Hi,
I am a Gorlins sufferer.
Recently my BCCs are appearing more frequently and are growing at a faster rate.
I am concerned that this might indicate a progression in the disease.
Does anyone have any information on how Gorlins progresses throughout life? does it get "better", or "worse" or is it a bit of a lottery.
All information gratefully received!
Many thanks
Simon
Hi Simon
I have found as I get older that my BCCs appear faster and grow quicker too. I also seem to be developing more aggressive BCCs with an escalated growth rate and deeper penetration and advanced BCCs, i.e. they appear where a previous BCC has already been removed and some have reappeared again.
My BCCs seem to appear in phases, I get more at some times of the year and it's not due to sun exposure as I am always extremely careful about sun protection etc. I have argued with my consultants over this as they say it can't be possible but I am also convinced that my BCCs appear and grow faster when I am under stress.
I now have laser removal under GA when I have around 20 to 25 BCCs, and this has gone from having surgery once every 2 years to requiring it every year or more. Last treatment was removal of 28 BCCs in February and I have a whole new batch and some returners since then and am likely to be back in hospital before the end of the year.
I am obviously not happy about this but I don't get on with any of the non-invasive treatments my consultants have prescribed so it seems like the only option at the moment. I truly wish there was some other way.
I too would welcome other people's experience of this.
Very best wishes to you and all members f the group.
JPB
Hi Simon and JBP
I too feel that my BCCs are growing more and more also seem to be growing quicker. I toohave undergone treatment failure with PDT . I have lost count has to how many BBCs I have had had and still have . I am at the hospital regular for different treatmnets. My last been MOHs . I too am worried as to the future as already have partial hearing loss. Sight has deteteriated quickly and only when attended the hospital eye department was made awrare that was born with cattarahs apparantly this is linked to the condition. I have also devolped further cattarah am now waiting surgery.
I must add I am only 48 !.
I too would welcome other patient experiences etc.
Sharon
What r pdt
PDT is Photo Dynamic Therapy
This involves a light sensitive cream applied to the area , once absorbed some hours later you are put under a very strong hot light The cream is absorbed by the cancer cells and light is directed here so good tissue is not damaged.This treatment did not work for me , but others may be different.
I'm taking erivedge, its working but the side effects r hard to deal with been on it for six months!
Hi Mark
I have not heard of erivedge can you tell me a little about this and the side effects. I am soon to see my consultant to discuss next treatment etc .
It is basically oral chemo, it is a pill ..capsule u take once a day.side effects r loss of taste everything taste bitter, muscle cramps weight loss hair loss.but no more bcc on me I had 40 bcc and they all have dissapeared! Its just dealing with the side effects which is rough! Check it out on internet erivedge. Good luck
Are you still on the Erivedge? I'm new to it and trying to find someone who has experience but not finding many post on it anywhere.
Thanks Sharon and Jay - looks like it isn't just me, then.
Damn - and I thought I was sooooo special!
If anyone else has similar experiences, I'd really appreciate hearing from you.
Simon
Hi everyone.
I have just hit my mid forties and my BCCs have certainly speeded up in the past couple of years - having said that my mum didn't have a real increase in her BCCs until her mid sixties. When I queried this with my cancer nurse at the hospital she told me it can "ebb and flow" throughout life but can also be affected by general health ie the more run down you are generally the more BCCs. This seems like a vicious circle to me as I seem to be permanently run down following treatments or general stress related to Gorlins therefore my symptoms get worse ??!! I have just had my first treatment by PDT and was told this was the way forward but reading your comments I'm not so sure now.
Best Wishes to all, and good luck with any treatments
Susan
HI all,
Im 53, cant say my bbc's are getting worse but seems the nature of the beast to 1one treated get 2 back.Havent tried erivedge though might give that a go.
As the saying goes "Don't let the bcc's get you down"
Regards and best wishes to all.
Robert
Erivedge is an oral medication which is licenced in the USA for the treatment of BCCs which are locally advanced (spreading) or are deemed inoperable by a healthcare professional. The treatment is not currently licenced in the UK but clinical trials are to be launched very shortly. We are in communication with healthcare professionals and the pharmacuetical company involved and hope to publish information within the next few weeks.
