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Old 01-16-2009, 10:05 PM   #1
micheleu
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5 year's out from stage 3 Her2 pos 35 pos nodes

I thought i needed to post hear for anyone new to this site. There is so much hope for us! My tumor was only 1 cm and when they did my axillary dissection, they found all 35 nodes positive! I'm er/pr negative. I did A/C then 12 weekly Taxols followed by one year of Herceptin. I begged my onc. for another year of Herceptin and they all said NO. I was so dissappointed but looking back, they were right! I also did a HER2 vaccine trial at Seattle WA at the Tumor Vaccine Group. My dr's told me I was not going to make it. I was 39 with 3 small children. I was forced into thinking about what I was going to wear in my coffin, and I hated that! Now looking back I know i was lucky to be dx when Herceptin was available. I took it in a trial and that was my only hope. I'm a nurse and I knew what my chances were. I just gave up for 2 years. I looked for anything I could do, like the vaccine trial, but I didn't think I would make it. Then after about 2 years, I kept waking up thinking, wow, my cancer has not come back yet. They said it would. Maybe....just maybe it won't! I don't think it really sunk in until the results of the Herceptin trial were coming out. There was ALOT of other women thinking the same thing...that their cancer was going to come back, and it DIDNT! Anyone newly dx reading this, I want you to know, you are NOT alone. You have alot of us on this site that are ALOT of years out with a bad prognosis. YOU CAN be that one like us....5...10 years out NED!!!! Come to this site when down. Come to this site when you need encouragement. Come to this site to see that God has given us another chance!
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Michele Ulmer

Dx.2003 Stage 3b 35 pos nodes

Dx August 2003 Stage 3B with 35/35 nodes IDC age 39
Lumpectomy
A/C x4 Taxol x12
35 radiation tx
1Year Herceptin in trial
HER2 vaccine trial Seattle
3 months Tykerb off label
NED

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Old 01-17-2009, 12:31 PM   #2
Patty F
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Michele
Congratulations on 5 years. You give all of us hope.
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10/15/07: Diagnosed at age 46 lymph node removal (2)
ER/PR - Her2 +++
11/07: Port Installed
11/07 - 1/08: AC
1/30/08: Right Mast Stage lllC
2/28/08: Start Taxol and Herceptin weekly.
5/15/08: Finished Taxol
8/12/08: Finished 33 Rads
1/29/09: Finished Herceptin
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Old 01-17-2009, 06:59 PM   #3
Midwest Alice
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Michele,
Yes, God is great to us every single day. Your story is a blessing to us all.
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Alice
04/08 age 50 III IBC Her2+++ ER/PR-8cm 14/14 Double M, Body and Brain CT/PET clear, ? on spine,Muga 53
06/08, 4 A/C, Neulasta
08/08, Herceptin/tax 12 every week
10/08, CT/PET clear, ? on pelvis, hips, MUGA 43, started Enalaprial for heart, Herceptin every 3 weeks
11/08 33Rads; 12/08 MUGA 48
2/09 MRI spine and bone scan, old mets to spine, Chest x-ray, blood work, IV NED,regular CPAP use,Zometa x6, first -flue like symptoms 2 days;Herceptin x3; stage 2 lymphoedema..sleeve and glove
4/09 Brain MRI - CLEAR; MUGA 54
7/09 chest ultrasound,
10/09 PET, brain and spin MRI NED Herceptin only. MUGA 59!!!
1/11 Hip replacement 7/11 Hip 2 replacement
4/12 4 years!! Herceptin
6/12 start reconstruction finish in 12/12
2/14 Herception - 6 years!!!

1 Corinthians 10:13 "No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you
can stand up under it."

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Old 01-18-2009, 05:15 PM   #4
Laurel
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Thanks for the uplifting post! I am so glad you are well! I'm beginning to belief I will be here for a long time to hassle my kids!
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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
9 Years NED
I think I just might hang around awhile....

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Old 01-18-2009, 06:32 PM   #5
flyrzfan
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Thank you for sharing and congratulations!!!!!
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life is good

dx 3/2008 IDC stg1,grade 3,ER/PR+,HER2+++
blm 4/2008
4xAC, 12xTaxol/Herceptin
currently off Herceptin
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Old 01-19-2009, 08:33 AM   #6
Shobha
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Thank you for sharing this wonderful news! You really do give me so much hope. I have two small children, 6 and 4. I too keep looking for vaccine trials that I can get on...every little ache or pain gets me worried for their future.

But your post is really uplifting. Thanks again! May God bless you with continued good health.
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DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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Old 01-19-2009, 11:00 AM   #7
schoolteacher
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Michele,

Thank you for posting. This gives me HOPE.

