TRIPLE POSITIVE GROUP
Comments
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Melania, the rads and herceptin are there as the cleanup crew!! You will be fine!
Arlene...I left my port through the last herceptin. It was just SO easy for me, and my port was barely noticeable. I now get other iv's in my arm...and really miss my port just for those.
On another note....I am hitting phase one of the neratinib trial. Glad I persisted, and thanks Lago for the contacts link. They initially told me I was ineligible, but it was a transcription error...recorded my info wrong. So after a few more phone calls, I was put in touch with a trial doc and once I pass some prelim clearance testing, I will be off!! It's funny to say I HOPE to be getting diarrhea soon, lol!!!0 -
Melanie, my tumor shrunk but did not completely go away. The path report shows 35 percent tumor cellularity which the MO said meant 65 percent was dead cells. He considers this a great response. The path report indicated the cells in the nodes experienced treatment effect. sure it would have been great to have zero, but both of us know the chemo worked and hopefully eliminated any wayward cells. The mo told me that is most important and the breast tumor treatment effect is a gauge of how the chemo worked. We are in a good place, with herceptin in our corner also. Libraylil
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TonLee, Thanks for your post about what your Onc OB said. I did not know that we are not supposed to have period while on Tamoxifen. I read somewhere that period actually reduces the risk of uterus cancer. Did I miss any thing? I am confused now. I started tamoxifen on April 15, 2011 and had one period on April 25, after finishing chemo on March 17th. I thought I would have regular period even on tamoxifen...Would be very glad if I do not have to have it.0
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ArleneA - I had my port removed the day of the Royal wedding...
and I still have 4 herceptins to go (well, 3 after yesterday). No regrets. My veins are fine, and herceptin is not a big deal to be given peripherally. I absolutely did not want chemo given through a peripheral IV, but don't mind this. I got the port out with a little local and some fentanyl... was done and back in my car in about 3 hours. Very little pain from it. So glad to be done with it!!! HTH!! 0 -
Thanks Leeanna9: I'm pretty sure I'll also have mine removed. Doctor also says he'll do it right in the office with a local.
Just can't see this port staying in for nearly a year. I know I'll have to have several MUGA's but they can use my vein for those also.
Arlene
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Thanks Leeanna9: I'm pretty sure I'll also have mine removed. Doctor also says he'll do it right in the office with a local.
Just can't see this port staying in for nearly a year. I know I'll have to have several MUGA's but they can use my vein for those also.
Arlene
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Hi, Arlene
You received a lot of posts, I would like to add my advice you to care for inserting the needle by really trained and experienced nurses and it will be fine.
I was having chemo and a year of Herceptin through vein needle for the time of infusion and removed the tape after some minutes, after I was free for three weeks.
Best Wishes
Usha
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Meg,
You should talk with your own OB Onc. I've heard from several ladies here that having a cycle is ok and normal on it. Perhaps my Dr was speaking to my specific case, but when I asked for clarification he insisted periods should stop.
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I called the Onc office. I do not have an OB onc
. The nurse told me it varies, they will be concerned if there is heavier bleeding. 0 -
Thank you Omaz for your explanation. Since Ias week, I have had the pathology reoport, it is now IDC ER+/PR+ HER2+ Stage 2 . So the plan is mx on left breast, then they are talking about Herceptin treatment, I was really hoping that I would just get the mx as ten years ago I had chemo and rad.
Thanking all of you for your insights
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sam1 - Well the good news is that we triple positives have all kinds of treatments. Herceptin, chemo, anti-estrogen, radiation, surgery. Whew!! Do you think you will have to have chemo?0
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I hope it is good news, my ins will not cover Chemo this time round and the dr dose not want to do Rad again as I had that ten years ago, and as it is the left breast close to the heart. I am wondering if I just get the mx on the left then leave it at that.
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sam - Wow, can't believe they won't cover chemo. This one doesn't sound like a recurrence but a new one since it is so different from the first one. Herceptin then?0
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Yes I agree it is different from the first time, I wonder why that happens? I doubt my ins will cover Herceptin as that is really expensive, they are only going to cover inpatient procedures and Chemo and Herceptin are no inpatient. Cause I had cancer ten years ago my ins will only cover certain things as it is a pre exsiting condition, what a life. That is why I will have to go for Mx only. I wonder what the ladies here think of just doing Mx?
