HER2 Positive-anyone 10 years out?
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Saying lots of prayers and sending positive thoughts your way Tricia. As a HER2+ patient myself (I guess I can say survivor now because last pathology showed no more BC)... I am rooting for you as you are the front line for me
And your cat is adorable.Cheers,
Lilah
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I am 5 years and I month out
just 6 more months of AI and I am med free...kinda scary!Marcia
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Soccermom
Thanks for coming back to share with us, it is very appreciated.
Can you share more of your journey after diagnoses, did you go through the mental anguish of aches and pains and having scans etc to rule out mets. When did you start to believe you would be ok? Did you have problems with AI's in the beginning?
What about the other ladies that got Herceptin back in 2005/05 are most doing well?
Thanks again for dropping by we need more Herceptin success stories.
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Tricia,
Hope your results will be benign..
-Helena.
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I was diagnosed in 3/05 at the age of 37 and will soon be celebrating my 5 year survivorship. I had a 4.5 cm tumor and 2 pos nodes. I was er/pr -. I did a year of herceptin and am still NED. My onc said that my last appointment with him will be in March and then I will just continue seeing my gyno/family dr.
It took a long time before every ache and pain that I had didn't freak me out that my cancer was back. I think it was probably at the four year mark that I started thinking that I might be ok. The first couple of years I had scans to make sure I was still NED. I haven't had any scans in about two years and I am ok with that. I know that the risk of it coming back at this point is very low.
Laurie
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Laurie -- that is so wonderful! Congratlations! After my Unilateral MX in December (which showed no more cancer) my doctor says I'm cancer free (which is a nice way of saying NED, I guess) and is not requiring any further pet scans. Says I don't have to have them because prior to chemo I had nothing light up except the one breast cancer (which is now removed). Am getting Herceptin still till next summer. Finished chemo in November. Just watched the movie LIVING PROOF... I suspect the book is better. The movie hurtled along and didn't have enough time to go into details (if you ask me). But I got the gist and I am GRATEFUL for the existence of Herceptin.
Cheers,
Lilah
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Hi,
I am 10 years out - NED. Her2/Neu
-Gabrielle
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Woo hoo Gabrielle! Did you have Herceptin for a year (every three weeks)?
Lilah
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Hi Lilah,
I had it once a week for 52 weeks.
Take care,
Gabrielle
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Anyone here that did not get to take the herceptin for the full 1 year. I have had it for 6 months. I was told today they are stopping it due to heart issues. May go back on it and may not, depends what happens to my heart tests now that I am not taking it. I am pretty bummed out by this.
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Blondie, how did you know about the heart issues? Did it show up on a recent muga? Did you have any noticeable symptoms? I ask because I have been on herceptin for 5 months and have not gotten a 2nd muga scan yet. I don't notice any heart problems, but I was just wondering if I would be feeling weird if anything was wrong. I asked my onc about the test and she told me I could get the scan as late as 6 months. I wonder when she'll order it since I 'm coming up on that soon . . . .
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For what it's worth Weety, my ONC has me doing the MUGA scans once every three months (to monitor my heart).
Lilah
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weety911 - I have received echos every 3 months last June right before I started the taxol and herceptin and every 3 weeks since I finished Taxol back on September 30. I did not have any symptoms. It was just a routine 3 month echo. I have to see the cardiologist next week.
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Weety
You should be monitored every 3 months either by echo or MUGA, the echo is less invasive, radiation etc. The Muga is more accurate unless you have the same Cardio interpreting the echo each time which is what I did. It is quite rare to experience heart issues on TCH so you are probably fine. I did experience shortness of breath but never had any heart issues so that can be just TX and anxiety.
Blondie did you have adriamycin as well the A in ACTH?
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I have a MUGA scan done after every 3 treatments of Herceptin. I'm now half way done
I also get an echo done as well every three months as I have an irregular heartbeat - SE from chemo/radiation.
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mmm5 - Hi, yes I did get adriamycin. I think I would have stood my ground for something else had I known the strong effect on the heart with adriamycin and then herceptin.
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Blondie
My friend was dxed in 2004 and had ACTH and had heart damage as well, she had to take some meds but she has had some improvement and her life has returned to normal. She has trouble at high elevations but is quite active ....she is 47.
