TRIPLE POSITIVE GROUP
Comments
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Wow Nora great news! Happy dance.
So that's why last year at this time my onc, who had planned on putting me on Zometa did a 180 after coming back from this same conference. Guess there's no need to send an email to my NP about it.
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Nora, Great News!!
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Yay Nora!!!! Fantastic News!!!0
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Nora: I think that's the greatest news of the week! When one of us gets happy news, it's a celebration for all of us and all that we've been through together!
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Nora - that is great news! I'm so glad for you. Peace of mind - it's an awesome thing!
Well, I had my BS appt today (I see her every 6 months). And after that I was walking through the cancer center to the parking lot and stopped to chat with one of my favorite nurses. My onc walked by and said that she had gotten my message, but had been in San Antonio and just returned. She said that she does think adding Zometa is a good idea - we will do the first infusion at my next appt. She cautioned that the roughly 30% in reduced recurrence is actually a pretty small difference in someone like me with a small percentage to begin with. Might make a 3-4% difference. She also thinks that I could benefit from Zometa being post meno, etc. And says it's a benign drug with no real side effects - hope that's true. So it's given every 6 months - a 15 minute infusion. Not looking forward to that part. So I have a few months to look into it more and change my mind if I want to.
AND - my breast MRI from last week was normal. Hooray!
edited to add that the Zometa is given every 6 months for a series of 4 infusions. So it's time limited too. I didn't know that part.
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Yay Saralmom! Let the good news roll!
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nora and sara, CONGRATS to you both!!!
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Congrats nora and sara... It is always nice to get the good news!
Nora- i laughed when reading your post. My onc doesnt do followup testing, but I managed to talk my pcp into one and then the study I got kicked out of did a lung xray. Had extensive blood work done, although not tumor markers, i dont think. All appeared fine and I was so relieved. I think my brain and my bones are the only thing I dont have a baseline on now!
Having my third heart scan tomorrow. He ordered a muga instead of an echo this time. Not sure why! I hope I pass. I am going to work out after the test, so I will make the tech tell me if he thinks I am ok to go. Lol0 -
Sara,
That is interesting!! Thanks for sharing.
My Onc will not put me on anything that isn't clinically proven to work. Heck, I'm stage 3 and can't even get a pet scan!
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Yayyy Sara for the good scan!!!0
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Nora and Sara Hooray for the good news! Let's keep this trend of good news going...
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Good news Nora and Sara!! Hurrah!
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Hello everyone, this is my first post, but I have followed this thread since dx. in 2/2011. I am wondering if I can get some opinions on tx. I had IDC,2a,3cm. nodes 1/2, Neoadjuvant chemo A/Cx2 (allergic on 2nd, stopped) TCH x1.5 (allergic, stopped) Herceptin x12 (allergic after 8th, long involved tx for last 4, stopped 7/11) Lumpectomy on 6/2/11. Ducts removed along with 3cm distant tumor. Margins were clear. I am triple+, high %. Since 7/11, I have had a Lap Chole, Klebsiella septicemia, MRSA septicemia (port origination-- removed and a new one in), Septic Shock in October with 2nd port removed d/t infection. 3 PICC lines inserted over 6 wks and removed. 2nd septic shock episode in Nov 11. Finally out of hosp 12/11. My onc. does not want to do any more HER2 inhibitors d/t SE'S. She is really pushing Rads. Wants to do Arimidex (in chemo- pause). I don't really want rads, but I do want Herceptin (possible with tx.). What to do?
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moni - Welcome!! I just wanted to say that you have really been through the wringer. There are several anti-estrogen medications to try if the arimidex doesn't work. You are due for some good luck so maybe you will have no problem with the arimidex. Best wishes to you!!!0
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Everyone has great news these days! I have felt so good today. Thank you everyone for your words. You are so right Achpurple. What goes on with one of us seems to set the mood for this thread.
Yeahhh us!!
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moni - So sorry, you have had a terrible time with treatment. I can understand your onc wanting to do rads since you weren't able to finish the chemo. I also understand why you don't really want it. I think though, that you would probably be wise to do whatever you can right now to reduce any risk of recurrence because they might have a hard time finding any type of treatment you wouldn't develop a reaction to if this cancer ever comes back. Hope this helps at all. Healing hugs your way. Judy
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That is terrible~!~ So sorry that you have had a such a rough road....... I think I might really consider the rads........ thats just me though. Wishing you strength.