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(((hugs to you sam))) I am not sure but perhaps contact genentech and see if they have a special program to help with the herceptin.0
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sam1- also talk to your oncologist about the fact that you don't have insurance. Mine had a program where you could get the treatments free/or very low cost if you didn't have insurance. And also in Oregon they have a state medical pool that if you have a life threatening disease you can't be denied insurance, it costs 700-800 per month, but that's cheaper than the treatments. Sorry about your recurrance.
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I was reading back a ways on this post and saw the discussion on AC-TH vs TCH. I received TCH, my doctor said the main reason was that the AC-TH was more likely to cause heart damage, but also he wanted me started on the herceptin ASAP.
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I just pop in once in a while to give someone a little hope. I was diagnosed in Sep. 2002. I was in on the study of herceptin and had to stop treatments 6 month early. I was told how I had the worst form of breast cancer I could possibly have. I am still going strong over 8 years now! No set backs. No one can tell you what will really happen. Stay positive all you HER@+++ people
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Sam omaz is right gene tech has a place for patients to apply that otherwise could not get herceptin. Remember herceptin is not chemo and does not have the side effects of chemo. I am assuming chemo 10 years ago was pretty rough. Libraylil
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nicinboonie Yeah to thr 8 years, thats so encouraging
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nicinboonie - That's good to know - thank you for coming to encourage us!!0
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sam1 Check this out: What if You Can't Pay for Herceptin?
I also agree that you should talk with your onc and if there's a social worker at the hospital they may be able to navigate for you too. Also the American Cancer Society might be able to help and possibly Komen or Komen2.
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Agree, there are so many programs out there now so that you can get your treatments. Also, remember under the new H/C guidelines, they can't deny you insurance b/c of pre-existing conditions...they will probably charge you a LOT but can't deny you.
Good luck!
Arlene
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Arlene they can deny to pay preexisting conditions if you had more than a 30 day lapse in insurance within the last year. After 2014, if Obama care goes forward they can't. This is why there are high risk pool insurance in many states (I'm currently on one of those).0
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Thanks for the clarification Lago! I thought that had already gone into effect. BTW, for what is is worth, I am not a fan of Obamacare but there are some things in there that I like.
Thank you, Arlene
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Sam -
Sitting here thinking about Herceptin not being covered (which is a crime IMO). Perhaps you could get into a clinical trial for Neratinib and have it all paid? Not sure of your eligibility, but a trial might help you.
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Meg,
I saw another OB Onc today....SHE IS FABULOUS...5 years older than me, and had a BMX last summer....went to see the same docs, we had so much in common it was scary.
She was over 90% ER+ and stopped taking Tamoxifen after a few weeks. She hated the SE..and doesn't seemed worried it's gonna be back. (She didn't have any lymph involvement and her "lump" was 2mm..that's right MM. She didn't even do chemo.)
Anyway, she once again confirmed that I should not be having any periods on Tamoxifen. But, I've gotten a qualifier for everyone else...she said if a woman doesn't have a period while on chemo (chemopause) then she should NOT have it on Tamoxifen. She said if I bleed at all, (since I'm in chemopause) that I need to be seen right away. She said some women bleed through chemo and they are the few who will also bleed on Tamox.
She also ordered a yearly Transvaginal US for me so we can keep an eye on the uterine lining, ovaries, etc. (That is something NONE of the men I saw would do...they told me not to worry about it...)
So hope that helps clear things up. Clear as mud right? I guess it really is more individual..who bleeds and it's ok, who doesn't....
t
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TonLee I too have read if there is bleeding on Tamox they will check and send you for a US. I don't follow the info on Tamox as closely because I'm not on it (and hopefully will stay in chemo-pause and not need to twitch over).0
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The port is out! Feeling equal parts relieved and like I'm tempting fate and being cocky.
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No more Matrix for you Sara. You have been deported… and that's a good thing for a change!
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