#15313 04-28-2004 03:57 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OP  OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Texas Teacher
Member
Member # 1274
posted April 28, 2004 06:49 PM
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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#15314 04-29-2004 01:54 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | I had a near total glossectomy and radiation really didn't affect my speech just my swallowing.
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#15315 04-29-2004 02:08 PM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Mar 2004 Posts: 417 | Radiation Therapy has affected my speech negatively, I sound like a bull frog. But it has been explained that this is temporary.
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#15316 04-29-2004 03:43 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 | I seem to be affected by the weather or pollens or something about every other week. Much like the bull frog Darrell mentions. It has been 7 months since the end of treatment but it is more the difference in swallowing that is noticed than the deep voice.
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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#15317 05-03-2004 09:35 AM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Apr 2004 Posts: 482 | Texas Teacher:I'm in for surgery tomorrow, 5/4/4, so I don't know yet about that, but I had radiation and chemo for 7 weeks. Swallowing becomes more and more difficult as time goes on so a "Peg" (feeding tube) should be considered. Talking is affected, but only a deepening of voice and some sounds (in my case, when I way 8) are a little wacky. Otherwise, radiation is not too bad. Do get some skin burns outside, but they aren't a big deal if you use some of the special cream the nurses can get for you. regards, Kirk Georgia
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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#15318 05-03-2004 01:35 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 | Kirk,
Good luck on your surgery tomorrow. We are all hoping for the best possible surgery followed by a great recovery! We may not be standing there but we will all be thinking of you and praying for 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
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#15319 05-05-2004 04:31 PM | Joined: May 2004 Posts: 1 Member | | Member
Joined: May 2004 Posts: 1 | Hi to all.I will be starting radiation therapy in about 2 weeks,and I have no idea what to expect.I have sinsus cancer,and have had a big piece of the roof of my mouth and all the teeth and some jaw,upper right,removed.My cancer was found just a short time ago,and I have been so busy going to doctors,recovering from surgery,getting use to the large appliance that I am wearing,that I am only now getting depressed and worried.I would be interested in chatting or emailing with anybody that has knowledge of this type of cancer.I have been told that it is not rare,but usually misread.The signs for sinus cancer are so similar to other diseases.It seems that I have to have between 30 to 35 radiation treatments.I was told that this cancer is very sturdy,and that is why so many treatments are required.Can anybody help me with this...thanks ....Mike | | |
#15320 05-05-2004 11:16 PM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 143 | Mike, Frank had sinus cancer, but I`m assuming your`s is in the ethmoid sinus, Frank`s was in the sphenoid sinus at the base of the skull and surgery wasn`t an option. And for goodness sake, if you aren`t on antidepressant, you should consider them, you have every right to be depressed.....I see you are in Boston, Frank had his radiation at Beth Israel......hang in there and stay positive, I know easier said than done.................Love, Hugs, and Prayers,,,,,,,,Dee | | |
#15321 05-06-2004 12:37 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Mar 2004 Posts: 164 | I didn't have sinus cancer, but most everyone has 30 treatments. I think that is the standard of care for head and neck, sometimes more. I feel like the treatment is cummulative and they want to make sure that the cells are irradiated enough to kill them. You might want to ask your radiation oncologist this question. Someone else might have a better explanation.
I think almost everyone has gone through the depression thing. I did for about two weeks and then snapped out of it without antidepressants, but everyone's different. I do have to take something to sleep every once and a while.
Welcome!!! So sorry to hear about your diagnosis.
Hang in there. We're here to help.
Lynn
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#15322 05-06-2004 03:27 AM | Joined: Apr 2004 Posts: 156 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 156 | Mike,
I sent you an email about Mass Gen'l to your yahoo account.
Sabrina | | |
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