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Old 05-10-2007, 09:08 AM   #1
Joy
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$2100???

Oh my goodness. Ijust found out that my insurance requires that I pay 60% of the cost of Tykerb which equals $2100/month. Tykerb Cares only referred me to the Patient Access Network and Healthwell. I got in touch with the PAN and they will begin a process, but I won't even know if I'm approved for another 2ish weeks. they will reimburse retroactively up to 90 days prior to approval, but if I'm not approved then what?

So, I'm now in the OTHER club of Tykerb frustration. Meanwhile it has been 2 weeks without any treatment and I really don't want to go too much longer.

I know who should work for Tykerb Cares-US! WE would get the job done wouldn't we ladies?
__________________
with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 05-10-2007, 09:51 AM   #2
SoCalGal
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Did you have to pay the same percentage for your other chemo? Why just this one?
__________________
1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 05-10-2007, 04:10 PM   #3
Lolly
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Angry there oughta be a law

Joy, I ran into the same problem with my insurance which is a Medicare based plan. They view Tykerb as a "Specialty Drug" and it's at the highest copay. I was told I could apply for an "Exception" for Tykerb, the paperwork would take a couple of weeks, but no guarantee it would be approved.

The crime here, IMHO, is that insurance companies are allowed to classify oral chemotherapies as prescription meds and can therefore charge a higher copay, whereas infused chemo's are normally covered at 100% or close to it depending on the plan.

Seriously, there oughta-be-a-law!!! Maybe we're the ones who will have to advocate for a change!

Joy, I am shocked and dismayed for your sake. Ask about an appeal of the coverage offered, see if they can offer an exception.

And please don't give up hope.

<3 Lolly
__________________
Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 05-10-2007, 05:22 PM   #4
Mary Jo
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Oh my gosh.......on top of all the other worries one should NOT have to worry about those insurance companies and all the games they play. That is almost more frustrating than the cancer, ya know?

I'm sorry for those who have that trouble on top of the other troubles.

Hugs,

Mary Jo
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"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
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Old 05-10-2007, 05:48 PM   #5
Jean
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One would think that since Tykerb is oral it would also cost less
to administer verses the other chemo's which require infusions, staff and
nurseing attendance..hospital or cancer center operation costs...how
does the insurance carriers get away this and justify this rational?
No one in our country should have to be charged that sum of money monthly
to have their meds....we spend billions out of the states...Charity begins
at home..here in the good USA....I can't understand why the rich and famous
are not aware that many people right here need help!

Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 05-10-2007, 07:05 PM   #6
Joy
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I'll say it again

I love you guys. I do think, as Lolly said, that we may need to be the ones who advocate for change. As one of my best friends said, "You know, a lot of money, time and hard work goes into developing these drugs to help people with these diseases and yet no one can afford to buy them."

I am going to write a letter to the insurance company mentioning the fact that they seemed willing to cover herceptin weekly (not cheap) at 100%. So "WHAT UP?" with Tykerb. I'm also going to take them up on their offer of a nurse case manager, which I don't really need, but now maybe I'll have one central person.

And, of course, my AMAZING family is willing to help get me on this drug. Even my ex-husband said that he'd charge it to at least get started and hopefully the Patient Access Network Foundation will approve me and can help with most of this. Which all seems dumb because I do have insurance and I'm not wanting to take advantage of other programs that other people probably need more than me. But as I have felt like a loser all day that I can't buy my own meds, my friends and family have reminded me that virtually no one can pay $2100/month for meds.