Amelia
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Old 01-24-2009, 08:46 PM   #8
caya
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Thanks for posting this FANTASTIC news Michele - 5 years out - WOW!! I wish you many many more years of NED!!

all the best
caya
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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
10 Years NED!!
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Old 01-24-2009, 08:52 PM   #9
ElaineM
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Wink 5 year's out from stage 3

Blessings to you. Thanks for sharing your good news.
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Peace,
ElaineM
12 years and counting
http://her2support.org/vbulletin/showthread.php?t=48247
Lucky 13 !! I hope so !!!!!!
http://her2support.org/vbulletin/showthread.php?t=52807
14 Year Survivor
http://her2support.org/vbulletin/showthread.php?t=57053
"You never know how strong you are until being strong is the only choice you have." author unknown
Shared by a multiple myeloma survivor.
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Old 09-07-2009, 03:54 PM   #10
Leslie304
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5 year's out from stage 3 Her2 pos 35 pos nodes

WoW! I needed that! Thank you so much for that posting back in January. See, even nine months later you are uplifting and inspiring those of us who are scanning this site for HOPE! You have given me renewed hope! Thank you, thank you, thank you!

What about the vaccine? I haven't heard much of it. Are they recommending it at the end of treatment? I've been pretty non responsive to all neoadjuvant treatment and hoping to get to surgery soon. I keep telling my body we can do this, we can heal from this!
Thanks!
Leslie
__________________
2009
3-15 Age 48 -found lump
Dx 4/15/09: IBC Stage III w/extensive lymph node involvement HER2+++
5/1/09: Adria/Cytoxan for x 3-no response
6/12/09: Taxol/Herceptin for 1 tx -no response
6/24/09: added Carboplatin to T/H x 3 - no response
7/09 -added F5U -no response
7/29/09: Herceptin/Xeloda/Tykerb no response
8-18-09: 2nd opinion at MDA - IDC not IBC! First Onc disagrees,
BRCA 1/2 Neg
8-19-09: continue on Herceptin/Xeloda/Tykerb-slight response
9-24-09 MRM right breast 10x10 cm tumor! (Huge!) no necrosis - Got clear margins! A miracle!
13 of 18 nodes positive
11-2-09 -12/10 started radiation
12-10-2009 - Finished with radiation!!
2010
1/13/2010-Back on Xeloda x six cycles (have been on Tykerb/Herceptin all along)
4/4/14 - stopped Xeloda/Tykerb one cycle early. Liver enzymes high!
4/20/2010 Clear PET Scan!! NED
6/10/2010 - Finished Herceptin11/8 - Brain METS! CRAP! WBRT only option given. Four mets, separate locations in brain, no SRS
12/10 - Herceptin/Tykerb/Xeloda
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Old 12-02-2009, 11:51 AM   #11
Rozebud
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Michele - I haven't been on this site for a LONG time! I was thinking about you the other day. Congrats on 5 years! Like you, I'll hit 6 years in just a couple of months. I too was told I had horrible odds. Herceptin changed everything - thank you LORD for herceptin!!

Rose
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Rose

Dx'd 1/04 at 33, while 33 weeks pregnant

Dx: Stage IIIC IDC, ER-, PR+ (23%), Her2=2.7 (IDC)/7.6 (FSH), 2.5cm primary tumor, grade III, 11/18+ nodes (largest 3.8 cm)

Treatment: A/C *4, T *4, 1 year of herceptin (BCIRG 006), mastectomy, rads (7 weeks), zoladex (5 years) with tamoxifen (2 years)/aromisin (3 years), bilateral SGAP summer 05 at NOLA

Oops, retested tumor and I guess I'm er/pr- after all.
Stopped all hormonal tx 10/07. Periods resumed 6/08. Bye bye hot flashes!!!!

http://www.edrie.com/kopecky
*~VISIT OUR FAMILY!~*
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Old 12-02-2009, 12:13 PM   #12
schoolteacher
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Rose,

Thanks for sharing your encouraging information.

Amelia
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Old 12-03-2009, 01:03 PM   #13
Sandra in GA
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Michelle,
I think you are the only one who has had more positive nodes removed than me. I find you to be an inspiration. Like you, I am also a nurse ever though I had gotten an educational degree when my kids were in college and taught first grade for about 15 years. However, I still maintain my RN liscense. Having enough knowledge to know what the doctors ard talking about has its advantages and disadvantages. When I started reseaching HER2, (I had not been working the medical field for almost 20 years and had never heard of it) I got scared to death. After almost a year of treatments, I found this site and now I come here often for the research, stories of survivors, and encouragement to others. This is a wonderful place to visit.

I finished my Herceptin and lapatinib phase II trial for early HER2+ breast cancer (stage III doesn't sound early) November 17th. I am now hoping to get into a vaccine trial. First I have to deal with these cataracts that the Decadron caused. My first surgery is next Tuesday and then the other one will be on Dec. 29th.

