 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Estelle,depending on where the fibrosis is, there are many things that can be done in terms of comfort and slowing the progression. There are more studies being done in Europe than in the US.
The first lines of defense include massage, regular stretching and exercise, and a treatment protocol called PENTOCLO, Pentoxifylline/alpha Tocopherol/ Clodronate. We can not get the Clodronate in the US but it is available in Canada and Europe. The 5-6 year mark after radiation is the most critical in terms of aggressively treating it.
Of course, the first step is reducing stress and anxiety as the body's response to that can accelerate the fibrosis.
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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