I DO NOT believe that ACTH only caused damage in 4 percent because many many of the women I have met have suffered somewhat to varying degrees with this combo.
So I hope the newbies come here and read this warning please research TCH if you are HER2 positive....there is no reason (with data to back it up) for ACTH any longer.
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Blondie
My friend was dxed in 2004 and had ACTH and had heart damage as well, she had to take some meds but she has had some improvement and her life has returned to normal. She has trouble at high elevations but is quite active ....she is 47.
I DO NOT believe that ACTH only caused damage in 4 percent because many many of the women I have met have suffered somewhat to varying degrees with this combo.
So I hope the newbies come here and read this warning please research TCH if you are HER2 positive....there is no reason (with data to back it up) for ACTH any longer.
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Blondie
My friend was dxed in 2004 and had ACTH and had heart damage as well, she had to take some meds but she has had some improvement and her life has returned to normal. She has trouble at high elevations but is quite active ....she is 47.
I DO NOT believe that ACTH only caused damage in 4 percent because many many of the women I have met have suffered somewhat to varying degrees with this combo.
So I hope the newbies come here and read this warning please research TCH if you are HER2 positive....there is no reason (with data to back it up) for ACTH any longer.
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Hi-
I just started my treatment taxotere, carboplatin and herceptin. I am confused by the last post by mmm5 does this mean that my treatment is NOT safe? My onco is doing MUGA test often (3mos?). I was feeling very positive about treatment and my outlook, until I spoke with a breast cancer survivor yesterday, who in trying to makeme feel better... said "oh HER2+, that's a bummer that's a really really hard one to treat!" WTH!! And the crappier part about the whole thing is besides the fact that she said this to me, is she is a cancer survivor and should KNOW all the things NOT to say to someone with BREAST CANCER!!! And she is a nurse - great bedside manner huh? (she's not my nurse - if she was I would definitely kick her to the curb - she just happens to be my parents neighbor!
So... I need to know that I can go back to believing my surgeon and my onco that my prognosis is really really good and that they caught my cancer really really early stage 1A found in my mammo - then had a bilat mast with recon. I feel pretty healthy and am handling the chemo, way better than I expected. Now if I could just handle the really stupid comments that people say. LOL!
Just-Sher
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Just-Sher -- as I understand it, Herceptin is a miracle drug for HER2 cancer and before it became widely used survival rates were much worse. So perhaps that is why your neighbor said what she said (she is just NOT up to date on the facts). Andriamiacin and Herceptin both have a very small chance of causing heart problems (specifically, congestive heart failure) long term... the fact that you are doing TCH (and not ACTH) means you've reduced that small chance even more. If I had known about TCH vs ACTH I might have opted for the former (I had ACTH). I also have MUGA test every three months (until I finish Herceptin)... which is to make sure heart function is not being adversely affected by the drug. You have to focus on the statistics that say when you are done with your treatment you will have a lower chance of getting BC again than the average woman (average woman: 12% chance, BC survivors after this standard of treatment: 10% chance). Barring a cure, those are pretty good odds. You have no node involvement, which is even better!
Lilah
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Sher,
Diagnosed in 2004 as HER2+ was a world of difference compared ot now- my onc said "The bad news is you are HER2+ and the good news is that youare HER2+" herceptin has changed the playing field and prognosis statistics are completely different now.
Kristy
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My surgeon was with me as we awaited a phone call with the biopsy results. (There was a blizzard and the results were delayed.) As we waited, she said "We are hoping you are Her2 positive. This is one time you WANT to hear 'positive' on a test result because of this new drug we now have to fight it." And then the call came, and they said Her2+ and the doc and nurse were so excited. I was way too new at this whole thing and in shock anyway, so I didn't get it. I just thought about how i HAD to have a whole year of tx, but now I realize that I am lucky and I GET to have a whole year of tx. Different perspective huh?
So old school thinking was Oh No, Her2+ (or Her 2neu as they called it). Now it is GOOD - her2+.
