Anyone take acitretin to help prevent further SCC skin lesions?

I have only had experience with niacinamide for
modest preventive maintenance. Acitretin is effective
in prevention for transplant patients and should work well for normal immunity. Do you have a family history
of skin cancer that might show up in genetic tests?
Are you being treated by an oncologist or MOHS specialist?

@seniormed
I have a MOHs specialist. My genes were sent to Sweden. They ran the 19 gene skin cancer panel. All came back negative. I have the skin type. My father started to get them after he commenced HIV treatment.
No other immediate family members. I have a PET scan every 6 months. And see my rad oncologist. I don’ like the sound of acrititin. But can’t do any more procedures. I’m exhausted

Acitretin is available in a lower dose for prevention and research is
promising in SSC prevention. I don’t qualify but it is likely you meet the
guidelines in your situation.

@beneah77: I can understand your reticence with your history of so many skin cancers over the years requiring removal. I've also had several but not as many or starting as such a young age as you had been. While I don't have personal experience using Acitritin I have read studies about it in medical journals that have sounded promising and have read this that outlines some of the possible side effects you inquired about : https://www.mayoclinic.org/drugs-supplements/acitretin-oral-route/description/drg-20061491

Has your medical provider given you any information about acitretin? If you do opt to go this route, I'd be interested in hearing more about it.

@grammato3
Hello thank you for the link. Yes handout was given to me. It sound like a full on medicine. I see your link says depression. I’m not deeply depressed but obviously am very down at times when I find more. My doctor asked if I think I might have PTSD from all the surgeries. I’ve not looked at like that before. But I am truly struggling with the thought of more. I will let you know if I decide to take it.

@beneah77: I think I understand what you mean by “a full on medicine”. There are some medications that carry possible side effects that warrant detailed consideration due to the potential of exacerbating or causing some behavioral health distress. Not everyone who takes these meds goes on to experience them but being aware of the risk vs benefit is worthy of discussion with your medical professional.

I’m not entirely sure what your provider was referring to by asking if you felt you had PTSD, as that term in itself can trigger some undue anxiety. It’s a term that has been more broadly used than its intent which was coined to mean a condition that occurs after witnessing or experiencing a life-threatening event. So while you may naturally be anxious, upset, aggravated etc over these frequent skin interventions it may not be a full PTSD you need to worry about.

Still, the decision to take this medication is definitely one of informed consent, to weigh all the options that may help put your mind at ease which includes being well-versed in side effects so you can report if and as soon as any may arise. It might be helpful if you add a behavioral health therapist to your care team if you feel this could add to your outlook.

Am I understanding your concerns correctly? If so, perhaps these suggestions may assist. Thank you for keeping me posted!

@grammato3 morning
You are mostly understanding. I feel I’m a little young to be taking a strong daily medication just yet. As we know any medication will throw out the balance somewhere else in our system.
But if it is highly effective than I guess I need to consider this.

Ptsd…. I’m not sure and trying not to over think it. But when the SCC invaded my lymph node and I had radiation my body most definitely perceived this as a life threatening situation. They still monitor me and I nursed my father through the death of an invasive SCC.
When I explained to my doctor that I can’t stand the thought of smelling my skin burning EVER again or the rush that adrenaline gives me via antiseptic and makes my heart race and skip.
That I cannot do it anymore. Is when she suggested the idea.
I spent 8 months with an oncology psychologist.

I found another one on my leg a week ago. I cried for 3 hours.
That you so much for asking questions for understanding.
I guess this is why I posted in hope that some people have had really good results in choosing to take this options of acritetin.
Leah

@beneah77: I see, this does give context as to why your doctor had been asking. I'm sure you can appreciate their being so thorough in performing an evaluation. To undergo multiple complex treatments on a personal level is distressing enough - on top of caring for your father from invasive SCC, a rare condition in itself.

I did a search here and the only other time I saw this particular medication being referenced was in a forum on psoriasis as a potential treatment. Hopefully someone who has had first-hand experience will come across your post and can provide their own background with it, although of course individual responses can vary.

There was a medication I'd once been prescribed that carried a similar warning and I do have to admit I became aware of those associated side effects that did impact me negatively so I immediately reported them to the prescribing provider. That's important to do prior to abruptly discontinuing on your own as some meds need to be tapered slowly.

I'm wondering if a session with the oncology psychologist might be in order now? Or a psychopharmacologist who can evaluate your medical and psychological history?

Thank you for your kindness and doing a search on here for me. Kindness goes such a long way.
I’ve not heard of a psychopharmacologist. So coups definitely look at that. My GP understands talk therapy might not be enough and had suggested EMDR. Which I know little about but have heard it gets excellent results.
Thanks again Susan xx

@beneah77: That's why we're here at Mayo Clinic Connect! To assist you in your medical journey and provide some guidance, which it sounds like you've already had a great deal of. A little more can always help your already solid foundation with a caring, supportive GP.

Many people are unaware of EMDR which stands for Eye Movement Desensitization and Deprossessing. Interestingly, I just saw this technique demonstrated on a cable series I was watching dealing with the aftermath of a traumatic event - the main character was explaining it to someone by saying how strange it sounded but exclaiming, "it really does work"! This is what Mayo has available on the topic: https://www.mayoclinichealthsystem.org/hometown-health/speaking-of-health/unraveling-the-mysteries-of-ptsd

You're on a unique medical journey and many could learn from it. Thank you for sharing your experience here. I look forward to hearing more from you and wish you the best of luck moving forward!