One patient with glioblastoma still alive nine years later
by VickiB on Thu Mar 15, 2012 04:25 PM
There is a lot of news regarding this new drug today, as an alternate treatment to Carac. Has anyone gotten a prescription for it yet or discussed it with their physician? Thanks!
by andreaki on Sun Apr 01, 2012 02:56 PM
I read about this also. I too am curious to know if anyone has tried it. My doctor told me to get the zyclara and after reading all the side effects I have decided against it. I cannot afford to take time off of work plus I have 2 elderly parents that I help take care of. Will await any replies.
by golfnfish on Tue May 08, 2012 05:17 PM
My doctor is going to prescribe for me. I have extensive inflamed actinic kerotosis over hands, arms, legs, chest, back, necl, scalp, and face. He has found it to work apllied 1x a day for two days with much the same efficacy as fluorouracil 5% twice a day for weeks.
My insurance coverage isn't as good, however, as my co-pay will be $60 tube. It will be worth it, however, if it can obtain the same results as the fluorouracil 5% applied 2x a day for 6 weeks as I have done on my left hand, arm, and lower left arm so far.
Biggest question I have for my doctor is if each tube really only covers a 2" by 2" area. I will need a lot of the stuff before I'm through.
by golfnfish on Tue May 08, 2012 05:18 PM
Meant to say lower left leg. There should be a way to edit posts on the board.
by Malibu27 on Mon May 21, 2012 12:26 AM
I started Picato gel treatment on Thursday May 17. I used it for the 3 days like prescribed.
Thursday day one- I put it on at 6 am with no issues. Around 3 PM my face started to burn and it did get red and swollen a little. It seemed to get worst as the night went on. It was a bit difficult to sleep that night.
Friday day two- Woke up at 5 am, face seems a little red but did not bother me at all until after I applied the Picato gel on my face, it burned when I applied it on the second day. As the day went on the burning increased and so did the swelling and pain. It felt like when you get sun poison. It would burn and itch at the same time. By 6 pm the burning was very irritating, I applied an ice pack on my face and that seemed to help a little. Sleeping that night was worse then the night before.
Saturday day three- Woke up at 7 am, face was red, swollen, and a little sore. When I applied the last tub of Picato gel to my face it burned more then it did on day 2. Throughout the day the pain and burning was worse then on day 2 and I started to get a few blisters, again I used ice to help the swelling and pain. Saturday night I slept better then I did on day 2.
Sunday day 4- I woke up feeling like I had sun poison on my face and it looked like I did. My face is red, swollen, sore and I have small blisters and scabs. To me it looks between sun poison and severe acne. Very ugly.
I am not sure what tomorrow will bring but if this treatment helps then all of this was well worth it.
by VickiB on Mon May 21, 2012 11:46 AM
Thank you for the detailed notes on your experience. They sound fairly miserable and much like I was told to expect. I hope you continue to keep us up to date because we're all hoping that the results are good and the Picato is very effective!
I've been waiting to start because at some point my dermatologist is going to offer an efficacy study and I'll get the medication in exchange for photos of reaction and resolution and we have no prescription insurance. If that doesn't happen soon, I'll go ahead and pay for the medication and get started.
Thanks again and seriously, the day by day reports help a lot.
by golfnfish on Mon May 21, 2012 02:44 PM
Thanks for your detailed experience. It sounds like Picato elicits the same response in a few days it takes the other meds weeks to achieve.
My Dr. took a biopsy of an AK spot on my right hand to verify it is AK and is going to biopsy the same spot after Picato treatment to make sure it has killed the AK. He is concerned that none of the research he has done on Picato show any studies that prove it actually kills the AKs.
I am keeping my fingers crossed it works as the time reduction with Picato will be most welcome.
by golfnfish on Thu Jun 07, 2012 09:17 PM
Just as an update my Dr decided to presribe Picato .05% 1x day for two days to my right forehead while the biopsy he performed on my right hand healed.
Reaction began within several hours of the first application for me. I already had some redness and weeping by the time I applied it the second day. Within a few days my skin condition was pretty much the same it had taken the flourouracil 5% 3 weeks of application twice a day to achieve.
Healing time was pretty much the same with both after the final application. I just wish it could be used to effectively treat larger areas. I couldn't be more impressed with how it worked on my forehead.
by kowaco on Thu Jun 07, 2012 09:29 PM
I just got off the phone with my Dr. about a course of Efudex I am using on my forehead. She then said she is now perscribing Picato and felt it was much better than Efudex. I guess it concentrates the treatment. Two weeks of rubbing Efudex into an open wound it getting to be a little two much. My next visit she said she would try the Picato. Still not a pleasant experience.
by laurahartman on Sun Jun 10, 2012 02:21 PM
I just started this treatment & it basicly feels like i took a blowtorch to my face. I have blistering 2nd degree burns and redness just after first day. i too used an icepack which helped. Has anyone done this treatment who can advise if vit e oil or aloe might help?
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