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I have to say you ladies are the best. I was SOOOOO depressed after yesterday, with what the neighbor said, and then being stuck in the house for another week, (having trouble with my wbc and nuetrophils not going back up) and having my hair start to fall out. Let's just say yesterday was a really really bad day. Its good to hear that HER2+ is a POSTIVE thing!! You ladies certainly helped to put a smile back on my face!
Hugs to you!
Sher
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Hi Just Sher,
Stupid comments by people are something I'm trying to deal with as well. Anyone got a good response to a clueless person? I also find that if people know I HAD breast ca they seem to want to bring it up all the time - it's like it identifies me now and I hate that. They always look at me meaningfully and say 'so, how are you feeling?' What should I say? So I am not telling anyone new that I meet because of that. Which means I also can't explain to anyone new why I am sometimes fatigued, etc. How do you ladies who have been dealing with it for awhile handle inquiries into your health and people who want to discuss the 'c' word with you? Without sounding rude? Or do I have to be rude to get the message across that I don't want to talk about it!!!!
Thanks. And I'm so happy to see so many women here who are years out from dx and doing well. Right on!
tuckertwo
Dianne
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Hi Tuckertwo- Dianne~
I do have a response that pretty well shuts people up for those who know that I have cancer...its typically the people who know that I have breast cancer, but want to avoid actually using the word "cancer".
So when they ask me (with that seriously concerned look on their face), "how are you feeling?" I look them right in the eye, and say, "Well, other than the cancer, I feel GREAT!" Believe it or not that pretty well, ends it right there! LOL
~Sher
~Sher
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Hi Blondie,
I know some ladies who didn't finish the full course of herceptin due to heart problems and they are still NED. Also the heart does heal when herceptin is stopped. From what my onc said about herceptin, the studies were done for 17 treatments but all of the women in the study didn't complete the 17 tx's. The docs really don't know how many treatments are effective. I think in Europe they are doing a study where women get 4 months of tx's? Anyone know more about that? I did read somewhere that Adriamyacin is very effective - did you finish all of your chemo tx's, aside from the herceptin?
tuckertwo
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Hi Sher,
But.....what if I don't even want to say that @*#$ 'c' word? It just seems like people are uncomfortable around people who have had cancer, like it's catching, or something. I guess I could respond and say something like "I feel fine. How do YOU feel?" And look into their eyes with the same concern
I have a friend who tells people she doesn't want to hear any 'c' stories unless they have a happy ending, which is also another one of my peeves...people will start telling me stories of friends who have died of some type of cancer. Are they idiots? tuckertwo - Dianne
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Sher,
I was on the TCH regimen as well. It is the least cardio-toxic (does not cause heart damage) but they still want to do echocardiograms or MUGA's because of the herceptin. I did 5.5 tx's of TC and 16 of Herceptin. Finished herceptin in Sept. 2009. I had a great deal of trouble/allergy with the Taxotere so could not do 6 tx's. And some kidney function problems with the carboplatin. Still growing in my eyebrows! But my hair has returned, thank God. TCH is supposed to be the gold standard nowadays, I guess. I am dealing with post-chemo effects like fatigue, soft fingernails - that sort of thing. But as my onc said 'the TCH is doable'. Hang in there, Sher. I know it's trite but if I can do it, anyone can!
Do you mind some words of advice? Drink a lot of water to keep your kidneys flushed out and to keep hydrated, eat well and try to exercise every day. Even walking a 1/2 hr a day is better than nothing. Not that I'm any kind of expert and please don't think I'm trying to sound like one
My onc even used the cure word with me; said I had caught it early, as you did, had no positive nodes, no vascular invasion. You do have a good prognosis so don't let people who don't have a clue tell you otherwise. Stay strong!tuckertwo - Dianne
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Dianne-
Obviously yes on the Idiot factor!! I actually had someone tell me that she KNOWS how I feel and how unfair cancer is, as they had just lost their CAT to pancreatic cancer. I just stood there with that Katie Couric look on my face, you know the one where she just looks at the person she is interviewing and just BLINKS! Anyway, I so just wanted to ask her, do you know that you just said that to me OUT LOUD! I expressed my concern to her, biting my tongue so as to not LAUGH in her face. When I got to the van I burst out laughing and called another friend with BC to share the story!!! OMG! Can you say STUPID!
~Sher
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