HER2 Support Group Forums - View Single Post - Sisters with Mets...should I stop Herceptin?

Chelee · 01-23-2011, 04:38 AM

Hi Kim,
It's absolutely wonderful to hear your 7 yrs out and still NED. Such an encouraging post...especially for the newly dx that lurk and post here. One can never have enough hope.

As to your question, that would be a really hard decision for me personally. However that being said I know Christine, AndiBB, and StephN to name a few were all on Herceptin a long time and have been off it quite a while now and are all doing fantastic.

But recently we did have one Her2 sister "Jhandley" (Jackie) that was doing great after liver mets for 4 yrs or so and wanted to go off herceptin against her onc's advice. Six months out or so she recurred lungs, brain and spine mets. I can't think of who at the time but there is also one women here that said she has went off Herceptin 3 or 4 times now and each time recurred. But you never know if they would of recurred regardless of the Herceptin or not? It's impossible to say for sure?

However you are seven yrs out...and your onc feels good about it...but I know it's not easy. Hang in there and hopefully StephN and some others will reply. Their opinions will be very helpful to you I'm sure.

A 2nd opinion onc might help you decide too? Wishing you all the best..and may you and NED live happily ever after.

Chelee

01-23-2011, 04:38 AM	#3
Chelee Senior Member Join Date: Feb 2006 Location: Southern, CA Posts: 2,511	Re: Sisters with Mets...should I stop Herceptin? Hi Kim, It's absolutely wonderful to hear your 7 yrs out and still NED. Such an encouraging post...especially for the newly dx that lurk and post here. One can never have enough hope. As to your question, that would be a really hard decision for me personally. However that being said I know Christine, AndiBB, and StephN to name a few were all on Herceptin a long time and have been off it quite a while now and are all doing fantastic. But recently we did have one Her2 sister "Jhandley" (Jackie) that was doing great after liver mets for 4 yrs or so and wanted to go off herceptin against her onc's advice. Six months out or so she recurred lungs, brain and spine mets. I can't think of who at the time but there is also one women here that said she has went off Herceptin 3 or 4 times now and each time recurred. But you never know if they would of recurred regardless of the Herceptin or not? It's impossible to say for sure? However you are seven yrs out...and your onc feels good about it...but I know it's not easy. Hang in there and hopefully StephN and some others will reply. Their opinions will be very helpful to you I'm sure. A 2nd opinion onc might help you decide too? Wishing you all the best..and may you and NED live happily ever after. Chelee __________________ DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes. Rt. MRM on 1-3-06 -- No Rads due to compromised lungs. Chemo started 2-7-06 -- TCH - - Finished 6-12-06 Finished yr of wkly herceptin 3-19-07 3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07 9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV. 9-28-09 Loading dose of Herceptin & started Zometa 9-29-09 Power Port Placement 10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head. 11-19-09 RT. Femur surgery - Rod placed 12-7-09 Navelbine added to Herceptin/Zometa. 3-23-10 Ten days of rads to RT femur. Completed. 4-05-10 Quit Navelbine--Herceptin/Zometa alone. 5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy. Results to FISH was unsuccessful--this happens less then 2% of the time. 7-7-10 Recurrence to RT axilla again. Back to UCLA for options. Last edited by Chelee; 01-23-2011 at 01:50 PM..