Dr. Rugo weighs in

chrisy · 01-18-2007, 10:46 PM

Hello friends,
Today I had my quarterly or so visit with HOPE (Dr. Hope Rugo at UCSF). She's one of the top breast oncologists in the country, and a remarkable woman as well as potential track star - in San Antonio she presented at 2 simultaneous symposiums, racing between the two.

I asked her about some of the topics that have been getting lots of airtime on the board, and here's what she told me. Note, this was her opinion for a specific patient (me), and of course everyone is different. I didn't ask her for citations, but she is a true researcher and datahound so I am confident her opinions are well grounded in data.

1. Herceptin weekly vs. 3 weeks: She really thought either was fine, there is data showing equal efficacy for either. In terms of toxicity, she also thought either was fine, although they do have a patient who has bad heart history and they give her weekly instead of 3 weekly.

2. Adding Tykerb to maintenance Herceptin while in remission - there is not enough data showing how these 2 agents work together, either in terms of slowing progression or in terms of toxicity. For me, as Herceptin is working well she would not add Tykerb but instead would save it for later.

3. Vaccine trials - She continues to have interest in this area despite the fact that after 25 years of research there is only one (the HPV) cancer vaccine approved! She spoke very favorably of the UW trials and told me that that would be a great thing for me to participate in (although with the usual caveat about I would be contributing to knowledge but there is no data that it would help me!)

4. Brain MRI - Yes, stay vigilant. Her2 likes to go there, but "it's so treatable" when caught early. That topic is sort of a "no brainer" around this board, but it was good to hear this from a top doc!

5. What else is coming up...remember, this was as relates to me (not ready to get off the Herceptin horse), she mentioned more upcoming trials of various agents in combination with Avastin but also commented that she is inundated with requests to do trials from people developing therapies targeting Her2 and the other pathways. There is SO MUCH research in this area, and much more coming in the next few years.

much love to all,
Chris

Lolly · 01-19-2007, 12:19 AM

Chris, thanks so much for sharing your discussion with a top doc with all of us...very nice to hear what she thinks, and especially that there's so much in the pipeline to look forward to!

<3 Lolly

KellyA · 01-19-2007, 04:28 AM

Chris,

Hi. Thank you so much for keeping us informed! I do have one question-

Should MRI's of the brain be routinely performed on early stage with no hx of mets, or everyone who is Her2? I am finding it very hard to get the routine marker and CTs and don't think I'll have much luck talking my onc. into that one. He is a wonderful onc., and I am very happy otherwise. Just was wondering if problems usually present initially in the brain, or later with other mets.

Thank you,
Love,
Kelly

caya · 01-19-2007, 05:00 AM

I am also interested in the brain MRI for early stage with no lymph node involvement, and clear scans otherwise - bone, ultrasounds of liver,vaginal ultrasound, complete bloodwork. I had a CAT scan of the brain - all clear. I am just going to start my chemo next week - I am being treated in Toronto Canada, my onc. is recommending FEC - T - 3 rounds ( once every 3 weeks) of the FEC, then 3 rounds of the - Taxotere also once every 3 weeks. Then Herceptin once every 3 weeks - 17 rounds.
Tamoxifen because I am still premenopausal.

I have not asked him for a brain MRI, but I have read about the Herceptin not crossing the BBB - any advice would be appreciated.

Caya.

Mary Anne in TX · 01-19-2007, 05:11 AM

thank you Chris!

eric · 01-19-2007, 06:40 AM

Thanks for sharing Chris. Eric

Joy · 01-19-2007, 09:24 AM

Thanks so much for sharing the info you received from a cancer rock star

I always love hearing what happens in a real converstion with people like that.

suzan w · 01-19-2007, 10:44 AM

Yes, thanks for sharing! My oncologist-a "top rated" one here in Seattle, continues to pooh-pooh my questions regarding a brain MRI as a screening tool. It is frustrating to hear of others who do not feel this way. Wish I knew what to do...!!!

DEBBIE S · 01-19-2007, 01:38 PM

Thanks Chrissy for the news ... your onc seems to say similar things that mine has .... good to know many have the same views on the upcoming release of Tykerb ...

Take Care,

Debbie

Jean · 01-19-2007, 01:41 PM

Thank you Chrisy for sharing this information.

Regards,
Jean

Barbara2 · 01-19-2007, 01:47 PM

Caya, I can tell you (patient's) opinions I have read, regarding brain MRI's, but I can't say for sure that this is what an onc would recommend.

