next step?

Now that my wife has been diagnosed with mets to lungs and liver, I'm not sure what our best course should be and I'm hoping your experiences and thoughts might help...
My wife loves her doc and I like him alot as well, but I want to make sure that we are doing all that we can. His group has formulated a course of action for her but happily they are waiting to hear back from a her2 specialist from Sloan. They are checking to see if there is anything else that they should be considering. I've asked him to look beyond Sloan as well. I love that they are conferring with Sloan but I still wonder if we'd be benefit at all from going direct. My feeling is that there are probably benefits of each. With her current practice, she feels truly cared about which is so very important to her. In a larger research facility, from what I hear, you don't always get that same personalized attention and sometimes the study becomes more important than the individual. As an example, the doc I had originally spoke with at Sloan never would have been willing to give her herceptin off-protocol like her current doc would have. Part of my concern as well, stems from the fact that he mentioned Taxol again as opposed to Taxotere which from all that I've read seems to be more active than Taxol. It seems that so much is being done at other facilities and I want to make sure that I do all that I can to protect Caryn.

I welcome any insight you might have on dr's, studies, treatments, etc. I have been very impressed with Andrea and Nora from The University of Washington and if either read this, I weklcome their thoughts.

If it helps, she went through dose dense (every 2 weeks vs the standard 3) AC (4 cycles) followed by dose dense Taxol followed by radiation and she was scheduled to start Herceptin and Zometa. The Herceptin has been delayed until the treatment plan is confirmed.

Thanks and love to all, Eric

Thanks in advance, Eric

Eric -
sorry to hear that your wife has to activate her fight again.
Seems like there is a lot of discussion about your wife's situation, which is excellent.

There is one thing I do NOT understand. Why is she not being given Herceptin NOW once they have confirmed the HER2 status? She will have this drug anyway with WHATEVER they decide on, so why not get the loading dose and get after those mets pronto. My med onc would not wait! Zometa is more for bone strength (I take this) and could wait - but I would ask about the Herceptin.

Eric, I totally agree with Steph about the Herceptin. I see no reason to wait. It sounds as though see is getting good care otherwise. And you're right on about the importance of her feelings toward her treatment team. Know that there is no one right answer. What works for one person will not work for another. But your research is vital. Keep on top of the doctor with your questions. And make sure you get answers that make sense. We would love to communicate with your wife, as well. Please let her know this and that we're waiting to be a strong support to her. (That doesn't mean you should go away. We love you, too!)

Love and light,

Lisa

I agree about the herceptin. Doesn't matter what else she gets, the herceptin can be started right away. Mine started the day her2 status was confirmed.
As for the right plan, get as much information as you can get, and until you feel the doctor is concerned about her and knows what he is talking about, keep getting those other opinions.

Hi,

I've been emailing personally with Eric so I'm going to cut right to one idea I just want to put out there as to why Caryn (or anyone) might not want to start immediately on herceptin: and that is if there's a possibility that she might want to enter a clinical trial (for instance there's one in many centers around the country testing herceptin+gefinitib--a.k.a. Iressa) that requires that the person not have used herceptin previously.

All the best,
Jeff

I see - so they may want to BEGIN the herceptin with the other drug at the same time in a trial. A decision like that should be made ASAP, and not wait for these mets to take hold any farther! The sooner she gets on treatment, the better for her peace of mind, for Heaven's sake.

My med onc started me in a trial IMMEDIATELY for hard-to-treat mets. This trial worked for me and was for women either with or without herceptin. The main trial drugs were Navelbine and Taxol.
Personally, I would leave Iressa for later, if I needed it. Go with what has worked for so many and is available NOW.

Thanks to all. Jeff is right with the docs thoughts. They don't want to start her on herceptin only to find that it excludes her from a trial. He did say he would have an answer very shortly. Since Caryn's doing ok with what should be a short wait and, from what I've read here, the wait should'nt effect her prognosis, I thought what the doc said made sense. I do however value your experience and opinions and welcome any additional thoughts.
Love, Eric

Eric,

The reason your wife is doing taxol instead of taxotere is because she's already done that taxol). They like to switch the drugs around so that she won't grow "immune" to them. I agree about not jumping to the herceptin. Leave your options open until you get a few treatment opinions and options.
Cathy

Why don't you try Cancer Treatment Centers of America at www.cancercenter.com for another opinion? They will provide transportation for you and your wife to travel to their facility. They offer all the latest traditional technologies along with complimentary. We were extrememely impressed by the way they treated us, like we were part of their family. I have stage 4, her2+++, er pr neg, breast cancer. I had radiation treatment at Cancer Treatment Centers of America which resulted in a 30% reduction of the mass in my chest, new bone replacing lesions in my spine, and CA15-3 tumor markers reducing from 345 to 111. I am currently taking chemotherapy from a local provider. I take taxol, carboplatin, and herceptin 3 weeks on/1 week off and zometa monthly. So far the treatments have been very tolerable.

I'm surprised they'll provide the travel. Are they relatively new and trying to build a reputation? I'll give them a look. Thanks for the info.

Eric

They have been around since the early 70's. They offer a team approach to Integrative care that combines medical, nutritional, physical, psychological, and spiritual therapies. Call them at 847-372-7421. The Oncology Information Specialists will give you allot of info. over the phone along with a packet sent to you that includes a video of the facility. It took us about 10 days from the time we called to get our appointment, as we had to gather up all of our records to be sent prior to our visit. Our first appt. was March 15, where we met with nurse, medical oncologist, nutrionist, pastor, and physical therapist. On March 16, I had a bone scan, and CT scan of head, chest, and abdoman, and a mamogram. On March 17, I had an EEG, EKG, and Ultrasound of the breast. We also met all the other members of the team. On March 18, we met with the Radiation Oncologist and the Medical Oncologist to go over all the results of the scans and discuss the treatment plan. They don't fool around there. It took nearly a month to get the results of some of these tests back at home. You know how nerve wracking it can be to have to wait for test results. I think you and your wife will be impressed. God Bless You.

Eric,

I did not have the dose dense treatment, but had 4 of AC and 4 of taxol every 3 weeks, followed by radiation. 10 months later it went to my liver. I went on weekly treatments of taxol/carboplatin/herceptin and after 11 weeks the tumors were all but gone. I did continue this regimen for a total of 32 weeks. I am happy to report I am NED. My oncologist told me the latest findings from ASCO confirmed that weekly taxol is much more effective. I worked the entire time I was in treatment and suffered no ill effects whatsoever. Taxol & carboplatin are commonly used to treat lung cancer, so I would think it might work as well for her as it did for me. Good luck.
Kitty

Great news! I'll post what treatment the doc suggests as soon as it's confirmed. Thanks, Eric