treatments. I have dodged the bullet for a couple of years but would not be surprised if a mandible replacement is in my future. In the meantime I have been aspirating liquids more lately and suspect that I have a little pneumonia. My dentist at MDACC just put me on an antibiotic called Levaquin which I am hoping will solve the pneumonia problem.
I can eat just about any non spicy food as long as I drink water, but the water can be aspirated to the lungs and carry food particles.
I did not mind my feeding tube during treatment because I could look forward to removing it one day. The prospect of going back to a feeding tube now is rather depressing, as is the idea of a .mandibulectomy.
I realize that I have been so very fortunate to have been able to live well and enjoy these last 11 to 12 years after a stage IV diagnosis so I don't want to whine, but I damn sure don't like it, either.
Hoping for the best and wishing the same to all of you on this 4th of July.
Danny
Last edited by digtexas; 07-04-2015 03:40 PM.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
| | | | | 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 | Danny, first congrats on having so many good, healthy years after going thru brutal OC treatments. Im very sorry you have some long lasting after effects. A mandibulectomy is not an easy surgery and recovery can be a long one. Wishing you all the very best with everything you are going thru.
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 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Christine,
I can always count on you for good vibes! Thank you for your years of kindness and support to so many people on this forum.
I am sure that I will be okay and I am glad that you have survived your ordeals.
Take care,
Danny
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
| | | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hi Danny, it certainly is great to read that you have survived your cancer . Seen your kids grow up. Enjoyed a wonderful marriage. However, you are entitled to "whine" as you put it. Dental issues and Osteoradionecrosis are not to be sneered at. They cause many here unpleasant and long lasting issues. Issues you know about. You have done the PEG before so are familiar with those issues, not trivialising them either. I do so wish you a quick and long lasting resolution to all these current problems.
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | 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 | Good to hear from you, Danny. I hope you get some better news and stability soon.
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: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Thank you Tammy and Uptown. It seems that you and yours have gone through much more than I have and I wish you and your loved ones all the best. I had to drive over 4 hours today to far NE Texas for a court case in a little town tomorrow. I am feeling better today, and feeling good greatly improves my outlook.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
| | | | | 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 | After following your recovery, your bike rides, your marriage, and more, over the years, we really should meet up for coffee or water sometime soon. If you get up to the DFW area let me know or if you want to come to the Houston walk October 17, I'll be there.
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: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Sorry, I just saw your reply. I will do my best to make the Houston walk.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
| | | | | Joined: Jan 2003 Posts: 109 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2003 Posts: 109 | 13 years after treatment, I am in the same situation: felt lucky I am still alive but have to struggle with many long term side effects. Particularly the difficulty of swallowing and choking on liquid. Doctor has warned me several times not to eat by mouth, but I have not put in the PEG tube yet. Mucus build up is another issue for me, I have to constantly clear my throat. Dry mouth and constant sensation of sore throat woke me up several times a night...All teeth were pulled out at year 10 after 30 sessions of HBO...
WZ | Stage 4, Tonsillar Cancer Aug, 2002
| | | | | Joined: Jul 2013 Posts: 3 Member | | Member
Joined: Jul 2013 Posts: 3 | Hi! I am also a LT survivor..had OC 3x..first at 22 yrs old(1994) , last time at 26.i had a doctor originally who was awful. I sued him for malpractice & won-but nothing could make up for what pain this man has caused in my life I am now 43 & dealing w the long term side effects. I have all Dental implants in my mouth..have done over 100 HBO..have always had issues speaking but recently my palate began shrinking & it has caused a very nasal sound to my voice. It is beyond awful. People now ask me if I am deaf. I am barely understandable. The swallowing & tongue movement is also a huge issue. I gave a diet of about 10 things that I eat. I am in therapy but at this point in my life I feel like I have nothing left to give. I have fought so much & it just feels like "enough Is enough".. I hate to complain bc I should be grateful, But at this point, I'm just very sad & tired of living like this. I dream of waking up with a normal sounding voice. And the mucous is a problem as well. If anyone has something positive I'm all ears!! Thanks!!
Diagnosed 1st time at 21yrs old SCC stage IV recurred at 22 partial glossectomy&radical neck dissection-clear
Recurred at 26 surgery-hemi+graph30 radiation, peg tube(1998-out in 99)
Over 100 HBO, vocal cord nodules,
Been fighting cancer & related symptoms for most of adult life-since 1994
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