#15229 04-26-2004 02:36 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 | Hi Cathy,
Hip, hip, hooray! I was feeling a bit puny and violated today after physical therapy and preparing for my 7 week clinical exam tomorrow when voila, I come across your post. You have inspired me (and others from the posts) to new heights! Thank you for coming here and thank you, especially, for your great story.
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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#15230 04-26-2004 02:46 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | OP "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Hi karenng -- regarding your question on oral pilocarpine. The original pilocarpine, as I understand it, was in the form of eyedrops and has been used for a long time for glaucoma patients to treat that condition. One of the side effects is that it triggers saliva (it also makes you sweat, makes your eyes water, makes your nose run, etc.) so not everyone finds it a plus. However, after trying different doses of the pill form during the trials, I found a level that seemed to work for me and it continues to make a difference -- if I miss a dose I notice it. Because of the fact that it is also an eye medication, I have to go for regular ophthalmogist checkups every couple of years. Let me know if you have other questions.
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#15231 04-26-2004 04:37 PM | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2004 Posts: 316 | Thankyou also for making my day also  , and as has been said previously by other members, my sentiments exactly. Cheers! Tizz
End of Radiation - the "Ides of March" 2004 :-)
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#15232 04-26-2004 06:11 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Welcome, Cathy! Can I induce you to make a similar post about once a month, so we can remember, when it gets kind of deep around here, what you have accomplished? You truly are a ray of sunshine! Thank you very much. | | |
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