Jan 15, 2009

Ongoing Research

Alright, since I'm no longer just posting things for myself...

First off, the bad. From my experience, far and away the best treatment for cylindromas, trichoeps, and spiros is surgical removal. Frustrating! Especially for the patient who has to go and have them removed every year. As far as I know, there are no interventional clinical trials in BSS as of yet. However, I do see patients with my much wiser and older boss at the National Cancer Institute. I'll make another posting about the study in the future.

Also, I'm working on a review article on BSS and the CYLD gene which should be out in the next 2 months or so, barring mass rejection by the genetics or oncology (cancer) journals. I'll post it when published.
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5 comments:

  1. AnonymousJanuary 16, 2009 at 6:44 PM

    I had a question for you. I had clicked on some of the additional sites you had at the bottom of your blog and was reading information on those. My question is that in reading information on two of those sites it says that "scientists examined a rare form of cancer called turban tumour syndrome or cylindromatosis." Is cylindromatosis/turban tumour/Brooke-Spiegler considered to be a form of cancer even though most of the growths themselves are benign?

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  2. insgitne11January 20, 2009 at 8:29 AM

    That's a great question. It is considered a tumor predisposition syndrome, so by default it is a "cancer" syndrome. However, BSS is very unusual in that, as you stated, the tumors are usually benign.

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  3. AnonymousJanuary 20, 2009 at 5:05 PM

    Have you found in your work that having BSS increases your risks of developing other cancers, not just skin cancers? I have had other growths removed from my stomach. Have you found that BSS involves or affect other organs?

    I live in Alabama. Do you know if there are any doctors familiar with BSS in any of our surrounding states?

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  4. insgitne11January 26, 2009 at 6:28 AM

    Wow, you should take over my job- great question again. Shoot me an email at patrickwblake@gmail.com and I can send you an answer to your first question. Unfortunately, I do not know anyone in Alabama- the nearest I know is Texas.

    ReplyDelete
  5. UnknownAugust 3, 2017 at 5:42 PM

    Do you know any experts in the Nebraska area for BSS?

    ReplyDelete

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