Connie,

I can really appreciate your post in that I believe most of us came here or stayed here because we were in search of others that shared our journey (or our loved one's journey) so we could have a little help in making to the next leg of the relay. I, personally, have found that all the bizarre things I felt were so unique to me were, in fact, experienced to some degree or another by almost every survivor I have met. It was a lifesaver to hear ways to be more proactive with the medical team and in my life.

That being said, it seems like from time to time we get into the same discussion about studies that may or may not be relevant and we try to keep the discussion moving towards leading edge technologies that may keep others farther away from the path we are all on today. There is something new on the horizon always and unfortunately none of it has proven yet to be the silver bullet to rid the world of cancer. Let's face it, this particular disease (SCC) has been treated the same for so long that it really is refreshing to see some of the discussions taking place today that may yield results in the future.

Your husband is fortunate that he has an advocate that is taking the time to arm themselves with as much information as possible. Gathering all you can is the first step of directing the outcome and all of us should work exactly towards that.

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