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Old 01-06-2007, 07:26 AM   #1
Kimberly Lewis
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Question Tykerb; Is this good news?

I run a google search on BC and had this come up today...

http://www.topcancernews.com/news/46...-breast-cancer
Quote:

The trial, led by Charles E. Geyer, M.D., of Allegheny General Hospital, Pittsburgh and published in the December 28 issue of The New England Journal of Medicine, focused on 324 women whose breast cancer had spread to other organs. The women had already been treated with Herceptin for a median of 42-44 weeks -- and then half received Xeloda chemotherapy and half received both Xeloda and Tykerb.

Women who received the drug combination had more than a 50 percent delay in disease progression. Their cancer spread after a median 8.4 months, compared to 4.4 months for women who received only Xeloda.

Targeted drugs Herceptin and Tykerb are major advances in the fight against breast cancer -- for the 20 percent of diagnosed women with the aggressive HER2 positive disease -- and they are also quite expensive. While some say they are worth every penny if they offer a cure, others question the cost if they only delay the disease progression for a few months. Such was the case in this study.

Perhaps the greatest potential for these agents is for use before breast cancer spreads, when they may improve the chance for a cure.


me again... I thought a few of the girls here on this site had good response to Tykerb? I think that was with mets right? I know I shouldn't believe all of what I read though.
I am just really hopeful that this is another great breakthrough especially for brain mets, since it crosses over the BBB.
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Kim

Diagnosed 7/05
Stage 3a er+(45%) pr+(68%) Her2+ (40%)
3.8 cm + .8cm multi focal - pleomorphic lobular tumors
high grade DCIS
7/20 nodes

BRCA 2
positive as of 5/07
surgeries: double mastectomy, hysterectomy (LAVH)
A/C,Herceptin for 1 year completed 11/06
femara


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Old 01-06-2007, 08:41 AM   #2
Sandy H
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Kim, I had a great response but only have skin mets and no organ or bone involvement. I can tell you skin mets are nasty, not life threatening but miserable to treat and keep stable. I have been very fortunate to keep mine stable and I wish that everyone was that fortunate. hugs, Sandy
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Dx. 03/01, Rt. IBC
AC/Taxatere
Rt. MRM-with graft Lt. simple
5 rads-skin mets
Herceptin, taxol, carboplatin (taxol seem to be the magic drug)
Navelbine & xeloda (did not work)
topical miltex for skin mets
Tykerb/xeloda
thoracentesis x 2 left lung fluid shows cancer cells
Port removal (4 years) with power port replacement
Doxil
Updated 05-07 Scans show no bone or organ involvement we shall see!




I shall not pass this way again. Any good I can do or any kindness that I can show let me not defer or neglect it for I shall not pass this way again.
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Old 01-06-2007, 12:58 PM   #3
michele u
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Hi Kim,

They are talking about women that do have mets that have become stage 4 after Herceptin. I think just like with herceptin, tykerb is going to help the early stage gals out the best. Stage 1,2,3. Here is the dilema. Tykerb is going to be started in early trials now for women that HAVE NOT been on Herceptin already. That means stage 1,2,3. They do not want to do early studies on us Herceptin gals from the Herceptin trials because they want to grab the market from Herceptin. so if they can prove that they can get the same results with oral Tykerb, they will get the Her2 market. So, us that have had Herceptin without a recurrence yet----we either wait and see if Herceptin cured us---or be really proactive and fight for off label Tykerb to better yet improve our outcomes. I'm going for the off label route. My onc is going to give me Tykerb and i'm stage 3. I have to wait for it to be FDA approved first. I think in the future they might use Herceptin and Tykerb for treatment options. I'm thinking that they will give Her2 pos gals that are stage 1,2 or 3 4 A/C then Taxol 12 then start Herceptin and Tykerb. Just my thought
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dx: August 2003 stage 3b 35 pos nodes ER/PR neg Her+
4 AC 12 weekly taxol
one year Herceptin in trial
35 rad tx
vaccine trial Seattle
NED
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Old 01-06-2007, 01:53 PM   #4
Hopeful
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I know I have read about an upcoming trial that will test the benefits of Herceptin vs. Tykerb vs. having the two drugs at the same time vs. having the two drugs sequentially. I thought this was for early stage, but I am not sure. Does anyone else here know? I believe it was post San Antonio info; could have been described in the Breast Cancer Update materials which are linked in the Articles of Interest forum. I know Dr. Chang discussed a laboratory test of applying an AI, Tykerb and Herceptin to cancer cells, a combo designed to block all cross talk pathways. According to her sound byte, it killed 100% of the cells in the lab test. I keep "prepping" my onc when I see him for my Herceptin treatments that I want to consider adding Tykerb to my regimen off-label when FDA approved, for this very reason. (I am stage 1, ER+/PR+).