Meanwhile the little cancer cells just go unchecked. And I'm frustrated and yet I know that people all over have much harder circumstances, much less help or even love and that really makes me sad. I'm one of the lucky ones. 'specially 'cause I have you guys.
__________________
with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 05-10-2007, 08:22 PM   #7
hutchibk
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You are in the hell that I was in last week. This week has been a new kind of hell. Anyway, back to what I learned in last week's hell. Because Tykerb (and in my case Xeloda) are oral, they do not get charged to your insurance under the medical portion of the plan like infused chemo. The are considered prescription and charged to your prescription benefit. My script benefit is $1500 for the whole year! LOL. I was also mortified to learn that I would owe upwards of $2200 for each, Ty and Xel, each month! I promptly called my oncologist's nurse, who promptly put me in touch with the patient assistance and advocacy nurse at my cancer clinic who did the homework, made the calls, and found out how to apply me for the GSK and Roche assistance programs. Were it not for her, I would not have known what to do. Call your onc's office, tell them what you have learned about your co-pay, and ask if they have a patient advocate assistant who knows the ropes and can help you out. At my clinic, this is her specific job, and she is awesome. In lieu of her, I would have gone straight to the clinic social worker.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 05-10-2007, 08:31 PM   #8
Jeanette
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Smile sad time for me

Shiela, my prayers go out to you and your friend. I have a friend that I have had for over 40 years and guess what ,we were diagonosed with cancer the same day.Hers is in the colon and mine was breast . We raised our kids together and have went thur hell together. With all the radation she has had she is now in a wheelchair. We hold onto each other dearly and have talked about what could happen' All we both ask if and when the time comes is to go in peace with our families with us. I certainly hope your friend is at peace with herself. My prayers go out to you both, Jeanette
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Old 05-11-2007, 07:43 AM   #9
Joy
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thank you brenda

I know I'll be working with the oncs office today. I appreciate your newly acquired savvy. I wish it was easier for you. I'm lucky that I don't have a maximum drug benefit allottment. But, I knew these drugs because they are oral don't work the same as infusion drugs within the insurance biz. I'm still going to point out to the insurance company how dopey they are...'cause I want to.

I thought the GSK program was for those without insurance? But if they can help with this ridiculousness, that would be great.
__________________
with love and gratitude,
joy

dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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Old 05-11-2007, 11:02 AM   #10
hutchibk
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I believe that GSK and Roche know that the co-pays and insurance processes for this new protocol are a nightmare. I could be wrong, but I think they have assistance programs that are geared to try and help with these issues and not just for uninsured folks.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 05-11-2007, 07:20 PM   #11
Odette
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Now You're Covered, Now You're Not

Joy, Lolly Brenda,

I know how frustrating this is.
Since 4/13 when I was prescribed the X/T I was told by my Insurance that Xeloda is covered (once), Xeloda is not covered (twice), Tykerb is not covered (twice), Tykerb covered (twice).
I spent two hours with my social worker/patient advocate today when they finally decided that they will pay for Tykerb, but even after 55 minutes on the phone we could not find out at what co-pay level will they cover it.
(The mean time Commitment has approved me for 1 month). The pharmacy is supposed to send it on Monday.
Hopefully a whole month after I had it prescribed I can finally start.
I'll just pay for my Xeloda (get only a week's supply at a time) for now and see if I can get some help. Just do not want to wait any longer.

I tried to write up the whole going back and forth, for the record. It is pretty long and I'm still working on it I'll send a version of it to my Insurance Co also maybe I can find a journalist who would use it in an article. OR we could fit it into the Tykerb Tygers Diarrhea Divas opera...

Keep in touch,
Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment

'One does not get to choose one's adventures'

I'm experimenting with my diet, using green tea, flax seed curry and olive oil

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Old 05-11-2007, 07:57 PM   #12
Andi
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Joy - I am so sorry to hear about your copay dilema. It stinks that on the one hand we have these new promising drugs and then we get caught up in he system trying to access them. I think Brenda is on the right track, let's hope you can find a case worker that will really do you some good. You are in my prayers, girl, hang in there- you will find a way to make this work.
__________________
Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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Old 05-12-2007, 08:24 AM   #13
cvbul
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Expensive really.
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Old 05-12-2007, 10:39 AM   #14
Sandy H
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Jean is so right, charity starts at home. Lets take care of our own and than what is left over help the others! These drugs cost so much because its the advertising that goes along with them!!!!! Lots of the money given for research goes for advertising these drugs. Its all a business where money does the talking. Sorry, don't want to sound negative but as I say if the truth hurts-too bad. That's my two cents worth for today. Wishing you all a very Happy Mother's Day. Sandy
__________________
Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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Old 05-12-2007, 11:33 AM   #15
Brenda_D
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I ran into something similar with Herceptin, and if it weren't for my Onc deciding to give me a "personal credit" on what I'd owe him out of pocket for each treatment, I wouldn't be able to get it.

