HER2 Support Group Forums - View Single Post - What can we do about the delay of TDM-1

Sheila · 09-23-2010, 05:22 AM

As far as a "campaign" slogan for us to base our voices on...I know when I tried to get TYKERB, and kept getting denied, I finally wrote my own appeal, and titled it
I AM DYING TO TRY THIS DRUG

It got their attention, unfortunately, by the time I got it, things had progressed and it didnt offer the punch we had hoped for.

They now have the TDM-1 where I go for early access....I was one of the first to be able to get it...waiting in the wings with the Metronomic chemo.

I went Tuesday for treatment, and here is what happened:
They have it where I go for treatment now in Chicago. I have been waiting, and since i now have progression in my neck nodes yet again, causing left facial numbness, thought my prayers had been answered. But, I was sent for a MUGA, and it shows 39%...spent all day yesterday at the cardiologist, echo cardiagram...will find out today...as of right now i have been taken off everything, Herceptin, chemo, etc.....maybe some fairy dust and hocus pocus will be my new treatment. Waiting to hear from the Dr today. Sometimes it seems like I just cant catch a break! I was diagnosed too early for Herceptin adjuvant, and now after 7 years of Herceptin and various chemos, the muga is too low for TDM-1...

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09-23-2010, 05:22 AM	#60
Sheila Senior Member Join Date: Aug 2003 Location: Morris, IL Posts: 3,507	Re: What can we do about the delay of TDM-1 As far as a "campaign" slogan for us to base our voices on...I know when I tried to get TYKERB, and kept getting denied, I finally wrote my own appeal, and titled it I AM DYING TO TRY THIS DRUG It got their attention, unfortunately, by the time I got it, things had progressed and it didnt offer the punch we had hoped for. They now have the TDM-1 where I go for early access....I was one of the first to be able to get it...waiting in the wings with the Metronomic chemo. I went Tuesday for treatment, and here is what happened: They have it where I go for treatment now in Chicago. I have been waiting, and since i now have progression in my neck nodes yet again, causing left facial numbness, thought my prayers had been answered. But, I was sent for a MUGA, and it shows 39%...spent all day yesterday at the cardiologist, echo cardiagram...will find out today...as of right now i have been taken off everything, Herceptin, chemo, etc.....maybe some fairy dust and hocus pocus will be my new treatment. Waiting to hear from the Dr today. Sometimes it seems like I just cant catch a break! I was diagnosed too early for Herceptin adjuvant, and now after 7 years of Herceptin and various chemos, the muga is too low for TDM-1... __________________ __________________ "Be kinder than necessary, for everyone you meet is fighting some kind of battle." Hugs & Blessings Sheila Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications) Core Biopsy 2/22/02 L. Mastectomy 2/25/2002 Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg 6/2003 Reconstruction W/ Tissue Expander, Silicone Implant 9/2003 Stage IV with Mets to Supraclavicular nodes 9/2003 Began Herceptin every 3 weeks 3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes 3/2007 Added back the Xeloda with Herceptin for continued mets to nodes 5/2007 Taken Off Xeloda, no longer working 6/14/07 Taxol/Herceptin/Avastin 3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee 5/29 2008 Back on Taxol w Herceptin q 2 weeks 4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve 5/2009 Begin Rx with Navelbine/Herceptin 11/09 Progression on Navelbine Fought for and started Tykerb/Herceptin...nodes are melting!!!!! 2/2010 Back to Avastin/Herceptin 5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate Pericardial Window Surgery to Drain Pericardial Effusion 7/2010 Back to walking a mile a day...YEAH!!!! 9/2010 Nodes are back with a vengence in neck Qualified for TDM-1 EAP 10/6/10 Begin my miracle drug, TDM-1 Mixed response, shrinking internal nodes, progression skin mets after 3 treatments 12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments 2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!! 7/5/11 begin Gemzar /Herceptin for node progression 2/8/2012 Gemzar stopped, Continue Herceptin 2/20/2012 Begin Tomo Radiation to Neck Nodes 2/21/2012 I CELEBRATE 10 YEARS 5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression 6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin