Hi Everyone, I haven't been able to talk since my surgery 6/13/07 in Philly, so pretty down about that. I'm getting Ultra Voice as soon as my insurance preauthorizes it, which should be next week.
I think I may be the first one here to get Photodynamic Therapy.
I guess things didn't go too well in Philly. I know it was a nightmare and he didn't get clear margins.
So the plan is to clear the dysplasia and superficial carcinoma insitu with PDT. Getting injection Monday 9AM, back on Wednesday for 1st PDT, then Friday last PDT to clean up dead cells and I would think catch anything they missed. They've been doing it at UPMC in Pitts. Pa. since 1996. They gave me plenty of material to read, but everyone is different. Best I can figure, it is 38% successful, sounds good too me. I'm a nervous wreck and can only hope that I'm doing the right thing.
I will let you all know how it goes.

Luck and Best Wishes to all

Marlene,

Best of luck with the PDT, 38% success rate sounds encouraging. Hopefully the more people this is performed on the success rate will be even higher. It's exciting that perhaps they are finding different therapies to fight this awful cancer. Try to have a relaxing weekend, know this is easier said than done, but stressing won't help the situation, even tho it is a normal reaction. Keep us posted on how you are doing. My thoughts are with you.

Nancy

Hi, Marlene.

The extensive research I did on this last summer showed a much higher success rate. I will try to dig out those figures for you. Great timing as far as the darker, shorter days.

You know that the Zoo and I are ready to swing into action on the relevant days. Hang in there, Kiddo. From all I have read, this will be a piece of cake compared to what you have already been though.

Joanna

Hi Marlene,

Just read your reply and hope you are feeling better when you read this. Not sure how to send private message, as I'm not real computer savvy. You sound like you have been through the ringer and as you know it takes time to get your energy back, so take it a day at a time. I hope you have someone who is helping to care for you and give you the TLC you deserve. I am so hopeful that this procedure will have positive results and you will be cancer free. Please keep us up to date when you are feeling stronger, you are in my thoughts and prayers. Be strong and know you will get through this.

Take care,

Nancy

Thank you Nancy and Joanna, I'm going back to hospital for dilation tomorrow. Almost started feeling better when I was able to get some food and water down, but that shut down this AM. Extremely tired from dehydration tonight, so am heading to bed.

Best of luck to All

Marlene,

Is a PEG tube an option, it's important that you keep your nutrition and hydration level up. I'm sure it will effect your recovery if you don't. I'm really pulling for you. Take care and rest.

Best to you,
Nancy

I'm hoping once the Photofrim gets out of my system, maybe the chest pains, and swallowing problem will ease. Right now I'm able to stay hydrated and that is the main thing for all the people on here to remember.
The thought of another surgery makes me physically ill, only in a life and death situation would I consider a Peg. Getting chicken boulion, teas and water with vitamins in it down, so think I'm going to make it.

Best of Luck to All

Marlene,
Sorry you are having such a time of it again. By now, you must be ready to murder someone. Hope the PDT got it all this time. Will they be able to tell and if so how and when? Keep sucking down those liquids and good luck with the ultra voice. Is there no hope of you getting a TEP sometime in the future? Keep your spirits up and stay hydrated. Hope you feel better soon.

Take care,
Eileen

Thank you Eileen, To say my nerves are on edge would be putting it mildly. Tomorrow seeing ENT to enlarge stoma hole with a plastic tube, I got a look at just before I passed out in Or. Was expecting to wake up with it but not Thorasic surgeon job, I guess.
My insurance wrote me letter last week that they are processing my claim for ultra voice. SOOOOOOOOO am hoping this is the week!! After what you told me of the risks of the TEP I pretty much backed off of that. Joined Webwhispers and with all the problems I read of there, no way. The thought of another surgery makes me ill. I'm back on my Nutren so getting some nutrition and hope to be on the heal soon.

Thank you for your encouragement, Eileen

Best of Luck to All

Thinking of you Marlene--hoping you DO start to heal soon x

Brenda