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10-13-2015, 10:57 AM
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#21
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Invited to a talk by Dr Slamon.
Laurie if I'm not mistaken he was referring to chemo with Herceptin and didn't say everyone would be cured but said the rate of no recurrance's stood at around 92% which is far higher than it was, but said they see few late recurrance's.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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10-13-2015, 11:50 AM
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#22
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Invited to a talk by Dr Slamon.
Did his "cured" references have to do with those who are hormone negative. I could see that statement being made in that context. However, being erpr+ as well is a different disease. Did he differentiate?
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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10-13-2015, 12:00 PM
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#23
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: Invited to a talk by Dr Slamon.
I was wondering that, too, Becky thanks for asking!
CA
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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10-13-2015, 05:07 PM
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#24
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Re: Invited to a talk by Dr Slamon.
Thanks for sharing this great news, Tricia!!!
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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10-14-2015, 01:38 AM
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#25
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Invited to a talk by Dr Slamon.
Thanks Suzan, Becky and Carol, while he did make some reference's to hormone pos and neg I really don't recall him saying anything during this particular comment, Margaret was there too so perhaps she can recall that, Margaret??
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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10-14-2015, 09:30 PM
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#26
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Invited to a talk by Dr Slamon.
I, too, am interested in more details of the 3 years on herceptin for stage IV, as I last recall him saying that if there was no active disease after SEVEN years on herceptin he would take a patient off.
And that was great news as it was a shift from the position that a stage IV patient needed to take Herceptin for the rest of her life! Which I had been planning on, since I had two recurrences.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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10-15-2015, 07:57 AM
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#27
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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: Invited to a talk by Dr Slamon.
Yes, Steph, it was my plan to stay on Herceptin for the rest of my life (when I recurred in 1998 a month before the FDA fast tracked H out of clinical trials to make it available to all metastatic bcers). I stayed on for 10 years. Been off since 2008. All good.
I heard talk a while back that we should stay on for 5 yrs. That 5 was as good as 10. But I was most comfortable at 10. 4th stage throughout the liver was a very scary place to be. I was told what I had was INOPERABLE, INCURABLE AND THAT I WOULD BE ON LONG TERM CHEMOTHERAPY FOR THE REST OF MY LIFE.
Well, after 9 mnths of Taxotere, I couldn't take any more. Peri cardial effusion, pleural effusion and more... And with just H I did great.
My first three years on H -- I went WEEKLY! That's how it was done at first. In France they switched to triple the dosage every 3 wks but when my doc told me I said, I'm going to wait a yr, to see if they all live, seriously, and then I'll switch. And they lived. And I switched. And then I lived! Every week for 3 yrs chemo. WOW. My husband came with me to every one.
I did get to meet Dr. Slamon in the early 2000s in Santa Monica at UCLA. I was seeing Dr. Pegram. Slamon was no longer with him in practice, devoting all his time to research. But I heard he was in the building and I announced I AM NOT LEAVING TILL I MEET HIM.
He came into the exam room in 2 minutes. I stood on the step of the exam table (dressed) in short heels and we were practically nose to nose. I threw my arms around him and said the unbelievable words -- THANK YOU FOR MY LIFE. We hugged for a really long time, good and tight. When I looked at his grinning face I realized he was as thrilled to meet me, a SURVIVOR b/c of all his hard work and devotion to getting this to women, we just reveled in the joy. Paul, my hubby, was also on his feet and they shook hands happily, pumping away. I did thank Dr. Pegram too. Slamon said he was a part of the team too. He was a bit shy and was exiting the room, but we all insisted he stay.
Dr. P continued our visit with my it seemed 500 pages of medical history his assistant had thoroughly reviewed prior to our meeting. We talked for a good while and he said at that time there were no answers as to how long to stay on H. You are in uncharted waters he said. And so I was. I just kept following my Inner Voice. I felt great, had STABLE STABLE STABLE CTs ev 3 mnths, then ev 4 mnths CHEST ABD PELVIS and was so so so glad to be alive. My 2nd dghtr got married. Grandkids were popping up. (I'm now up to 5.....!!!!!) Next March Paul and I will be married 50 yrs. Life is so sweet.
Paul and I left feeling we had seen Elvis!
Please see my article in a new thread Pinkie managed to post today. The Sun Sentinel here in Fla has been publishing a LIFE'S VICTORIES series throughout October and today I was honored to have my story and pic appear -- hopefully to touch and inspire many out there facing some pretty scary stuff.
Light and Love, my Sisters... 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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10-15-2015, 08:41 AM
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#28
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Senior Member
Join Date: Dec 2013
Posts: 1,045
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Re: Invited to a talk by Dr Slamon.
Oh Andi I am crying with joy for you reading this. Thank you for posting. That is so wonderful you got to meet him.
