Patient Comments: Photodynamic Therapy - Candidate

For what condition did you have photodynamic therapy?

Comment from: padric, 75 or over Male (Patient) Published: May 17

I have had photodynamic therapy three times for actinic keratosis (AK). It can be painful during the blue light radiation. A 6 to 7 on a 10 point pain scale. Schedule it for a Thursday or Friday so that you will have the weekend to mostly recuperate. The procedure is covered by Medicare and so is way better than paying the outrageous prices they now charge for fluorouracil cream. Your recovery is faster and the technique is such that it is more effective in locating and destroying AK cells that have not yet disclosed themselves as visible red blotches.

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Comment from: Donna B, 55-64 Female (Patient) Published: May 09

I just had my second blue light treatment. The results for the second were the same as for the first. The photodynamic therapy treatment was better this time as they didn't have a fan the first time. This time I had a small handheld fan that I directed on to my face which made the intensity much more tolerable. I had the same hot feeling, redness and discomfort afterwards. I am a redhead and remember the childhood sunburns that got me here so the sensation of a severe sunburn is very familiar. It is the price you pay for the early burns. I lost a good friend to melanoma so I am all for taking away risk to my life caused by skin cancer. A few days or even weeks of discomfort for years of less risk works. Ibuprofen, ice packs, moisturizer (Aquaphor ointment) and patience. Stay out of the sun completely and that means away from windows. Use a gentle cleanser like Vanicream to clean the face 2 to 3 times a day in the first 24 hours, and then moisturize. Might be uncomfortable but being on the right side of the grass is the goal.

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Comment from: Will, 65-74 Male (Patient) Published: May 03

I went in for photodynamic therapy this morning. I had no idea what to expect except that I would need to avoid the sun and wear a hat for a couple of days. The nurse administering the procedure advised me that there would be a burning sensation (understatement). The procedure was being done on my scalp which has a lot of sun damage. When the blue light started I immediately felt as though gasoline was on my head out of control. The pain was so intense that I had to discontinue the procedure after only a couple of minutes. My doctor is planning to do a different procedure for me. I'll never attempt this again.

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Comment from: Liamn, 65-74 Male (Patient) Published: February 17

It is four days after second facial treatment and four weeks after the first treatment. I was not prepared for my current condition, much more redness and leather-like condition of the skin. I am so concerned I looked into these photodynamic therapy effects and saw this blog. I hope my face doesn't start having further reactions that include some of the severe ones mentioned by others here. I'm surprised since the first treatment went almost without a hitch.

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Comment from: Yatbutterfly, 55-64 Female (Patient) Published: June 21

I had the blue light treatment (photodynamic therapy) on my face for pre-cancerous treatment. The dermatologist made light of the treatment and didn't prepare me for the ill affects I have had. Now that my skin has fully healed, my skin is terribly drawn and damaged. I am so sad.

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Comment from: Alevy, 55-64 Female (Patient) Published: January 19

I have had the blue light treatment 5 times since 2009. Yes, photodynamic therapy is very painful, especially the first time. Each treatment the pain became less painful and yes, it does improve the quality of our face over time. If I had a choice between surgery on the face or blue light, I opt for blue light. The doctors don't warn us, probably we would opt out. Now, 5 treatments out, the doctor and nurse tell me how bad my face really was before treatment. We get used to the discoloration and sun damage on our skin. My best suggestion is, Vaseline OR Aquaphor constantly. Lather it on, it will absorb. It does help healing and minimizes peeling. The results are worth it.

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Comment from: Ellen, 65-74 Female (Patient) Published: February 16

I had photodynamic therapy (PDT) on the front of my calves 10 days ago for actinic keratosis (AK). It was the worst pain ever. The nurse cleaned my calves with acetone, applied the Kerastick to them, wrapped them in Saran wrap and ACE bandages and sent me on my way. I came back 3 hours later for the light treatment. I don't know how I made it through the entire treatment. The nurse was spraying water on my legs with one hand and aiming a small electric fan on my legs with her other hand. The pain was excruciating. I thought I would get some relief after the 16 minute 40 second treatment. Boy, was I wrong! I had no idea that I wouldn't be up and functioning in just a few days. Because I had significant sun damage, I had more pain. The AK was constantly itching, and I was at the dermatologist frequently having them frozen. When she suggested Levulan Kerastick with blue light therapy I was ready, or so I thought. However, I have spent most of the last 10 days in my recliner with my legs propped up on pillows. My calves are so swollen. I moisturize three time a day as directed, but when I have to stand up, the weight on my legs causes cracking, bleeding, and burning. I had this treatment to stop the itching AK. Now I'm starting to peel slightly and it itches a lot. My calves are still bright red with a lot of brown crusts. I am so looking forward to the crusts peeling off. I weighed 116 pounds 10 days ago. Because of my lack of movement, I weigh 122 today. It's hard to be active in a recliner. I'm supposed to have my face treated in April. I've had two cancer surgeries on my face, and have several small areas of AK on my nose. I dread going through this again, but would rather suffer through to keep from having more surgeries on my face. Next time I will definitely ask for pain medications. I am supposed to have the back of my calves done too, but I'm not sure I'm up to that. If I had known how painful this procedure was, I would have asked for some serious pain medication or would have taken at least four ibuprofen before the light treatment.

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