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All TopicsForum: Stage IV and Metastatic Breast Cancer ONLY → Topic: HERCEPTIN and/or PERJETA Threads

Topic: HERCEPTIN and/or PERJETA Threads

Forum: Stage IV and Metastatic Breast Cancer ONLY —

A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.

Posted on: Dec 4, 2014 05:13AM

Teakie88 wrote:

I am currently on Herceptin and Perjeta with Zometa every three weeks. Would love to hear from others who have been on this targeted therapy and how well the treatments have been working for you..

Do not go gentle into that good night (Dylan Thomas) Dx 5/19/2011, IBC, 5cm, Stage IIIB, Grade 3, 10/10 nodes, ER-/PR-, HER2+ Dx 6/6/2014, IBC, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 4, 2014 06:45AM sueopp wrote:

Teakie88, yup, count me in.  I have been doing Herceptin for many years, and have been getting H & P together for the last year and a half (with a third drug, navelbine).  I get zometa only every 6 months.  I can report that I have been "holding steady" (stable) for the whole time I have been on the H & P - very few side effects, still have hair.  I think it's a really good combo for us Hersies.  Good luck.  SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Dec 4, 2014 07:07AM Teakie88 wrote:

sueopp: I've heard a lot of people that have Navelbine as part of their regiment. My onc has never mentioned it to me one time as part of my targeted therapy. What can you tell me about it; why was it added to your treatment plan?

Do not go gentle into that good night (Dylan Thomas) Dx 5/19/2011, IBC, 5cm, Stage IIIB, Grade 3, 10/10 nodes, ER-/PR-, HER2+ Dx 6/6/2014, IBC, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 4, 2014 08:33AM sueopp wrote:

Teakie, the navelbine was added to my combo because the doc feels that it acts as a catalyst for the other 2 drugs (1+1+1 equals 4). I recall that many of us on H&P have had a 3rd drug added at least for some of the time, most either navelbine, taxol or taxotere. Makes me a bit nervous about dumping the navelbine, but I won't miss the side effects of the chemo. Best to you, SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Dec 4, 2014 10:39AM Fitztwins wrote:

does Navelbine cause hair loss?

Enjoy Every Sandwich. Dx 12/12/2004, IDC, Left, 3cm, Stage IV, metastasized to bone/lungs, Grade 2, mets, ER+/PR+, HER2+ (FISH) Surgery 1/18/2005 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left; Reconstruction (left): Free TRAM flap Chemotherapy 1/31/2005 AC + T (Taxol) Radiation Therapy 4/30/2005 Breast, Lymph nodes Targeted Therapy 5/31/2005 Herceptin (trastuzumab) Hormonal Therapy 12/31/2005 Femara (letrozole) Hormonal Therapy 6/1/2008 Aromasin (exemestane) Targeted Therapy 6/30/2008 Herceptin (trastuzumab) Hormonal Therapy 6/14/2013 Arimidex (anastrozole) Targeted Therapy 9/4/2015 Perjeta (pertuzumab)
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Dec 4, 2014 11:05AM mikarae wrote:

Hello Teaki88 - I have been on H&P alone since June this year. On day 5 after treatment pain in my upper back and shoulders increases for about a week then goes back to the usual pain. I have had pain in my upper back and shoulders since March this year when I started Taxotere and H&P. I have pain meds that help tremendously. In regards to my bone mets, they have not progressed and have remained stable since I started treatment in March. I have scans again in January. How are the targeted treatments working for you?-Karen


Stage lV. Bone mets at time of diagnoses. Currently, bone mets resolved and one active supra-clavicle node. Surgery 1/14/2014 Lymph node removal: Left, Underarm/Axillary Surgery 1/15/2014 Mastectomy: Left, Right Dx 2/19/2014, IDC, Left, 2cm, Stage IV, Grade 3, 18/18 nodes, mets, ER-/PR-, HER2+ Targeted Therapy 3/3/2014 Herceptin (trastuzumab) Targeted Therapy 3/3/2014 Perjeta (pertuzumab) Chemotherapy 3/3/2014 Taxotere (docetaxel)
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Dec 4, 2014 12:30PM bhd1 wrote:

fitz, I lost my hair on navelbine yes

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 4, 2014 12:38PM Kjones13 wrote:

I started h, p, and taxol in October 2012. Finished taxol end of February 2013. Will be on h and p indefinitely (until it stops working). For me, this is my first line of treatment based on the cleopatra trial. I have done excellent as far as keeping the cancer at bay. The targeted therapies are truly a game changer for us her2 girls. I am interested in its success in patients who are adding it to their second or third line of treatment. Hoping it's just as effective! Good luck to you all!

