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Old 10-11-2008, 05:07 PM   #1
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Is it possible to get Herceptin w/out doing Chemo?

We have been told that insurance won't pay for it alone and that chemo must be done with it. Any advice or suggestions?
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Old 10-11-2008, 07:46 PM   #2
hutchibk
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Told by whom? Insurance company or doctor? Or hear-say?
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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 10-11-2008, 07:50 PM   #3
grandma2
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i got herceptin alone but i had already finished ac and taxotere....my 1st onc forgot to give me the herceptin and of course my present onc starts it with taxotere. i recently came off another 3 months of herceptin alone but still had progression so we stopped it. but insurance paid each time so i don't know. my primary is medicare if that makes a difference?
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Old 10-12-2008, 02:02 AM   #4
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I don't think I explained my question very well - sorry! My sister will not do chemo (for may different reasons) and wanted to just do herceptin. She had microcalcifications removed from her breast in Dec. (HER2+) and the lymphnodes were clear. Her PET scan was clear. She did radiation. At her check up there were some spots on her lungs but the new PET scan hasn't changed from the last so she was told to just come back again in 3 mths. Her oncologist has no bed side manor and said the insurance companines will not pay for herceptin treatment without doing chemo too. Also, he said herceptin isn't really very effective unless you do it w/chemo. Thank you for any advice - she is only 36.
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Old 10-12-2008, 07:35 AM   #5
hutchibk
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hmmm - I would 1. talk to the insurance/business office person at the doctor's office, and also 2. call your ins company to confirm, and 3. also consider changing oncologists. One thing to know is that it is not unheard of for an unsavory oncologist to "steer" you towards treatments that they make more money from. A cynical view, I know, but I have heard that it does happen. Also, maybe post your question on the main forum here... the general her2 forum.

I found this Q and A on the Breastcancer.org website... doesn't speak to insurance coverage, though.

Study with AI plus Herceptin, no chemo?

Question from Rooster: I'm post-menopausal, hormone-receptor-positive, HER2-positive breast cancer. I want the benefits of hormonal therapy and Herceptin—but I'd really like to avoid chemo. I heard about a study using an aromatase inhibitor along with Herceptin, without the chemo. Tell me more about this?
Answer —Jennifer Griggs, M.D., M.P.H.: It sounds as if the tumor that you've been treated for is responsive both to hormonal therapies and to Herceptin. Most U.S. oncologists have favored chemotherapy in patients whose tumors are HER2-positive. The use of hormonal therapy and Herceptin without chemotherapy is particularly appealing in somebody with an otherwise "lower risk" tumor, for example, small tumor, negative nodes. The benefits of chemotherapy may be small in somebody with a small tumor and negative lymph nodes. Nonetheless, as I said above, most oncologists will recommend chemotherapy in this setting. This is something you'll want to talk about with your doctor in your particular case. At the San Antonio conference, the combination of an aromatase inhibitor and Herceptin was shown to be highly effective in women with advanced, metastatic breast cancer. Most of us who take care of patients have used this combination for quite some time, often with long-lasting results. Studying this combination without chemotherapy in women with early stage disease will be important before it becomes standard practice.
__________________
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 10-17-2008, 11:44 AM   #6
Hopeful
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I received Herceptin without chemotherapy as adjuvant tx for a 1.3 cm 80% ER+ 50% PR+ her2+++ IDC beginning in August, 2006. I was post menopausal at dx (age 52). My oncologist was in private practice, and willing to use this non-standard protocol with me because I would not do chemotherapy. I received one year of every three week infusions and started an AI (hormonal therapy) that is to continue for 5 years. My insurance (HMO) paid for everything. I had qualms about the coverage before we started, but my onc said that we wouldn't get push back from them. Thank goodness, he was right!

Hopeful
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Old 11-12-2008, 07:38 PM   #7
swimangel72
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I was so disappointed when my onc said I needed chemo after my Fish report came back Her2++++........but since I already had a mastectomy and was going on Arimidex, my onc said I could go on a "mild" chemo which wouldn't hurt my heart. He said studies show that Herceptin cuts your risk of recurrence nearly 50% if given with ANY chemo. So he put me on Navelbine every two weeks with Herceptin for 4 months, now I'm just getting Heceptin for the remainder of the year. The Navelbine was very doable - I did need a port because it can burn the veins, but then my port got infected so they had to use my veins anyway. As long as they infused the Navelbine slowly with saline at the same time, my veins were fine. I did experience light hair loss and damage to my finger nails - also a bit of diarhhea for a few hours after infusion - but that's all behind me now. I had 3 different oncologists agree with this treatment plan - but even so - I'm still worried that I'll have a recurrence since most women get Herceptin with Taxol. Still I think no matter what your treatment protocol, we worry about recurrence and always will. Good luck with your treatment decisions!
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xxoo
Kathy
2/5/08 - dx age 53, post-menopausal;
IDC Stage 1, Grade 1
ER+ 90% /PR+ 90% /Her2++++, BRAC1 & 2 neg
3/5/08 - mast with muscle-sparing free tram;
0/7 nodes clear; Stage 1 lymphedema in right arm
3/11/08 - MRSA infection in abdomen causes large hernia
4/11/08 - Oncotype DX score 22 (intermediate)
4/12/08 - Muga score 67%
4/23/08 - Chemo, Navelbine and Herceptin every 2 weeks
8/20/08 - Last Navelbine infusion! Yay!
1/22/09 - First mammo since dx - unaffected breast CLEAR!
1/30/09 - Second Muga score 63%
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Old 11-13-2008, 03:10 PM   #8
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I think she may need to consider the chemo

The spots on her lungs are concerning.

These are verified cancer?

Tammy Lou
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Old 11-15-2008, 08:56 AM   #9
Kathy T
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I received herceptin alone for 5 years with estrogen blockers as stage 4--I am now on Tykerb alone--It works for some
Kathy T
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