Friday, January 16, 2009

An apple a day...?

We just came back from Dr. Gordon where we got the results from the tests Rebecca had earlier this week. The news isn’t very good.

The CT results are mixed, some shrinkage and some growth of tumor. The blood levels have gone up a lot… From 58 to 83 to 129. The combined reading of these results is not definitive but ‘probably’ indicates that the new drug, Faslodex, is not being effective.

The options that we are considering are:

Give Faslodex more time and check in again in 2 months.


Start chemo

The first chemo that would be on offer is one of the taxanes, Taxotere or Taxol, they have slightly different side effects but have in common that neither have significant nausea nor fatigue side effects. They do cause hair loss.

There would also be some additional treatments that could be administered along with the chemo such as Avastin or Sutent. These are both ‘targeted’ drugs that use different strategies for disrupting the processes by which cancer grows at the cellular level. Avistin was recently approved by the FDA for breast cancer and Sutent is in clinical trials.

Either way, if stay with Faslodex or go to a Taxane, the expectation is that Rebecca will still be up and about and ‘doing her thing’.


Anonymous said...

Hello there. My mother has been on Faslodex for seven months and it has worked wonders for her, so I feel obligated to write to give you some important information. First, after this drug was prescribed for my Mom, I did a ton of reading and one of the things I learned is that there are scientists who argue that there is a misconception about Faslodex (fulvestrant)'s effect on tumor marker blood test results (even among oncologists) -- a misconception that is only now slowly being dispelled by research that shows that AN INCREASE IN TUMOR MARKER NUMBERS IS OFTEN ACTUALLY A SIGN THAT THE DRUG IS WORKING -- eg a 2006 European study showed that tumor marker numbers went UP for a large percentage of patients for X number of months after starting the drug, even when Faslodex (fulvestrant) WAS EFFECTIVE -- EVEN WHEN IT DID WORK for patients (as proven by imaging scans.) And top oncologists at top cancer centers (at MD Anderson and UCLA) confirmed to me that they have found that to be true. One theory is that as the drug begins to shrink the tumor(s), bits of the eroding tumor tissue start appearing in the blood, and therefore increase tumor marker numbers in blood test results. And that's what happened to my Mom -- her marker numbers kept going up (like the numbers you listed in your blog post) but (HURRAH!) her CT scan 6 months after starting Faslodex showed significant tumor SHRINKAGE -- even though she has liver metastasis!! (And she has been doing great, with relatively minor side effects -- and she didn't have to lose her hair.) So from what I have read, scientists are trying to "get out the word" that Faslodex should not be stopped simply because blood tests show an increase in tumor marker numbers -- because that might actually be a sign that the drug is working. That Faslodex should not be stopped within the first 6 months without "radiological verification" that the tumors are getting worse. And by the way, her CT scan at 2 months did not show shrinkage yet, but it did show that Faslodex had stopped the growth of the tumors -- and "stable disease" is also a very good thing! And then four months later (in December) the CT scan did show significant shrinkage -- so the oncologist said to just stay on the Faslodex. That oncologist (at the top-ranked cancer center in the country) said that he has seen Faslodex work for years for some patients. I of course don't know the particulars of Rebecca's case (e.g. I don't know how long she has been on Faslodex), and I am not a doctor (I'm just a concerned daughter, who has done a lot of reading regarding this drug), so I don't mean to sound like I am trying to tell Rebecca what to do -- but I CAN tell you that scientists say that your decision should not be based solely on tumor marker blood test results, because those can mean just the opposite of what you fear they mean. Here's a quote from the conclusion of that study: "Overall, both CA 15-3 and CEA appear to be poor prognostic markers for determining progression in patients receiving fulvestrant." (And I would add CA 2729, because that marker went up along with the CEA in my Mom's case, and yet my Mom's tumors DID shrink significantly by 6 months.) The other thing I would tell you is that the dose matters. The latest research is showing that the optimum dose is probably twice the dose that was initially introduced -- in other words, that Faslodex 500mg once a month is markedly superior in efficacy to 250mg once a month. And that the drug is effective for a longer period if the patient is on the higher dose. And that the "tolerability" and safety profiles are just about the same. The results of the definitive big study comparing the lower dose with the higher dose don't come out until around June or July, but previous studies are pointing to 500mg as the best dose. And that's what my Mom has been on, thanks to the UCLA oncologist's advice -- and HURRAH it has worked well for her!! A huge relief, compared to where we feared we'd be at this point. So I would encourage you to think twice before giving up on Faslodex -- and maybe ask her oncologist about increasing the dose to 500mg, if she has been on the lower dose. Here's wishing you all better times in the New Year! (I should mention that I was recalling that stuff about the European study off the top of my head. If you want to read the official details, the title of the study is: "Prognostic value of monitoring tumour markers CA 15-3 and CEA during fulvestrant treatment." Here's a link to click on:

Joel Jacobs said...

Sorry the news was not better. It's a very difficult situation.

For what it's worth, Hope Rugo seemed to feel strongly that Taxol was as effective as Taxotere, and had fewer side effects. I think they can even give it more often, which is a plus.

Good luck, and let us know how we can help.

Brita and Allen said...

Thank you for keeping us up to date, so that we can follow the winding story. We are keeping you in our thoughts and sweetest prayers...

Rebecca Dale said...

Who is the Anonymous? If you do not want to say who you are, just e-mail me. Thank you so much.