James 1:2-4 Dx 9/14/2012, IDC, 6cm+, Stage IV, Grade 3, 11/11 nodes, mets, ER+/PR-, HER2+ Surgery 10/9/2012 Lymph node removal: Right, Sentinel Targeted Therapy 10/17/2012 Herceptin (trastuzumab) Targeted Therapy 10/17/2012 Perjeta (pertuzumab) Chemotherapy 10/17/2012 Taxol (paclitaxel) Hormonal Therapy 3/1/2013 Surgery 10/24/2013 Mastectomy: Right
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Dec 4, 2014 01:53PM Shutterbug73 wrote:

H & P with Taxotere here too, on a 3 week cycle. Will be dropping Taxotere after my 6th treatment on Dec. 29 and going on maintenance H&P. It makes me nervous to drop anything that is working, but I'm looking forward to getting my hair back. I also get Xgeva every 6 weeks. This is the first-line treatment for me also. I had one scan half way through treatment, and it showed shrinkage in all tumors (primary in breast and several bone mets). I hope to meet that NED guy everyone talks about one day.

“‎Life is a shipwreck, but we must not forget to sing in the lifeboats.” ― Voltaire Treatment summary: 9/15/14: Also began with Xgeva every 6 weeks. 12/29/14: Last Taxotere. 1/1/15 Changed Xgeva to every 3 months Dx 8/18/2014, IDC, Stage IV, Grade 3, mets, ER+/PR+, HER2+ Radiation Therapy 8/27/2014 Bone Targeted Therapy 9/14/2014 Herceptin (trastuzumab) Targeted Therapy 9/14/2014 Perjeta (pertuzumab) Chemotherapy 9/14/2014 Taxotere (docetaxel) Hormonal Therapy 1/19/2015
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Dec 4, 2014 02:47PM kwagart wrote:

I just started that treatment, I am encouraged by the cleopatra study! I am wondering if it is a first line treatment for me because I had a/c and tax neoadjunct in may, with no evidence of mets, after mastectomy in September, bone mets. So I have had chemo but not as stage 4. Does anyone know?

Taxotere is a lot tougher than taxol! Oh well, since taxol didn't work well, maybe that means taxotere is kicking butt!

Kim

Dx 4/16/2014, ILC, 6cm+, Grade 2, ER+/PR+, HER2- Chemotherapy 5/20/2014 AC + T (Taxol) Dx 9/24/2014, ILC, 6cm+, Stage IIIC, Grade 2, 11/24 nodes, ER+/PR+, HER2- Surgery 9/24/2014 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left; Prophylactic mastectomy: Right Dx 10/28/2014, ILC, Stage IV, Grade 2, mets, ER+/PR+, HER2+ Targeted Therapy 11/25/2014 Herceptin (trastuzumab) Targeted Therapy 11/25/2014 Perjeta (pertuzumab) Chemotherapy 11/25/2014 Taxotere (docetaxel) Chemotherapy 8/4/2016 Taxotere (docetaxel)
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Dec 4, 2014 05:01PM sueopp wrote:

Fitz, I did not lose my hair on navelbine, but it did get thin. The doc told me that the thinning was due to the navelbine and not the H or P (?). SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Dec 4, 2014 06:32PM Teakie88 wrote:

mikarae: This is only my second targeted therapy with Herceptin, Perjeta, and Zometa since I completed chemo with Taxotere. Taxotere was a walk in the park for me personally with only some tiredness to be reported, taste buds whacked out, and some temporary eyesight problems back then. Once Tax was finished, energy levels went back up immediately, and I have no side effects that i am aware of with H & P. My liver mets have reduced drastically, any lung mets I had are now gone, and there are still some back bone mets in places, which don't bother me. My CA 27/29 tumor markers are in the normal range now, and my CA 15 marker is getting close to normal range. Treatments for me will continue indefinitely.

