HER2 Support Group Forums - View Single Post - From Leslie: Hi Everyone, I have brain mets and need your support

Jackie07 · 11-11-2010, 02:51 AM

I'm guessing it is Leslie 304:

Leslie
__________________
2009
3-15 Age 48 -found lump
Dx 4/15/09: IBC Stage III w/extensive lymph node involvement HER2+++
5/1/09: Adria/Cytoxan for x 3-no response
6/12/09: Taxol/Herceptin for 1 tx -no response
6/24/09: added Carboplatin to T/H x 3 - no response
7/09 -added F5U -no response
7/29/09: Herceptin/Xeloda/Tykerb no response
8-18-09: 2nd opinion at MDA - IDC not IBC! First Onc disagrees,
BRCA 1/2 Neg
8-19-09: continue on Herceptin/Xeloda/Tykerb-slight response
9-24-09 MRM right breast 10x10 cm tumor! (Huge!) no necrosis - Got clear margins! A miracle!
13 of 18 nodes positive
11-2-09 - started radiation
11-11-09 - Tumor markers normal! Radiation continues.......
12-10-2009 - Finished with radiation!!
2010
1/13/2010-Back on Xeloda x six cycles (have been on Tykerb/Herceptin all along)
4/4/14 - stopped Xeloda/Tykerb one cycle early. Liver enzymes high!
4/20/2010 Clear PET Scan!! NED
6/10/2010 - Finished Herceptin...flying without a parachute!
11/8 - Brain METS! CRAP! WBRT, chemo again. Then what?

Leslie,

There are other options besides/after WBRT. I'm seeing a radiation oncologist on the 23rd to discuss radiosurgery (the hospital just purchased a Novalis Tx in June) One of the two enlarged tumors (Central Neurocytoma - unrelated to BC)has the potential to block the cerebral spinal fluid to the third ventricle.

Check out 'stereotactic radiosurgery - LINAC' and ask your doctor if it's an option for you. Seems Christine (the Founder of this website) has had whole brain radiation. And she's been doing well for the past 10 years.

Take it easy - know that we are rooting for you. Sending prayers from Central Texas.

11-11-2010, 02:51 AM	#3
Jackie07 Senior Member Join Date: Jan 2008 Location: "Love never fails." Posts: 5,808	Re: From Leslie: Hi Everyone, I have brain mets and need your support I'm guessing it is Leslie 304: Leslie __________________ 2009 3-15 Age 48 -found lump Dx 4/15/09: IBC Stage III w/extensive lymph node involvement HER2+++ 5/1/09: Adria/Cytoxan for x 3-no response 6/12/09: Taxol/Herceptin for 1 tx -no response 6/24/09: added Carboplatin to T/H x 3 - no response 7/09 -added F5U -no response 7/29/09: Herceptin/Xeloda/Tykerb no response 8-18-09: 2nd opinion at MDA - IDC not IBC! First Onc disagrees, BRCA 1/2 Neg 8-19-09: continue on Herceptin/Xeloda/Tykerb-slight response 9-24-09 MRM right breast 10x10 cm tumor! (Huge!) no necrosis - Got clear margins! A miracle! 13 of 18 nodes positive 11-2-09 - started radiation 11-11-09 - Tumor markers normal! Radiation continues....... 12-10-2009 - Finished with radiation!! 2010 1/13/2010-Back on Xeloda x six cycles (have been on Tykerb/Herceptin all along) 4/4/14 - stopped Xeloda/Tykerb one cycle early. Liver enzymes high! 4/20/2010 Clear PET Scan!! NED 6/10/2010 - Finished Herceptin...flying without a parachute! 11/8 - Brain METS! CRAP! WBRT, chemo again. Then what? Leslie, There are other options besides/after WBRT. I'm seeing a radiation oncologist on the 23rd to discuss radiosurgery (the hospital just purchased a Novalis Tx in June) One of the two enlarged tumors (Central Neurocytoma - unrelated to BC)has the potential to block the cerebral spinal fluid to the third ventricle. Check out 'stereotactic radiosurgery - LINAC' and ask your doctor if it's an option for you. Seems Christine (the Founder of this website) has had whole brain radiation. And she's been doing well for the past 10 years. Take it easy - know that we are rooting for you. Sending prayers from Central Texas. __________________ Jackie07 http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2 NICU 4.4 LB Erythema Nodosum 85 Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d 3 Infertility tmts 99 > 3 u. fibroids > Pills CN 3 GKRS 52301 IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET 6 TCH Cellulitis - Lymphedema - compression sleeve & glove H w x 4 MUGA 51 D, J 49 M Diastasis recti Tamoxifen B. scan Irrtbl bowel 1'09 Colonoscopy 313 BRCA1 V1247I hptc hemangioma Vertigo GI - > yogurt hysterectomy/oophorectomy 011410 Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk DEXA 1/13 1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer. 3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer. Start Vitamin D3 and Calcium supplement （600mg x2) 10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016 7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence. 7-10-2019 CT to check lung nodule. 1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule. "I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa Advocacy is a passion .. not a pastime - Joe Last edited by Jackie07; 11-11-2010 at 02:58 AM..