HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 12-16-2012, 11:38 AM   #1
CarolineC
Senior Member
 
CarolineC's Avatar
 
Join Date: Oct 2011
Location: British Columbia, Canada
Posts: 139
Gilbert's Syndrome

Hi all,

So I'm at my naturopath's office a few days ago and she is recommending I start taking N-acetyl cysteine because I am lacking an enzyme because of my Gilbert's Syndrome and that people with this syndrome have hormone problems. Three years ago when I was first diagnosed I printed out a ton of paperwork on a website called gilbertssyndrome.com where on the introduction page there were a number of effects linked to this syndrome-at the bottom of the page was cancer- a study had been done on women of African ancestry where the low activity UGT1Aa alles to be positively associated in an increased risk of invasive breast cancer. Now this website is very involved and clinical, I don't know who runs it, and every other reputable website says Gilbert's Syndrome (GS) is benign. I've talked to my oncs about it and they say it's benign.

After my appt with my np I thought I would google breast cancer and GS and this website came up www.ncbi.nlm.nih.gov/pubmed/21636218 - is GS a new risk factor for breast cancer, an abstract posted in 2011. I don't know how to access the full file and was wondering if someone can help me.

Also, does anyone else have this condition, and have you been told anything to the contrary of benign? I have had alot of issues since I was diagnosed with GS in my mid-20's, especially adrenal problems, that I found on the GSsyndrome website and am wondering if it's true or just a coincidence. All I remember when being diagnosed is the doctor telling me to eat small meals and avoid stress. When I was on Tamoxifen I thought I couldn't metabolize it or I became resistant to it and maybe that caused my metastasis-maybe it's because I have this condition that I had a problem with Tamoxifen.

Thanks for your help.
__________________
Dx Age 47 July/09 Stage 2B/3
Left Mast. Aug 09- 1 of 3 positive nodes in axillary dissection (yes only 3)
ER+ 90%, PR+ 20%, HER2+++
4 x AC, 4 x Paclitaxol and H (Neupogen for 7 cycles), Herceptin complete Nov 10
Mar–Apr 2010 25 Rads
Apr 10-Oct 11- Tamoxifen
Oct 11 – 3 cm met to sternum
Oct 11-Letrozole for 3 mths, start Clasteon-bone remodeller
Nov-Dec 11 - Happy 50th Birthday -20 rads to sternum
Jan-April 2012 Taxotere/Herceptin-6 cycles (Neupogen for 5)
Herceptin every 3 weeks-Letrozole added Nov 2012
CarolineC is offline   Reply With Quote
Old 12-16-2012, 06:51 PM   #2
'lizbeth
Senior Member
 
'lizbeth's Avatar
 
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
Re: Gilbert's Syndrome

I am interested in hearing more. My brother-in-law and a sister-in-law have the syndrome too.

Perhaps the condition is not as benign as first thought.
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes

Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"

Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla

Reconstruction: TRAM flap, partial loss, Revision

The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
'lizbeth is offline   Reply With Quote
Old 12-18-2012, 09:53 AM   #3
Kathy T
Senior Member
 
Join Date: Aug 2006
Posts: 79
Re: Gilbert's Syndrome

I also have Gilbert's Syndrome and thought it to be benign. It has caused some problems with TDM-1 because of increasing bilirubin levels, but they has allowed me to continue with the tx. since I was previously dx. with Gilbert's. I also am interested in any further info re: this connection.
Kathy T
Kathy T is offline   Reply With Quote
Old 12-18-2012, 09:57 AM   #4
Lani
Senior Member
 
Join Date: Mar 2006
Posts: 4,778
Re: Gilbert's Syndrome

I PMd the article to Caroline C

It is in a journal called Medical Hypothesis where authors CONJECTURE

If the conjecture seems promising, other scientists may take up the search to find out if it is true.

I suggest browsing PUBMED for Gilberts syndrome article

I am unfortunately not available to do so now.

I would think if you PMd Caroline she could share the short article with you.

Good luck
Lani is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 07:33 AM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter