Recommendations For Top Her2 B/C Oncs.

Friends,

I have recently posted times about getting Herceptin more than 12 months out. Yesterday I posted about a plan presented to me by a local onc. where I would get Taxol and Herceptin even though I am NED. While I am inclined to go for it, I would love to visit with a really top notch oncologist who specializes in Her2 B/C at a highly regarded research facility (e.g., M.D. Anderson or Sloan Kettering). I would greatly appreciate any names of the top doctors who you think would be appropriate to consult.

Thanks so much to all of you who have responded to my prior inquiries. You are such a source of inspiration.

Be well.

Cynthia

I, and many others who are more than 12 months from our last chemo, would love to know what you find out. In fact, I also have considered asking the opinion of a specialist.

I am 27 months out of 6 treatments of CEF chemo, no Taxol or Herceptin. Recently, my onc agreed to 52 treatments of the herceptin. Had #5 today. He said he would give me 12 weekly treatments of Taxol, if that is what I want. I am still considering what to do. I recently read an oncologist's opinion that he would give the herceptin to someone 12 months out, but probably would not recommend adding the Taxol.

I hope you hear from others as to what their oncologists are recommending.

Blessings to all....

I would love to have names too. I'm struggling with who to go to for a third opinion. It seems that the logical choice would be someone really experienced in this field.

Dr. Joyce O'Shaugnessey - Baylor Dallas. Among the best in BC

2 names highly recommended to me from Sloan...Larry Norton (1st choice for her2) and Clifford Hudis.

Just to add my two cents:

The guys at Sloan tend to be conservative (and arrogant, I think).

Debu Tripathy in Texas seems totally up on her2 matters and is really nice, to boot--answered emails very kindly.

Matthew Ellis at Washington University in St. Louis is also a her2 expert, nice guy, also a groundbreaking researcher on hormonal treatment . Also answered my emails warmly and called to discuss stuff with me.

Edith Perez (in Florida?) is a major researcher/clinician

George Sledge and Kathy Miller, both in Indiana are key figures in various her2 trials.

Mark Pegram at UCLA is a major player in her2 trials

Aman Buzdar is the guy at MD Anderson who led the neoadjuvant her2 trials.

Harold Burstein and Eric Winer, at the Dana Farber are big guns in her2 bc (I've met Burstein, and I think he's kind of a jerk).

In Canada (Vancouver, I think), Karen Gelmon is great.

All the best,
Jeff

Hello all,

I'm from Indianapolis, and can attest to the quality of care of Drs. Sledge and Miller. I am also just starting Herceptin treatment after being out of treatment for one year.

My oncologist consulted w/Sledge about starting me on Herceptin only, which we did this month. It sounds as though some docs are choosing to be assertive in treatment of those of us that have not had recurrences.

Ann

I am from the San Francisco Bay Area; I do not know that many local onc's, but all I know is that Dr Trepathy used to work at UCSF (U of Calif, SF), before relocating to Texas. UCSF greatly misses having him there; I think he just left only 2 years ago; they gave him a lot of praise.

Dr Veach at Sloan is, although, not an expert on her2 but instead lung cancer, I think). He is mainly appointed to quickly review out-of-town patient cases (whoever contacts Sloan), and he would refer the patients to onc's in their home regiional areas.

Good luck!

To all who posted, I can't thank you enough.

Cynthia

Cynthia,

Dr. Kathy Miller from U. of Indianapolis. I credit her to saving Linda's life, although we are from Canada.

Al

Barb, was wondering where you are located, where you are being treated, and by whom. I have always felt I didn't get quite enough treatments and would like to consult with an oncologist re such. Thanks in advance

Ann, did you have Herceptin before? How many treatments will you get?

I am from South Dakota. The reason my onc is giving me herceptin after being 27 months out of my last chemo, is because I have talked about wanting/needing herceptin since being diagnosed with Her2+ disease.

I was not able to enter a trial or receive herceptin off trial because of a heart rate problem which I had surgically corrected after chemo was finished. After the trial results were published this past May, I again discussed herceptin with him and he agreed to give it to me.

I then asked the Taxol question, which no one really seems to have an answer to, but he said he would leave that decision up to me, and he would give it to me if I requested it. I have yet to make that decision.

So I don't think my onc is different than most. Women need to keep pressing for answers and be part of the team when making these tough choices.

Hope this helped. I will answer more questions if you wish.

I may be beating this drum too often, but I do think this group of people IS large enough to be worth a clinical trial since the oncs clearly don't have a consensus (i.e., they just don't KNOW enough to say).

Patients and oncs working in this category are going at it hit or miss and have to stumble around as best we can, and at the end of all this effort and expense there will be no data to learn from.

I believe there are years and years of currently NED HER2's who were treated with either CMF, CEF, CAF, or AC without getting Herceptin, and who would be willing to consider participating in a clinical trial where some would get a taxane with Herceptin and some with just Herceptin.

I will try a poll, to see what the level of interest might be.

AlaskaAngel

Yes, I had Herceptin w/Navelbine in the spring of 2004. I believe that I will be on it for an extended timeframe...not sure.

I'll take it as long as I can get it!

Ann