 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | A surgeon almost always recommends surgery. Imagine that. It sounds like something is being done. You might ask what the current treatment plan is.
Almost all studies point towards HBOT along with Pentoxifylline/alpha Tocopherol as about the only thing being done short of surgery. In Europe, the current push is to add a bisphosphonate that isn't available here. Ironically, one of the side effects of the treatment with bisphosphonate is ORN. Most of the studies done in Europe are also listed in PubMed. It is called the PENTOCLO protocol.
In my case, my ENT is also a surgeon so it's hard to determine where you should go. I have been funneling a lot of literature and studies to an RO and MO. It's confusing to me, as well, who would manage this part of after care.
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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