HER2 Support Group Forums - View Single Post - why lapatinib is likely to be effective for more patients than herceptin is

StephN · 02-07-2007, 01:07 PM

"PTEN can be tested for. Perhaps in the future they will do a trial looking at whether the presence/absence of PTEN predicted who would be better treated with herceptin vs lapatinib as treating with both (which seems to be very effective) may prove exorbitantly expensive."

Perhaps I SHOULD be tested for PTEN levels - if old, paraffin-fixed tissue is OK to use for that.

Then we would not be talking about my case (and a few others similar) in such an anecdotal setting. I know my doctors are interested in why I have done so well, and we are just making assumptions as my diagnosis was so far ahead of the availability of these tests.

I would LOVE it if something could be learned from those is us who are so many years out Stage IV and on Herceptin only as we are from the hormone negative bunch. That would help us understand our prognosis from here, as well as give others another treatment track to go down that would give them better odds. (I know that Tykerb and others are being tried based on good science, but I think the testing of our tumors should yield further information.)

02-07-2007, 01:07 PM	#4
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	From Lani's post on PTEN "PTEN can be tested for. Perhaps in the future they will do a trial looking at whether the presence/absence of PTEN predicted who would be better treated with herceptin vs lapatinib as treating with both (which seems to be very effective) may prove exorbitantly expensive." Perhaps I SHOULD be tested for PTEN levels - if old, paraffin-fixed tissue is OK to use for that. Then we would not be talking about my case (and a few others similar) in such an anecdotal setting. I know my doctors are interested in why I have done so well, and we are just making assumptions as my diagnosis was so far ahead of the availability of these tests. I would LOVE it if something could be learned from those is us who are so many years out Stage IV and on Herceptin only as we are from the hormone negative bunch. That would help us understand our prognosis from here, as well as give others another treatment track to go down that would give them better odds. (I know that Tykerb and others are being tried based on good science, but I think the testing of our tumors should yield further information.)<!-- / message --> __________________ "When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau Live in the moment. MY STORY SO FAR ~~~~ Found suspicious lump 9/2000 Lumpectomy, then node dissection and port placement Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR - Adriamycin 12 weekly, taxotere 4 rounds 36 rads - very little burning 3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED! 2003 & 2004 no active disease - 3 weekly Herceptin + Zometa Jan 2005 two mets to brain - Gamma Knife on Jan 18 All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying Continue as NED while on Herceptin & quarterly Zometa Fall-2006 - off Zometa - watching one small brain spot (scar?) 2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava 2008 - Brain and body still NED! Port removed and scans in Dec. Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011 STILL NED everywhere in Feb 2014 - on wing & prayer 7/14 - Started twice yearly Zometa for my bones Jan. 2015 checkup still shows NED 2015 Neuropathy in feet - otherwise all OK - still NED. Same news for 2016 and all of 2017. Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.