Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Ginny,
Welcome to the neighborhood. I have read your posts and some of the replies to your post and I have to tell you that you need to go to a major comprehensive cancer center for a second opinion. You have already gone through some things that I believe were not consistent with a comprehensive treatment plan to give you the best possible opportunity to beat this horrible disease the first time. Don't get me wrong, I do not want to incite fear and panic in you but you need to know what you are dealing with. Many of us may only have one chance at this. If you assume this to be the case, wouldn't you want to find the best possible team to collectively use the highest level of knowledge available to rid you of this life-threatening disease? Learn what you can to understand your options; ask what options are available and why they are recommending an option to you. They will either assume you don't ask because you know or they will not know some of the answers to your questions and are making the decision because they think that is their job. It is YOUR job to learn what you can and to make an informed decision.
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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