Patient Comments: Photodynamic Therapy - Experience

Please describe your experience with photodynamic therapy.

Comment from: Babyslam, 75 or over Female (Patient) Published: July 25

After several trips for precancerous areas on face and body, my new dermatologist suggested photodynamic therapy. I had no burning, no pain during or after the Blu-U light treatment.

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Comment from: Realtor, 65-74 Female (Patient) Published: July 19

I didn't have much pain from the photodynamic therapy (PDT) procedure, but since I have had loss of collagen and elasticity in my face. Doctor says it is not caused by PDT but otherwise I don't see why it would be happening now. I am devastated.

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Comment from: Really Jane S., Female (Patient) Published: June 13

My doctor said repeatedly that photodynamic therapy (PDT) would hurt badly and I would be ugly; almost as if he tried to stop me from having PDT. He prescribed Vicodin and Valium and watched me take a second dose of Vicodin when I didn't seem relaxed enough. I held a small industrial fan in my lap throughout the treatment and the nurse talked the entire time to keep me distracted. She counted down the minutes 8, 12, 16, 20, done. About 16 minutes in, the pain stopped increasing and just throbbed. He insisted I have an umbrella to walk to the car and someone to drive me home. He told my son to point the AC in the car directly at my face and that I should lie down in front of the fan. I vomited that night, but it might have been the Vicodin. The Valium helped most at home. Excedrin helps better than Vicodin. This is day four. My face is blood red and swollen. Day two my eyes swelled shut. Today, I think my face is permanently damaged. It's smooth and dark red with no blisters or crusts. Itchy, but no peeling. I'm really afraid that this was a mistake.

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Comment from: Carol, 55-64 Female (Patient) Published: June 07

I just had photodynamic therapy for a patch of Bowen's disease on my thumb. It was agony, my thumb felt it was being held against my toaster grill element. The cold air did nothing and in the end I had to have a local anesthetic. No one said a word about pain, perhaps because there are no words to describe the agony. I have another treatment in 6 weeks, I most definitely won't have the treatment without a local. Five hours after and I know I won't be able to sleep.

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Comment from: Sherryohio, 55-64 Female (Patient) Published: April 12

I had photodynamic therapy yesterday and it is the worst pain I have ever had. I had this done 3 years ago and never wanted to have it again, but because of cancer concerns I agreed. Tylenol does nothing for this. This time is even worse than the last. I have three washcloths in the freezer and I rotate them every couple minutes. I'm on hold now for the nurse and thought I would check and see if this is a typical reaction. It seems it is, but certainly the pain is minimized by the staff, when questioned about the recovery. We have snow outside, debating on sticking my face in it.

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Comment from: 45-54 Female (Patient) Published: December 01

I had photodynamic therapy on my entire face in April 2015. I was told I had to have this procedure prior to my dermatologist doing laser to correct scarring on my nose. The tip of my nose was a bit swollen at the time but a week after the procedure my nose jutted out about 1/8 of an inch. I was told it was temporary and would go down. Seven months later the tip of my nose is still very swollen and hard to the touch with a bruise/bump on the side of my nose, my mouth is always dry and my entire face is broken out. I was told this was a coincidence and was referred to an ENT. I have an appointment this month with an ENT.

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Comment from: Bocephus, (Patient) Published: November 24

I had blue light therapy on the back of my hands and forearms 10 days ago. I have been back to the doctor twice, emergency room once and have another doctor's appointment today. The area looks like third degree burns and I can hardly move my hands due to swelling, blisters, scabs and pain! Not sure if this is normal (as the doctor says) but this photodynamic therapy has been a terrible experience. Not sure I would ever put myself in this position again.

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