Patient Comments: Photodynamic Therapy - Experience

Question:

Please describe your experience with photodynamic therapy. Submit Your Comment

Comment from: Linds, 55-64 Male (Patient) Published: July 01

I just had photodynamic therapy done 2 days ago and I would not recommend it. It is very painful, especially on your scalp. I had it on my scalp and both sides of my face and now my whole face is red; forehead, both sides of my face, down my neck, and it is pretty gross to look at. If you do get it done I recommend to get a cold cloth soaked in ice water and just put over your face till the pain subsides. Hopefully this works.

Comment from: terri, 65-74 Female (Patient) Published: June 11

I had photodynamic therapy done four days ago. I was totally unprepared for this, guess I should have researched a little more. I had no pain whatsoever during the procedure. That evening I was using pure ice cubes on my face. Unbelievable the amount of discomfort, worse than a bad sunburn. Today there is some crusting and a little reduction in redness and swelling. It made me feel flu-like, I think from the overall discomfort. I sure hope this is worth it. Would I do it again? I don't think so.

Comment from: Ronnie B, 55-64 Male (Patient) Published: May 01

I just had the first of 2 photodynamic therapy treatments on my arms and face. After reading posts here I was about to back out, but I had arms done first. There was a small tingling on the arms but not unbearable and they gave me a small fan to blow on my face and it wasn't bad. I am 10 days out and my face feels a lots smoother. I am glad I went through with it! I cranked up my music while I was having it done and in 3 and half songs it was done.

Comment from: equexcellence, 65-74 Female (Patient) Published: March 12

I have now had two photodynamic therapy treatments. I have no idea why I agreed to another one! I have an extremely high tolerance to pain and not only was sitting under the light excruciating but afterwards also almost unbearable. After the first treatment my face swelled, blistered, cracked and bled… a lot! This second one I have swelling, and it feels like I smashed my face on a stove burner. I can't sleep, and it hurts too much to open my mouth to eat. I am 6 days out! Sounds dramatic but I'm done.

Comment from: BobS, 65-74 Male (Patient) Published: February 12

I am currently on day 4 post photodynamic therapy. This is my 3rd time and I forgot how painful and annoying the treatment is. Like most other people, I do not understand why the doctor and staff do so little to prepare you for the treatment and the recovery period. While the pain under the light is bearable, at least for me, the following days are brutal. My skin is beet red, lesions of actinic keratosis quite noticeable and the pain associated with the sun burn pretty intense. That said, it does beat alternative treatment.

Comment from: Linda, 65-74 Female (Patient) Published: March 26

I have had two photodynamic therapy treatments. Now I will have my third. I said I'd never do it again. But due to all the years of sun tanning I have cancer cells on my face and upper chest, which will be the first time on that area.

Comment from: Lyn, 65-74 Female (Patient) Published: February 08

I had photodynamic therapy on Monday for actinic keratosis (AK). The AK didn't heal with localized treatment, so this was the reason for the light therapy, and it was done on my entire face and ears. One ear where there was some active itching before is blistered now and very painful, as are my cheeks and forehead. I am very uncomfortable right now. I wondered if anyone else is experiencing continuous itching.

Comment from: Rocky, 55-64 Female (Patient) Published: January 30

My doctor suggested two treatments for me. I have already had the first session of photodynamic therapy and had read up on it before I went in. I experienced nothing much the first evening. The second and third days were different, my skin was stinging and red with some swelling. I hated staying in! By the fourth, fifth and sixth days it was peeling and I felt my skin would never be the same. There were a lot of dark spots that came to the surface. Just want to say it is worth it! Your skin will look wonderful. My second treatment is Monday!

Comment from: Gwen, 55-64 Female (Patient) Published: November 20

I had photodynamic therapy on my arms 4 times with pretty good results. This time I had it on my face and I will not repeat the process. The doctor was running behind so the medicine incubated for 2 hours. The light pain was horrible, I almost asked to stop. No one came into check on me for the 16 minute 40 second duration. My face is extremely red, swollen and painful after the first 24 hours. I'm hoping tomorrow will be a better day.

