Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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05-30-2010, 01:51 AM
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#1
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Tykerb assistance?
Mom's in the dreaded donut hole of Medicare D and trying to pursue path to make the big T affordable. Have applied to a a few programs but don't know how it will go. Any tips? Is there a network for patients to exchange unused/"failed" meds?
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05-30-2010, 04:57 AM
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#2
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Tykerb assistance?
Sorry Rich, was wondering if the offer of 3 months free trial was available in the States? That was the offer from GSK to the UK government.
Ellie
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05-30-2010, 06:44 AM
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#3
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Senior Member
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
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Re: Tykerb assistance?
Rich, I have often wondered the same thing and think how wasteful it is for expensive medication to go to the landfill. I know most doctor's offices will not take the pills you can no longer take and dispense to others--liability issues they tell me. The other thing that disturbs me these days is that the pharmacies all put an expiration date of one year on prescriptions. They do this because it is easy for them----don't want to look up or maintain a database of the "real" expiration dates. Most meds have a minimum of two years and many are much longer than that. If Medicare wants to save money on meds, you would think they would demand this practice be changed.
And as for GSK, if they don't offer the three months free trial in the states and do in the rest of the world, this should also be changed.
As I understand the health care changes (mostly negative in my opinion), the donut hole is being fixed so you may not have this problem next year. Tykerb is expensive---around $3K a month I believe.
Another thought---maybe you could contact GSK directly and discuss options. I did this with Astro Zeneca for my sister when Faslodex was first approved. It was a fight but I eventually got what I wanted---I think they might just have wanted to get rid of me but that's okay.
I wish I had some pills to send your mom but Tykerb is still working for me after 15 months.
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05-30-2010, 10:23 AM
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#4
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Tykerb assistance?
Access programs from pharma seem to vary from country to country. The deal the UK gets makes a kind of sense in that a patient might be able to start more immediately and find out if the drug is helpful before NHS is on the hook for it. I suppose it's one of those cost shifting scenarios where specific arrangements are possible here and there but eventually the $$ needs to come from somewhere...usually the US.
But you would think oral meds with no cost of IV facility, staff or premeds would be aggressively embraced. (Here's where GDPawel would mention IV drug incentives for doctors ![Wink](http://her2support.org/vbulletin/images/smilies/wink.gif) Interesting article on access HERE. Interesting thoughts on expiration dates, Nancy.
There is a GSK entity named "Tykerb Cares" but it is not a financial assistance program. They help patients determine their insurance coverage and, if inadequate, tell you about various assistance programs to apply for. GSK does have a commitment to access program that can be applied for but I don't know how that will work out or how long it will take. Novartis has a simple program/coupon for a free month of Femara which has allowed mom to get going on that while ironing out coverage issues. That kind of approach with Tykerb would be a reasonable middle ground.
I've heard somewhere that some hospitals/clinics pool their unused onco meds but I haven't heard of that around here.
I'm glad Tykerb is working long term for you. Helps motivate me to push through the red tape.
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06-05-2010, 11:13 PM
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#5
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Member
Join Date: Jun 2010
Posts: 8
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Re: Tykerb assistance?
My sister in UK just progressed from bone mets to liver and lung mets. Currently on Herceptin, about to start Taxol. Onc say's unlikely NHS will pay for Tykerb. Would be very grateful for more information on the free three month supply in the UK.
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06-04-2010, 10:23 AM
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#6
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Guest
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Re: Tykerb assistance?
There is a program called Tykurb Commitment to Access through GlaxoSmithKline the doctors office can contact I get mine through the program for shipped to my home I don't have insurance anymore so i get it for free thru the program maybe they can help
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06-04-2010, 10:30 AM
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#7
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Tykerb assistance?
How long did it take for the access program to decide and deliver?
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06-07-2010, 03:14 AM
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#8
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Tykerb assistance?
Hi
The 3 months 'free' offer was rejected by the British government.Tykerb was considered not to be cost effective by NICE, the body responsible for deciding which drugs are available on the NHS. This was in spite of a public petition and representations from leading British breast oncologists.
May I suggest a couple of things that may help. The newly elected Prime Minister has promised that he will fund all new cancer drugs once in office. With this in mind I would suggest your sister or her family contact their member of Parliament to pursue this on her behalf.
The other option which she could pursue if her onc was in agreement (and this is a key issue) is for him to contact her Primary Care Trust to ask them to consider whether given her circumstances they will agree to fund Tykerb.
Hope this helps
Ellie
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06-07-2010, 08:51 AM
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#9
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Member
Join Date: Jun 2010
Posts: 8
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Re: Tykerb assistance?
Ellie - thank you so, so much. This information is really helpful! We will try both avenues.
Thanks again
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06-08-2010, 02:03 AM
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#10
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Senior Member
Join Date: Feb 2009
Posts: 1,526
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Re: Tykerb assistance?
Glad to be of some help.
Ellie
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06-13-2010, 09:43 AM
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#11
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Senior Member
Join Date: Dec 2006
Posts: 415
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Re: Tykerb assistance?
Rich~
I eventurally received my Tykerb NOT through Tykerb Cares (aka Tykerb-doesn't-really-care-unless-you-can-pay-for it), however, I did have to apply to Tykerb Cares 1st, get denied, and then apply to Committment to Access. It was a frustrating and stressful, and expensive process- as I was paying out-of-pocket for the drug while waiting to get approval.
