I see his last post was July 8th or so. Did he go on vacation without checking with me first?? LOL. Hope he is well.

Donna

Has no one heard from him?

Hi Donna,
There were a number of postings on the 8th.
Cheers
Gabriele

Oops..just realised you saw those as well

Nice to be missed. I have just been overwhelmed stepping down from the fentanyl patches to just pills plus trying to get over nasty diarrhea from antibiotics for an infection from some necrotic tissue from this second round of radiation (cyberknife).
Add to that dealing with the bullshit paperwork hassles of my CCC (they require you to re register every month in each different department: cancer center, oncology radiation, testing radiation, rehab, etc at different locations ).
Right now I am hassling over starting up VitalStim swallowing therapy - Georgetown CCC insists I need to get yet another Barium Swallowing Test first before they will even schedule me for the Vital Stim. Unfortunately nobody else within 200 miles offers VitalStim except for some nursing homes and they are not preferred providers for Blue Cross. since I hit my catastrophic protection again this year, everything is FREE with no co pays or deductible if I stick to a preferred provider like Georgetown. Plus my son turns 21 next week so I have been researching a GPS for him and will head out today to buy it.
But I could not post here without some OCF connection and I am very pleased that the preprinted sheet that the Georgetown University Hospital Department of Physical Medicine and Rehabilitation: Cancer Information & support Groups has 6 recommendations and Oral Cancer Foundation is one of them !!!
I have been loading up all the waiting rooms in the Lombardi Cancer Center and the Oncology Radiation Center with the OCF postcards each visit.
Thanks for checking up on me, I have been very depressed that I have not have not had a sip of water nor a crumb of food since Ash Wednesday.(perhaps a new fasting record for Catholics for Lent)and the first round of swallowing therapy did not help at all. It was this board that mentioned the VitalStim so I am really hoping it will work and am impatient over the obstacles Georgetown is setting up - looks like they won't schedule me until August.
Last but not least, when I see Christine get cancer for the third time I worry if that will be my fate also. My whole medical team did a complete turnaround on St Patrick's day this year when they suddenly insisted I needed more radiation and chemo or else the cancer would come back a third time - all based on the pathology report of "extensive perineural involvement" and "inferior shave margins". Plus the surgery was at the very base of the tongue and the surrounding area all of which are involved in swallowing. I posted the Tyranny of Positive thinking for a reason.
Now you have heard from Charm and can see why I added 2017 because that is when I expect to be charming nor churlish,

Charm-
Good luck with the VitalSTim treatment. I was treated with VitalStim at a nursing home as that was the ONLY place that offered it in the Tampa area. It was out of network so my insurance(United)only paid a small percentage. For about 2 months of treatments, my total out of pocket was about $1500. The treatments were about $30 per hour session a couple times a week plus an initial $600 fee.
I started VitalStim after a couple months of swallow therapy at Moffitt. After 2 swallowing tests they said I was still aspirating, that I should take nothing but water by mouth, and that I probably wouldn't see much more improvement on the track I was on, and recommended Vital Stim. Two months later(Feb 09) I had my PEG removed and I'm eating 100% by mouth.

Kevin

THANK YOU THANK YOU. At last some really potential positive news. It was so depressing to see zero results from the traditional swallowing therapy despite my doing all the rigorous exercises (superglottic, mendelsohn, striker, forceful etc)
I am so excited about the VitalStim - even if it works solely due to the placebo effect.

So glad to see you post - whether you are churlish or charming, you are YOU and that is who we have missed. Sounds like a tough time and that paperwork hassles sure can get you down. I know I only had to deal with disability people - no medical paperwork here (THANK YOU GOD), but I found even that trying.

Like you, seeing Christine drag out the weapons for her third attempt at slaying the beast is depressing for her, and, selfishly, for all of us. Sometimes I think I don't have the courage to come back to the board, sometimes it would be easier to stick my head in the sand, but all of you are a "family" of mine, and I can't do that. Good or Bad, I am here with you - praying for you and me - praying for strength and peace. Praying that each one of us greet each day thankful to be here.

Donna