Your sixth anniversary is coming soon! I hope and pray that you are still NED!
__________________
Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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Old 12-05-2009, 10:49 PM   #14
micheleu
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Sandra, I am now 6 years and 4 months out NED! I see that the dr.'s are giving alot of the newly dx stage 3 women Herceptin and Tykerb. That's awesome! I did take Tykerb 3months (off label). I stopped due to side effects (diarrhea). Doing really well, except for some swelling and pain in affected arm, nothing i can't LIVE with!
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Michele Ulmer

Dx.2003 Stage 3b 35 pos nodes

Dx August 2003 Stage 3B with 35/35 nodes IDC age 39
Lumpectomy
A/C x4 Taxol x12
35 radiation tx
1Year Herceptin in trial
HER2 vaccine trial Seattle
3 months Tykerb off label
NED


Last edited by micheleu; 12-05-2009 at 10:49 PM.. Reason: update
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Old 12-06-2009, 02:35 AM   #15
Sandra in GA
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Michele,
Yeah, that diarrhea is something else. Before I got to that phase in my treatment, they had already reduced the dosage from 1000 mg/day to 750. They had to reduce my dosage further to 500 mg/day during the Taxol phase. Durng the rest of the year, I had 750 but was never able to get to 1000 which was what they really wanted. I think being at the end of a study sometimes has its advantages! Even though I didn't take the max dose, I still feel very lucky to have gotten it. They have already started a phase III study with one arm being like the treatment I got, another just Herceptin, another just Tykerb, and one with Herceptin and Tykerb and no standard chemo. I am actually glad that I got the "all the big guns." But, it is wonderful to not have a tummy ache after having one for a full year! I like to think that those three months are what has helped you reach this awsome NED status for over six years!

I too am having some swelling in my left arm. I had an episode last week that was strange. I felt some pain and soreness during the night, then when I was getting dressed the next morning, I noticed a red area larger than a half dollar on my upper arm with a large streak going about half way around it. It was very warm and very sore. Since it was Sat., I called the on-call dr and she prescribed antibiotics. It responded very nicely and the residual lump under the skin went away after a week of treatment. I had no cuts, bruises, or any injury to that arm that I was aware of. I do still have extra swelling which I seem to retain under my arm in my surgical area. Has anything like this happened to you? My left arm is my predominate one since I had Polio at a very young age that left me with very limited use of my right. I knew that I would have to be careful not to injure my left arm and hand, but I do have to use it a lot. If you have any advice for me, I would appreciate it.

Thank you for responding and sharing your history with me! STAY NED!!!
Sandra
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Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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Old 12-06-2009, 04:57 AM   #16
Chris B.
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Smile Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

My diagnosis is so similar to yours. I was diagnosed stage 3B in December 2006. I had a lumpectomy and lymph node dissection. I had 17 cancerous lymph nodes out of 17 they removed. I had agressive chemo, followed by 37 rounds of radiation and a year of Herceptin. I am doing fine and coming up on my third year NED!! Prognosis was very poor, but here I am. I worry every day, but know I am in God's hands.
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Old 12-06-2009, 07:11 AM   #17
Sandra in GA
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Chris,
Thank you for posting. I am sure there are more of us out there but it is reassuring to know for sure there is another. My surgeon was very surprised when my scans were clear and I did not have mets in my bones or other organs. There was one spot on my left lung that was questionable, but my onc said it was too small to biopsy. It was not been mentioned on my subsequest scan, so if it was something the treatments have wiped it out. I agree with you, we are in God's hands. I feel He certainly led me down to Mayo when I found my lump.
Sandra
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Diagnosed: 7/25/08 ~ age 63, no family history
Surgery: 8/14/08 Bilateral mastectomy; tumor left breast, node dissection; right prophylactic with expanders: 1/12/10 latisimuss dorsi flap on left side: 9/22/10 implants in
Pathology Report: ER/PR-; HER2+ (3+); Grade 3, StageIII; 3cm tumor plus 21/21 lymph nodes positive; 5cm DCIS
Chemo: A/C; Taxol/Herceptin/Tykerb; phase II study at Mayo adding Tykerb for early stage
Radiation: 25 rads
Vaccine: Walter Reed GP2/AE37 vaccine study ~ last booster 9/17/2012
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Old 12-09-2009, 10:43 AM   #18
krisvell
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Congratulations on your great success. Reading your post brought tears of joy for you and encouragement for me. THANK you for sharing.

Do you have any suggestions how to pursue the HER2vaccine trial?
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 12-19-2009, 11:17 AM   #19
lkc Gumby
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Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

Hi All, Just wanted to tell the new ladies. I am out 4 yrs 7 mos ( but who's counting) from Stage IIIC with 12 pos nodes, blah , blah blah. I am doing great, no problems.
( this after a really dismal prognosis)
Don't beleive the stats, they're outdated ,and much much more women are out there living their lives!!
God Bless.
__________________
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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Old 03-10-2010, 10:08 PM   #20
Louise Limehouse
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Thumbs up Re: 5 year's out from stage 3 Her2 pos 35 pos nodes

I'll never forget my dr. saying "there's a new drug, Herceptin...it's the biggest breakthrough in breast cancer treatment since I've been practicing!" I thought, oh that's nice. Little did I know how very serious he was and that it would be the savior of many, many women, including many of you and myself! What a blessing it's been in my life and I can't wait till he says, "we've made a bigger discovery than Herceptin, and it's going to put an end to BC losses!" Congratulations to all who are fighting the good fight!
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