Comment from: rch105, 65-74 Male (Patient) Published: November 06

The preparation for photodynamic therapy went fine. It went downhill as soon as the light went on. Instant heat and a gazillion needles stabbing my face! Total time was 16 minutes and 40 seconds. Around 8 or 9 minute mark the pain dropped to a more tolerable level. Most helpful were the two handheld fans and the cool/wet compresses they applied. I drove home wearing wide brimmed hat, windows up, visor down. I stayed in dark house and after 24 hours took shower. I wiped my face and opened up 10 or more spots to bleeding. Whiskers feel on fire. I used moisturizer which helped. Took 2 Aleve. Now past 44 hours, face is painful and tight.

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Comment from: Rob, 65-74 Male (Patient) Published: September 17

I have the same experience with photodynamic therapy as many. I have actinic keratosis on my head and the pre-treatment scraping of the scalp by the assistant was quite painful. I nearly threw up. Two hours later I came back for the light treatment. I lasted a minute with the most unbearable pain I've experienced. I was never offered anesthetic. I was just told to take Tylenol. My blood pressure soared and was in the dangerous zone for hours. I was told I was the only patient who had this experience. Seriously. My bad. You decide.

Comment from: Cypress Al, 65-74 Female (Patient) Published: August 31

I am outside a lot and have been treated for actinic keratosis removals for 40 years. The dermatologists have used freezing, chemotherapy creams, surgery… you name it, I have had it. My preference is photodynamic therapy and it gets easier with every treatment, as your skin improves. I have had 6. Bring music or a talkative companion, for distraction during treatment and then to drive you home. Stay away from sun or fluorescent lights for 48 hours. Be careful with TV, sunlight, etc., for 48 hours because your eyes may swell. I love the anti-cancer results.

Comment from: Elmokeys, 65-74 Male (Patient) Published: August 28

I am on the second day after my second photodynamic therapy (PDT). My first treatment did not work at all. My first treatment was very uneventful. The blue light procedure itself was pretty easy. With the handheld mini-fan, I felt no pain and was hardly red for days one, two and three. No pain, no itch, no peeling - no effect. My second treatment of PDT (under the light) was really not painful at all. I am redder than last time and it looks like something will occur in terms of an effective treatment.

Comment from: badcellsgobyebye, 55-64 Female (Patient) Published: July 10

My second time for photodynamic therapy (PDT) was on face. For me, it stings a bit (try counting down your 16 minutes; pretend you're having a spa treatment), the fan helps. Somewhat uncomfortable next couple of days, nothing worse. I have had 2 Mohs surgeries, so I much prefer to blast out the precancerous bits with PDT as much as possible!

Comment from: Mary, 75 or over Female (Patient) Published: May 30

It is day four of recovery from the photodynamic therapy. It is 1:30 in the morning and I can't sleep because of the pain. I was not prepared at all for this discomfort. My fault. I should have read these comments first. Yesterday, my cheeks peeled to raw sections of skin. Today, I still am swollen and burning a lot. I won't be doing this again and I am angry that my doctor really didn't prepare me adequately.

Comment from: Spud, 65-74 Male (Patient) Published: May 10

It's been almost 48 hours since my second blue light therapy. I did pretty well with my first time, it was really painful for the first five or six minutes but then it was less intense. For my second encounter with photodynamic therapy, since I did so well with the first, they let the cream absorb for 90 minutes instead of 60. They gave me access to a stop button and I almost used it. It was extremely painful. I have a lot of sun damage and actinic keratosis. I recently had basal cell removed from my nose and plastic surgery to reconstruct. Blue light therapy was much more painful. I agree with others here that more knowledge ahead of what to expect during therapy and for the week following would be helpful. It would scare some people off however. I think the more damage there is, the more pain there is. I was a red headed farm kid, blue eyes, and red complexion. Glad to be on this side of the therapy. My skin was noticeably improved after the first encounter. Hopefully that will be equally true after I heal from the current one.

