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Old 11-10-2016, 06:27 PM   #1
Hadit
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Triple Positive

Hi there, I'm new here and would really like to find other triple positive bc patients. I just finished Herceptin and would like to know of others who finished treatment and their stories. I was dx last year (2015) so would like to know how others are doing. thanks. This really means a lot to me as I have so many questions and feel like a ticking time bomb of this coming back .
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Old 11-11-2016, 03:40 AM   #2
Juls
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Re: Triple Positive

When I was diagnosed triple + The Oncologist and Nurse told me I was lucky! I was treatable but not curable! Plenty of treatments available for triple+
Didn't feel that lucky!!
Nearly 4 years later doing well.
You have found a great site here- ask all your questions & I am sure you will get helpful info and advice.

Julie
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Old 11-11-2016, 06:24 AM   #3
caya
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Re: Triple Positive

I am triple+ and am now 10 years out!

I did 2.5 years of Tamoxifen, the 2.5 years of Femara, along with chemo and Herceptin. I was pre-menopausal at diagnosis, but then blood work confirmed I had gone into menopause so I did the Femara.

Some studies have now shown that 10 years of anti-hormonals may be beneficial, but for me, my oncologist felt that the risks of taking 5 more years of Femara outweighed the possible benefits, due to other medical conditions.

There are so many treatment options available for triple+s now, confer with your doctors for the best regime for you.

Good luck, I look forward to seeing you join the 10 year out club (and beyond)!

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
14 Years NED!!
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Old 11-11-2016, 08:16 AM   #4
Hadit
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Re: Triple Positive

Caya, thanks for responding. 10 years out! Congrats! I"m 55 and was premenopausal when dx at 54. I did chemo 1st then lumpectomy then radiation then completed Herceptin last month. On Arimidex for 5 years or more.
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Old 11-11-2016, 01:29 PM   #5
tricia keegan
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Re: Triple Positive

Hi, I was dx in 2005 and was one of the first to receive Herceptin here in Ireland which had just been approved for early stage bc. I sometimes wonder where the last eleven years have gone to and remember being just as scared as you are now. I think we always need to remain diligent but you do get more confidence the longer out you are, good luck.
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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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Old 11-11-2016, 02:52 PM   #6
Hadit
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Re: Triple Positive

thanks for your success story. This is exactly what I needed to hear. I'm still new to this whole bc "club" and so far the initiation has been dreadful. I need to know there's hope. It worries me because my onc dr wants me to keep my port in for 2 more years and that gives me great concern.
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Old 11-12-2016, 01:21 PM   #7
tricia keegan
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Re: Triple Positive

Hadit, some Onc's like their patients to hold on to their port while others don't, don't read more into this as it's just a personal preference for that Onc. I think all the people I've met here that were her2+ and early stage and had herceptin are all still doing well. We had a post a while back about it where so many of us posted that we were still NED, thats got to be encouraging so just take each day at a time, thats what I've been doing for eleven years and will continue to do. There have been some scares of course, but don't allow the cancer or fear of it to overwhelm you, otherwise it's won, and this is one battle you are going to win so hang in there and remain positive.
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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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Old 11-13-2016, 07:27 AM   #8
Hadit
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Re: Triple Positive

thanks, I"m just trying to learn as much as I can about my dx. The more I learn the more I can put my mind at ease. I'm gonna beat this by staying calm and being more aware so I"m not blindsided. That's what really gets to me. Being blindsided.
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Old 11-14-2016, 09:04 AM   #9
Carol Ann
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Re: Triple Positive

Hadit,

I couldn't agree with you more about the being blindsided ... see my signature. I went through months of it, one thing after one another. I was told I was fine. Then I wasn't. I didn't have cancer. Then I did. Then the other breast was fine. Ooops, no it isn't fine. I didn't need chemo. Then oh, wait, you do need chemo. And Herceptin.

Maddening. It was a roller coaster I never want to be on ever again.

Can it come back? Yes. I take my Arimidex every day and hope for the best. That's all I can do. There are no guarantees in life, least of all with cancer.

