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10-08-2015, 02:56 PM
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#1
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Senior Member
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
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Invited to a talk by Dr Slamon.
I was one of the first people to benefit from Herceptin here as it was approved for early stage BC the week before my dx in 2005. As Herceptin is now ten years out for early stage Dr Slamon is giving a talk and F&Q tomorrow evening in Dublin (Ireland) and I'm really looking forward to it and really believe many of us wouldn't be here still without this drug 
__________________
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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10-08-2015, 04:39 PM
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#2
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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.
That is exciting! I agree with you, many of us would not be here if not for Dr Slamon and Herceptin!
Can't wait to hear your report, I want to hear all about it!
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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10-08-2015, 06:31 PM
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#3
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Invited to a talk by Dr Slamon.
Hey Tricia,
I met Dr. Slamon a few years ago here in Toronto, at the Princess Margaret Hospital, after he gave a talk on Herceptin. I had my picture taken with him, and he was so supportive of all of us there.
Enjoy your evening with him, I agree, if it weren't for Dr. Slamon, who knows all of us Her2ers would be doing?
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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10-08-2015, 09:39 PM
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#4
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Re: Invited to a talk by Dr Slamon.
Most certainly so many of us owe Dr. Slamon our gratitude. I was dx. around the same time as you Tricia.
Here in the states early stage dx. women were not given herceptin. You had to take it off label. I flew out to California to consult with Dr. Slamon. He was so wonderful, patient and most of all so caring. It was such a frustrating time in my life. As the dr. in New York would not even consider treatment with herceptin/chemo being an early stage dx. her2 even though I was triple positive. At that time the oncotype DX test was also new and not even covered under insurance. Most onc. and dr. at that time back then would not order the test. I had insisted on the test being ordered and I ended up having to have the slides sent from the hospital myself out to Calif. The test results came back with high score for recurrence. Now ten years later just the other day I saw the test mentioned on TV as a way to determine if a woman should have chemo. I thank God each day for Dr. Slamon who agreed with me and said, 'Yes you should have herceptin treatment" we have come far but still have so far to go. Dr. Slamon's position was all women who are dx. with HER2 should have herceptin.
That was very forward thinking back in 05.
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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10-08-2015, 10:21 PM
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#5
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Senior Member
Join Date: May 2014
Location: San Diego
Posts: 411
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Re: Invited to a talk by Dr Slamon.
I agree that we have Dr Slamon to thank for saving our lives and finding a drug to fight this aggressive cancer. I'm sure he has saved thousands of us already. What a huge impact he has made. I too thank him daily.
__________________
8/2013 Diagnosed IDC Left Breast ER-/PR-/HER2+ Stage 3C, DCIS ER+/PR+/HER2- Right Breast (54 yr)
8/2013 PET/CT scan shows mass in uterues and suprclavicular nodes
8/20/13 Begin 6 rounds TCH chemo, Perjeta added for rounds 4-6
9/2013 After 1st round of chemo, mass in neck and breast no longer able to feel
11/2013 Hysterectomy, mass from PET/CT scan not cancer (adenomylosis)
12/2013 Finished chemo
1/2014 Double mastectomy with chest expanders
1/2014 Pathology report from surgery and SNB show complete pathological response!
3/2014 Finish IMRT radiation
8/2014 Fat transfer to radiated breast
8/2014 Completed 1 yr of Herceptin
10/2014 exchange surgery expanders removed implants placed
6/2015 3D nipple and areola tattoos
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10-09-2015, 12:04 AM
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#6
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Senior Member
Join Date: Dec 2006
Location: Oregon
Posts: 715
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Re: Invited to a talk by Dr Slamon.
Tricia, how wonderful that you get to see Dr Slamon. May you have a one on one before or after his presentation. I know you will thank him for all of us. I still remember my oncologist saying something like, "fortunately we have a new treatment for your Her2." That was 2006. I too am so thankful to Dr. Slamon and those who worked with him. Can't wait to hear your report.