Comment from: PDT, 45-54 Female (Patient) Published: May 08

I had photodynamic therapy 3 days ago and I agree with the descriptions I have read here. I was in no way prepared for the pain I experienced for the 13 minute duration of red light treatment. The nurse said she would be in and out of the room but didn't come in at all until the treatment was over. It felt like someone had just set my face on fire and I really battled with mind over matter to stop myself panicking. I was in no fit state to drive home by myself (which I did). My advice is to bring someone with you to make the time pass quicker, pre-medicate, stay out of the light for the full 48 hours and longer if the sun is glaring and do any calming techniques you know to help you through. My face is very tight, red and I look horrific; hope it heals soon.

Comment from: Geno, 65-74 Male (Patient) Published: July 05

I had photodynamic therapy on my arms; two treatments. No problem. I got liquid nitrogen on my arms and hands and afterwards raised blisters. Photodynamic therapy didn't get everything. Then I had on my face (sun damage). No pain but staying indoors 48 hours is no fun. I had photodynamic therapy 3 times but the cancer cells keep coming back. I have to use sun screen every day even though I no longer spend a lot of time outdoors.

QUESTION

Psoriasis causes the top layer of skin cells to become inflamed and grow too quickly and flake off. See Answer
Comment from: Jdee, 75 or over Male (Patient) Published: June 26

I've had about 4 or 5 blue light treatments over the last 10 years and I admit they can be painful but consider the alternative. I've read a lot of reviews about photodynamic therapy today but the one thing that no one has talked about is the prepping by the nurse. As far as I'm concerned the prepping is much worse to bear than the actual blue light treatment. I have a very tender scalp due to countless freezing, chemical treatments and surgeries. The last one that I had done was just 3 weeks ago and it was brutal. The nurse scrubbed my skin with a cleanser and then applied alcohol which stung like crazy. She scrubbed so hard that my scalp started bleeding in two different places. She then applied the chemical stick which looks a lot like a large Sharpie marker. On all of my other treatments that I have had, the chemical was applied with a painting motion all one direction. This nurse applied like she had an eraser scrubbing backwards and forwards with it as hard as she could. In fact it was because of the way she prepped me, that I decided to check out this site so I could find out how others were prepped but unfortunately no one has talked about it. I haven't yet had my follow up appointment with my dermatologist but I am certainly going to mention the prepping I had.

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

I found the photodynamic therapy blue light to be quite painful, I would compare it to being blasted with sand at high speed all over my face. I brought a cooler of frozen face cloths with me for the ride home but was still surprised with the amount of discomfort I experienced. I needed pain medication for 2 days even sleeping propped up and using frozen packs on my face. There was swelling and a lot of redness for 2 days. My freckles came out in full force. On the 3rd day the itching began, I used moisturizer constantly but my face tightened to the point of discomfort. Now I am in the peeling phase and feeling uncomfortable when I move my face and the skin cracks. I cannot decide if I should continue to moisturize hourly or tough out the pain and rush the peeling process. I took one week off from work and don't want to go back peeling to a high degree.

Comment from: Bella, 45-54 Female (Patient) Published: February 22

I had photodynamic therapy done for skin damage from sun. It was painful. I didn't take any medication. I felt intense burning all over my face. I asked if there was anything that could be done to cool my face down. She suggested ice or cold cloth. I opted for the cloth and it made a huge difference. She replaced the cloth after a few minutes and did this about three times; huge improvement. They put sunscreen on my face and I thought I was covered so I left the office without cover and drover home. It was very sunny that day so I think I may have aggravated it with the light through the window. They need to be very, very specific about pain medications, what to wear to cover yourself after (or provide bandage which they did not), what light to stay away from, and how long. When she said use sunscreen every day, even indoors I thought she meant in case I step out on the balcony or something. But sitting on my couch today in the light my face felt kind of hot. I think I need to stay out of all light as much as possible at least until 48 hours have passed.

Comment from: Liamn, Male (Patient) Published: February 21

It is four days after my 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.

Comment from: MB, (Patient) Published: January 27

Yesterday I received the photodynamic therapy on my scalp. I was told in my physician's office that the worst part of the treatment was when you were actually under the light and that after that you would be red and have peeling but that in most cases it would be all healed in 10 days. Well, I can attest to the fact that the 16 minutes under the light was almost unbearable but I persevered, thinking that the worst part would be over after they turned off the light. Not accurate as it is now 24 hours since the treatment and the pain during most of the 24 hours has been as intense as when I was under the light. It is just now starting to feel manageable. Of course now I don't have a lot of faith in the other things they told like the 10 day healing period but we will see. You can't tell me that in this day and age there is not some type of topical anesthetic that could be used after the treatment. I plan to have a serious discussion with my dermatologist about creating false expectations.

