Her2 Positive and need info??

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Tricia Keegan
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Her2 Positive and need info?? - Tuesday, July 21, 2009 2:00 PM
Welcome fellow her 2 er's!

I've posted a little info below and will be adding to this thread as time goes on.
If you've been diagnosed as her2+ and have any questions on treatment or the her2 gene and what it means for you please post here or send me a pm and I'll be happy to help.
You can also e mail me by clicking on my name if you prefer:)

http://www.herceptin.com/her2-breast-cancer/testing-education/what-is.jsp
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

LuCinda
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Re:Her2 Positive and need info?? - Tuesday, July 21, 2009 5:50 PM
Tricia,
Thank you for this thread.....and for all the help you have given me.
When I first came here I had no idea what her2+ meant.And now thanks to you I know.I'll take all the information and support I can get.
I have my last A/C treatment on Aug.6 YEAH!! Then I start Taxol and Herceptin.I've read that Herceptin can cause heart damage and that kinda of scares me.How did you react to Herceptin?Or anyone else?
I know everyone is different...but would just like to hear from you ladies that have had this miracle drug.
Again,thank you for this thread.
Hugs,
Cindy


Diagnosed-March 30,2009 Stage 2 ER/PR NEG. HER-2 postive
Lumpectomy-May 14,2009
Chemo-2 weeks after surgery
A/C- 4 treatments every 3 weeks-1st treatment June 3,2009
Last Treatment Aug.6,2009=DONE
Taxol + Herceptin weekly for 12 weeks
First treatment Aug.27,2009
Finished Taxol Nov.13,2009
Radiation-36 treatments-Start January 8,2010
Herceptin- every 3 weeks for 9 months

If it wasn't for the rain we wouldn't have rainbows.......

Tricia Keegan
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Re:Her2 Positive and need info?? - Wednesday, July 22, 2009 3:53 AM
Hi Cindy,

Thanks so much for being the first to post on "our" new section for her2+ and also for your kind words:)   (as you probably gathered by now I'm a huge herceptin fan lol)!

To answer your question yes, herceptin, like a/c can carry risks to the heart but all onc's will monitor you very closely during the time you take it with either heart echo's or mugga scans every three months. This gives them an early warning or indication the heart ejection fracture is lowering. 
I was fortunate and had no problems at all and could continue right through as many do and no side effects since.
However, if it does happen it's usually temporary and  for most people stopping the drug for a short time will usually repair the damage and then you can continue. Most of the people I've known with problems have been able to do this. In a few cases, some people can't continue the full year but as yet, they really don't know if we need the full year or not. There are currently studies ongoing to try to determine if longer or shorter methods work better.
I would'nt worry too much as hopefully you'll sail through as I did but it'll be interesting to read others opinions and experiences on this:)

http://www.cancer.gov/clinicaltrials/results/trastuzumab-heart0607
<message edited by Tricia Keegan on Wednesday, July 22, 2009 7:18 AM>
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Tricia Keegan
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Re:Her2 Positive and need info?? - Saturday, July 25, 2009 3:11 PM
The very best info and latest research results is to be found on www.her2support.org
Please check it out, it can be a little technical in places but you still gain enough advice to understand and make the right treatment choices if you're her2 positive.
Also www.herceptin.com
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

RP66
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Re:Her2 Positive and need info?? - Monday, July 27, 2009 5:20 PM
Hi Cindy,
Just wanted to let you know that I didn't have any problems while being on herceptin~aka~miracle drug!  Like Tricia said, the onc will monitor your heart closely.  I had 6 muga scans by the time I was done with the year long treatment.  On the day of the infusion I would have a slight headache and feel a bit tired.  By the next day I was fine.
I remember being so scared before I started herceptin.  I'm sure your dr will keep a close eye on you and you'll breeze through it too!! 
Rene'~OH
dx 10/06 @ 40 yrs old
stage IIIa/grade3, 7/10nodes+
er/pr+,her2+
a/c/t&herceptin
rbrst mast/hyst 3/07
33rads 6/07 Tried the AI's for 18 months & switched to Tamoxifen~much better for me! 
Bilateral Tram-flap 4/08 Revision-left 7/08 
New surgeon revisions: 5/09-8/09-8/10  
Dec 2010  Finally finished! 
cp:RenePetrovich

LuCinda
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Re:Her2 Positive and need info?? - Tuesday, July 28, 2009 11:15 PM
Rene',
Hi,Thank you so much for sharing that information with me.
My last A/C is next Thursday.Even though I'm not looking forward to chemo.....I'm looking forward to this one.lol
I really trust my onc.and I know he will take care of me.That doesn't mean I'm still not a little scared.I had open heart surgery when I was 6 years old for a birth defect.And even though my cardiologist says I'm ok.....I still wonder.
Please come back on post again.
Hugs,
Cindy


Diagnosed-March 30,2009 Stage 2 ER/PR NEG. HER-2 postive
Lumpectomy-May 14,2009
Chemo-2 weeks after surgery
A/C- 4 treatments every 3 weeks-1st treatment June 3,2009
Last Treatment Aug.6,2009=DONE
Taxol + Herceptin weekly for 12 weeks
First treatment Aug.27,2009
Finished Taxol Nov.13,2009
Radiation-36 treatments-Start January 8,2010
Herceptin- every 3 weeks for 9 months

If it wasn't for the rain we wouldn't have rainbows.......

