I went to UCLA last week, and had an appt with Dr. Pegram for a second opinion. Dr. Pegram was recommended to me as one of the top researchers in the country, and intimately knowledgeable on Her2+ BC patients. He works in conjunction with Dr. Slaman, who was the force behind Herceptin.

He was a marvelous man, and had a great impact on me. I'll summarize a few of the things I came away with:

He doesn't feel that there is any advantage in a stage 4 BC patient toughing it out on chemo until reaching NED. NED for a stage 4 is different, as there is no cure, and the cells will always be there. Stable disease is as desirable a point as NED once you reach stage 4. The goals at this point have become length and quality of life.

He doesn't discount the possibility that today's mets patients may live 10-20 years and more managing the disease.

Crossing the blood brain barrier is still an area with alot of questions, there are some drugs in trials now that appear to be showing some promise, but nothing concrete has been proven yet.

As far as brain mets is concerened, he thinks the most important detection tool is a series of simple neurologic tests that your onc can do at your regularly appts. Brain mets can appear and start to grow in as little as a two month time period.

He believes that your body will reach a point where it needs a chemo break, and that periods of time with just Herceptin, as long as the disease is stable, are an acceptable form of treatment.

Hope this input helps, as I was also formerly considering NED to be the Holy grail of cancer, and his input has made me shift my thinking to considering this a chronic disease to be managed, while still maintaining a great quality of life.

Hi Esther. Hope your ski trip was great. Esther, how did you get apointment directly with Dr.Pegram? He gave you great info. Did he offer you any differemt treatment then the one you are already getting? As you might know, my lung mets are again growing and Iwould love to go to UCLA and get a second opinion directly from Dr. Pegram. Does your oncologist have to refer you? Please let me know. If you like, you can e-mail directly at hetrahan@aol.com. Thanks. Hope

Dear Esther -

I recall Dr. Pegram's talk at the San Antonio symposium Genentech program on Friday evening. We met him afterwards. He seemed very approachable and interested in all kinds of patients.

Did you have your scan yet to check those last two small liver mets?? Do the docs think they are still active cancer or what?? Hoping to hear some good news from you.
And also glad to hear that you had some good snow and good times in the Colorado Rockies! There is hardly any snow in the Cascade Mtns. They are talking water rationing this summer. Not a big surprise!

Thanks for this info, Esther,
I was one preoccupied with NED but I think this may have changed my perceptive, a reality check. QOL is paramount and should be an end-point on its own.
Al

As always, thanks so much for the good info on this site. I learn something new every day. I have heard that the way to live a long life is to get a chronic disease and make a pet of it. I guess this means paying lots of attention to it and taking good care of it, feeding it well and so on. I guess that is what we are all doing!

Great information Esther! I feel encouraged by his belief that we stage 4'ers can manage our disease with good quality of life being the goal. And 10-20 years sounds very good to me. Thanks for relaying his comments to us so clearly.

Love, Lolly

Hi Esther,
Wow...10 - 20 years sounds awfully good to me...thank you for handing us another bucketful of hope!
Love, Kim (from CT)

This is very interesting Esther and ironic because I have an appointment with him next week! I have been on gemzar and xeloda now for almost a year and I am totally beat. I have wanted to take a break but was afraid because I have been told that sometimes if you do that, the chemo you have been on will no longer be effective and I don't have alot of options left.

It is interesting to hear about chemo holidays and his take on it.

Wishing you well,
Rosie

Thank you Esther for your report on your visit with Dr P.
He is a very personable Dr and his genious is amazing. I can't help feeling there is going to be an explosion of other friendly chemos and future vaccines that will further extend our prognosis and lifespan.
There is hope ON THE WAY....
Warm hugs, Christine

Esther,

Thank you for sharing the information from Dr. Pegram. It's not what I want to hear, but it IS reality. Guess that's why my onc says I'll always be on chemo from here on out. It's anybody's guess as to when "out" is.

Since I've been on Taxol (again) for about 8 weeks, the scans show great improvement in some areas...and new activity in the liver and possibly neck. Can you say FRUSTRATING??!!

So next week I'm asking my onc about switching to Abraxane. From what I can gather, Taxotere is better than Taxol and Abraxane is better than all. But I know there'll always be a "but..." come scan time.

Love and light,


Lisa

Esther, That was really interesting and encouraging. My Dr. has only been working on quality of life since I became stage 4 and I always wondered why we never talked ned. But this makes me feel much better because I do have good quality and when ever I mention a chemo that I have read about here, his number one concern is always quality of my life. Patty H