TRIPLE POSITIVE GROUP
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I had the runny, burning eyes to the point that I couldn't drive, read, or work at the computer much at all. I was first referred to a local opthamologist who dilated my tear ducts and put me on steroid drops, that didn't help and each Taxotere treatment made it worse. I was finally seen by an opthamologist that puts in the stents. I was three weeks out from my last chemo and still having the eye issues when they put in the stents (not a pleasant surgery, but well worth it). It helped within a couple of days. The big concern is that because the tear ducts are so swollen and irritated they will actually grow shut as your body heals from the chemo. I had the stents in for 3 1/2 months, my eyes are doing well, no more tearing or issues. My only complaint is that the stent placement was not done earlier, it would have saved me a couple of months of pain and inconvenience.
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Hi TonLee,
I haven't been back to this thread until now, and just read your question to me from page ...2?....
I think it is hard for those diagnosed 2005 or more recently (which is when trastuzumab became standard for adjuvant use for HER2 positive patients), or even those diagnosed in 2002 (when Arimidex was the first aromatase inhibitor to be used for adjuvant use) to realize just how different it was then to make a decision compared to the way it is now. It was not even standard to be tested at all for HER2. (To this day the testing for it is not as good as it should be, with false positives and false negatives.)
Back then, there was only tamoxifen after chemo. I didn't stop taking tamoxifen because of side effects, I stopped taking it for the same reason I would stop taking a medication today -- because my onc was not straightforward with me about the knowledge available at that time about tamoxifen and AIB1. He also was not straightforward with me when I specifically asked what the difference in risk would be if I were to choose ovarian ablation and rads plus tamoxifen, rather than chemo and rads followed by tamoxifen.
By the time trastuzumab was available to me, my onc said he didn't think it would be useful. Lapatinib was on the horizon, so I started gearing up for that instead, and qualified for that trial. Because of all the CTs that were required as part of the trial (and because of a 3-day bout of actual radiation sickness when a CT tech exposed me to 2 CTs in one day, "oops"....), I chose not to continue with that trial. I've never been especially worried about recurrence, as there are multiple family members with bc and only one had recurrence (back in the 1950's when she was diagnosed very late in the game).
I agree with the person who raised the question "Why use the most toxic treatment for early stage bc right off the bat -- why not save it for later IF you need it?" I am 9 years out, still NED, and have never had trastuzumab, a taxane, any blood boosters like Neupogen, or an AI. HR-'s get the most bang for the buck out of them, not HR+'s. (And if one makes it beyond 5 or so years out, the chemo itself is no longer protective anyway -- although I did sucker for that).
By the way, I too avoid eating all products that might have acquired hormones or pesticides or herbides such as nonorganic milk, red meats, etc., as well as chemicals in general like hair dyes, etc.
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TCH - my doctor said it was as effective as AC, and, because both adriamycin and herceptin can cause heart issues, he doesn't give them together. I had an ECHO before I started chemo and after the chemo ended and there was no change, not sure if he does another one when the herceptin ends or not.
Herceptin - once chemo ended and I was no longer receiving herceptin weekly, but every third week, I receive pre-meds with my herceptin treatment - IV benedryl and IV Pepcid, the nurse told me they added these to the regimin because I was receiving 3x's as much herceptin each time and they are both antihistimines that work in different ways.
It's good to hear that port removal isn't too bad, mine is coming up in May/June and I'm kind of nervous about it.
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Alaskaangel - I was just reading about tamoxifen and AIB1 last night. Can you explain it to me a little better?? Thanks0
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It is a confusing issue. For my situation, given that trastuzumab was not standard for adjuvant treatment at that time, and given that individuals were not tested to determine their AIB1 level but it was known that AIB1 affected response negatively, it amounted to whether I was willing to continue tamoxifen in case I was among those who didn't have a high AIB1 level and tamoxifen resistance. Since then, there has been further confusion about it:
http://annonc.oxfordjournals.org/content/21/2/238.full
Since the standard tx for HER2 positives has been to receive trastuzumab ever since 2005, it is likely that trastuzumab plus tamoxifen works well. Since this study was done in 2009, it would seem likely that the patients received trastuzumab. The question is, once one stops the trastuzumab, does the resistance to tamoxifen occur? If so, then it may not be a great idea to continue on tamoxifen alone.
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P.S.
What gets confusing is that it is too easy to read what applies to ER+'s in general who are on tamoxifen in the report, and not realize that it doesn't necessarily apply to ER+ HER2+'s. From the link and study I posted above:
"However, our study, as well as most other studies, contains few patients that are both AIB1 positive and HER2 positive. Therefore, no real conclusions regarding the association between HER2 and AIB1 can be drawn from this study due to lack of statistical power. Furthermore, HER2-positive patients were unequally distributed between the tamoxifen-treated arm and the control arm."
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I just came across this,http://clinicaltrials.gov/show/NCT00949247 anyone know about this or a participant? Seems strange after the fda discontinued approval for avastin.
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Hi Sam,
I read the study info- I am curious- I have not heard of anyone being routinely tested for bone marrow mets? Would that be done by bone marrow aspiration? (I can't find that on the web) That seems specific to this study? Has anyone else heard of that?