Hugs, Catherine
__________________
Catherine
Found my own lump in the shower
April 2006 at the age of 58
Stage IIB, ER- PR- HER2+++ multi focal tumors, largest 2.3cm
Chemo first: AC/Taxol over 16 weeks
Bilateral mastectomy Sep 06
33 rads after the surgery
1 year of Herceptin completed Dec 07
15 years and no recurrence as of April 2021
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10-09-2015, 01:12 AM
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#7
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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 everyone, I'm sure there'll be many people there but it would be wonderful to get to meet him and shake his hand and thank him from all of us
__________________
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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10-10-2015, 04:33 PM
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#8
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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.
I, too, had the benefit of Herceptin for early stage BC...before it was approved. Jean, you were dx'd in April, 2005, I was dx'd in May, surgery in June, 2005, and Tricia in July, 2005. A year to remember!!! I also had to pay for the Oncotype test...and Herceptin as my insurance company deemed it "experimental". I am broke, but alive!!!!!You are lucky Tricia to be able to see him!
__________________
 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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10-10-2015, 05:55 PM
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#9
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Invited to a talk by Dr Slamon.
Tricia,
Enjoy the talk (it should be wonderful) and get a pic with the doc. I was diagnosed in May, 2005 and was blessed to find a doctor (one of two I consulted with) who felt that I should have Herceptin and would get it........despite my early stage diagnosis. I will always be happy that I got at least two opinions and finding a doctor who was a good problem solver and thought "outside the box". As Jean knows, it was not common "back in the day" to find such a doctor.
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10-11-2015, 02:11 PM
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#10
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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.
Thank you Karen, Suzan and everyone else, it was a great presentation by Dr Slamon and I enjoyed it a lot and although I didn't get a pic with him I was delighted to hear him say the C word...aka cured!
__________________
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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10-11-2015, 02:18 PM
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#11
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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.
In what context did he use the word "cured"?! Please fill in the details!!
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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10-11-2015, 02:51 PM
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#12
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Invited to a talk by Dr Slamon.
OK, the selfie was NOT important !!!!!
Glad you had a great time and heard good news as well as the continued shaping of the story and journey for HER 2 + folks.
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10-11-2015, 03:20 PM
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#13
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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.
Carol and Karen, he said in early stage they see very few late reaccurances, so if you're okay by year three the chances are you'll be okay and he believes early stage ladies who do not recurr by year three may well be cured of their disease.
Going on to the stage iv ladies, he said if someone is on Herceptin for three years with no progression he'd suggest stopping the Herceptin with close checking every few months. If a person goes three years as stage iv with no progression he'd stop herception and just monitor and he has lots of ladies he feels "cured" at stage iv of disease when they reach this stage.
__________________
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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10-11-2015, 03:54 PM
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#14
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Invited to a talk by Dr Slamon.
This is well beyond "good news". This is life changing news and will be very welcome to folks on the site. Thank you so much for posting !!!
Karen
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10-11-2015, 04:14 PM
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#15
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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.
Hi Tricia
Thanks for posting this great news!!!
A C word we would all be happy to use!!!
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10-12-2015, 11:19 AM
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#16
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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.
Agreed Juls, and he said the ten year data has given them new stats so he feels confident in saying the future is looking very bright and promising for her2+ patients and survivors.
__________________
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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10-12-2015, 11:27 AM
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#17
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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.
Wow that is great!! Thanks for sharing this info.
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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10-12-2015, 04:35 PM
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#18
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Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
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Re: Invited to a talk by Dr Slamon.
Thanks, Tricia, for the great news. Lucky you to hear Dr. Slamon! I love the C-word (cure) being bandied about! Shots of hope all around!!!!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
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10-12-2015, 06:30 PM
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#19
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Junior Member
Join Date: Jan 2013
Location: Ireland
Posts: 2
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Re: Invited to a talk by Dr Slamon.
Yes I was also there to hear that good news on Friday night .
I has meet Dr Slamon , and have been to many of his talks here in
Ireland , Every time its more promising for us Her2 girls , l myself was on the beth study , ��
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10-12-2015, 06:45 PM
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#20
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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.
Was he talking about women who had herceptin and perjeta in early stage when he was talking about being cured after 3 years?
If hewas just talking about chemo w/ herceptin, I recurred after 3 years and have seen many other women who have developed mets more than 3 years out.
__________________
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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