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hi ladies, I have a question. I had lumpect before thanksgiving for small area of DCIS (rt mast in 08 for widespread DCIS). So.... two invasive areas found <4mm. Then told her2+. Ok, now I start freaking out....went yesterday for lymphnode dissect and surgeon told me since invasive area were so small it could actually be the DCIS that was her2+ not the tumors!! WTF! Has anyone had a similiar story. So they may blast me with chemo and herceptin and it may not even be positive!!!
Frustrated in CT
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Moni I'm really having almost no SE from Anastrozole (generic Arimidex). I have some stiffness in the morning that I walk off by the time I reach the bathroom. I might get a hot flash if I drink wine but I'm not evens sure it is one it's pretty minor. At times I get stiffness when sitting too long but again I walk that off in about 30 seconds. I've been on this estrogen sucker since March 1st. Actually Herceptin made me a bit stiff but I didn't realize it till I got off it. Go figure. Being highly hormone positive I would really try all the AIs and if they cause serious SE I would consider Tamoxifen as well. Some earlier stages only get AIs or Tamox, no chemo. It is a very powerful therapy.
Rads is recommended to everyone who gets a lumpectomy for invasive breast cancers from what I've seen. I'm not really sure in your case though what the issue would be since you've been through hell and back so far. Given you couldn't finish some of the chemo/herceptin I might give it a try. Granted it does sound like you managed to get a few tx in. It might be enough. Remember you can always quit.
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Thank you to those that have replied and for your well wishes! I have 2 weeks to decide what to do. I also forgot that I had 3 rounds of Abraxane after the lumpectomy before the onc. said I could tolerate no more. I do have an appt. with the Rad Onc the 28th to get her opinion, but I know no-one can relate unless you've been there. I really value everyone's opinion on this forum. Tell me what you would do in my case, I am weighing everything. Already I was reminded of something I had not thought about! Thank you everyone in advance, Moni
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Moni, you really have been through the wringer. Your luck is bound to change, and you have come to the right place. The object of rads is to get any local cancer that may still be around after surgery. That is why it is always recommended with lumpectomies. Most people would opt for a mastectomy if they didn't want to do rads. Even with a mastectomy, rads is sometimes recommended in the case of positive nodes. I had mx and just finished rads on Nov. 11. For me, compared to chemo, rads was easy. If I were you, I would give it a try. I had some problems with chemo, got pnuemonitis from taxol and now have a herceptin holiday due to ejection fraction going down, but pretty much sailed through rads. You asked for opinions, so i gave it, but you have to do what's right for you. I would try the arimidex too, you can always stop, but you don't know how you'll do on it unless you try it. Good luck with your decision making.
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Hooray Sarah and Nora! Such wonderful news.
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Moni: I know there are times when everybody gets tired and wants to call it quits. But then we stop, think about it, then decide we must continue to fight if we want to win! I have also had several issues with some of my treatments, but rads made me a smidge tired after I was about halfway through and that's it. Looked a little tan in the rads area but didn't even get red. Mind you, I did not have to have quite as many treatments as most of these women, but I would at least give it a try.
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Moni:: Sorry to welcome you here. Go for the rads....I think the majority of us have found it pretty easy and I was more afraid of the rads than the chemo. Herceptin has been an issue for me but that is unusual and I've been stopped for the second time but I made it to #10 so feel good about that especially since there have never been any tests to see what timeframe really works for Herceptin...the one year was just a guess so now they are doing studies and getting close to determining that 6 months could be all that is needed.
I've been on the Arimidex for 3 months now and no problems yet.
Diane: Welcome too. Sorry you are having such a difficult time too. Guess I thought HER2+ was something that was in your system and not just certain areas but perhaps I am not understanding what you are saying. Hopefully someone else here can help.
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Bit shell shocked tonight. Got my surgery path/histo results today. Turned out the tumour was 2cm longest diameter not 1.1cm as estimated prior to the surgery. Went from grade 2 to grade 3 as well :-( Then found out hat my one sentinal node was totally overrun with the cancer.
Have declined further node clearance based on the MSKCC research and also some recent radiology papers. CT brain, chest, abdo, prlvis tomorrow to see if any organ mets. Bone scan next week to check for bone mets (currently no symptoms of any mets but you never know). Meet the oncologist next Thursday to get the plan...
regards Jenn0 -
Jenn,
So sorry about the results. It stinks when we think it is one thing and it turns out to be another.
I only allowed my BS to take 4 nodes. 4 because that is all they really need to stage and I was sure there wouldn't be any cancer in the lymphs.
It was in all 4.
