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Old 04-05-2007, 06:44 PM   #1
Barbara2
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Can you think of Her2+ questions for Dr. Pegram?

I have an appt on Thurs. April 12th, 2007 to visit with Dr. Pegram at the UCLA/Santa Monica Cancer Center. I have been writing down questions as I think of them, and hoping I don't overlook something and later think, "Man! Why didn't I think to ask about......"

Here are a few of the things I've jotted down so far:
*His opinion of the vaccine trials. What are the differences?
*I know it is too early yet for results of 1 year herceptin vs 2 years, but I will still bring it up.
*None of early stage breast cancer patients can tell yet if herceptin is working for them if they are NED,..How long do you think these people will stay NED?
*Is the combination of an AI and Herceptin enough to block all of the "cross talk?"...should NED ask to add tykerb to that combo? Is the AI apt to stop working over time?
*His opinion of the importanace of diet and exercise in preventing recurrance
*The possibility of "maintainance herceptin" for those who are still NED
*supplements

If you think of anything else that would be of benefit to any of us, please let me know.

(Tomorrow I'm bringing my computer in for repair, so when I check this site on another computer, I suppose I will not be recognized on the Her2 site. I'll be checking back.)
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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 04-05-2007, 06:51 PM   #2
Sherryg683
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Ask him his opinion of the usage of Herceptin with Tykerb as preventative treatment, i'm stage IV in remission..sherryg683
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Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
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Old 04-05-2007, 09:39 PM   #3
heblaj01
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Barbara,
Please ask Dr Pegram what he thinks of the Tykerb+ Herceptin combo for advanced breast cancer based in particular on the very positive comments of the phase 2 trials in the neo adjuvant setting that came out after the SABCS in december 2006.
Also does he believe adding Tykerb after becoming resistant to Herceptin is better or not than starting with the combo?
Finally if the finding in mice that Tykerb inhibit IGF-I (which is involved in one of the way resistance to Herceptin builds up) is assumed to be true in humans what would that mean for the combo & for keeping Herceptin even after progression?

Refs:
http://www.breastcancerupdate.com/do...8_06_Chang.mp3

http://mct.aacrjournals.org/cgi/con...bstract/6/2/667
Lapatinib induces apoptosis in trastuzumab-resistant breast cancer cells: effects on insulin-like growth factor I signaling

P.S.
If that is not too much, ask him for an update on the comments he made more than one year ago that ongoing trials of Fulvestrant+ Herceptin could be important in preventing reccurencies in ER+ tumours caused by crosstalk between Her-2 & ER

Last edited by heblaj01; 04-05-2007 at 09:49 PM.. Reason: P.S. added
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Old 04-05-2007, 11:57 PM   #4
harrie
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Consult with Dr. P

I had a consultation apt with Dr. P in January. It was primarily to decide whether or not chemo would be beneficial.

I taped our consult apt with his permission, and I am very glad that I did.

At my apt, he was able to give me a recurrence rate based on the adjuvant.com evaluation which took into consideration the HER2 and Oncotype Dx.

I wish I had asked him what his opinion is in regards to the future use of herceptin alone without chemo for the HER2neu protein. To me logically it would seem effective, but I think most studies show it with chemo.

Hope this helps.
harrie
__________________
*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 04-05-2007, 11:59 PM   #5
harrie
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Ned

What is NED?
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 04-06-2007, 03:38 AM   #6
LOLLI
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No Evidence of Disease
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Old 04-09-2007, 06:50 AM   #7
dlaxague
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FISH value question

Hi Barbara,

I'd like to know if Dr. Pegram is aware of any research, either completed or planned, that looks at prognosis and response based on the actual numbers of the FISH ratio, rather than simply positive and negative for HER2neu. There seems to be more interest (finally) in quantification of ERPR r/t to same. I wonder how they decided what the cutoff is, for FISH numbers?

Tell him thanks for whatever he has time to answer, and thanks to you, too, for offering to do this.

Debbie Laxague
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Old 04-09-2007, 12:09 PM   #8
Jean
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Only 3 days to go....exciting

Wow Barbara,

You are certainly taking many of us with you on your visit (in spirit)
have another question. What is the latest time that herceptin/with or
without chemo has been given after initial dx?

There is another member who was curious about this.
Best of Luck on your visit.

Many thanks,
Jean
__________________
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 04-09-2007, 01:36 PM   #9
Barbara2
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I'll try this one more time...this is my 3rd attempt at replying to this message...it said I wasn't logged on, but I was. My computer is on the fritz, so I'm using a different one...that could be the problem.

I spent at least 2 days in preparing my visit with Dr. Pegram. The info and questions are typed out for him and us to read, in hopes of expediting the conference.

Thanks much for your ideas and help. You will all be with me in spirit. We are in the same boat together battling the enemy of cancer. I'll send greetings from Christine and the Her2 Support members.

The weather is making me a bit nervous. We are flying and on our departure day, 3-6" of snow is expected, and snow also on our return date. There is an advisory scrolling along at the bottom of the screen...
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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 04-09-2007, 05:09 PM   #10
eric
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How about his thoughts on herceptin's continued effectiveness for stage 4 patients who have recurring while on maintenance herceptin? Thank you!
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Old 04-09-2007, 08:05 PM   #11
Melissai
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Hi! I was reading that someone else was asking about FISH scores. I am wondering what his opinion is about herceptin effectiveness for patients with very low/borderline positive FISH scores(2.1) verses patients with a much higher score. And what his opinion is for patients that have tested borderline on IHC and 2.1 on FISH which in a recent article sounds like this may be a borderline result as well. I am also interested in his opinion about the estrogen topical creams as Becky had brought up. I love any feedback on these subjects. Thanks so much. Melissa
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Old 04-09-2007, 11:35 PM   #12
harrie
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estrogen cream

Regarding the use of estrogen cream. I am ER and PR positive and my oncolgist does not recommend resuming the use of estrogen cream. I recently asked specifically about Premarin Vaginal cream. I was using it very sparingly for a few months just prior to this past occurrance. I don't know if it was coincidental, but it was 7 yrs since my DCIS in 1999 and my IDCIS this past Nov. My oncologist recommends I consult my gyn about the use of nonhormonal options such as REplens, astroglide, or testosterone cream.
__________________
*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 04-17-2007, 12:05 PM   #13
Margerie
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Hi Barbara-

How did the meeting go?
__________________
Are we there yet?


Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
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