Comment from: CindyM, 55-64 Female (Patient) Published: September 07

I am on day 2 following photodynamic therapy (PDT). The treatment itself was 16 minutes and not bad. Immediately afterward not bad, but I made a huge mistake, so I am writing to warn others. I had to drive to visit sick parents after the treatment. It was cloudy and very overcast so I put on heavy duty sunscreen and kept windows up, visor to the side. Two hours later I was in extreme pain. I had to call doctor for prescription and was almost unable to bear it. When they tell you no exposure to light they mean no exposure at all! None. The side of my face that was next to the window is horrible looking now with ugly very dark brown discoloration, while the other side is stiff, swollen and red but without all of the hideous brown discoloration. The difference in the window side and the other cheek are dramatic. No light is what they mean! To all who are dismayed at the pain, the alternative is to use something like Carac or Efudex-they are truly brutal medications. I've done them three times and it is weeks and weeks of painful, ugly agony. This is awful too but at least you get it all over with at once, the alternative is truly worse.

Comment from: Mrs P, 45-54 Female (Patient) Published: August 20

I have had three photodynamic therapy treatments including 2 on my face and one on my decolletage. I had local injections with face treatments and took pain relief half an hour prior to treatment. First time I had it done last year on my nose and above top lip, was intense. I was unprepared for the intensity of heat of the lamp. However skin afterwards is great. Short term pain for long term gain. Returned yesterday just over one year later for right side of my face, then back tomorrow for left side. I have stayed out of the sun, even had curtains and blinds drawn. Avoided fluorescent lights. Ice packs and even misting water from spray bottle, both were helpful. Keep face covered with petroleum jelly as per instructions to prevent face drying out. Cover up well if you do have to go outside. Broad brimmed hat is very important and make sure it is not open weave one. Frustrated that private health cover doesn't cover treatment.

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.

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.

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.

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.

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.

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.

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.

Comment from: ouch, 35-44 Female (Patient) Published: November 05

I believe the intensity of the pain and reaction is proportional to the amount of time the acid gel is left on prior to the light treatment. I had my first photodynamic treatment to both of my arms a little over a month ago. The gel was left on for 90 minutes and the light treatment was the standard 16 minutes and 40 seconds. I felt mild tingling during the treatment but it really wasn't painful. I was slightly red for a few days; not any worse than a very mild sunburn and I never peeled. I had my second treatment yesterday and it was absolutely nothing like the first. The gel was left on for 3 hours prior to treatment. During the light treatment, the pain was bordering unbearable and I consider myself to have a high pain threshold. It felt like my arms were actually on fire, or placed up against a metal radiator, or burning on a hot stovetop; extreme pain. Driving myself home was torture and actually made me cry. I've had ice packs on all night and the burning is still incredible. I can hardly move my arms. After the first treatment, I was certainly not expecting this. I sure hope I get good results after all this.

Comment from: jasto, 45-54 Female (Patient) Published: August 18

For me, the most difficult part of the photodynamic therapy experience was the 90 minutes of waiting after the gel was applied to my face. However, I brought a book and read at leisure for the first time in years, so I enjoyed that. I was expecting the worst from some pain descriptions here. Therefore, I planned to use deep breathing and guided imagery to calm myself. I guess it worked really well, because I could not say there was anything like pain during the 16 minutes under the lights. The sensation I experienced around my lips reminded me of biting into a fruit that is irritating. My face has gotten very red, 60 hours post procedure. I stayed indoors the first day as instructed, although the car ride home freaked me out because it was very sunny out! I walked outside the next evening, slathered in sunscreen (as usual). I walked again today. Tonight, my skin has gotten so tight it hurts to yawn and smile. Lotions sting, but coconut oil feels great. In the last few hours, peeling has started.

Comment from: bruce, 55-64 Male (Patient) Published: June 30

I had the photodynamic therapy (PDT) 48 hours ago. Not sure whether it's doing anything. I spent 27 minutes under the light, zero to mild pain, now slightly red but itchy; sure hope I get results.

