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Old 03-09-2011, 07:06 AM   #1
Joan M
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Re: Cost of Tykerb and Xeloda

Does anybody else have anything to add about these costs?

I'm heading to Albany, New York's state capitol, on March 15 for New York State Breast Cancer Education and Advocacy Day with several other women. I have 20-minute appointments with different legislators from the five boroughs of NYC to discuss two bills. One bill involves giving parity to oral and infused chemo drugs. Other states have similar legislation. For purposes of this legislation, oral chemo also includes endocrine drugs like Tamoxifen and aromatase inhibitors. So any information on the cost of those drugs would also be useful. I asked about Tykerb and Xeloda because that affects all HER2+ metastatic survivors, and being metastatic I've been asked to present that case. But the issue also involves early stage patients, as there are an estimated 400 anti-cancer drugs in devlopment and 25% of them are planned as oral drugs.

While infused chemo is paid for by the medical portion of private insurance, oral chemo is covered by prescription plans and have hefty out-of-pocket expenses, and we need to change that.

Thanks.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2023 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!

Last edited by Joan M; 03-09-2011 at 07:16 AM..
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Old 03-09-2011, 07:48 AM   #2
Sheila
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Re: Cost of Tykerb and Xeloda

Joan
I used to pay a nominal fee for Tykerb and Xeloda, like 20.00 per month. We have to get all oral drugs through a mail order pharmacy like Caremark or Curascript....it recently changed to Curascript, which is a pain to get anything from. My Neupogen shots are now 30.00 for 5, and I have been fighting over the phone (and so has the Dr's office ) with Curascript, to get the prescription filled as today is the day I take them again. Dont know if they will arrive or not. I have no idea what Tykerb would cost from them, I just know ordinary drugs have tripled since last year.
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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
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