#15378 05-07-2004 09:29 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 | Eric, I moved your post over here so people could welcome you officially!
Ed
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Eric Dabrowski
Member
Member # 1285
posted May 07, 2004 02:31 PM
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I'll jump right in. I,ve been Diagnosed w/ oropharyngeal cancer w/ neck mass. I was diagnosed 3/15/04 was told I would have operation. on 4/7, then 4/21, then 4/4 now back to 4/21. I'm with V.A. I was told they needed to put more survere cases before me. I don't know if that is good or bad. They say it's not spreading that fast but what do I know?
Listening to your concern about speach problems after surgery and radiation is my concern too. I am a therapist by trade and need to talk to make living.
Since I have two more weeks before my surgery I am looking at every thing under the sun to reduce my tumor or heal it. I have been in trying verious alturnative approaches and would like to explore this more with you all.
My heart is with you. I hear your struggles are my'in, too. This is very grounding to be able to hear all your experiences. Wish you my best.
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Posts: 2 | From: Laguna Hills, Ca. | Registered: Apr 2004 | IP: Logged
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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#15379 05-07-2004 09:31 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 | Eric,
Welcome! I am sorry you have to make this journey but I want to assure you there is great company with you. We have all gone through much of what you have and are going to, either as patients or caregivers. I had the base of the tongue version so I can't help you much but others will post soon. Best wishes to 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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#15380 05-07-2004 10:07 AM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Apr 2004 Posts: 143 | Welcome Aboard the Club nobody wanted to join.............you`ll get lots of answers and support here, plus alot of prayers......Hugs, Dee | | |
#15381 05-07-2004 11:26 AM | 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 |  Hello Eric I understand your concerns about the radiation. I was always able to talk during and after my rad to my tonsil area and neck. Tizz, another aussie poster, described her voice as sounding like Marge Simpson at times. Very apt. Almost one year out from radiation my voice is the same as it always was and I can even yell at my cats when they scratch the furniture! Good luck with your surgery which I assume will be a radical neck dissection. That healed remarkably well for me and got rid of a large amount of tumour. The treatment was a success in my case and it it hard to believe now how ill I was. Go for it Eric, you will be in my thoughts. From Helen, with love
RHTonsil SCC Stage IV tx completed May 03
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#15382 05-07-2004 01:45 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | Eric, don't worry about your voice. I depend very much on my voice too since I am a language teacher and I am glad that I have been back to my job for two years already. I wouldn't say my voice is the same as it usually was because there were times when it sounded very hoarse. But I know it is due to lack of saliva to lubricate and after drinking some water, the voice is back. I depend much on chewing gums and sugar free candies in the day time to keep my voice going. I can still sing and sometimes shout at people too. A little frustation is throughout the day, sometimes the voice is so clear that people say it sounds exactly the same as before but in another minute, it becomes so hoarse that people have difficulty in hearing me even they are very close. I learn to get myself adjusted to this.
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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#15383 05-07-2004 01:46 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey Eric,
Welcome! My hubby had tongue cancer, surgery, neck tumor, surgery, 8 weeks chemo/rad. It was a tough go, but better now. He, too, is in sales and drama director at our church and in local plays, and needs his voice pretty bad. He lost his voice totally for about 6 weeks. Now he speaks pretty clearly and it gets better every week. We are just praying that they got the cancer. He still uses his PEG tube, but just this week has been able to get some pudding, a little pasta, etc. down. He is 2 months post treatment.
My prayers are with you.
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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