Amy,

First, I want to tell you that the "old life" you, your dad and your entire family lost is just like any other major loss in life and requires a grieving process the same as the death of a loved one. Your dad going through his anger and denial were important steps in his accepting of his disease. From your post, I am so happy to hear how good dad is doing. His humor alone is one excellent sign! I hate to be the one to tell you this but the "normal" as you knew it may never return. The good news is that your family will settle into a new normal that will be just as meaningful and in some ways better than the old. Be patient because it will be a tough journey before you get to that point.

For the mouth sores, there is a mouthwash the pharmacists mix up that will help plus there is a clinical trial right now for a standardized product. I will email you the press release. There is also a product called GlutaSolve that helps epitheleal cells regenerate in the mouth and the gastrointestinal tract. The sores your dad has are either mucositis or since he is so early in the radiaiton, most probably stomatitis from the chemo. It will start at the mouth and literally go all the way through his system to the very end, if I am making myself clear without being gross. I have several boxes left over if you would like to have him try some. Just let me know and I can drop some off to you or him or at the hospital on his next chemo round. I believe he is at the new Baylor center just off of LBJ/McArthur?

Good luck on the next few weeks. Things will get rougher before they get better. I had the same problem with being cold all the time as soon as the chemo started. My temp has run about 97.3 since then, too. I struggled all summer with the air conditioner and I am sure my family is glad the hottest weather is over. I'll be thinking about you!

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