TRIPLE POSITIVE GROUP

Jackboo...

Attitudes by mos here are the same. My doctors told me the same as yours. They didn't give me numbers on the echo. In fact they didn't even tell me what they were looking for until I asked about the EF. They used to be surprised at the questions I askEd. The level of knowledge and the relationship with their medical team of the ladies in this forum is not indicative of the norm in breast cancer or probably any other disease. We ask questions, want copies of our tests, do research, get second opinions etc.

tonlee thanks for the story, my heart has always "skipped beats" and did have ECHO's a few times to check it out, seems it is normal for me.  Aggravated by caffeine but still normal im told. Now i will pay closer attention to these symptoms

ashla that symptom you are describing is EXACTLY how i felt, like when you breath in and have a chest cold.  Turns out i do have some radiation scarring in my lung.  I spoke to the RO this week and he said this is very, very common and not to worry about it.  He said i should not have symptoms but I don't believe that crap anymore since all my symptoms from H are discounted aswell

well i think i'm going to have to make up some symptoms every year!

TonLee-thanks for all the great information. It will be great to not go into treatment blindly, but to know what question, tests, and s/e to look for and request. My oncologist will be at the VA. I noticed you said something about the military. Active or VA care? Interested to know if I will run into trouble with VA for tests as well.

I was just cleaning out one of my binders today. In it had my appoints from 2 years ago… 2 years ago today I had my 1st and only MUGA and a few hours later my first appointment with my onc.

Now that's weird given what we've been discussing.

Moon I hope u stay that way too.

I just had my 6 month echo after finishing herceptin in March. Stayed pretty much the same. 60-65%. We talked about the Genentech info I was sent that said he should monitor it for two years. He doesn't feel I need one unless I have symptoms, but said he will order one if I ask. I think I will wait 6 months or so.



Finished the big part of my trial and am home with an itchy leg.



What a crazy ten days. Daughter came home from modeling in New York, where she got to walk in Fashion Week with four designers. While there she received a three month modeling contract with an agency in Thailand. She has to leave next Tuesday. A lot of her stuff is in LA, but she didn't have time to go back. So, she is here and we are throwing everything together.



I was in Winston Salem for the trial Tuesday-tonight, and am having my final fat grafting/lipo tomorrow. Then we ship her back to NYC on Monday and off she goes on Tuesday. It is exhausting.



Oh....I would have no problem making up symptoms to get a test that I thought I needed. Lol

TonLee,

There are similar stories about privately owned and operated hospitals every single day. There is no perfect system. After many years of PERSONAL experience with the VA. And 4 different hospitals the care has been superb. And our veterans and indeed all our citizens deserve no less.

i had a good discussion with my physician yesterday about the risk vs benefit of herceptin.  First, i encourage all of your to view the movie "living Proof". it is the development of herceptin.  It was actually developed by Genetech a biotech company (not Roche as previously mentioned - Roche was bought out several years ago).  Herceptin has been around in either trial or FDA approval for over 26 years.  If there was a statistically significant risk of problems with Herceptin the FDA would have pulled it off the market.  Just look at alot of the drugs the FDA pulls off the market (SSRI's, Vioxx/Bextra, weight loss etc due to risks).  There is a risk of cardiomyopathy with Herceptin however, it is small.  Look at the millions of people that have been on it and are living today Cancer free.  I am interested though 6 month vs 1 year - if there is any benefit especially once you are cancer free.   Cancer research will continue to evolve.  We are just lucky that companies and researchers put money forth for the development and research of these meds to help us.  Without herceptin we may not be having this discussion.  In addition, they are looking at herceptin to use for other types of cancer -that is encouraging.  Who knows what will be available in 5 years heck maybe next year.  2 new drugs were approved this year for metastatic breast ca.

http://www.hlntv.com/video/2012/09/21/cancer-deaths-md-anderson



Found this also

I watched the moving Living Proof, it is an amazing story, and I am very grateful Dr. Slamon and Genentech brought Herceptin to market.  Apparently Roche bought out Genentech in 2009.

Yep, not everyone will have heart damage from Hercpetin, but it is important to educate ourselves on proper monitoring.  We still do not have long term data on Herceptin.  As far as I know, this last study going out 5 years is the longest amount of follow-up I've seen.  If someone has found a longer term study I'd love to see it.  As I said, I would still do Herceptin, given the alternative, but I think it is prudent to know the risks - not freak out - but know going in with eyes wide open what could happen if you are in the small percentage that have heart issues.   We must be advocates for ourselves always.    

My onc is involved in the TDM-1 trail. Not sure if they got approval yet but it's close if not. This one looks great. No more hair loss on that drug. Her area of interest are Breast cancer treatments, Mechanisms of resistance and sensitivity to targeted therapies for breast cancer

Fluff, sounds like life is being lived in your house! Exciting about your DD, about finishing the big trial stuff and everything else you have going on.



It sounds like so many of us have found wonderful caring and SMART oncs! That makes such a difference if you trust your onc. What's the old saying? Trust, but verify? LOL. Much love

There are a lot of really good oncs out there. They are truly committed bunch. I don't really think they make that much money compared to all the hours they put in. Seems like they are on call 24/7

Even my onc's NP says she'll never retire. She thinks the only thing that might get my onc to retire is grand kids (move to CA to be with sons). Not worried though. Neither of her sons are married :P

TonLee- I have been going to Tampa VA Hospital and they have been great! The only thing my BS wouldn't do was a Oncotype dx test. He ordered the BRCA but he said bc I'm Her2+ that I don't need a Oncotype. Well, I will continue to use my BS and PS in Tampa, but will see oncology at Gainsville VA since its closer. My primary care is here in St. Augustine VA and she's excellent. I will have to wait and see how Gainsville is. But so far, everyone else is good. I will talk to my MO about the Oncotype test.