Comment from: PJsmith, 55-64 Female (Patient) Published: May 14

I had photodynamic therapy done on a small area of my face where there was cancer and I got rid of the pain by using aloe vera soothing gel made by Herbalife. I read such bad reviews on the pain so I was dreading the treatment. The treatment was a non-event as the aloe gel took away all the pain. I just kept the area moist for 2 days and applied it whenever I felt pain.

Comment from: Paul, Male (Patient) Published: February 13

I had my first blue light (photodynamic) therapy yesterday on the back of my neck and ears. The searing pain for 16 minutes is unbearable. And, it continues after the treatment ceased. It took about 8 hours for my skin to calm down a bit. Today is better, but my skin still burns and feels tight. I am to have my arms done next, but I question returning. Freezing is much less painful.

Comment from: FranL, 55-64 Male (Patient) Published: January 26

It been just under 72 hours since the photodynamic treatment (PDT). I have light skin and had about 8 areas of squamous cell and one basil cell lesion, so I decided to treat them all at once with PDT. Before the treatment physician applied the activating cream, she scraped the affected areas with a scalpel. I don't know if that is standard or not. Anyway, the treatment with light was painful. A thousand bee stings about describes it. I took a taxi home, I could not have driven. The next day there was swelling and in the areas scraped, there were abrasions with crusted blood. I doubt that is standard. I have been applying cold packs, moisturizer, antiseptics, and staying out of any sunlight. Well into the third day after the day of treatment and can't go out, it is frightening. It is beginning to crust, swelling is down, but I wonder if I made the right choice.

Comment from: Prospector 03, 65-74 Male (Patient) Published: January 15

I was treated with photodynamic therapy on 1/13/2015 at the Veterans' Affairs hospital. These are super caring people and have done a superb job of caring for me. My treatment lasted 16 minutes and 40 seconds (1000 seconds) as prescribed. I was a happy camper when the procedure stopped to say the least. My side effects have been pretty intense even with liberal applications of Eucerin lotion and desonide cream. Should I need to repeat this procedure in the future, I would most likely choose not to do so.

Comment from: JamesM, 55-64 Male (Patient) Published: December 02

I have had a number of photodynamic therapy (PDT) treatments so far, 2 or 3 on my face and most recently, a treatment to my arms and hands. I thought that my arms would be the easiest, but I was wrong. In all my PDT treatments it felt like my face and arms were tucked into a microwave oven with the safety device disabled. Extremely painful. Only the thought of my father-in-law, who endured skin cancer surgery, enabled me to sit there and endure the agony. My face treatments were somewhat endurable because the nurse provided me with a hand-held fan to blow air over my skin. My hands and arms were a different story, I have to blow air on them through my mouth to be able to endure it. I have confidence in my doctor, but I have to say that never once did she prepare me for the pain I was to endure and did not tell me to 'Motrin-up' to prepare myself for the pain. Right now my arms and hands feel like they are in the recovery stage of the worst sunburn I ever had, with peeling and weeping in some areas.

Comment from: Cinmeredith, 55-64 Female (Patient) Published: December 01

I have had 5 photodynamic therapies (PDTs) over the last few years. This one (3 days ago) is by far the worst. The nurse decided to incubate (leave the medication) and soak in for an extra 20 minutes since I had been through 4 previous treatments. Big mistake. She also kept the light to the absolutely lowest spot in front of my face. There is apparently a range. I was under for 20 minutes. I am fried and my skin is raw. I don't know if I can bring myself to do this again now. I did like previous results. I know immediately when the light hit me that it was more intense than previous times.

Comment from: Tom B., 65-74 Male (Patient) Published: November 04

I had my first photodynamic therapy treatment on 10/31/14 and the next day it felt like a bad sunburn. The following day it felt a little better, but my skin was very dry and felt like when I used Efudex, but if one applies Aquaphor it helps somewhat. The third day it is still very tender but is getting better.

Comment from: Jesslynn, 25-34 Female (Patient) Published: January 21

Photodynamic therapy worked wonderful for my acne! I wish it could get covered by insurance.

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