Can you think of Her2+ questions for Dr. Pegram?

Barbara2 · 04-05-2007, 06:44 PM

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.)

Sherryg683 · 04-05-2007, 06:51 PM

Ask him his opinion of the usage of Herceptin with Tykerb as preventative treatment, i'm stage IV in remission..sherryg683

heblaj01 · 04-05-2007, 09:39 PM

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

harrie · 04-05-2007, 11:57 PM

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

harrie · 04-05-2007, 11:59 PM

What is NED?

LOLLI · 04-06-2007, 03:38 AM

No Evidence of Disease

Christine · 04-06-2007, 06:25 AM

Barbara,

You have chosen the best of the best. Dr. Pegram has been associated with the HER2 Support Group for some time now and is a leader in cutting edge research.

Say hello to him from me and tell him that we are looking forward to seeing him at the ASCO meeting in 7 weeks.

Hugs
Christine

Becky · 04-06-2007, 08:03 AM

Dear Barbara

There are controversies in certain aspects of Quality of Life issues for those of us who got oophorectomy followed by an AI. No estrogen is a good thing in one respect but can be horrific if one experiences urogenital side effects (ie: bad and constant bladder infections, vaginal dryness and infections). What is Dr. Pegram's opinion of using topical estrogen replacement such as estring (and its correlation to low to no systemic absorption of estrogen into the bloodstream)?

Thank you in advance. I would also be interested in a question you already brought up - the 1 yr versus 2 years of Herceptin data via the HERA study. We know the data isn't available yet but does he know when it will be. How is the disease free survival % of the adjuvant trials holding up? Is there still statistical significance or is adjuvant Herceptin just delaying recurrence for those who would recur?

Have a nice Holiday weekend and thanks for thinking of us here on the board.

Jean · 04-06-2007, 11:30 AM

Dear Barbara,

I was wondering (and of course it maybe way too early) if Dr. Pegram has
any idea or opinion of PTEN 13 status....is there anything happening on the
horizon?

What is his opinion of having Markers done?
What is his opinion of a health Maintenance program when considering scans?
Should they be done once a year? Esp. brain scans.

I ask this since so many onc. do not recommend having markers or scans.

Also in the event he does not have any feedback on the herceptin duration
one yr. verses 2 yrs. for the early stagers, does he think we should push
the treatment out just a bit further for those that have a high recurrance
rate?

Thank you Barbara,
God Bless and wishing you the best with your Consult.

Jean

04-06-2007, 12:22 PM

Harrie,

You mention that your doctor gave you an evaluation via adjuvant.com regarding recurrence possibilities, and that it took into account HER2 status and the Oncogene test. I am wondering if you are speaking of adjuvantonline.com, which is the database that my cancer clinic uses for recurrence and mortality rates. The adjuvant online site I have access to shows the latest version as 8.0, which currently does not take into account HER2 status, although it does give predictions if one is ER negative. I read somewhere that a newer version, 9.0, is being readied and will include HER2 status as a prognostic feature. Do you know if your doctor had access to Version 9.0. I'd love to see how HER2 status plays into overall predictions. Thanks.

Barbara2 · 04-06-2007, 08:27 PM

Thanks, guys, for your excellent questions. I really have no idea how much time I can expect with Dr. Pegram. If I come with a pile of questions, how much time do you think he will give me? I'll try to have them in a priority order of some kind. I'll ask my husband to write answers as fast as he can!

Someone mentioned a tape recorder...is there such a thing as a small, disposable type? That is a good idea, though.

Jean, you mentioned PTEN 13. Are you asking his opinion of the test, itself? I'm not sure of the meaning of 13.

Margerie · 04-06-2007, 08:39 PM

All very good questions. Hoping he can answer all of them. Maybe type them up and give him a copy, so he can read (probably faster) and you (or hubby) can write the answers on your copy. I am pretty sure there are inexpensive recorders available at radio shack or maybe target.

Thanks for thinking of all of us!

harrie · 04-08-2007, 11:41 PM

Grace,
You are right, it was adjuvantonline.com. Dr. Pegram is the one who gave me the scores when I went in for the consult. He came back with two "Shared Decision Making" scores. Before he left my room, he said it was the adjuvantonline.com. One of them did not include the HER2 or the Oncotype score so my benefit from chemo was very insig. With the second paper, he said included the HER2 as well as the recurrence score of the Oncotype that I had taken previously. Those results showed a 4% benefit. That result showed the benefit went from 84% to 88% with chemo. With those results, he said in his opinion it is worth doing. ANd he agreed with my oncologist's recommendation of TCH, 4 treatments, but if I do ok, then go for the optimum of 6 txs.
I am currently finished with #4 and will be going for #5 in a couple of wks.
Maryanne

04-09-2007, 06:31 AM

Thanks Maryanne,

I was curious as we are very close in our pathology, although I am ER-, which puts me at a greater chance of relapse. Thanks.

dlaxague · 04-09-2007, 06:50 AM

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

Jean · 04-09-2007, 12:09 PM

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

Barbara2 · 04-09-2007, 01:36 PM

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...

eric · 04-09-2007, 05:09 PM

How about his thoughts on herceptin's continued effectiveness for stage 4 patients who have recurring while on maintenance herceptin? Thank you!

Melissai · 04-09-2007, 08:05 PM

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

harrie · 04-09-2007, 11:35 PM

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.