Once my application was in and I was approved, they were actually pretty efficient.
Here's a phone number I have for
Committment to Access:
1.866.265.6491
I hope someone there will be able to guide you through the process.
Keep us posted.
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06-13-2010, 10:10 AM
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#12
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Re: Tykerb assistance?
Thanks JML. We did discover committment to Access. Mom just got shipment yesterday. She's a bit afraid because some of the literature mentions liver concerns. Her last LFT a few weeks ago was much better than previous but still slightly elevated. Maybe starting with a few pills and work up to full dose?
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06-13-2010, 03:57 PM
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#13
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Senior Member
Join Date: Dec 2006
Posts: 415
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Re: Tykerb assistance?
Glad to hear you guys maneuvered through the process and are getting the Tykerb for free.
It's probably a smart idea to modify the dose to start (assuming doc's okay with it too) and increase as tolerated. Especially b/c of all the GI issues.
Best of luck with it for your Mom~
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07-01-2010, 01:06 PM
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#14
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Member
Join Date: Jun 2010
Location: Deutch
Posts: 22
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Tykerb assistance
On the front-page there is a Forum Categories block with links to the different forums. It contains a link to Support but that forum is actually called Assistance.
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07-21-2010, 03:02 AM
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#15
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Senior Member
Join Date: May 2010
Posts: 432
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Re: Tykerb assistance?
Can someone better informed help me with some info Is commitment to access restricted to the US alone? My wife's Onc has said clearly that after her 9 doses of herceptin is over he is switching her on to Tykerb.My insurance is exhausted
PBK
__________________
PBK
huband of Hema
Metstatic Breast Cancer Stage 4
Left breast cauliflower 25x20cm
ossousmetstatis in vertbrae secondaries L4=L5secondary
nodules in both liver lobes secondary
Diagnosed 10th March 2010
ER/PR-ve
Her 2 neu +++
Taxotrne Zylotec started 16th March
Herceptin added 5th April.9th Herceptin over on 20th Sep '10.Started on Tykerb and Xeloda on 22nd Oct2010TYKERB 4 TAB A DAY XELODA 4 TAB A DAY ONE WEEK ON ONE WEEK OFFZoletrust infusion every 4 months.Lesion in Brain 3D CRT Radiation started on 1st Feb'12 for 20 days ,5 days a week for 4 weeks.Devloped a small lump in breast.Xeloda stopped from 11th April '12.On Taxol.After 3 cycles of Taxol Taxol stopped.Back to Xeloda regime from 3rd July
Herceptin started again on 27th Dec 2012.Xeloda stopped Navelbin added on 7th February 2013.Now on Tykerb Herceptin and Navelbin
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01-25-2011, 01:26 PM
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#16
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Senior Member
Join Date: Aug 2009
Location: Paxton, Ill
Posts: 32
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Re: Tykerb assistance?
Tykerb in Illinois runs near five grand a bottle. I go through a bottle a month I've almost been on Tykerb a year. My health ins. is medicaid and it covers all cost thankfully.
__________________
-July 07 - DX w/ICD stage 3a, est+, her2+
- started a/c four doses
-Aug 07 -DX w/ bone mets to shoulder and rib 10 days rads
- 6 mths taxol
-6 mths abrexene
- Nov 07 started herceptin still on
- was on tamoxifin wasn't working, gettin something new soon
Aug 09
- brain mets
- 3 tumors
- highest being 4cm large
- others under 2cm
- WBR rads in morning, than afternoon hitting each one direct
- rads to vertebrate
- Sept 09
- getting ready to start Xeloda
- continue herceptin
- just finished w/ rads on brain mets, and vertebrate
(think im doing this right now)
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01-25-2011, 05:28 PM
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#17
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Member
Join Date: Jun 2010
Posts: 8
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Re: Tykerb assistance?
Thankfully my sister has JUST been approved for Tykerb under the emergency fund the UK government authorised in Oct of 2010 because it was getting such a bad rap for it's cancer treatment compared to other European countries. Sadly she is not currently well enough to start treatment, but her onc is trying to build her up.
For anyone applying in the UK I believe there are very strict guidelines about which cancers, which drugs and who is eligible for this new funding, because it is a relatively small amount of money.
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01-26-2011, 05:35 AM
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#18
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Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
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Re: Tykerb assistance?
I have half a bottle of Tykerb i am no longer on...hate to throw it away as I know how much it costs!
__________________
"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
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01-26-2011, 02:03 PM
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#19
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Senior Member
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
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Re: Tykerb assistance?
Rich,
I hope you mom is doing well. Is she taking Tykerb alone?
I am on the T-DM1 trial and I have to turn my medicine in at the end of every three week cycle. It makes me very sad that the medicine I do not use has to be destroyed. I talked to the research nurse, and she said, "That this was standard procedure in case the medicine had been tampered with." I don't understand why the research nurse could not count the three week supply of Tykerb for me. I am going to email Gentech and see. It is really sad that people need this medicine and it has to be destroyed and people need it.
Amelia
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01-26-2011, 04:03 PM
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#20
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Senior Member
Join Date: May 2006
Posts: 3,142
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Re: Tykerb assistance?
I found this useful article in Cure Today about applying for financial assistance from various organizations not only for Tykerb, but for other cancer drugs too.
http://www.curetoday.com/index.cfm/f...rticle_id/1181
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