Doesn't that just figure?
So, they of course wanted to go back in and take more. I said no. And I am comfortable with that decision. However, the only reason I said no was because I talked with an RO who said we could just radiate the axilla (to kill any lingering cancer in the lymphs) and my odds of lifetime LE was only 5% with Rads. I did more research and decided that was the best course for me.
Let me give you fair warning. You may not run into this, but I did and still do everytime I see a new provider. Some Drs get annoyed that I didn't let them go back in and rip out the rest of the axilla. In fact, I have been denied a PET scan because of it and a host of other things most BC patients take for granted.
I was bitching about it to my Oncologist one day and he told me even the literature in his field recommends not giving scans to women who do not follow standard of care. Of course NOW my decision to keep my axilla is considered part of the options in standard care, but when I made them they weren't.
I hope this doesn't turn out to be the case for you. Essentially what I am told, (though always with a smile), is...you chose not to follow SOC and our advice...you made your own decisions...since you didn't follow SOC then we don't have to either...so forget about scans etc.
I literally went 6 months complaining about pain in my chest/abdomen and always was told..."we'll keep an eye on it." No scans, nadda. Finally because of a MUGA (standard test to measure effect of chemo on heart) they took it serious and turns out it was my heart the whole time...And I am not what most people would classify as a push-over type woman. I'm very direct with my medical team, and sometimes I tell them no.
Guess they're just giving as good as they get :-/
Good luck! But be prepared for this type mentality.
Are you sure the bone scan you're getting isn't for bone density? Bone density is done before chemo/steroids to determine a baseline. That will not tell you anything about bone mets.
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TonLee you were a smart cookie. It was all done so quickly, that I never had the opportunity to research. I am constantly worrying abput lymphedema now!
Jen, you are in the right place...knowledgeable women who understand and care. I have made it to the other side of treatment...am over 2 years out with 8 positive nodes. My best friend and cancer mentor who was also triple positive with 11 nodes is living a healthy active life free of cancer 8 years out.
Keep asking questions, and know we are here for you!0 -
Moni,
Wow, you've really suffered. I am so sorry. This isn't easy, but you've dealt with so much more than most of us when it comes to complications. Hugs out to you.
Ok. Radiation. Wasn't a big fan. Still am not. But, if you do not do rads, I believe with a lumpectomy that increases your chance 35% or there about of it returning. When you look at recurrence and survival rates right now, with a calculator or in most of the literature, it includes radiation with the lumpectomy. If you take radiation out of the equation, then you have to find specific literature of women with lumps and no rads vs women with rads to get statistical data. I looked it up a long time ago and for some reason I remember it was 35% difference. That's a big chunk.
I had a MX but positive lymphs. I ended up getting more radiation than if I'd just had a lumpectomy! And you know what? So far so good. My skin is tight...but in good condition. I have a TE and it was expanded last week....and I was told over and over (and read) that expanding radiated skin is not a good idea.
I'm knocking on wood here because I have a couple more fills to go and I feel pretty tight already.
Rads was hard for me because it made me tired...but I have to wonder how much my heart was to blame.
If I were you, I'd do the rads. The thought of doing this ALL OVER again...well, I don't even know if you can. If it comes back, with your allergies, your tx options could be limited right? Then what?
That's MY opinion. You asked, and there it is.
However, I will support any decision you make
That's why we're here.0 -
Thanks TonLee and Geewhiz,
No worries about any scanning probs here in Australia, especially since I work in clinical trials and can speak sensible stats at everyone :-)
Yes, my bone scan is the full coloured thingo to check for mets :-)
regards Jenn0 -
Thanks Gee, though knowing how much I would be penalized for making my own decisions I might have hesitated to make them.
LE still concerns me because it is still on the table...sure the % is less, but look at the stats for heart damage from Herceptin, and THERE I AM...lol.
My Onc told me this week that my body is not responding in the way he'd have bet money it would...I was young, so he didn't give me Neulasta ~snort~. Ended up in the hospital for FIVE days I can never get back. Lung collapsed when they inserted my port, 3 day hospital stay.
Herceptin won't damage your heart, very unlikely. HELLO! Damage....and so far not improving. You won't have a period on Tamoxifen. Tell it to the uterus buddy! I'm bleeding out! lol
If the odds are 5% or less....except for permanent hair loss, and ahem, I just colored my hair for the first time with professional supplies, besides missing spots and looking like a feral feline, um, I'm waiting to see if my hair falls out! If it is 5% or less...I'm so there....
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