Deb Allen
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Re:Her2 Positive and need info?? - Tuesday, July 28, 2009 11:30 PM
Cindy, you have to be among the bravest of the brave, with your previous heart surgery at age SIX!!  Then to have this drug to save your life, all the while having MUGA scans to determine if there is any reduction in your heart function....all I can say lady...



I would be terrified, but you continue to post for everyone...

Deb
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





Tricia Keegan
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Re:Her2 Positive and need info?? - Wednesday, July 29, 2009 8:18 AM
Researchers say PTEN protein may help predict trastuzumab-resistant breast cancers. Medscape (7/28, Mulcahy) reported, "Expression of the phosphatase and tensin homolog (PTEN) protein might help predict which breast cancer patients will be resistant to treatment with trastuzumab (Herceptin)," according to a study published in the Aug. 15 edition of Cancer Research. For the study, researchers "used 56 differential equations to build a model and analyze the change in concentrations of 56 separate biologic entities, including proteins," finding that "quantitative PTEN protein expression was the key determinant of resistance to the anti-HER2 therapy, both in the math model and in vitro." In addition, "this quantitative PTEN protein expression was more predictive of response...than other pathway components taken in isolation and when 122 breast cancers treated with trastuzumab were tested by multivariate analysis." The researchers noted that "the key to using computational power to evaluate the efficacy of a targeted cancer therapy lies in the fact that pathways can be translated relatively easily into mathematical models."
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

RP66
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Re:Her2 Positive and need info?? - Wednesday, July 29, 2009 6:00 PM
Hi Cindy,
Congratulations on your last A/C coming up next week!!!  That is a major accomplishment!! 
I'm glad your cardiologist gave you the ok and it is great to have an oncologist that you trust.  Mine is very honest and sensitive and I'm grateful for those two traits.
This website was a wonderful support and learning tool for me during my active treatments.  And (obviously) I still come here and lurk to see if there is anyone that I can encourage.
Take care!
Rene'~OH
dx 10/06 @ 40 yrs old
stage IIIa/grade3, 7/10nodes+
er/pr+,her2+
a/c/t&herceptin
rbrst mast/hyst 3/07
33rads 6/07 Tried the AI's for 18 months & switched to Tamoxifen~much better for me! 
Bilateral Tram-flap 4/08 Revision-left 7/08 
New surgeon revisions: 5/09-8/09-8/10  
Dec 2010  Finally finished! 
cp:RenePetrovich

LuCinda
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Re:Her2 Positive and need info?? - Thursday, July 30, 2009 12:11 AM
Tricia,
Thank you for the info.....we can also count on you.I don't know what I'd do without your support.

Deb,
You are too sweet!! Thank you.I've spent a lot of my early years in hospitals.....I guess I was to young to be afraid.But,with B/C I haven't been that brave.I've done what I've had to do....but I'm still scared......

Rene'
Thank you for your words of encouragement.Please keep coming back.
Those of us just starting Taxol + Herceptin will need all the support
we can keep.
Hugs to all,
Your friend and sister always,
Cindy


Diagnosed-March 30,2009 Stage 2 ER/PR NEG. HER-2 postive
Lumpectomy-May 14,2009
Chemo-2 weeks after surgery
A/C- 4 treatments every 3 weeks-1st treatment June 3,2009
Last Treatment Aug.6,2009=DONE
Taxol + Herceptin weekly for 12 weeks
First treatment Aug.27,2009
Finished Taxol Nov.13,2009
Radiation-36 treatments-Start January 8,2010
Herceptin- every 3 weeks for 9 months

If it wasn't for the rain we wouldn't have rainbows.......

jwills
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Re:Her2 Positive and need info?? - Thursday, July 30, 2009 12:07 PM
Hello,
My wife was diagnosed with her2 in March of this year.  We quickly started a neo-adjuvant chemo which included herceptin.  This was scheduled for 24 weeks and then she would have her mastectomy.

All along we have been feeling real good about everything, until yesterday.  Half way through her treatments, they did another echocardiogram (as discussed in this thread) to see how her heart was responding to the treatments.  We learned yesterday that her left ventricle is at 35% output and they wont let her continue with the second half, 12 more weeks, of her treatments.

