Hang in There Hope

Dear Hope,

Hang in there, you're doing great and asking the right questions. First, let me summarize what I know about your case. It will help me understand your facts and allow others to provide specific comments.

1. Diagnosed in Oct 2002 and placed on Adriamycin and Taxotere as first-line treatment.

--What is your HER-2 status and what test was used to measure it (IHC or FISH)?
--Is your breast cancer estrogen positive?
-- Have you had a whole body PET scan recently and a separate brain MRI?

2. Developed bone and lung mets. Put on Herceptin and Taxol.

3. Bone mets resolved but lung mets progressed. Put on Herceptin and Navelbine.

4. Lung met has progressed and your deciding what drug or drugs to use next. Doctor wants to use Xeloda without Herceptin and she told you that there is no evidence of Xeloda and Herceptin being used together.

Hope, if I have anything wrong above, please feel free to correct me.

Now, let's get to your questions. I have not covered them in the order raised but bear with me.

1. Second Opinion. This is a no-brainer. You should absolutely obtain a second opinion and additional opinions as warranted. UCLA is an excellent choice. As you know, Dennis Slamon (whose research lead to the discovery of Herceptin) is based there as well as Mark Pegram. Both have written extensively in the field of HER-2 positive breast cancer and have participated in extensive clinical trials involving herceptin. Even if those doctors are not available, there is no doubt that their group also knows all things related to herceptin and HER-2. These guys have to be considered among the very best in the country on the topic of HER-2. Christine, who founded this website, resides in San Diego and may have additional recommendations for local doctors. I have also been impressed with Dr. Park at UCSF, Melody Cobleigh in Chicago, Matthew Ellis in St. Louis, and Charles Vogel in Florida.

2. Xeloda/Herceptin Issue: Please read all of my posts to Chandi below including the cross-links. I think it is fair to say that Velva is living proof that Xeloda and Herceptin have been used together and have been, at least for her, effective. By way of technical evidence, an article written by Mark Pegram (UCLA) in 2000 notes that based upon in vitro testing (i.e., in test tubes), Herceptin and 5-Fluoroucil are "antagonistic." This fact may be important because your body will convert Xeloda into 5-Fluoroucil. In theory, or at least in a test tube, the two drugs may work against each other. Your doctor should double check this fact with UCLA and see if more current information is available.

Now, I am aware of at least one closed U.S. clinical trial that has combined Herceptin and Xeloda. I have provide you with the cross-link below. My thought is that you (or your doctor) can contact the medical group conducting that study and obtain information from them as well.

If you want to continue with Herceptin, talk to your doctor about the combination of Herceptin, Taxotere, and Carboplatin (Paraplatin™). TCH is quite an effective combination but quite potent. I would certainly like to know your HER-2 status by FISH measurement when making the decision to continue Herceptin.

Herceptin and Iressa is another combination that you haven't tried. This combination addresses overexpression of HER-1 AND HER-2. Be aware that you can be tested for HER-1 or EGFR overexpression. It is estimated that this co-overexpression occurs in about 10% to 20% of breast cancer cases. A similar strategy is to try GW572016. This drug also addresses any potential overexpression of HER-1 and HER-2 and is generally used when Herceptin fails. I do believe that the UCSF vaccine APC8024 addresses this same issue as well. Additional clinical trial treatments are listed in my posts to Chandi below, dated April 8.

3. Radio Frequency Ablation for Lung Mets: Hope, I not aware of RFA being used for lung mets outside of Kidney cancer and colon cancer metastasis. I'll try to see if I can locate more info for you but I would sort through the chemo drug issues first by obtaining second opinions (and more if needed).

4. Taking More Than One Chemo Drug at a Time: I think this issue is less settled than implied by your doctor (i.e., the decision to use a single drug in serial fashion or use multiple drugs at once). My impression was that doctors like to knock back metastasis and get you to NED status and then move to monotherapies, assuming advanced age is not an issue. I know that several oncologists have commented on this topic at www.breastcancerupdate.com. I'll try to pull one or more of those articles together for you.

5. Keep the faith! You still have many options with respect to your treatment. As I have mentioned previously, the speed of cellular biology technology is moving a breakneck speed. Contact UCLA (and others if necessary) and get the best and brightest on your team. With a name like Hope, you're gonna beat this thing.

Game on girl! Let me know if there is anything else I can help you with by posting to the group or contacting me via email.

Paul, here are answers to the questions you asked me.
1. I am HER-2+++ and it was measured by an IHC test twice. Once when I was originally diagnosed on the breast tumor and in November,2003, through a broncscopy, they took tissue from my lung tumor that is growing and did the IHC test on that too. Same Result. I am also ER/PR negative. I have never had a PET only CT scans. My onc. says there is no need for a PET because there is no question of what is happening to my tumors.

2. When originally diagnosed, I was already Stage IV with mets to lung and bones. in December, 2002, I switched oncs. and came to UCSD. My present onc. stopped Taxotere, but continued me on Adriamycin and Taxol and added Herceptin. This regimen stopped the growth and from April,2003 to August,2003, I was considered "stable" and was given a rest from chemotherapy, but continued on weekly Herceptin. Onc. put me back on Taxol and Herceptin in August, 2003, to see if I could get shrinkage again. It did not work so onc. added Carboplatin to Taxol and Herceptin(TCH) I had this triplet of chemos until November, 2003. Everything remained stable except for this same aggressive lung tumor. It kept growing, so onc. decided to put me on Navelbine and Herceptin. This is where I am now. Navelbine did not work after taking it from November to now. It is so strange that all of my other lung mets are stable except for this one tumor.

Paul, what is your e-mail address so I can e-mail you directly with some more questions as I think about them. Thanks, again. May God bless you.