I love Dr Slamon! Just thinking about all the struggles he went through to develop Herceptin brings tears to my eyes all over again.
Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.
Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".
Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.
Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.
Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.
Nov 25, 2013 Begin 6 rounds TCH.
March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!
March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.
March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)
April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm
May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)
June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia
Nov 17, 2014 FINAL Herceptin!
Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.
Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.
Dec 17, 2014 Port is OUT!
January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
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10-15-2015, 08:49 AM
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#29
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Senior Member
Join Date: Mar 2014
Location: UK
Posts: 563
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Re: Invited to a talk by Dr Slamon.
Same as Carol Ann!!
Andi - As usual a great post!!
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10-15-2015, 10:26 AM
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#30
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Re: Invited to a talk by Dr Slamon.
Andi and Steph, he definately said anyone stage iv with no progression for three years he would normally try to talk them into stopping the herceptin but monitor closely, he said this was hard work for him as most women who have been stage iv and are NED for three years would be very reluctant to stop.
Andi, I'm just going to check out your post now! 
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
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10-15-2015, 10:39 AM
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#31
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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: Invited to a talk by Dr Slamon.
Back in the day he said 5 yrs is as good as 10. Nowadays he's saying 3 yrs. I am very cautious. Overly so. I felt good, it's the "easy" chemo (lol) and doable and I loved STABLE STABLE STABLE.
Remember I had the mindset that I would be on longterm chemotherapy for the rest of my life -- bleak!!! The stats were even drabber. So I tossed them aside and decided I would be in the 15% that survived. SOMEONE HAD TO BE IN THAT GROUP? Why not me?
I meditated, did mantras, took my supplements, prayed, lived with Love, Joy, Compassion, Gratitude, Kindness, Generosity -- and that all comes right back at you!!! Karma is for real.
The Life Channel movie about Herceptin and Slamon -- I cried. Loved the story. Lived the story.
__________________
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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10-15-2015, 02:07 PM
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#32
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Senior Member
Join Date: Oct 2012
Posts: 645
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Re: Invited to a talk by Dr Slamon.
Aw Andi - you are most definitely awe-inspiring. I remember when you went off of Herceptin (I was lurking after 1st BC with no Herceptin for early stage). "Vitamin H" you called it.
So happy for you that everything is joyful! You spread joy within this group.
Janis
__________________
March, 2000: 48, Post menopausal (5 yrs HRT) Left breast, IDC 3mm/DCIS 1.6cm, ER+/PR-/Her2+++, mod differentiated, MIB low, lumpectomy, node neg via SNB, rads=33 Stage 1a
June, 2000: Tamox 4.5 years,Femara for 5 years (end in Jan. 2010)
Sept, 2012: 61, Via mamm, ultrasound, biopsy, right breast, 2.3cm tumor, ER+/PR-/Her2+++, poorly diff, KI67 60-70%
BRCA 1 and 2 negative
October, 2012: Bi Mast with tissue expanders, port placement
Final Path: IDC 2.8cm, DCIS, 1/4 sentinal nodes positive (@#$%). Stage IIB
Nov 29, 2012: Begin TCH/6x/every 3 wks, H for 1 year/every 3 weeks.
March 14, 2013: Finished chemo
April 9, 2013: Begin radiation 28x
May 22, 2013: Finished rads
June 1st, 2013: Started Aromasin for 5 yrs.
July 15, 2013: Switched to Letrozole (Femara). Probably for the rest of my life
October 16, 2013: Exchange surgery
October 31, 2013: Finished Herceptin
December 5, 2013: Port removed
Glad this year is over!
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10-15-2015, 04:45 PM
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#33
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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: Invited to a talk by Dr Slamon.
Awww Janis. Jaykay. Of course. Many may not know me but I used to hang out here every day. You can find my threads if you do a SEARCH. Andrea Barnett Budin.
May my words go out to remind the senior members and to awaken the newbies. If one person can do it -- so can you!
Love and Light always my Sisters,
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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10-15-2015, 09:58 PM
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#34
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Invited to a talk by Dr Slamon.
I can think of three of our members here who stopped Herceptin after 4 or 5 years and had recurrence. The first was Jackie from down under who stopped at 4 years, and she never got back to NED, may she rest in peace.
I would still be "overly cautious", even though we have Perjeta and others to work with vitamin H.
__________________
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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10-16-2015, 05:50 AM
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#35
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Senior Member
Join Date: Oct 2005
Location: Lakeville, Minnesota
Posts: 199
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Re: Invited to a talk by Dr Slamon.
I stopped after 4 years Ned because the side effects were just getting too much. It has only been 9 months since I stopped, but so far I'm doing ok. I have my next scan in Nov.
