TRIPLE POSITIVE GROUP
Comments
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Jackboo...
Attitudes by mos here are the same. My doctors told me the same as yours. Thy didn't give me numbers on he echo. In fact thy didn't even tell me wht thy were looking for until I asked about the EF. They used to be surprised at the questions I askThe 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.0 -
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.0 -
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 until I asked . 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.0 -
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
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rozem....
I think that lung issues might be something that needs looking into as well. I think they are harder to define and for us to pinpoint. Plus there is no baseline or any of us. We are very different than we were prior to treatment in every conceivable way.Other than beign NED.....which is huge....... I'm trying to find one way I am better . It might take a little more time for me anyway.0 -
well i think i'm going to have to make up some symptoms every year!
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Lol Roze. You sound just like my husband!
He says to me "What do you mean he won't give you a PET? Did you tell him you have symptoms?!?"
Me: "Yes. But he discounts them. Every. Single. Time."
Hubby: "Well make some up he can't dismiss!"
lol
I'm not that good a faker...I mean I've always done it the other way...downplayed the pain or sickness, I've never faked it.
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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.
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Ms Tori
My husband has used the VA for the majority of his healthcare for nearly ten years now. He has complicated med issues and his care has been superb.....never been turned down for any medically necessary procedures and the first to implement new scientifically advanced protocols . He had both VA and private access. The VA was vastly superior. The medical record keeping is state of the art. Every one of your mds will have complete access to all your procedures and w ill see precisely where you are in treatment. Cannot speak directly re women's issues .0 -
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.
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Well I see my cardiologist on Monday. I wonder if they will have new do a MUGA or an echo and when. I am actually beginning to feel better and stronger. Well, except for my favorite SE, this time from the antibiotics, and yes, I am eating yogurt, and taking probiotics. But my immodium is in heavy use! LOL My daughter, the one who lives fairly close, came by for the afternoon and helped me with the Halloween decorations. I wad so cheered up, cause this is my favorite season. I realize that I haven't done any decorating around her as I.was picking up Easter stuff, LOL. But I feel more like my old self now. Hope it stays that way.
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Moon I hope u stay that way too.
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Moon I hope u stay that way too.
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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. Lol0 -
MS Tori,
I receive care at an active duty military medical center, not the VA. Our VA has been in the news here for things like giving people Hepatitis and AIDS.
No kidding.
Guess it depends on where you live as to how good the VA is....please let us know how you like yours...I always find it interesting!
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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.0 -
Moon - so good to hear you are feeling more like your old self!
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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.
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Fluff- congrats! That is super exciting. You must be proud!
Did anyone see the report on md Anderson on HLN this morning? They making some strong promises about finding a "cure" for certain breast cancers...7 other cancers in the next few years!!!!
Found this article
http://m.cbsnews.com/storysynopsis.rbml?&pageType=health&catid=57517618&feed_id=5&videofeed=41&nb_splitPage=00 -
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cindy68 I agree with you 100%. The risk is not that high but it does happen. I also wonder if some of the other treatments in combination are causing the issue (like the ESD).
I did not see the movie but read the book "making of Herceptin… by Robert Bazell. The movie was based on that book. This is when I found out my onc was one of those involved with Herceptin. She was the one who broke the double blind and saved her patient by getting her Herceptin. I had no idea till I read the book. She really does care about her patients.
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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.
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lago - i will have to read the book as well. My medical oncologist also knows the Dr.Slamon. She went to UCLA and actually called and talked to him about my case. I think it was in July when the 2 new drugs for metastatic breast cancer were approved she said she cried. She said it takes so much to bring these drugs to the market and when they find something that can help people she is just so excited she cries. It sounds like you and i both have MO that really care about there patients.
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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
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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 love0 -
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 love0 -
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 love0 -
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
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I usually see my onc PA which I prefer anyway because she is terrific and understands my 'issues'. I know that she and my onc communicate all the time because when I was getting infusions I would see them conferring.
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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.
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