Early stagers (Her2+), whose cancer has not become mets, may want a yearly brain MRI. Those who have mets, may prefer an MRI every 6 months.

rinaina · 01-19-2007, 01:51 PM

Thanks Chrissy for sharing your onc's views. MRI screenings is something I am still on the fence with. Being Stage ! with no node involvement makes me somewhat agree with my onc who isn't in favor of routine brain MRIs but then on the other hand, there are so many who were early stagers who jumped to higher Stages so quickly and who had brain mets, which yes, is often where this cancer likes to metastisize. I am at a loss here. Think I will have a nice to the point discussion with my highly regarded onc about brain MRIs again. I guess we could say the same about other screenings and their importance too.

chrisy · 01-19-2007, 02:13 PM

Please don't read me wrong - Dr Rugo has not recommended brain MRI as routine screening!

Brain MRI's are not standard protocol or even recommended for early stage BC, although if you develop symptoms you should request this. Ladies with Her2+++ need to be vigilant, and aware of the symptoms. If you are getting a full set of tests (CT etc) just once to verify no mets, I'd try to get an MRI included at that time as well - my opinion only. But even that (CT) is by no means standard protocol if there is no node involvement.

For advanced (metastatic) Her2+++ BC, Dr. Rugo has not suggested that I get frequent scans on a routine basis, but has a VERY low threshold for me getting one if there are any symptoms, because early detection is important. So in her opinion, basically, if there are NO symptoms at all, it isn't necessary to get repeated scans just for screening purposes. I asked her this specific question last year (should I get regular screening) and she said no, adding that if I have a clean scan then a month later have symptoms, nobody will want to scan me again so soon! Don't know if she meant doctors, insurers, or both. But as she DOES NOT RECOMMEND ROUTINE SCREENING for me, I feel pretty sure she also would not advocate this for early stagers, either.

I had a scan in July 2005 because I was having sinus-like headaches. I was confirmed to be a bubblehead (nothin in there!) then. It's been 18 months since then, I still have intermittent headaches with no other symptoms but she felt it was time to have another look just to be on the safe side.

Again, this is all recommendations that were directed specifically to me, everyone is different.

I think with early stage BC you do have to be aware and vigilant, but balance that with the knowledge that it is EARLY stage with good prognosis (especially with adjuvant herceptin which was not available to me). It's hard not to be paranoid but you can't live your life in fear either.

Chris

Linda · 01-19-2007, 03:56 PM

Dear Chris:
Thank you so much for sharing this information, which is of so much interest and so relevant to probably every woman who reads this site. I feel almost like I had a consultation with Dr. Rugo and you provided answers to some questions that my local onc, good as she is, cannot answer, since she is not a bc expert.
Thanks again for being so informative and thoughtful.
Linda

caya · 01-19-2007, 04:12 PM

Thanks Chris and Barbara for letting me know the "scoop" on brain MRIs. As an early stager with no lymph node involvement and no mets, I will ask my onc. about getting a brain MRI - maybe after I finish the chemo before Herceptin. My onc. told me yesterday that I have a better prognosis now thanks to Herceptin for early stage, as opposed to a "poorer" prognosis even 2 years ago.

I know they don't normally scan here also unless there are symptoms - and hopefully there will be no symptoms.

Good luck to us all - and pray for more advancements in the Her2 BC war.

Caya

Bev · 01-19-2007, 10:16 PM

Thanks Chris. It's nice to hear what other Doc's think. BB

Ceesun · 01-21-2007, 08:47 AM

very good infor thanks Chris. Ceesun

Sherryg683 · 01-21-2007, 07:58 PM

Great info, I tell you one thing...if I have a pain...I can make it a symptom..lol. Have been having pain between my shoulders and of course I start thinking bone mets. The thing about Herceptin and Tykerb together though still leaves me hanging. If they don't have enough data on how they work together, how are they going to get the data unless they use them together on patients...I would definately leave tykerb for later if it weren't for help protecting against brain mets..which I'd rather not wait and let happen. How sucessful is tykerb in protecting against brain mets anyway...do they know? sherryg683

Vanessa · 01-22-2007, 11:11 AM

Thanks for the wonderful information. It sounds like her and my doctor think alike and that is good to know.

SusanV · 01-22-2007, 04:39 PM

Chrissy,

thanks for sharing the information. It is great to be "armed and dangerous" with information for visits with your onc. I have some questions to ask for my next visit. Thank you very much. I appreciate the info.