It does seem like an interesting study.
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LisaGH - How are you feeling? Didn't you have number 2 TCH last week?0
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Hey Omaz- Yes TCH #2 was on Wed. Rough still- the bone pain, chest pain & constipation are getting me this time! I do feel better sleeping though- that's been better. So much weaker this time though- like a 90 year old lady moving slow.
Hoping for another nights sleep- starting to feel my mouth getting weird- going to start doctoring that too- w/ the meds they gave me.
Rest, rest, rest is helping me- Thanks for asking.
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LisaGH - hang in there for #2. Just think, you have only a few more! Water, water, water and rest, rest, rest!
I am going into the clinic in nine hours for #4.
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Water and rest are important, especially the day of and for the 2 days after while your body is getting rid of the chemo fluid...but don't rest too much!!
You should try to get 15-30 minutes of exercise everyday, even if its just walking around the neighborhood, or up and down the stairs, and yes, EVEN when you don't feel like it....if you don't, by treatment #6 you will have a REALLY hard time, and it will take longer to bounce back.
Plus, the lymphatic system doesn't have a heart like the blood system in our bodies. That means there is no "pump." The fluid moves when we exercise our muscles. I exercise because I want the chemo "moving" through my lymph system over and over and over...cleaning out any stray cancer.....lol
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I HAVE GREAT NEWS!!!!!!!!!!!!! I AM NED! Not that I had told anyone, but I went in for a ton of tests yesterday -- bone scan, cat scan, liver, lungs, etc. since my pathology report after my surgery was so awful. (See my terrible signature line re: lymph nodes.) At our appt, my oncologist practically treated me like a dead woman. Uggh. ("There may be no sense in doing chemo since at your stage it's about savoring every moment..." etc.)
Then today I got the results!!!!!! NED!!! NO EVIDENCE OF DISEASE!!!!!!!!! I am so happy I am crying great streaming tears. I just had to tell someone.
Love, and love, and love, and hugs to all!!!!
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Windlass that is awesome. Happy DAnce! Don't ya just love it when they are wrong.
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Windlass what wonderful news!!!!!!!!!!!!!!!!! Hooray for NED!!!!!!!!!
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Windlass I am so happy for you. BTW I am a big node obsesser with 3 positive. My oncologist tells me all the time he has a patient that had over 20 positive nodes and she has been NED for over 10 years. Your oncologist must work on social skills.
Do the happy dance. This is great news. libraylil
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Awesome news
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windlass I am soooo HAPPY for you!!!!!!!0
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That's wonderful Windlass!! WOO HOO!! So glad to hear it!
May you continue NED for the rest of your LONG life!
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Wonderful news, windlass!! NED! Awesome!
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Windlass-awesome news! So happy for u!!
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Celebrate...great news Windlass!
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Windlass I have had you on my mind and the awful thing you were told by the onco. I am so glad he was wrong. I know they want to be honest, but to rob someone of hope is not good for them either. You continue to kick azz. All of us triple positives need to hear these positives. librarylil0
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Congratulations, Windlass - that is truly news to savor.
I have to confess I'm stunned to hear your oncologist's reaction after your surgery - WTF? I do hope he is now coming up with a positive plan now to keep you free of cancer for a very long time.
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Thanks for all the congratulations. Nobody but you gals know what it means to stay IIIC rather than going IV!
Lil: What made my onco's attitude so weird is that a month ago, before my surgery, when he first palpated my nodes and concluded (wrongly) that they were negative, he was totally in my corner. "Ra ra ra! You will beat this, and I will help!" I totally fell in love with him.
Then on Monday when I had my post-surgical followup he was completely ashen, subdued, and uncomfortable. He appears to be a very compassionate man (if you know the Myers Briggs, or MBTI, I would guess he's a Feeler/F) and I think that's the problem. It must be hard getting close to patients you are convinced are going to die, so you just keep your distance and don't allow yourself to hope. But man, it was weird to have him pretty much concluding my tests would be a death sentence before I'd even had them.To be fair, he did continually say "If your tests come back negative, and I sure hope they do, we will..." but the overall attitude was one of doom.
The other bizarre thing happened on Monday when I went in to meet the radiation oncologist (at a different facility) to plan ahead for my treatment. The nurse coordinator reception lady, a total stranger I had never met, actually came out from behind the check-in counter and gave me a hug with tears in her eyes. And weirdly, people there kept putting their hand on my arm, or on my hand, like you would do to someone at a funeral. I'm thinking "What do they know that I don't?"
One thing I learned from all of this is that once you go IV, the whole social world of cancer treatment changes radically. And not for the better.
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Windlass - I think it is time to kick some cancer ass! You are going to do great!!!!!
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windlass congrats on the NED!!! Its so good to celebrate some good news!
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Wildlass
WONDERFUL news!!!!!!!! I am so happy for you!! I can't even imagine how scared you were before those tests.
Hugs XXXXXXX
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Windlass, I am so glad you are here, and you are sharing your story with us. It gives me such hope, I can't even begin to describe it.
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