Do not go gentle into that good night (Dylan Thomas) Dx 5/19/2011, IBC, 5cm, Stage IIIB, Grade 3, 10/10 nodes, ER-/PR-, HER2+ Dx 6/6/2014, IBC, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 4, 2014 08:17PM mikarae wrote:

Teakie88: Your treatment has gone a lot smoother than mine. I keep telling myself that the benefits outweigh the side effects. My life has slowly become a welcomed routine. A slightly tweaked version of my pre-cancer life. I hope the H&P keeps working a long time. Have a wonderful evening.- Karen

Stage lV. Bone mets at time of diagnoses. Currently, bone mets resolved and one active supra-clavicle node. Surgery 1/14/2014 Lymph node removal: Left, Underarm/Axillary Surgery 1/15/2014 Mastectomy: Left, Right Dx 2/19/2014, IDC, Left, 2cm, Stage IV, Grade 3, 18/18 nodes, mets, ER-/PR-, HER2+ Targeted Therapy 3/3/2014 Herceptin (trastuzumab) Targeted Therapy 3/3/2014 Perjeta (pertuzumab) Chemotherapy 3/3/2014 Taxotere (docetaxel)
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Dec 4, 2014 09:46PM - edited Dec 4, 2014 09:47PM by Teakie88

Karen: I hope your treatment process continues to improve for you as time goes on, and that you, as well as ALL OF US, reap great benefits from these drugs for many years to come! Ann

Do not go gentle into that good night (Dylan Thomas) Dx 5/19/2011, IBC, 5cm, Stage IIIB, Grade 3, 10/10 nodes, ER-/PR-, HER2+ Dx 6/6/2014, IBC, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 4, 2014 11:45PM CarlaK wrote:

Hi all-I did PHT March-July 2013, then Herceptin alone (plus Tamoxifen) for about a year, and in October we added Perjeta back because of the CLEOPATRA trial results. Taxotere-ugh, it did awful things to my lungs and caused miserable muscle pain, I won't be going back there again! Herceptin alone is easy, just a bit of fatigue and drippy nose. Going back on Perjeta makes infusion an hour longer and causes more achiness but that's gone by the next day. My main side effects with Perjeta are diarrhea, fatigue, and it  makes my neuropathy a bit worse. But if it keeps me stable, I can deal with that. I know there are much tougher treatments out there!

Dx 2/28/2013, IDC, 2cm, Stage IV, Grade 2, mets, ER+/PR+, HER2+ Targeted Therapy 3/20/2013 Perjeta (pertuzumab) Targeted Therapy 3/20/2013 Herceptin (trastuzumab) Chemotherapy 3/20/2013 Taxotere (docetaxel) Surgery 8/14/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left Hormonal Therapy 8/27/2013 Radiation Therapy 9/29/2013 Lymph nodes
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Dec 5, 2014 12:57AM RonnieKay wrote:

Hey...good to see many of us & hope to keep this thread around a long time! Sue & I were Navelbine/hercep/perjeta twins for a long while...with the result of stable...thinning hair & cramping, but stable! After 22 months my new onc (former out on indefinite sick leave) said it was time to give my body a rest from Navelbine (with my scans & tests good), so I'm on hp & femara. I did tax/cytoxen/hercep 5 yrs ago & did well..hercep for the year w/no ses. It's only been 6 weeks off chemo but on this regimen, I have more energy. I have a bit of a sore back in the evening but I think it's the femara (did it w/first dx & had the same for a couple months, then went away). My onc said he's plotting when to ditch perjeta....don't know why, but I think it's contributed to my declining eyesight (heaven forbid it's age!). So hope this work...for all of us!!!

