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09-16-2013, 07:40 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
Introducing myself.
Single mom of two, ages 14 and 10.
Dx de novo stage 4 12/2010. Er+/Pr+/Her2+. Responded well to tx for 2.5 yrs.
Aug PET showed NED (yay!) but... something "suspicious" on brain. MRI showed 8 enhancing lesions, 2 large (apparently, 40% ish of Her2+ get brain mets! Herceptin doesn't penetrate BBB.) My brain mets were asymptomatic, which considering the volume, I think is unusual.
Now getting Whole Brain Radiation. If mets shrink enuf, will get Stereotactic Radiosurgery to what remains.
Will start Kadcyla on Fri. I am trying to get Perjeta, too.
Want desperately to live a long time for my kids, who really need me.
Was glad to see on here that there are some who live a while after brain mets, as the stats are so terrible. Want to hear encouragement!
-Janice
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09-18-2013, 11:50 AM
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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
It's my belief that reading statistics is detrimental to your health. People who take those stats and process it, end up becoming one of those awful statistics.
There is at least one person who has survived what you have. If they can do it, so can you.
My prognosis was grim, invasive lobular 4th stage bc and then 3 yrs later, as Herceptin was fast-tracked by the FDA -- clinical trials are such a long and tortured process, abandoning people who could benefit to hold on if they can -- I found that I was 80% HER2+. That's how they categorized such people in '98. When the bc spread throughout my liver, my stats fell even lower. I might live out the yr.
I determined to be among the tiny group that survived. Please read my threads, especially the latest A SIMPLE FORMULA FOR CHANGING THE FUTURE.
You want encouragement, Janice? I am here for that very reason! Any time...
With love,
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, 12:13 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
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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#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
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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#5
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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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#6
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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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#7
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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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#8
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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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