__________________
diagnosed stage 2- 3/2005
4.5 cm & 2+ nodes , er/pr- & HER2+
4 AC
12 taxol/Herceptin
Year of Herceptin
liver mets- July-2010
7 taxotere/Herceptin
RFA- Feb.2011
NED
U of Wa vaccine trial-oct 2011-Feb 2012
Herceptin/tykerb
Ned - 2 1/2 years
Herceptin & perjeta
Ned 3 years
Herceptin- reducing treatments , due to s/e, to 5-6 a year
NED- 3 1/2 years
Ned - 4 years
2/15- stopped herceptin - on no treatment
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10-16-2015, 01:47 PM
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#36
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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: Invited to a talk by Dr Slamon.
I am aware of what Steph just mentioned, which kept me to stick with the program. The side effects from H were nothing for me compared to Taxotere. And I still feel side effects from T and from the 21 lymph nodes removed from my arm to this day (17 yrs later).
I recall someone going off Vitamin H and then reducing the dosage and/or the frequency of receiving it. Some I think had saline added to H to reduce their side effects.
Think about how to make it work for you.
Still glad I did 10 yrs of H even though my onc wanted me to stop at 5. I've been off H since '08. Still stable, with some scary CTs in 2013 and this past June but -- BENIGN... Humbly grateful.
I keep talking to my body. And the Universe. HEALTHY AND WELL. NO MORE CANCER. Every day. And -- I look up about 6 x a day and say THANK YOU.
__________________
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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10-19-2015, 06:54 AM
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#37
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Member
Join Date: Aug 2015
Posts: 16
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Re: Invited to a talk by Dr Slamon.
This sounds hopeful.
My Aunty is triple positive and I have been getting a little freaked out reading information online, but this gives me hope.
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10-19-2015, 08:24 AM
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#38
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Senior Member
Join Date: Feb 2006
Posts: 437
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Re: Invited to a talk by Dr Slamon.
Ladies, all so good to see you.
Tricia , thank you for the meeting with dr s.
I was dxed in may 2005 with stage iiic bc, terrible prognosticators, and after my last surgery back then , no clear surgical margins. I remember they had to pry the newsweek magazine out of my hand while being wheeled into surgery. The front page article highlighted herceptin as a breakthrough. I just prayed i would be able to receive it.
I stayed on it for 6 years, while no mets detected, my docs thought i was too high risk to go off. ( was living outside of the u.s)
i am well and thankful every day.
Andy, i have followed you and think you are just fabulous.
__________________
Linda
Dxed Stage IIIC May 05, 12 pos nodes
er/pr -neg,Her -pos
LVI
Right partial mast & partial axillary dissection-June14,2005
Right modified mast-no clear margins- June 30, 2005
DD AC x4
Taxotere X4 with Herceptin
Rads x 35( 5 fields )
Left prophylactive mast( atypia & hyperplasia found ),
put on Tamoxifen x 1 yr; D/ced due to endometrial thickening
bilateral recon (saline implants)May 06
Nipple recon July 06
metformin 2010
removal of implants due to severe encapsulation, insertion of gummies 2013
Reclast Q yr
NED!!!
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10-19-2015, 10:29 AM
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#39
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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: Invited to a talk by Dr Slamon.
My take is -- forget the stats. You are not a statistic. Some survive. Be determined to be in that little group! That's what I did. I KNEW not to focus on the lousy odds. Instead, I meditated and open myself to Universal Love (I know sounds sappy but it is everywhere and if your mind and heart are open you can easily tap into it.)
Envision yourself far into the future. My vision was to see my new grandchild grow to be 13 and be Bat Mitzvah. I saw myself standing and clapping to music at a round table, surrounded by loved ones. I looked fabulous (why not, it's your dream). I was glowing as I suspected such a moment would engender. I lived with joy and serenity KNOWING my desired goal of survival ALREADY EXISTED and I was focused on calling it to me. With mantras. With images. With and abundance of Love and Gratitude, compassion, kindness, generosity, caring. KARMA. It's for real. It will return to you tenfold.
Of course I remember you, Linda -- IKC Gumby. That signature name always intrigued me and I enjoyed your posts.
Hug pp. A lot. Long and warmly. Exchange positive energy with them. Even strangers. The more you do for the others the happier you feel. Gratified. On purpose. We are all here to help one another.
BTW -- I lived my dream. My granddaughter was Bat Mitzvah and is now 18 year old! And off to college. On a full scholarship. I lived to see my 2nd grandchild Bar Mitzvah. I lived to see 5 grandchildren come into this world!
You know my story from my signature. And my article in the newspaper the other day that Pinkie posted on this site. May it inspire you. If one person can survive -- so can 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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10-19-2015, 10:31 AM
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#40
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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: Invited to a talk by Dr Slamon.
Thanks Pinkie. I used to be able to set my colors in an email and copy and paste. This is an annoying process but -- it works.
My cut little cartoon figure holding a bunch of hearts on strings failed to make the trip from email to post...  (((
__________________
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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