Wishing you the best, and so glad for all the triple positive ladies out there who have survived many years and post to remind us 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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Old 11-14-2016, 11:28 AM   #10
Hadit
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Re: Triple Positive

thanks, my Her2 came back equivacle and was told I would need lumpectomy and radiation. Then my Her2 came back positive and it was chemo 1st.
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Old 11-14-2016, 01:34 PM   #11
Carol Ann
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Re: Triple Positive

Hadit, the tumor in my right breast was HER2 equivocal ... and like you I was told I didn't need chemo, etc. In the end it didn't matter because then the triple positive HER2+++ was found in my left breast. I like to think the Herceptin actually worked to prevent BOTH tumors' stray cells from setting up shop and coming back someday. Equivocal still isn't the same as negative. It just means, in the end, there aren't enough HER2 receptors to qualify for Herceptin. So maybe this is better protection for you in the long run.

Not that chemo doesn't totally suck. It sure as heck does!

I had a double mastectomy and all my nodes were clear, so I didn't have to have radiation. I am hedging my bets with that, too. Once you have radiation ... you can't have it again. I figured this way, if I ever have a local recurrence (totally different than metastasis to distant organs, the risk for this is approximately the same whether you choose lumpectomy or mastectomy, there are stats that say lumpectomy is actually a bit better) I could still have the radiation if I needed it.

Each of us has to decide what is best for us. I chose not to have any reconstruction, either. I totally and completely support every woman in this horrific situation to choose what she feels is best for her. Period.

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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Old 11-14-2016, 02:23 PM   #12
Hadit
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Re: Triple Positive

I just learned that once an area is radiated it can't be done again. I sure hope so. I'm just looking for many others who are triple postive who are ahead of me and hear their stories. I'm still wrestling with whether to keep my port in for 2 more years or not. My onc appt is in 2 weeks and I leanred from 3 other bc patient of my onc dr that he told ea of them to keep their ports in for different lengths of time.
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Old 11-14-2016, 03:19 PM   #13
Carol Ann
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Re: Triple Positive

I would ask him why he gave different time frames/length of time for leaving it in to different patients.

Now I am curious, too.

I had mine removed right after Herceptin and after my shingles breakout. I couldn't believe how much more comfortable I felt, even though I had gotten used to it and it never really bothered me. I had some concerns about taking it out due to my lymphedema, but my onc still said it needed to go, as keeping it in requires occasional flushes to keep it clean so it doesn't get infected.

I know you will do all your research and make the decision that is best for you! Keep us posted!

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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Old 11-14-2016, 07:27 PM   #14
Hadit
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Re: Triple Positive

I think my onc dr gave ea of us different times to keep our ports in due to our dx. This worries me as he suggested that a triple neg lady keep hers in for 2 yrs too. Scary to lump us into the same category. I appreciate you sharing that your dr said it could cause infection as my rad onc dr said same thing and thought 2 years was excessive. I'm so confused as what to do. I have another mammo in March , I may wait until then and see results to decide. thanks for your support!
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Old 11-15-2016, 11:34 AM   #15
jra40
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Re: Triple Positive

I am Triple Positive, 6 years thriving! See my stats under my signature line, welcome warrior woman! Fight on....

Jessica
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11/17/10 - Diagnosed with 4.5cm tumor in right breast, IDC, Stage 2, Nuclear grade 2, ER+ PR+ HER2+
12/13/10 - Lymph node biopsy - negative
12/28/10 - Started neo-adjuvant treatment along with clinical trial with 4 rounds of AC chemo every 3 weeks
3/15/11 - Began weekly Taxol/Herceptin infusions along with 750mg of Tykerb taken by mouth daily
6/28/11 - Finished last cycle of Taxol
7/27/11 - Breast MRI shows tumor has dissolved, remarkable reaction to chemo
8/31/11 - Lumpectomy, Sentinel Node biopsy. Node negative, clear margins, 7mm of cancer left over from chemo.
10/05/11 - Started radiation, 5 days a week for 7 weeks.
11/8/11 - Finished radiation
3/21/12 - Last Herceptin!
3/26/12 - Port removed!
Tamoxifen for 5 years
8/4/15 - Hysterectomy & bilateral salpingo-oophorectomy. Due to large fibroids. No cancer!
8/8/15 - Started Arimidex
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Old 11-15-2016, 02:49 PM   #16
Hadit
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Re: Triple Positive