So now she is going to see a cardiologists and we are scheduling the mastectomy sometime in the next 3-4 weeks.

My question is.... I forget who, but someone posted in this thread the possibility of discontinuing or pausing herceptin treatments for a period time and then resuming them at a later date?  Do you have additional info, insight or literature you can share regarding this?

My next question is....since these heart problem issues only appear to only happen with less than 5% of the patients receiving herceptin... i am having a hard time learning more about her2, the prognosis and the abscence of herceptin therapy with her2 patients.  It's pretty frustrating.  Every thing (discussion, website, literature, study) her2 related that i find is also herceptin related.  This was of huge comfort to me before yesterday- but now i need more information on her2 and treatment options and am having a hard time finding it. 

Has anyone had a similar situation where they had to discontinue their herceptin mid-way through their chemo because of heart problems?

Thank you.

LuCinda
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Re:Her2 Positive and need info?? - Thursday, July 30, 2009 2:21 PM
JWills,
Hi and Welcome.....
Everything I learned about her2+ I learned from Tricia.She will be on sometime today(she always is) and she can help you.Deb is wonderful with advice and she will be on sometime today too.
I just wanted you to know I think you are a wonderful and loving husband to be doing this.And I will be keeping you and your wife in my thoughts and prayers.
Stay Strong....
Cindy


Diagnosed-March 30,2009 Stage 2 ER/PR NEG. HER-2 postive
Lumpectomy-May 14,2009
Chemo-2 weeks after surgery
A/C- 4 treatments every 3 weeks-1st treatment June 3,2009
Last Treatment Aug.6,2009=DONE
Taxol + Herceptin weekly for 12 weeks
First treatment Aug.27,2009
Finished Taxol Nov.13,2009
Radiation-36 treatments-Start January 8,2010
Herceptin- every 3 weeks for 9 months

If it wasn't for the rain we wouldn't have rainbows.......

Tricia Keegan
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Re:Her2 Positive and need info?? - Thursday, July 30, 2009 2:57 PM
Thanks Cindy!

Jwills, the very best and latest info you can get on her2 and everything concerning it is at www.her2support.org
If you don't find what you need there, they have a search facility you can try or post the question and I guarantee you'l get the answers you need.

Your wife should be able to stop the herceptin for a while and hopefully resume in a few months to give her heart time to recover.  I did'nt have this problem myself but know many who stopped but could continue after a break.
I hope this helps a little and my best wishes to you both:)

You can also get some of the info you need on www.herceptin.com including advice on any heart problems.
I think the heart needs to be pumping at 50 approx in order to continue, if your wife had a/c chemo this is also very toxic to the heart. Hopefully she'll get to resume her treatments very soon.
<message edited by Tricia Keegan on Thursday, July 30, 2009 3:00 PM>
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Deb Allen
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Re:Her2 Positive and need info?? - Thursday, July 30, 2009 9:10 PM
jwills, I found another link with some additional information regarding herceptin, her2, and heart problems, with stats that should provide you some comfort...

http://www.cancer.gov/clinicaltrials/results/trastuzumab-heart0607

Your wife is blessed to have you, and please, anything else you need, just come here, and while it may take a bit of time for an answer, Komen's promise is that our goal is to let no post go unanswered.

Best of the best to you,
Deb
Deb/aka Mimi
Dx '03, ER/PR+, Her2+, Grade II, Stage III
SNB, 18 wks chemo  36 rads; 
Rec in 07,
Bi-mast/DIEP 08/29/07; MRSA in abd incision w/resulting hernia, difficult healing
Still alive and kicking and ornery as ever...butterfly kisses to all





Tricia Keegan
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Re:Her2 Positive and need info?? - Friday, July 31, 2009 3:40 AM
I need to add this very short term study does not include adramycin which is the main drug used before herceptin and far more toxic than doxil and the other drugs mentioned so does'nt really tell us much.

Herceptin was approved for use in the adjuvant early stage setting in '05 so the people who took it after this date (such as myself) are all writing the new chapter on this drug and it will be some years before we know more. 
What has been shown already and we do know is that taking herceptin significantly reduces recurrance so for many people the risk is worth it. The incidence of any long term damage is low so far and in most cases the heart does recover.
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

Tricia Keegan
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Re:Her2 Positive and need info?? - Friday, July 31, 2009 3:50 AM
The following is a short news clip from the Reuters agency looking at reducing cardio-toxicity in herceptin use-




