| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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06-08-2009, 01:08 PM
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#1
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Senior Member
Join Date: Dec 2006
Posts: 415
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YIKES! Tykerb/Xeloda STICKER SHOCK
YOWZE!!
The pharmacist tells me that my 1st month ofTykerb/Xeloda will cost $4807.67 out of pocket!!
Talk about sticker shock - I think I would have burst into tears upon hearing that had I not already read about the experiences of other folks on this Board.
Even the pharmacist had a sad/shocked look on his face when he told me the total amount. And he was very quick to mention that there are many programs out there to help with the cost, including one sponsored by the pharmacy, so he's already submitted the paperwork for me.And he encouraged me to get in touch with the social worker @ the cancer center to help me maneuver the process.
Talk about adding insult to injury!!
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06-08-2009, 05:32 PM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Ask at your clinic if there is a pharmaceutical nurse advocate... the one at my clinic was a lifesaver when I was told the same thing by my pharmacy. GSK and Roche both have very helpful and very efficient assistance programs. We got mine applied for and approved in no time!
__________________
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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06-08-2009, 06:28 PM
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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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(cough, cough)
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06-11-2009, 06:41 AM
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#5
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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This is awful. Have you had any luck yet with the assistance programs?
Is this charge due to the fact that these are not IV chemo?
I am so sorry that you must go through this sh#t in addition to everything else.
Carolyn
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06-11-2009, 08:09 AM
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#6
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Senior Member
Join Date: Nov 2007
Posts: 210
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oral meds are for convenience of usage for the patient. the drug companies can price the oral meds on a similar cost basis to IV meds and justify they are saving the patient time, travel, lost work etc.
its all about what costs the market is willing to bear.. if you had to go the MD to be infused.. everyone knows this takes half to all-day.. a lost day of work, childcare, etc.. but taking your meds at home allows you to maintain you "quality of life" at this stage of your life.
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06-11-2009, 09:20 AM
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#7
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Senior Member
Join Date: Dec 2006
Posts: 415
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Thanks to Joe & everyone's guidance re:assitance programs to help pay for these meds. Even the pharmacist at the compounding pharmacy started an application for me through CVS/Caremark (?). Also, the social worker at the hospital has sent me the appropriate forms.
So, while we wait for approval, I paid, out of pocket, for a 1 week supply of Tykerb/Xeloda - ~$1400! Hopefully I'll get reimbursed for some/all of this amount and then the Rx assistance will kick in too.
From what I understand, PO drugs (by mouth) are covered under a different part of the insurance policy, so I have to meet a deductible for this service before my additional coverage kicks in. And, Tykerb is such a new drug - still very pricey.
I started my first dose of Tykerb last night at bed time, then my 1st dose of Xeloda this morning. It was a strange, strange feeling - taking those pills - especially the Xeloda. I felt myself get scared & kind of teary...strange. I still feel weird about leaving Herceptin & in the back of my mind, I imagine going back to it at some point...that's strange too!
Again, thanks to everyone here for the helpful hints. And here's to knocking the Monster out cold for a long, long, looonng time.
Keep the Faith~
Jessica
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06-13-2009, 08:28 PM
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#8
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Think of Tykerb, with additional HER receptor blocking, as Herceptin plus. Down the hatch! Was there a reason given for leaving Herceptin out? Err..besides cost. Right now H & T are 2 of a handful of agents noted to kill cancer stem cells. Considering there is suggested benefit of continuing H after progression, seems like a couple rationales a doc could use to justify keeping H in the mix.
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06-14-2009, 10:07 PM
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#9
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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I left Herceptin to take Tykerb/Xeloda for 18 months when we discovered my brain mets. I had fantastic response on T/X. Then, last Sept when a few of my brain mets woke up, we switched me to Tykerb/Herceptin. And I have done well on it, too. You can always go back to Herceptin in another combination... don't worry too much about that.
__________________
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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