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| 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 | The important thing to note is that radiation induced fibrosis is progressive and will never just go away. Diligence in managing this can be time consuming and may require many perspectives to improve QOL. The flip side of this coin is it can kill you as well. My issues started in year 4 and relentlessly continued to near death until I fully understood many of the components necessary for long term management. I was late to the party and my current diagnoses includes a few terminal expectations. All are closely tied to restricted blood flow.
I had regular PT almost every other month, various massage techniques almost weekly, exercise and stretching daily yet I could not stop the progression. There is no silver bullet although I have not had pain meds for 14 months now and went from progressively worsening pain 24 x 7 to brief episodes of pain for minutes at a time.
One of the advantages to someone like Steve is the amount of exercise he does. I consider triathletes to be elite athletes at any age. A healthy cardiovascular system is perhaps the single most important piece of a very complex problem.
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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