 Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Annabel,
I had a nutritionist connected with the radiation therapy and a nutritionist connected with the chemo. Before we started I met with a general medical oncologist who I saw/see for any issues such as thrush or regular blood tests and chemo, an otolaryngologist who ordered the PET/CT scans, the MRI's etc and found the primary tumor, the radiation oncologist that coordinated all of the radiation therapy, simulation, etc. I see the otolaryngologist every 6 weeks with a PET/CT every 90 days right now. Both nutrionists gave me handouts and recipes for chemo and radiation. I also had a social worker tied to chemo and one tied to radiation. I also had a dental surgeon who consulted with me prior to any therapy. The medical oncologist and his nurse coordinated everything and all appointments until 6 months past treatment and I make them all now. The medical oncologist just sent me to a physical therapist for the lymphedema (swelling) in the neck and loosening up the stiff neck muscles.
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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