Print | Close this window
"Dose-dense" chemo cuts Herceptin heart risk-study

Thu Mar 6, 2008 6:32pm EST
LOS ANGELES, March 6 (Reuters) - Combining targeted breast cancer treatment Herceptin with a more frequent chemotherapy regimen reduces the risk of heart problems related to the Genentech drug, according to researchers at New York's Memorial Sloan-Kettering Cancer Center.
Previous studies have shown that when standard chemotherapy drugs are administered every two weeks -- a treatment plan called "dose-dense" -- the likelihood of survival is improved and the risk of cancer recurrence is lowered.
But some oncologists have hesitated to use Genentech Inc's (DNA.N: Quote, Profile, Research) Herceptin in conjunction with more frequent chemotherapy for fear of heart damage, said Dr. Chau Dang, an oncologist at Sloan-Kettering and the study's lead researcher.
"We are excited about this because we saw that the risk of cardiac toxicity is actually lower," she said.
Herceptin, or trastuzumab, is an antibody-based drug used to treat the 25 percent to 30 percent of breast cancer patients who have tumors that generate a protein called HER-2.
These tumors tend to grow faster and are more likely to recur than tumors that do not carry the protein.
Unlike chemotherapy, which is toxic throughout the body, Herceptin is designed to target tumor cells and spare normal cells, but it still causes side effects, the most serious being congestive heart failure, which occurs in up to 4 percent of patients treated with the injected drug.
The small Sloan-Kettering study demonstrated an even lower risk of cardiac toxicity when standard chemotherapy drugs are administered once every two weeks, instead of once every three weeks, which is the regimen under which previously-published trials evaluated Herceptin.
The study of 70 patients with early-stage breast cancer found that just one patient, or 1.4 percent, experienced congestive heart failure after 28 months of follow-up.
"There is no reason to forego giving a dose-dense regimen of chemotherapy ... the toxicities are not worse," said Dr. Dang.
The study will be published in the March 10 issue of the Journal of Clinical Oncology and was supported by grants from Genentech and Amgen Inc (AMGN.O: Quote, Profile, Research). (Reporting by Deena Beasley; Editing by Andre Grenon)

© Reuters















Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

LuCinda
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Re:Her2 Positive and need info?? - Friday, July 31, 2009 10:43 PM
Tricia,
Great article....thank you.It is very encouraging to read this information.
Hugs,
Cindy


Diagnosed-March 30,2009 Stage 2 ER/PR NEG. HER-2 postive
Lumpectomy-May 14,2009
Chemo-2 weeks after surgery
A/C- 4 treatments every 3 weeks-1st treatment June 3,2009
Last Treatment Aug.6,2009=DONE
Taxol + Herceptin weekly for 12 weeks
First treatment Aug.27,2009
Finished Taxol Nov.13,2009
Radiation-36 treatments-Start January 8,2010
Herceptin- every 3 weeks for 9 months

If it wasn't for the rain we wouldn't have rainbows.......

Susan15066
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Re:Her2 Positive and need info?? - Saturday, August 01, 2009 10:56 AM
Hi JWills:  I had to end my herceptin treatments after 8 months due to low MUGA scores.  When it went down to 42 the doctors decided to quit the herceptin.  I was initially disappointed because I wanted to do everything possible to never have a reoccurance, but the oncologists felt receiving 8 months is a huge help. 

I ended up going to a cardiologist, and they monitored me for about a year.  After 1 year, I was back to my orginal MUGA score.  I was faithfull about exercising through chemo, and the herceptin, so I was rather surprised how low it got. 

I'm doing fine now, and it's been 4 years since my diagnosis. 
Susan, Bay City, MI
Lumpectomy 5/05
Neg nodes
ER+
HER2+
Oncotype score 40
4 DD A/C
33 radiation 
8 months of Herceptin
Ooph & Hyster 11-07
Arimidex as of 11-07
Quit Arimidex 11-09 due to joint pain

Jean Southward
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Re:Her2 Positive and need info?? - Saturday, August 29, 2009 7:10 AM
I have information on HER2 but seem to have trouble finding how the estrogen+ and proges+ impacts the HER2+ gene factor.  I have read that this is not as common but cant seem to find info about the 3 positives.  Do you know if it even matters? 
Jean S

Hope is that thing with feathers that perches in the soul and sings the tune without words and never stops...at all.

Emily Dickinson

IDC Stage IIB Grade 3 BC DX on 2-10-09
HER2+++
ER/PR+ 90% 
2 of 6 Node Positive
Double Mastectomy 2-23-09
Completed Chemo TC 7-10
Herceptin until 3-20-10
Arimidex for 5 years Started 8-09 

Tricia Keegan
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Re:Her2 Positive and need info?? - Saturday, August 29, 2009 3:45 PM
Jean, I just replied to your introduction on the other forum.
It's still a little early to tell if the er/pr factor does make a difference with her+ but you can get a lot of info regarding this on www.her2support.org
Tricia Keegan...From Ireland Dx July '05 IDC 3/9 nodes pos..triple positive..a/c x 4..Taxol/herceptin x 12
Herceptin 1yr ..rads x35 oophorectomy Aug '06
Currently taking Arimidex /Zometa 1 x yearly
Carepage- survivortricia

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