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09-18-2013, 12:13 PM
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#1
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Member
Join Date: Sep 2013
Posts: 5
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Re: Calling all stage iv sisters
No replies? No encouragement?
I am so encouraged to see that there are a few sisters alive some years after brain mets. Any with multiple lesions?
I see some are alive due to husbands/ partners aggressive work getting them the best tx. I am single. Any advice on getting advocacy for me as a single mom, for not standard tx, but the best tx?
Thx
Janice
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09-18-2013, 02:03 PM
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#2
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Re: Calling all stage iv sisters
PM NEDenise.
So Cal Girl
Steph
Read their posts.
Search on this site for brain mets.
Lots of info here.
Ferret it out.
Sorry my post wasn't helpful to you.
ANDI
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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09-18-2013, 05:40 PM
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#3
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Member
Join Date: Sep 2013
Posts: 5
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Re: Calling all stage iv sisters
Oh, Andi, thanks! No, when I posted my 2nd post, yours hadn't come thru yet, so I hadn't seen any reply to my post yet (I wasn't saying your reply was unhelpful.. it hadn't shown up on my computer yet, so I thought no one replied at all). Thanks so much for your reply! Your story is great! I sure hope I will have similar luck!! Stories like yours give hope!
-Janice, now getting WBR for 8 brain lesions, 2 large.
Triple positive since 12/2010, mets to bone til now, which are now not lighting up, so NED below brain.
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09-18-2013, 05:58 PM
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#4
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Re: Calling all stage iv sisters
Understood, Janice. I am wishing you good luck with your WBR. Has to be scary. But, be brave anyway. That's what courage is all about (you still feel fear, but you do what you must anyway). Learned that over the years.
8 lesions -- so what chemo are you/were you on?? I know Herceptin doesn't cross the BB barrier.
Those I 've mentioned above in previous post have gone your route and are still all here I am elated to say. Cause I happen to love each and every one of them!
Sending you a virtual big hug, Janice! We all need a hug, ya know. It just helps I find...
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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09-18-2013, 06:06 PM
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#5
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Senior Member
Join Date: Oct 2005
Location: LAND OF YES!
w/home in Boca Raton, Florida
Orig from L.I., N.Y.
Ever hovering IN THE NOW...
Posts: 1,904
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Re: Calling all stage iv sisters
Was searching for you and BB barrier and found this thread... 'lizbeth always is savvy in general and has much to offer re this particular topic I see. Sharing...
The Blood-Brain Barrier and Neuroinflammation - Dr. Datis Kharrazian - HER2 Support Group Forums
Knowledge is power!
__________________
Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...
'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...
Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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09-19-2013, 04:15 PM
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#6
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Member
Join Date: Sep 2013
Posts: 5
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Re: Calling all stage iv sisters
Thanks Andi, I'll look at that thread now.
Dx at Stage 4. Started with Herceptin and Xgeva. I was on paclitaxel for year (began with Taxol, switched to Abraxane, those are 2 different forms of the same chemo, which is paclitaxel). Good response. Then switched from paclitaxel (for a break, getting neuropathy) to Faslodex (1st hormonal tx), continuing all along with the Herceptin for Her2 and Xgeva for the bone mets. Mets improved, but primary was growing, tested pos for BRCA2, convinced them to let me have a bilateral mx June. NED from neck down... but brain mets! Now 10 days of WBR. Tomorrow I'm supposed to start Kadcyla. Nervous... i've been lucky so far to tolerate txs well.... will this one make me sick?
-janice
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09-19-2013, 04:37 PM
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#7
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Senior Member
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
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Re: Calling all stage iv sisters
Hi Janice,
I also suggest that you start a new "thread" and ask your questions there. I think your post has gotten buried in this one, it has been around for awhile.
My cancer has not recurred, so I'm not a stage IV'er, and I can't help with anything you might be going through. I can tell you that there are many women here who can. Additionally, those like me will also be there on the sidelines to act as your cheerleaders and support in whatever comes your way.
You are welcome here, although I think you'll understand that we all wish you didn't have to be here.
All my best,
Alice
__________________
9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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