Dx 6/1/2009, IDC, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR+, HER2+ Surgery 6/23/2009 Lumpectomy: Left; Lymph node removal: Left, Sentinel Radiation Therapy 8/10/2009 Breast Hormonal Therapy 1/6/2010 Femara (letrozole) Dx 6/9/2011, IDC, <1cm, Grade 1, 0/2 nodes, ER+/PR+, HER2+ Surgery 6/30/2011 Lymph node removal: Left; Mastectomy: Left; Reconstruction (left): Tissue expander placement Surgery 6/28/2012 Prophylactic mastectomy: Right; Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap Dx 12/21/2012, IDC, 6cm+, Stage IV, 0/0 nodes, mets, ER+/PR+, HER2+
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Dec 7, 2014 06:48AM Teakie88 wrote:

bump

Do not go gentle into that good night (Dylan Thomas) Dx 5/19/2011, IBC, 5cm, Stage IIIB, Grade 3, 10/10 nodes, ER-/PR-, HER2+ Dx 6/6/2014, IBC, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 7, 2014 10:08AM - edited Dec 7, 2014 10:09AM by sueopp

Hello all, I get my scan report tomorrow (Atavan tonight !) and then we shall see if the wizard just drops my navelbine and let's me maintain on H & P or adds something else. Man, it's always something ... SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Dec 7, 2014 10:23AM Teakie88 wrote:

sueopp: Ain't it the truth! Hope all goes very well for you tomorrow! Ann

Do not go gentle into that good night (Dylan Thomas) Dx 5/19/2011, IBC, 5cm, Stage IIIB, Grade 3, 10/10 nodes, ER-/PR-, HER2+ Dx 6/6/2014, IBC, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 7, 2014 10:53AM - edited Dec 7, 2014 10:53AM by bhd1

sue, good luck w the scans. Prayers and hugs. I care. Barb

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 7, 2014 11:04AM Teakie88 wrote:

bhd1: Since you have same diagnosis as me, was wondering if you are also on H & P targeted therapy, and if so, how is it going for you? A short history would be appreciated I'm sure by all of us. Ann

Do not go gentle into that good night (Dylan Thomas) Dx 5/19/2011, IBC, 5cm, Stage IIIB, Grade 3, 10/10 nodes, ER-/PR-, HER2+ Dx 6/6/2014, IBC, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 7, 2014 11:05AM - edited Dec 7, 2014 11:10AM by mikarae

Hope the scans report goes well tomorrow sue. I'm with you on the Ativan! - Karen

Stage lV. Bone mets at time of diagnoses. Currently, bone mets resolved and one active supra-clavicle node. Surgery 1/14/2014 Lymph node removal: Left, Underarm/Axillary Surgery 1/15/2014 Mastectomy: Left, Right Dx 2/19/2014, IDC, Left, 2cm, Stage IV, Grade 3, 18/18 nodes, mets, ER-/PR-, HER2+ Targeted Therapy 3/3/2014 Herceptin (trastuzumab) Targeted Therapy 3/3/2014 Perjeta (pertuzumab) Chemotherapy 3/3/2014 Taxotere (docetaxel)
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Dec 8, 2014 02:18PM sueopp wrote:

Whew! Got a pass - scans showed no changes, still stable. Those boogers are still there, but haven't gone anywhere or gotten any bigger.Now I can forget about it for 6 months - sorta. The wizard is dropping the navelbine due to toxicity side effects, and I will only get H & P once every 3 weeks. I asked how long folks go on maintenance H& P before progressing, and he said the average time is about 9 months. But we know all about "average" estimates, right? Meanwhile it's a blessing and I'll take it. Thanks for the good wishes girlfriends. SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Dec 8, 2014 02:54PM - edited Dec 8, 2014 09:05PM by Shutterbug73

Congratulations on your stability Sue. What good news! I'll be going to maintenance H&P in 6 weeks. I thought the average was 18 months, but like you said statistics don't mean much anyhow.

“‎Life is a shipwreck, but we must not forget to sing in the lifeboats.” ― Voltaire Treatment summary: 9/15/14: Also began with Xgeva every 6 weeks. 12/29/14: Last Taxotere. 1/1/15 Changed Xgeva to every 3 months Dx 8/18/2014, IDC, Stage IV, Grade 3, mets, ER+/PR+, HER2+ Radiation Therapy 8/27/2014 Bone Targeted Therapy 9/14/2014 Herceptin (trastuzumab) Targeted Therapy 9/14/2014 Perjeta (pertuzumab) Chemotherapy 9/14/2014 Taxotere (docetaxel) Hormonal Therapy 1/19/2015
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Dec 8, 2014 03:29PM bhd1 wrote:

wow sue. Good for you. Fantastic news

barb Dx 9/22/2011, IDC, 3cm, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 8, 2014 06:40PM mikarae wrote:

