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Old 02-22-2007, 05:53 PM   #1
Sheryl H
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Talked to onc today re: Herceptin

Thanks everyone who replied to my question about being her2 positive and using Herceptin. I talked to my oncologist today and we set up my first chemo for March 20th. I complete rads on February 26th. He said I could use Herceptin after my chemo. I will be using Adriamycin and Cytoxan, and I know you can't use Herceptin with the Adriamycin. He said there were some studies done on using Herceptin for a shorter period of time, rather than for a year, and he would check into those, too.

So, I have had a lumpectomy - clear margin, sentinel node biopsy - 5 nodes, all clear, 35 radiation treatments with the last 8 being the boost. Then I will have 4 treatments of Adriamycin and Cytoxan. Followed by Herceptin and Tamoxifen .

My concern is by the time I start receiving Herceptin, it will be six months from the time I discovered the lump in my breast. That just seems like a long time to wait when I am her2 positive, and I know that means it is a more aggressive form of cancer. Just want to make sure I am as well informed as I can be, so that I can do my best to fight . Has anyone else waited this long to start Herceptin?
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Old 02-22-2007, 06:28 PM   #2
Grace
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Finher Study

Hi--One study I know of is the Finher study, done in Finland, where the women received nine weeks of herceptin with good results. However, it was a very small study (i.e., small number of participants), and I'm not aware of any follow-up. You or your doctor can probably find information about the study on the internet. Before going with that regime I would check to see what the follow-up has been. Good luck!
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Old 02-23-2007, 08:26 AM   #3
janet/FL
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Sheryl, I waited eight months to start chemo and Herceptin as I could not get Herceptin before that. It was not approved for cancer, stage one, like yours and mine is. It is now. I had Herceptin combined with Taxotere (similar to Taxol).

I would also ask your doctor if you could receive TCH chemo. Excuse the spelling, but that would be taxol, carplatin, and Herceptin together. I believe that is the combo many doctors are giving to patients with your type of diagnosis, assuming you are Stage One. They skip the Andriamycin due to the possible heart damage when used with Herceptin. Perhaps someone can steer you to some information you can give your doctor.
Congratuations on being an activist for your treatment. I know it isn't easy and very worrisome.
Hugs
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Janet
Endometrial Cancer 2002
Mammogram 11/2004
Lumpectomy 12/2004
Stage 1, 9mm DCIS, grade 2, Her2+++, ER/PR negative
Refused A/C as recommened by two oncs.
35 treatments of radiation that ended March 4, 2005
Changed oncologists and began
Taxotere/Herceptin August 2005. Finished Herceptin July 2006
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Old 02-23-2007, 08:39 AM   #4
kk1
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Sheryl;

I agree with Janet that you should really question your Onc about using adrimyacin when Herceptin is to follow. The incidence of heart problems due to herceptin is much higher in women who had adrimycin. I would also question the herceptin and tamoxifen combo, please asking him to show you or cite scientific papers that show that this combo has a potential to work. From my literature searches they are few and far between and the current literature has much stronger evidence for herceptin and an AI (arimidex), if your premenopausal you can use lupron or zoladex to turn off the ovaries.


kk1
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Old 02-23-2007, 01:22 PM   #5
Barbara2
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You asked,"Has anyone else waited this long to start Herceptin?" I started herceptin 26 months after chemo.
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Blessings and Peace,
Barbara

DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.

Accepting the gift of life, I give thanks for it and live it in fullness.
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Old 02-23-2007, 04:33 PM   #6
Adriana Mangus
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Post Second Opinion

SHeryl: I would definitively ask for a second opinion,I really do not like what I hear. Sorry cannot be of any more help, when I was diagnosed in 1994, there was no Herceptin available to us, lucky me (yes, very fortunate to have tested Her2+) - am now receiving herceptin - please read my profile- Good Luck and welcome aboard! Sending you a BIG CYber HuG!
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1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
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Old 02-24-2007, 06:39 PM   #7
nitewind
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Sheryl, It was eight monthes after I found my lump that I started Herceptin. I started the chemos four monthes after finding it. I am er/pr- and her2+++, sentinal node biopsy showed no node involvement. Next week I see my doctor and have rads set up. Oh yeah, I'll be getting the herceptin for at least the next year.
Feeling better every day and seeing the light at the end of the tunnel!
Susan
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Susan
Age: 61
dx: 5/25/06
2 cm/ 0 nodes
Lumpectomy rt breast on 7/26/06
ER/PR- / Her2+++
A/C x 4
finished taxotere 2/07
finished 33 rads
Herceptin finished 12/07/07 Yippee!
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Old 02-24-2007, 08:34 PM   #8
Bev
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Hi Sheryl,

I think most of us have done rads after AC and during taxotere and Herceptin.

Your time frame is within normal practice. I don't know if anyone knows if it would be more effective having it earlier. That would make for an interesting study. Makes sense, but there's no data to support. There's been some discussion as to whether we need AC. Still many studies that show it helpful.

I haven't done TCH. It might be worthwhile to look into. As to heart damage, AC was rough on me, but I went back to normal on TH. So we all react differently. Get a 2nd opinion so you'll feel better about your choices. BB
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Old 02-24-2007, 08:58 PM   #9
Lani
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Sheryl

I seem to remember there being an entity (can't remember the exact name)
radiation recall dermatitis--which was why they liked to give the chemo before the rads. As I recall, certain chemos (I think anthracyclines) given after radiation therapy could cause (in a percentage of patients) a nasty dermatitis where the radiation had been given. (I don't think it was vice-versa). Try putting radiation recall dermatitis into PubMed and google.

Sorry not to be too sharp this evening.
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