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Gorlin Syndrome Group

Gorlins and Erivedge

Hi, unsure if I have Gorlin's syndrome because I haven't been tested but I've had over 40 BCC's removed and continue to produce them. My dermatologist has prescribed me Erivedge to treat the condition. I'm curious if anyone here is on it and if you can tell me what side effects you had, did the drug help you and if you are taking it for Gorlin's, are you ever able to stop taking it?

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Hello wsjkcj1, You don't say what country you are in. It does alter the content of replies. I have to say that this site (Health Unlocked) has very few visitors so you might be better off with some of these.

Here are some links.

U.K. gorlingroup.org

USA bccns.org/

Everidge/Vismodegib: tinyurl.com/evervis

Facebook facebook.com/groups/1272325...

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Thanks so much. I am from the US but I've been using this site to talk to people with my other conditions because I have a hard time finding good ones for the US. I've got used to posting and having to wait till the next day for a reply. LOL Thank you for the websites! That is very helpful.

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Activity on this site is low with many people preferring to use our Group on Facebook to communicate. A new website is planned with links to this page. We are hoping that activity with increase in the coming weeks.

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Apologies I should have responded regards Erivedge. I know of a significant number of individuals who have been prescribed the drug. Results tend to be good with people seeing a good cure rate over a period of time. However, there are many side effects including, changes in taste or loss of taste; muscle cramps; hair loss and weight loss. Other reported side effects are loss of appetite, fatigue, vomiting and diarrhoea. The effects don't bother all and others persist with the treatment to have a break from conventional surgery. I believe that people coming off the medication have reported a return of the BCCs. Hope this is helpful.

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Hi Wendy

How are you doing? I had you on my mind...was worried you were near the wildfires there in OK. Let me know how you are okay?

EvaJo😊🌸

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Hi Honeybug, I'm fine. thank you for asking! The fires were far away from me and thankfully finally out. That part of the state hadn't received any rain in a long time and they finally got it last week. How are you?

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Hi Wendy

Thanks for letting me know about the fires being far away from you and that they are out. I prayed they would be.

Well I am unfortunately always flaring. But I have learned to live with it. I just had a catnap my brother called me at midnight (here) and as soon as I heard his voice I knew he was in distress. Of course that shook me up too.

He had just collapsed without warning and it had taken him an hour struggling to get up from the floor to call me.

He has advanced COPD interstitial lung disease plus he is 5 months post radiation for stage I lung cancer.

He has a lot of other health problems too. He hasn’t been wearing his oxygen as ordered despite my constant reminders what the dr. said about that. He wasn’t using it last night when the collapse happened.

So I’m concerned about him because he does things his own way ... which gets him into trouble most of the time.

Other than that I am hanging in there.

How are you doing? I have had you on my mind a lot lately.

😊🌸🤗 EvaJo

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My mother has the same lung condition and she has passed out from lack of oxygen in the past. Same as him she doesn't use the O2 unless she has to. maybe this scared him and he'll start using it now. It's amazing how little you think of something like oxygen until you don't have it and everything shuts down without it. I'm doing ok. I have a consult this afternoon with my dermatologist and we're going to see how my chemo treatment has been going. It's been a little rough past week with muscle cramping, fatigue and boy those hot flashes are no joke! LOL Wakes me up in the middle of the night and I can't take off enough clothes cool me off. I don't know how people with thyroid conditions deal with that daily. I might see if we can lesson the amount of chemo I'm taking to help the side effects but still do it's job.

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I’m so sorry about your mom going through the same thing My brother has done this several times before the cancer which I reminded him about. Still didn’t make a difference. However he had just come in from driving before the latest episode. That really scared me and I’m so thankful the good Lord kept him safe.

Regarding your hot flashes I have IEM and it gives me something comparable but I have stabbing pains all over and can’t breathe when it involves my head.

Dr. Eva Feldman from U of Mich. prescribed Paxil tabs. 20 mg. I started on 10 mg which would be standard for hot flashes. It’s an antidepressant but not what I use it for. It’s a two for one deal not bad at all if it rids you of depression too.

😊🌸🤗💕Xxx

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your brother sounds very stubborn! That's how my mom is. Do they believe they can take care of the cancer with chemo? I'm sure he can't have surgery due to his limited lung functions already.

I've heard of Paxil for depression. i'ts been around a long time. I didn't know a side effect helped hot flashes. I'll talk to the Dr about that too if we don't lower the dose of chemo.

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You’re right... he is stubborn!!!

Our late mother’s world revolved around him. Therefore he learned to rule the roost at age 3.

He used to have a very big chip on his shoulders in his youth. He doesn’t pull that on me because I won’t let him. He still behaves this way at times with my dad who is 88.

I have compassion for him because he is a victim of mother’s dysfunction.

If only parents could see the damage of overindulgence for the end results.

No. Although he has stage 1 cancer his COPD interstitial lung are too advanced and chemo/surgery isn’t an option.

After all of this he’s still smoking. Mother died of nonsmall cell adenocarcinoma.

She witnessed my paternal grandfather die of it too and that never stopped her either. At the end she was smoking 5 packs daily.

I hope the Paxil is an option for you as it sure has worked wonders for me.

😊🌸🤗💕EJ

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it is a hard thing to quit. My parent both smoke and smoked all of mine and my brother's childhood which made us smokers too. I smoked in the house when my children were small and then I started doing it outside so it wouldn't harm them but it was a tough thing to quit. I only quit about 10 years ago when I was told I had the beginning's of emphysema. My parents still smoke which is why they both have COPD and my father had a spot of cancer removed from his lung. At least my quitting had a better effect on my kids and two out of three don't smoke.

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Sorry about your folks and your history too. It is so damaging. I’m glad that you quit. CONGRATULATIONS 🎊🎉🎈💋😊🤗👏🦋💫🌹etc. You earned all of that!!!

I know it’s hard by watching my brother. He has tried multiple times.

There’s still hope for your smoking child yet. Aren’t you glad you quit when you did? The price is shocking.

Wish everyone could stop.

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thank you! :) oh yes, I don't miss it at all. I haven't really been sick with bronchitis since I quit and the money they cost now is crazy. I do wish everyone would stop and put them out of business!

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You’re welcome!!!! Yes... a smokerless 🌎!!! Aaahhh!!! Everyone would breathe more easily.

Not stepping on anyone else’s rights here just promoting wellness.

😊🌸

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