I ran across something in an AARP journal about "biologics" and emailed my state representatives (Durbin and Obama) about the problem.
A little about it here.
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Old 05-12-2007, 03:35 PM   #16
ElaineM
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Tykerb insurance issues

Hi,
Does anyone know if any of the Medicare part D plans pay for Tykerb or if any of the drug companies financial aid programs do?
ElaineM
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Old 05-12-2007, 08:18 PM   #17
Lolly
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Elaine, I have Medicare and my prescription plan considers it a Tier 4 prescription so it's at the highest co-pay, 25% for me (total monthly cost of Tykerb is around $3,000). On top of that, even with my plan paying 75% I was thrown into the Coverage Gap, aka The Donut Hole, and my total out-of-pocket for this first month was almost $1,500. Next month I will have to pay $700-$800 before I reach the maximum out-of-pocket of $3,800 and then after that the plan will pay 95% so my share will be $170-$180.

It's a shame the government is allowed to dump the cost of chemo drugs on those least able to afford them, just because they're oral not IV!

Sorry to be the bearer of bad tidings, but TykerbCares does have a Patient Assistance program to help bear the cost.

<3 Lolly
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Sept.'99 - Dx.Stage IIIB, IDC ER/PR-, HER2+++ by IHC, confirmed '04 by FISH. Left MRM, AC x's 4, Taxol x's 4, 33 Rads, finishing Tx May 2000. Jan.'01 - local/regional recurrence, Stage IV. Herceptin/Navelbine weekly till NED August 2001, then maintenance Herceptin. Right Mast. April 2002. Local/Regional recurrence April '04, Herceptin plus/minus chemo until May '07. Gemzar added from Feb.'07-April '07; Tykerb/Abraxane until August '07, back on Herceptin plus Taxotere and Xeloda Sept. '07. Stopped T/X Nov. '07, stopped Herceptin Dec. '07, started Avastin/Taxol/Carboplatin Dec. '07. Progression in chest skin, stopped TAC March '03, started radiation.

Herceptin has served as the "Backbone" of my treatment strategy for over 6 years, giving me great quality of life. In 2005, I was privileged to participate in the University of Washington/Seattle HER2 Vaccine Trial.
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Old 05-14-2007, 08:32 AM   #18
Sheila
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What a difference we all have in out insurances. Although I haven't taken the Tykerb yet, I do know that my husbands BCBS of IL pays for my Xeloda through Caremark. I get 280 tablets (500mg) sent via the mail through their Onc. Med Dept, via FEDX, and my cost is $5.00....I would think Tykerb would be the same....although the hospital way overcharges for my Herceptin every 3 weeks (10,000), I don't pay a dime. I just got a new shipment of Xeloda. If she takes me off it next week when I go to see the onc., and says I am not going back on it, I will be glad to send it to someone, its never been opened. I will see what she says...I guess i am lucky to have my husbands insurance.
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"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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Old 05-14-2007, 08:41 AM   #19
Odette
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Thanks so much for the offer!

Sheila,

unless sy else needs it more I'd love to have it, right now I'm taking a week's supply of a friend's who is off of it but after this is out I'll have to pay for it - I think it is about $ 900 (+) for a month's supply.

Eventually I hope to be on assistance/fight it out with insurance but that might take a while.

Thank you so much for the offer!

Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment

'One does not get to choose one's adventures'

I'm experimenting with my diet, using green tea, flax seed curry and olive oil

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Old 05-14-2007, 08:47 AM   #20
Odette
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Join Date: Apr 2007
Location: Shaker Heights, Ohio
Posts: 86
Angry

Sheila,

I'm just reading your signature and your progression sounds a lot like mine. Have you discussed radiation of the nodes with your oncologist?

I had that done it was terribly painful but effective for me. How about adding Tykerb to the Xeloda?

Second opinion?

Hugs and prayers,

Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment

'One does not get to choose one's adventures'

I'm experimenting with my diet, using green tea, flax seed curry and olive oil

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