HER2 Support Group Forums - View Single Post - Pertuzumab not avaliable to stage 4 contrary to what you have heard

I think Karen (kDR) is getting pertuzumab via a trial. I don't know your treatment history but if you are having progression on current treatment, maybe you can get on a trial? Sheila will be getting pertuzumab, maybe she will share more info as how to get insurance approve for it. Unfortunately it is approved with such limitations and people who need it most have the minimum access to it. Who hasnt had herceptin if you are her2 positive??? By metastatic I don't know if that includes those with positive lymph nodes or local recurrence to skin such as in my case. I hope something will work out for you.

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1/11 age 36 DX
ER/PR-, Her2 +
TCH*6, Herceptin
BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes
9/11 Radiation
3/12 Local recurrence to skin stage IV
Whole body scan CLEAR
4/12 Tykerb & Xeolda Skin mets slowly regressing
8/12 PET & Brain CT Clear
5/13 Skin mets progressing
6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes
6/13 kadcyla
10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence
11/13 to 02/14 tykerb & herceptin
02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose
05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo
05/14 navelbine perjeta herceptin
07/14 skin mets progressing red rash worse
08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks
09/01/14 resection- clear margins
3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer
Radiation 11/2014 with xeloda then weekly cisplatin
11/14 brain MRI clean
12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week
12/14 t current Herceptin and perjeta only
02/15 rash on upper back right side skin mets radiation planned
02/15 staring electron radiation *35
Stopped at 30 due to severe skin burn, resumed 10 days later
05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska.
05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line
07/15 multiple skin and lung recurrence begin halaven
11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious
11/15 heading to China for immune therapy

07-06-2012, 10:06 PM	#3
yanyan Senior Member Join Date: Apr 2011 Posts: 403	Re: Pertuzumab not avaliable to stage 4 contrary to what you have heard I think Karen (kDR) is getting pertuzumab via a trial. I don't know your treatment history but if you are having progression on current treatment, maybe you can get on a trial? Sheila will be getting pertuzumab, maybe she will share more info as how to get insurance approve for it. Unfortunately it is approved with such limitations and people who need it most have the minimum access to it. Who hasnt had herceptin if you are her2 positive??? By metastatic I don't know if that includes those with positive lymph nodes or local recurrence to skin such as in my case. I hope something will work out for you. __________________ 1/11 age 36 DX ER/PR-, Her2 + TCH6, Herceptin BMX with immediate recontruction 5/2011 Lattismus Flap- Dx stage 3c 10/23 nodes 9/11 Radiation 3/12 Local recurrence to skin stage IV Whole body scan CLEAR 4/12 Tykerb & Xeolda Skin mets slowly regressing 8/12 PET & Brain CT Clear 5/13 Skin mets progressing 6/13 PET scan chestwall recurrence in contralateral anxillary,internal mammary and ipsilateral subpectoral nodes 6/13 kadcyla 10/13 whole body scan -clear NED. previously resolved skin rash gone but 3 new lesions. Biopsy confirmed for skin recurrence 11/13 to 02/14 tykerb & herceptin 02/14 add abraxane/gemzar, 2 weeks on 1 week off at reduced dose 05/14 whole body PET clear/ brain CT clear but skin mets are getting worse, ready for new chemo 05/14 navelbine perjeta herceptin 07/14 skin mets progressing red rash worse 08/14 wide local excision with diep flap to close wound. Final path shows 2 positive margins showing inflammatory carcinoma Going back to surgery in 2 weeks 09/01/14 resection- clear margins 3 weeks after 2nd surgery, a new nodular rash found near drain incision with 2 small red spots behind the chest wall biopsy on 10/1. Positive for breast cancer Radiation 11/2014 with xeloda then weekly cisplatin 11/14 brain MRI clean 12/14 finished 33 radiations burnt and very painful. Bedridden for 1 week 12/14 t current Herceptin and perjeta only 02/15 rash on upper back right side skin mets radiation planned 02/15 staring electron radiation 35 Stopped at 30 due to severe skin burn, resumed 10 days later 05/15 red patches appeared in between previously radiated area, skin mets. Ct and brain Mri clear. Simulation planned, radiation to start after trip to Alaska. 05/24 new spot identified in scar line on previously radiated reconstructed breast- electron on both side chest wall area and scar line 07/15 multiple skin and lung recurrence begin halaven 11/15 cough much better but very tired on halaven and starting to see some new red skin blotches-suspicious 11/15 heading to China for immune therapy