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Old 01-06-2007, 02:58 PM   #5
Becky
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Dear Hopeful


You are right about the trial. In an evening session at SABCS, Dr Chang and Dr Winer discussed the following trial (of which they still need to submit to the FDA). It is for newly diagnosed early stage (node positive) Her2 bc.

It will run as follows:

4 DD AC followed by 12 Taxol H with 40 weekly Herceptin alone
4 DD AC followed by 12 Taxol with Tykerb with another 40 weeks of Tykerb
4 DD AC followed by 12 Taxol w/ Herceptin AND tykerb followed by 40 weeks of Herceptin and Tykerb.

I am pretty sure that I did not misunderstand that this trial would be 6 armed (concurrent and sequential) and that it would only be concurrent. Sheila, Michelle U, Chrisy, Sandy H, Joe and Christine were at this too (last night of the symposium, Sat. Dec 16). I will look through my books as a brochure of most of the slides were given to each participate. Maybe one of the others can remember it from the top of their head but I am very certain this trial will go this way.
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Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 01-06-2007, 04:00 PM   #6
Hopeful
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Becky,

I will take your information over my memory any day. Thanks for filling in the details.

Hopeful
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Old 01-06-2007, 05:20 PM   #7
daughter
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tykerb

I have a question about tykerb for those who already got to use it.
I am so happy that tykerb has been working for you!! It's great to hear stories
like that, they give hope to many peole.
My mom just found out about mets to her lung and they are starting her on
taxans on the 9th. I've heard about clinical trial which is 300 miles from her
and I was thinking about calling, but how do I know if it's the right thing for her.
What are the side effect from it, I haven't seen anyone talk about it, while
I heard a lot about herceptin.
They still don't offer herceptin in Serbia where she lives. I was asking about
it last year when she was first diagnosed and again this year but no luck.
I also just saw the old thread on melatonin. Is that something that's safe for
most everybody? Is that something you buy in vitamine shop - I did see it there
or is it prescription? Thanks for all the help
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Old 01-06-2007, 06:23 PM   #8
Jean
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Becky...

What is the thought for Tykerb for early stagers like me (stage 1) I am on herceptin for 1 yr. I have 8 months to go. Should I insist on Tykerb with
my herceptin? What are your thoughts, my oncotype test came back
very high risk...recurrence score of 46, an average rate of distant recurrence at 10 yrs. of 31%......


Thanks,
Jean
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Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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Old 01-06-2007, 10:59 PM   #9
Adriana Mangus
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Question herceptin + tykerb

Michelle:: So what's next for me?. I have mets rt lung, have been on navelbine+herceptin for 9 months, then NED. Will start xeloda next week due to tumor growing back. WHen will I be a candidate for Tykerb? Maybe I misunderstood your email, are you saying that since i have had herceptin am no longer a candidate for the new drug tykerb? Please respond. I appreciate your response. Thank you Michelle.
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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 01-07-2007, 08:42 PM   #10
Ceesun
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ditto for me-would like more info. Ceesun
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Old 01-08-2007, 06:53 PM   #11
michele u
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Adriana,

What i meant by the trial is that they are not going to want to do trials with Herceptin and Tykerb together because the drug company that makes Tykerb wants that business. Tykerb is definately something that you should try. Especially with Xeloda because they are doing the trials with it now. The only concern is the insurance companies not covering it right now. All stage 4 gals that have failed on Herceptin,it sounds like they will be able to get no problem. It's the rest of us stage 1-3, that are going to have trouble getting it paid for. I'm ready for a fight will my insurance. I will do whatever it takes to prevent this from coming back.
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Michele Ulmer

dx: August 2003 stage 3b 35 pos nodes ER/PR neg Her+
4 AC 12 weekly taxol
one year Herceptin in trial
35 rad tx
vaccine trial Seattle
NED
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