jra40, boy do I have questions for you. I hope you don't mind. Your situation is VERY similiar to mine. I was dx (2015) at age 54 (premenapausal). I could only complete 5 out of 6 rounds of chemo. Then lumpectomy. Clear margins, no node involvement. Chemo reduced tumor to 4mm at time of lumpectomy. Started radiation but couldn't complete as I ended up in ICU on morphine for 3 days. Recovered then developed telengiactasia (bloody spider veins, Severe)for which I'm getting weeking injections of about 30 shots ea time under right breast. Completed Herceptin last month ( Oct 2016) and started Arimidex in June 2016. Do you experience any muscle and joint pain from Arimidex? Mine has become so severe that I started taking Glucosimine but stopped as it increases insulin levels. I'm finding that there is no long term pain solution to dealing with side effects of Arimidex. My dx was 2.1 cm tumor that also responded well to chemo, so much so , that after 1 st round it shrunk and didn't shrink further after 4 more treatments. Onc dr said I was considered "complete". Do let me know what /if you have pain and what you're doing about it. thanks!!!!!!!!!!!!
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Old 11-17-2016, 03:43 AM   #17
Paula O
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Re: Triple Positive

I was was diagnosed as stage 3a Triple Positive December 2010. I had the "works": first I tried alternative therapy which didn't work, a mastectomy of the left breast. Carboplatin, Taxotare (also 5 rounds instead of 6 due to neuropathy), and Herceptin a yr, 30 rounds of radiation, 5 years of Tamoxen then switched to Femara for a few months then mammogram/biopsy showed Stage 1 Triple Positive Breast Cancer in the right breast: a second primary, not considered a reoccurence although to me this is not a fluke totally unrelated. I had a mastectomy in September (a lumpectomy was also offered as an option but I felt that I would be braced for another reoccurence in that breast since I seem to be an unwilling host for growing these things). How I wish I could figure out how to change whatever needs to be changed so this doesn't start in again elsewhere now I'm plum out of breasts! I just had 2 out of 12 weekly doses of Taxol and every three week Herceptin for a year is ahead. I would have volunteered for a Stage 1 research trial of Kadcyla but it would have had to have been 10 years since last diagnosis to qualify.

I wish you the best!
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Old 11-17-2016, 09:48 AM   #18
Hadit
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Re: Triple Positive

Wow Paula, sorry to hear of your bc coming back, tho not recurrence. This is my fear. How old are you now? I'm 55 and that's way too young to throw in the towel. The more I hear of others who are triple positive let's me be better prepared. What is the Kadcyla trials?
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Old 11-17-2016, 11:11 AM   #19
suzan w
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Re: Triple Positive

Hi! I was aalso dx'd triple positive in 2005. At the time, Her2 was a very dire diagnosis. My first oncologist told me that there was very little I could do. Have a lumpectomy, get radiation, take arimidex. I was very upset and went for a 2nd opinion. That doctor recommended an entirely different scenario, which you can see by looking at my signature. At the time Herceptin had not been approved for early stage bc. My oncologist prescribed it "off-label" because she felt that great things were about to happen with Herceptin and early stage bc. At the time getting chemo was a requirement to be able to get Herceptin. Halfway through my year of Herceptin, the FDA approved its use in early stage breast cancers. That was more than 11 years ago and I am happy to report that I am doing well. I encourage you to stick close to this site if you ever have any questions or concerns, chances are, someone has already asked!! You can search the site by topic and find a wealth of information. I will speak for myself, I think the women and men on this site have done their research, advocated for their health and are very very informed. We live this "dis-ease" every day, very well!!! :-)
__________________
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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Old 11-17-2016, 03:51 PM   #20
Hadit
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Re: Triple Positive

Suzan, you are a warrior! I needed to hear this so badly! I can't believe it was only 11 years ago that you were told your chances for survival were slim. A lot has happened in this short period of time. I am so grateful for those who have come before me with clinical trials. Now I want to know even more about the progress being made on triple positive bc. I see where there is going to be more focus on triple negative and can completely understand why. I will do as you suggest in researching topics, thanks for the tip. Plz stay in touch!!
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