 |
|
08-28-2011, 04:19 PM
|
#21
|
|
Senior Member
Join Date: Oct 2009
Posts: 84
|
Re: Gamma Knife A Success but more brain mets
Hi Courtney - I wish I had an answer for you too! Keep zapping those buggers. I wish I knew where to have Pam go. I don't understand why she is having so much edema and has to be on decadron when some like yourself have had several brain mets zapped and don't need to be on it at all. She is experiencing more side effects and they have had to increase the decadron dose back up to 8 mg/day <sigh> Just makes me feel so bad for her. MEanwhile I wish you all the best and hope someone can figure out why all these keep popping up for you. One thing I note is that Pam is having LINAC SRS and you are having Gamma Knife - wonder if that makes the difference in them popping up??? My best to you as always
Joyce
|
|
|
|
08-29-2011, 07:47 AM
|
#22
|
|
Senior Member
Join Date: Jul 2010
Posts: 42
|
Re: Gamma Knife A Success but more brain mets
Hi Courtney,
I am actully the similar situation as yours. I keeping getting new tumors, even after WBR done last August. I had Gamma knife in Jan this year, zapped 3 tumors; Another Gamma knife last Thursday zapped 12 tumors (all at once).
I am currently on Xeloda & Tykerb; my onc will discuss with me about the drug plan in the following weeks. I am thinking to as for adding Herceptin and C into the regime, but not sure he would agree.
Would love to know your next plan/drug plan.
Love,
Grace
|
|
|
|
|
08-30-2011, 05:03 PM
|
#23
|
|
Senior Member
Join Date: Aug 2008
Location: San Francisco
Posts: 260
|
Re: Gamma Knife A Success but more brain mets
Thank you all SO SO much for the support and suggestions. I've actually seen Dr. Krop at Dana Farber for a consult in the past so I'm going to reach out to him for some advice. I'm setting up an appointment with Dr. Melisko at UCSF and she mentioned to me that they will be starting a Neratinib trial in the next 4-6 months. This HER2 targeted drug, as many of you know, is small and is thought to also cross the BBB like Tykerb. Another option I am considering that Kim (Radiant) mentioned is DCA - a treatment available in Canada. She gave me a site of a holistic doctor in Vancouver who is seeing some patient success on it. EllieF has also mentione Allostim which is available for compassionate use in Thailand. Decisions decisions. At least I know I have options - and that gives me hope. And without hope, there is nothing. I feel blessed, if not a bit overwhelmed, but I know I will continue to be okay. Thank you all for your love and support. I feel that I am not alone in this journey thanks to you all.
__________________
4/17/08: Dx Stage IV at age 30 - extensive mets to liver, lungs, and bones. Er/Pr-, Her2+++
April 08-Aug 08:Taxotere, Cytoxan, Herceptin, Zometa - complete response!
Sept 08-Dec 08: Herceptin +Zometa for maintenance.
Jan 09-April 09: Brain mets. Add Tykerb. Watch and wait.
April 09: Gamma Knife 10 brain mets, add Xeloda.
Sept 09: Gamma Knife to 1 brain met.
Nov 09- April 10: Lung progression, add Gemzar to Herceptin, Zometa.
May 10- Sept 10: HER2 Vaccine Trial
Sept 10: Add Tykerb for more brain mets.
Oct 10: Gamma Knife to 7 brain mets.
Dec 10: Switch from Zometa to Denosumab.
Jan 11: Gamma Knife to 3 brain mets.
March 11: Gemzar/Herceptin for lung/bone progression.
April 11: More brain mets - Intrathecal Herceptin
June 11: Ixempra/Herceptin for lung, soft tissue progression.
Aug 11: Gamma Knife
Sep 11: Abraxane/Herceptin
Future: NED
Send me a PM if you'd like to follow my journey on Caringbridge.
|
|
|
|
|
08-30-2011, 09:41 PM
|
#24
|
|
Senior Member
Join Date: Oct 2005
Posts: 3,519
|
Re: Gamma Knife A Success but more brain mets
Love me a solutions oriented girl! Best of luck in pursuing the next option... I know you will find the best one for you! Keep us in the loop, as we know you will. Love, light and prayers to keep you safe along this path my friend!
__________________
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."
|
|
|
|
|
08-31-2011, 08:44 AM
|
#25
|
|
Senior Member
Join Date: Sep 2009
Location: Kensington, CT
Posts: 394
|
Re: Gamma Knife A Success but more brain mets
Hi Courtney;
Dr. Krop mentioned the Neratinib trial should start in 4 -6 weeks. It might be sooner than you think. Told me that I had to have 1cm of tumor to track to qualify.
Kris....
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found
Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
|
|
|
|
|
08-31-2011, 12:48 PM
|
#26
|
|
Senior Member
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
|
Re: Gamma Knife A Success but more brain mets
Wow, you DO have options to consider. I was just reading about the promising early clinical trials for a cancer-fighting virus. They used it on 23 people who had "run out of options" -- lung, ovarian, colorectal, etc. But not breast cancer. It sounds like BC has a lot of treatments in the pipeline. May the beautiful garden that is your brain become NED. Stage IV CAN beome NED
__________________
MJO
IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
|
|
|
|
|
08-31-2011, 08:30 PM
|
#27
|
|
Senior Member
Join Date: Jul 2011
Location: Melbourne, Australia
Posts: 432
|
Re: Gamma Knife A Success but more brain mets
Hi Courtney - sounds like you have lot of options to consider which is a good thing. Good luck in making a decision.
__________________
Amanda xx
40 year old Mum to three gorgeous kids - son 5 and daughters 8 and 11
Wife to my wonderfully supportive husband of 17 years!
22 February 2011 - Diagnosed Early Breast Cancer IDBC Stage2b (ER/PR -ve, Her2+ve +++) - 38 years old
(L) skin sparing mastectomy with tissue expander, axilla clearance (2/14 affected) clear margins.
Fec*3, Taxotere and herceptin*2 - stopped due to secondary diagnosis
June 24 2011 Stage IV - Skin met, axilla node, multiple lung lesions
Bolero3 trial - Navelbine, Hereptin weekly, daily Everolimus/Placebo
February 2012 - July 2012 Tykerb and Xeloda - skin mets resolved, Lungs initially dramatically reduced but growing again
August 2012 (turn 40!) tykerb and herceptin (denied compassionate use of TDM1) while holidaying in Italy!
September 2012 - January 2013 TDM1 as part of the Th3resa trial - lymph nodes resolved, lungs slowly progressing.
January 2013 - herceptin, carboplatin and Perjeta (compassionate access)
April 2013 - Some progression in lungs and lymph nodes - Abraxane, Herceptin and Perjeta
July 2013 - mixed response - dramatic reduction of most lung disease, progression of smaller lung nodules and cervical and hilar nodes - ? Add avastin.
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 04:29 AM.
|
Linear Mode