That's great news Sue! I'm so happy for you. :)

Stage lV. Bone mets at time of diagnoses. Currently, bone mets resolved and one active supra-clavicle node. Surgery 1/14/2014 Lymph node removal: Left, Underarm/Axillary Surgery 1/15/2014 Mastectomy: Left, Right Dx 2/19/2014, IDC, Left, 2cm, Stage IV, Grade 3, 18/18 nodes, mets, ER-/PR-, HER2+ Targeted Therapy 3/3/2014 Herceptin (trastuzumab) Targeted Therapy 3/3/2014 Perjeta (pertuzumab) Chemotherapy 3/3/2014 Taxotere (docetaxel)
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Dec 8, 2014 06:59PM Kjones13 wrote:

I'm 21 months progression free on maintenance h and p...you go sue!

James 1:2-4 Dx 9/14/2012, IDC, 6cm+, Stage IV, Grade 3, 11/11 nodes, mets, ER+/PR-, HER2+ Surgery 10/9/2012 Lymph node removal: Right, Sentinel Targeted Therapy 10/17/2012 Herceptin (trastuzumab) Targeted Therapy 10/17/2012 Perjeta (pertuzumab) Chemotherapy 10/17/2012 Taxol (paclitaxel) Hormonal Therapy 3/1/2013 Surgery 10/24/2013 Mastectomy: Right
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Dec 8, 2014 07:14PM sueopp wrote:

YIPPEE!!!!! Good news for all of us, K! SUE

Dx 12/2010, IDC, Stage IV, 26/35 nodes, mets, ER-/PR-, HER2+
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Dec 8, 2014 09:04PM Shutterbug73 wrote:

Wow kjones! That is fantastic

“‎Life is a shipwreck, but we must not forget to sing in the lifeboats.” ― Voltaire Treatment summary: 9/15/14: Also began with Xgeva every 6 weeks. 12/29/14: Last Taxotere. 1/1/15 Changed Xgeva to every 3 months Dx 8/18/2014, IDC, Stage IV, Grade 3, mets, ER+/PR+, HER2+ Radiation Therapy 8/27/2014 Bone Targeted Therapy 9/14/2014 Herceptin (trastuzumab) Targeted Therapy 9/14/2014 Perjeta (pertuzumab) Chemotherapy 9/14/2014 Taxotere (docetaxel) Hormonal Therapy 1/19/2015
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Dec 9, 2014 08:55AM Teakie88 wrote:

Absolutely fantastic news for you! We all hope you continue to do fantastic! Ann

Do not go gentle into that good night (Dylan Thomas) Dx 5/19/2011, IBC, 5cm, Stage IIIB, Grade 3, 10/10 nodes, ER-/PR-, HER2+ Dx 6/6/2014, IBC, Stage IV, Grade 3, ER-/PR-, HER2+
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Dec 9, 2014 01:51PM Hawkeye wrote:

I'm in this group. Diagnosed stage IV from the beginning in March of this year. Began taxotere, herceptin and perjeta. I was to do 6-9 rounds of taxotere but stopped after 3 due to toxicity. So, I'm currently on Herceptin and Perjeta every three weeks for the foreseeable future.

The first infusion of herceptin was paused so I could get morphine for pain. Turns out, tumors being shredded by Herceptin hurts! A lot! Once pain was controlled, resumed treatment have haven't looked back. The tumor in my breast is no longer palpable and the tumors in my liver are getting very small. Before I started treatment, you could visibly see the liver tumors when I lay on my back.

I read a different message board occasionally for HER2 and a woman posted this in September...

I wanted to share with you, that once a year, I get to go to a dinner with a few other cancer survivors from the Jonsson Comprehensive Cancer Center, it is a donor dinner. Two years ago I met Ginger, she is one of the original ladies on the first Her2 trial. She was featured in the movie. She is alive and well at 70. When she went on the trial she was almost in liver failure, her liver was covered in mets. She is no longer on any treatments and is living happily in Bakersfield.

I find it very inspiring that the lady from the very first Herceptin trial is alive and well. I like this kind of news!

Cheers to us all!

Dx 3/2014, IDC, 5cm, Stage IV, mets, ER-/PR-, HER2+ Targeted Therapy 3/18/2014 Herceptin (trastuzumab)

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