HER2 Support Group Forums - View Single Post - Progression & Toxic on Taxol, dont know whats next

StephN · 04-16-2009, 04:10 PM

Dear Sheila -
Getting a bit behind on the board here, what with getting ready to go to Denver to the cancer researchers' meeting.

So very bummed and torn to learn that you did not have such good news. Taxol was a good drug for me and I think it did fight your cancer well for a long time. Believe me - Sheila, you are the OPPOSITE of toxic!!!

As for what is next. Do you think that the T-DM1 is far enough along in trials that it could be given "off label" if you don't qualify for a trial?? Maybe time someone pushed this question.

Then there is the new drug that got rave reviews in San Antonio - Neratinib.

Also Sutent in various combinations.

Just keep in mind that the treatment you have been on is still working in your body to some extent due to their half life.

I am sure it has been a hard row to hoe (not with a PINK one!) getting over the pneumonia while somewhat weakened from the chemo. This break should do you some good as far as your stamina goes. Get some fresh air and practice some deep breathing exercises.

I hope and pray that your mother is doing better by now and will continue to regain some of the lost movement.

04-16-2009, 04:10 PM	#33
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Dear Sheila - Getting a bit behind on the board here, what with getting ready to go to Denver to the cancer researchers' meeting. So very bummed and torn to learn that you did not have such good news. Taxol was a good drug for me and I think it did fight your cancer well for a long time. Believe me - Sheila, you are the OPPOSITE of toxic!!! As for what is next. Do you think that the T-DM1 is far enough along in trials that it could be given "off label" if you don't qualify for a trial?? Maybe time someone pushed this question. Then there is the new drug that got rave reviews in San Antonio - Neratinib. Also Sutent in various combinations. Just keep in mind that the treatment you have been on is still working in your body to some extent due to their half life. I am sure it has been a hard row to hoe (not with a PINK one!) getting over the pneumonia while somewhat weakened from the chemo. This break should do you some good as far as your stamina goes. Get some fresh air and practice some deep breathing exercises. I hope and pray that your mother is doing better by now and will continue to regain some of the lost movement. __________________ "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.