how long is too long to wait for a trial?

[Andrea Barnett Budin]

In Aug. '98 when my 4th stage invasive lobular carcinoma was discovered to have spread throughout my liver, I asked to be tested for HER2. I'd been reading about it. It was still in clinical trials. But there was talk that it was going to be fast tracked by the FDA out of trials and made available for metastatic patients.

They tested HER2 ONLY in Cali by UCLA, where Dr. Dennis Slamon was. They lost my tumor tissue. I called the onc's office numerous X and the hosp. I drove to the hosp and was directed to the Pathology Dept in the basement of North Shore Hosp on Long Island. I found a woman working there. She was aware of my situation and swore she would find that sample that day and take it to the Fed Ex office herself to send it to Cali. I was pushy, but desperate, and perfectly ladylike. She saw a person, I was not just a voice on the phone. She felt motivated. And she did as she promised and her sent her a beautiful card full of my gratitude. She had called me to assure me.

I lived in NY (mostly) and in Fla. I sent all my test results to my Fla onc. My fav onc. He called me at home. HAVE YOU STARTED CHEMO YET???
No. And I explained why. He said, in the last 2 wks the tumors throughout your liver have grown and are spreading even more. YOU MUST START CHEMO NOW.

Don't worry about HER2 and Herceptin! Start on the chemo. In 8 wks we'll test you again to make sure the Taxotere is working. YOU HAVE TO START CHEMO.

I knew this onc since 1995. He was NOT an alarmist. If he took the time to call me (unbidden) and speak in ALL CAPS with !!!!!!!!! I called right away.

Herceptin was made available on Sept 28, 1998. I began Herceptin, among the the first to avail themselves of the drug, in November of '98.

Are any of your oncs reporting to you what's going on with your tumor(s)??? They should be. Only 1 (my Fla onc) called me and sped me up and revved me up and motivated me to get on chemo.

So, in turn, that's what I'm doing with you VDC.

You know that's what cancer does, it keeps multiplying, growing, spreading with every hour of every day. You can't afford to do nothing. No one knows when you or anyone will be able to avail yourself of the immunotherapy trial. No one knows if it works on someone with active cancer. I have seen it fail with active cancer. In fact worsen the situation. In the interim of stopping all tx, the cancer grew and spread and couldn't be caught. It was out of control. I don't want that to happen to you or anyone else.

It seems now is not the time to worry about the trial but to start chemo!

I'm sorry, I don't mean to be pushy, or scare you. I am trying to save your life. And I couldn't live with myself if I didn't dare to speak up.

I hope you aren't offended or turned off. I am acting out of love for a Sister I don't even know. I've been around (20 yrs) to see similar situations (including my own). All the arrows are pointing to -- go start chemo!

Speak to your oncs. Get their opinions. Based on their readings of your reports. Why haven't they been urging you to do this?

With a hug,
Andi

[VDC]

I appreciate the concern and the honesty! Really. That is exactly what I have been asking for from all of you. Just an honest appraisal.

This has been a fighting battle from the beginning. Since my cancer is "only" DCIS, (although grade 3 and necrotic to boot!) Mayo wouldn't even let me talk to a medical oncologist! (the chemo people) because chemo is not used with DCIS. It is surgery and radiation.....period. I had to fight (and I wasn't even ladylike in this case) to be allowed to speak with a medical oncologist. I was finally permitted to, but it was not without a lot of pushing and tears.

I do understand that DCIS does not compare at all to what all of you are facing and I would not even try to compare. But the thing that frustrates me the most is that this thing CAN and WILL become invasive if it hasn't already. The when and how isn't known by anyone. That is what I fear. No one knows.

Chemo isn't something they will even consider unless it goes invasive. BUT my likelihood of recurrence with current treatment protocol is somewhere over 25% and that is assuming they get it all and that everything is "clean."

Those aren't odds that I like all that well, particularly when I know that recurrence isn't likely to be a localized event.

So my choice is hard. Do I wait for a clinical trial which would greatly decrease my chances of recurrence? Or do I go ahead with surgery and radiation immediately in order to remove the risk of it turning invasive. How do you chose between those choices and how long is too long? None of my doctors seem to have any idea. None of them. Not the surgical oncologist, not the radiation oncologist and not the oncology doctor assigned to me. ....and the medical oncologist (chemo guy) pretty much laughed at me for even making an appointment to see him!

Let's just say that I'm frustrated with what is NOT known and none of my doctors are really all that helpful here.