Newly diagnosed – in a quandry about treatment.

[Monica]

Hi, I’m new to the board and to breast cancer. I’ve been very impressed by everyone’s thoughtful responses on the board. I was recently diagnosed with breast cancer in both breasts. My left breast had 1.7 cm. tumor, stage 2, Her2+++, grade 3, 2 of 6 lymph nodes positive, ER and PR positive. My right breast cancer was carcinoma in situ. I have had a lumpectomy on the left side, and they removed the cancer from the right side. Now I’m looking for the right treatment. I found out today that I can’t participate in the herceptin trial because of cancer in my right breast unless I have a mastectomy on my right side! This seems so crazy, but that’s my choice. (They're calling the researchers to confirm.) Other possibilities would be to try to go off protocol or perhaps look for a herceptin vaccine trial or just go for standard treatment of cytoxin, andriaymycin, plus taxol. I feel extremely frustrated because I wanted to participate in the trial. Any advice or thoughts would be greatly appreciated.

[Lolly]

Hi Monica,

Welcome to our group, you'll find lots of help and support here, and a few laughs along the way!
You seem to be remarkably well informed for being newly diagnosed, that's good. You're already one step ahead.

It does seem like an arbitrary criteria for the trial, maybe it's a mistake. If not, and you can't get in that one or find another, my second choice if I were in your place would be to try and find a vaccine trial. The ones I've read about so far seem to exclude prior Herceptin use, so I would go for the vaccine first rather than Herceptin off protocole, knowing that Herceptin is there if there's a recurrence. That may not be the direction you're leaning in, of course, just my humble thoughts.
Hugs,
Lolly

[Linda in Calif]

Hi Monica: Welcome to the HER2 site. What Lolly said is true...that you might want to consider a vaccine trial. Prior use of herceptin does eliminate you from all of the ones I've found so far. Another area to check out are new drugs that are being developed to stop the HER2 response such as GSK572016 which is suppossed to work even better than herceptin. Good luck with your search! Linda

[Monica]

Just wanted to welcome you & applaud you for working so hard to get into a clinical trial.Lolly's suggestions are brilliant.
Research is the only route to find a cure for us and I believe we all have to do our part (whenever we feel ready) to contribute.
Please look to us for information, wisdom, courage, comfort, support...whatever you need.
Take good care & keep the faith,
Jessica

[Kitty]

Monica,

I know how disappointed you must feel but remember just because you qualify for a trial, it does not guarantee you will be selected to receive the herceptin. I entered the trial you are talking about in hopes of receiving herceptin, but since a computer randomly selects who is placed in which arm of the trial, I was selected to receive the gold standard; 4 A/C, 4 Taxol. I was very disappointed but decided the herceptin would be there for me later if I needed it. Later is here now and I am happy to say that after 11 weeks of receiving taxol/carboplatin/herceptin the mets to my liver are almost totally gone. The other thing to consider is that Adriamycin (the A in AC) is toxic to your heart and part of this trial is to determine if adding herceptin with Adriamycin will be even more harmful to your heart. As far as the clinical trials for the vaccine, you must be between initial diagnosis (completed treatment without herceptin) and prior to recurrance. Your best bet is to take the gold standard treatment or find someone who will give you herceptin off label. Keep in mind most insurance companies will not pay for herceptin if off label because at this point it is only approved for metastatic breast cancer and the drug is very expensive. Keep the faith there are lots of options and lots of long term survivors.