sashjo Posted July 2, 2020 Share Posted July 2, 2020 I've been on Keytruda off and on for two years now. I've been so fortunate that it has kept my cancer pretty consistently dormant. One of Keytruda's known side effects is a skin condition called Lichus Planus. I have a terribly resistant ulcer on my lower lip. My oncologist and dermatologist have me gargling two times a day with Tacrolimus, which is an immunosuppressive drug. I also use a strong steroidal cream called Fluocinonide. Both are powerful drugs but my lip seems very resistant to them and isn't healing. My doctors seem stumped butd I trust them implicitly. Sometimes it's a hit or miss things treating immune system reactions. Has anyone else experienced this problem and/or had success with other types of treatments. Any suggestions or advice would be greatly appreciated. Thanks so very much. Be well everyone. Peace and gratitude - Josh Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 2, 2020 Share Posted July 2, 2020 Hi Josh When conventional medicine gets stumped it’s time to seek out the Integrated Medicine Doctor, an MD who is board certified in this specialty. You can use the zip code finder here/ https://integrativemedicine.arizona.edu/alumni.html Most are taking insurance now with the same copay as the PCP. My doctor has worked wonders for managing the odd ball side effects that are just annoying enough to impact our quality of life. No need for any of us to suffer! Michelle Link to comment Share on other sites More sharing options...
jack14 Posted July 3, 2020 Share Posted July 3, 2020 Hi Sashjo I have experienced lichen planus off and on for years. Long before I got cancer. It started with me after I was put on metoprolol succinate for high blood pressure. I have not had it diagnosed officially but I saw the wickhams striae streaks and it comes and goes. Inside my cheeks. I have used oral rinses and it never gets unbearable. So far, the Keytruda (third dose last week, hasn't made it any worse. Please let me know if you find a remedy. Jack Link to comment Share on other sites More sharing options...
sashjo Posted July 3, 2020 Author Share Posted July 3, 2020 Thank you Michelle. That's a great tip and an excellent link you shared. I might have even found someone nearby me. And Jack. Whatever I find that works I'd be more than happy to share with you. Fingers crossed. Link to comment Share on other sites More sharing options...
Lisa Haines Posted July 7, 2020 Share Posted July 7, 2020 Sashjo, Just wanted to be ask if you have had a biopsy done for your rash. I had what I "thought" was an Immune mediated rash on my upper lip area (I had been on Opdivo). It wasn't overly bothersome and never itched, so I didn't think much about it and I could easily cover it with a bit of makeup. I had it for a few months and one day while at my PCP's office asked him to take a peek (I was Stable and no longer on Opdivo by then), he thought at first it might be eczema and gave me an RX to try, but also said, if that did not resolve it, he wanted me to go to a Derm for a biopsy. Long story short, the RX did nothing, so I went to see a Derm and then had the biopsy done and it turned out to be a Superficial Basal Cell Skin Cancer. I've since had MOHS and Reconstruction done and it's thankfully now gone. I had BCC once before, but it was Nodular and looked totally different, and I never ever thought this "rash" was skin caner, but it was. Hopefully, you have already had a biopsy, and this is not the same for you, but I thought I'd share my experience, just in case. I honestly thought my rash was related to Immunotherpay, but I was wrong. Best wishes and hope you can find an effective treatment. Lisa Link to comment Share on other sites More sharing options...
sashjo Posted July 17, 2020 Author Share Posted July 17, 2020 On 7/7/2020 at 1:05 PM, Lisa Haines said: Sashjo, Just wanted to be ask if you have had a biopsy done for your rash. I had what I "thought" was an Immune mediated rash on my upper lip area (I had been on Opdivo). It wasn't overly bothersome and never itched, so I didn't think much about it and I could easily cover it with a bit of makeup. I had it for a few months and one day while at my PCP's office asked him to take a peek (I was Stable and no longer on Opdivo by then), he thought at first it might be eczema and gave me an RX to try, but also said, if that did not resolve it, he wanted me to go to a Derm for a biopsy. Long story short, the RX did nothing, so I went to see a Derm and then had the biopsy done and it turned out to be a Superficial Basal Cell Skin Cancer. I've since had MOHS and Reconstruction done and it's thankfully now gone. I had BCC once before, but it was Nodular and looked totally different, and I never ever thought this "rash" was skin caner, but it was. Hopefully, you have already had a biopsy, and this is not the same for you, but I thought I'd share my experience, just in case. I honestly thought my rash was related to Immunotherpay, but I was wrong. Best wishes and hope you can find an effective treatment. Lisa Hi Lisa. I'm so glad things worked out for you. No I haven't had a biopsy done. My dermatologist just suggested I do that a few days ago. I'm seeing him Monday. My rash is also inside my mouth. Did you have that too? Of course that wouldn't negate the possibility of my lip having some other disorder. I'll find out soon. Thank you for your advice. I really appreciate it. Stay safe and be well. Josh Link to comment Share on other sites More sharing options...
Lisa Haines Posted July 19, 2020 Share Posted July 19, 2020 Hi Josh, Now that I realized you are "Josh" from the Zoom Meet ups I know you back story a bit more and understand how much you've been though with this rash and mouth irritations, which sounds quite difficult. It does sound like your derm is on top of things and I do hope doing a biopsy may help you find the best treatment for whatever you have. My rash was not in my mouth, but the BCC was pretty deep into the tissue which is why my MOHS surgery was complex and required reconstruction. This was all done in December and has not fully healed, but is much better. I still have some loss of sensation, but that's okay and I'm amazed at the excellent job the Plastic surgeon did with the reconstruction. I do recall my Derm talking about some new data relative to patients who had been on Immunotherapy, but it was more related to me using a topical RX called "Aldara" that I used for a few weeks on the rash/cancer to try and shrink it down before I had my MOHS done. They were just starting to see that affect and I recall he was gong to case in a paper that was being writen about it. When I see his next I'll have to ask if they ever found if there was a connection. Take care and I really hope the biopsy will shed some light on getting you better treated or finding something that helps resolve this for you. Lisa Link to comment Share on other sites More sharing options...
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