TRIPLE POSITIVE GROUP
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AA,
Just a quick question. I looked at the studies you linked. I'm wondering what symptom you used to get testosterone prescribed?
Am I reading the conclusion wrong? IT says testosterone does not help vaginal atrophy, and one says it raised the blood levels?
I only glanced, so maybe I'm off.
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Hi Dana, Welcome neighbor, I live in Solon. So sorry that you had to join us,however these ladies are a wonderful source of info. Where are you getting treatment ? I got all my treatments at Seidman Cancer Center Chagrin Highlands. Loved eyeryone there.
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Dana, You are in the right place. Welcome and good luck!
Patin, I have the same problem with my nails! My last TCH was 12/26 and I thought I did pretty well in the nail department. No major problems. Recently, my nails have been brittle and cracking and I was wondering what was happening!! I started putting aquaphor on after showers, but honestly, I can't say it is doing much. The nail problems seem to be cyclical...they aren't always brittle, but then several will break/crack at once. I take 5,000 mg of biotin to help my hair growth, so hopefully, that is helping my nails as well.
Also, my eyes, which were tearing constantly from TCH # 4 and on, have also started to tear again--not as badly, but still tearing. I HATE this!!! Having just read what TonLEe wrote about estrogen and dryness, I wonder the dry eyes are from the tamoxifen blocking estrogen? IF it is, does this mean I'm doomed to eye tearing for years????? UGH!!
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Hi Ladies, and welcome Dana!
-back to the neo-adjuvant convo...I was given this option. MRI and mammo only picked up 1 2cm tumor, so I was told pre-surgery I was not more than a stage 2a. I got 3 opinions in 2009. 2 out of 3 were for doing neo. I was also told it could "downstage" me and result in less treatment. I went with surgery, since I wanted the cancer out ASAP, just a mental image thing, and came out of surgery a stage 3, with several small tumors. I guess neo-adjuvant chemo might have wiped all that out, but I don't regret having the kitchen sink thrown at me. I had my last zometa yesterday, tumor markers are 9, and I will continue with my heavy exercise/nutrition/holistic healing modalities. It sure would be nice to know as Lago said, who benefits and who does not, but until someone knows definitively, I am happy that I did all I could, in my mind!0 -
Hi ladies! Feeling better, still alittle sore around the port site! The sutures are still on, so don't even know what it looks like! I see my PS today, maybe he'll remove them and fill me up a bit! I don't like the lumpy feeling of the implants! Also, tomorrow morning @ 9 I do my first of 4 treatments, on Friday I get to throw my daughter her 13th birthday party! Sure hope I'll feel well enough! If not, I've got my mom, sister and friend that will help me! So wish me luck and I'll check back in and let y'all know how awesome I did!....lol!
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Geewhiz,
My neo adjuvant chemo didn't result in any less treatment for me. That was not really the issue in pre treatment discussions with me. Both my mds felt this was the best course for me and were relatively positive that I might have a very good result. Have no idea why. Maybe because they use it often. In fact, from what I can tell from post op path report, my bs removed most of the area where the cancer was located in and around the tumor clip. Only difference..no cancer.0 -
Hi Dana! You'll love these gals
Nails mine still suck. Brittle, thick, vertical ridges and yellowish tips. Still a little lifted and at this point I don't think that's going away. Do note that I had horrible nail problems with taxotere.
watery eyes. Yup taxotere does that too. Do to dry eye. It could be a clogged duct but for most of us it gets better at about 5 weeks PFC. I still have dry eye but no clogged duct and they don't tear up. My ophthalmologist wants me to use artificial tears in the morning and before I go to bed.
neo adjuevent chemo. My onc said this was more to see response to treatment, no other reason.
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Saw my onc today. As far continued risk of damage to the heart after Herceptin… She said the latest studies (10 year study) states there is no issue. The other studies I guess are older.
edit to clarify: You can have issues during treatment but once treatment has ended and you haven't had an issue there doesn't seem to be any future risk.Also as far as 10 years on ALs. It looks like it's headed that way. My NP wanted to prepare me for that. She said although you had no nodes you had a really big tumor (thanks for reminding me). I let her know I wasn't thrilled about this but we can talk about it in 2-3 years. She said my bone density didn't change from 2011-2012 so I'm doing OK so far. Unfortunately all this working out, D and Calcium will only prevent loss. It will not build up. So I remain osteopenic.
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Hello Everyone,
I am just 48 hours in to a breast cancer diagnosis. Yes, I have the deer in the headlights look and haven't eaten much for a couple of days....
MY QUESTION:
I am what I believe is called Triple Positive - Estrogen and Progesterone were positive but so was the Her2.
Does this mean I have to have chemo or can I just be treated with Herceptin?
I am having a double mastectomy with implant reconstruction within 2 weeks.
Thank you everyone,
Melissa
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Max it depends on the size of your tumor and node status. I believe if the tumor is under .5cm (yes decimal point) and no nodes. you may not get herceptin/chemo. Typically Herceptin is given with chemo for HER2+. There are some cases, like in the elderly or someone who can't have chemo for medical reasons that they may get Herceptin without.
But what ever you read here remember your doctors are the medical professionals. Listen to them. If you don't trust them then you need to get a new doctor or team.
Hang in there. Diagnosis is THE worst part. Treatment wasn't half as bad as I thought it would be. Just a real time suck.
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I have 2 tumors - both between 1 - 1.5 cm I believe. I am pretty sure that each of them are grade 2 - 3.
Does that mean chemo and Herceptin? What is chemo like?
Thank you for your reply....
Melissa
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Max2111,
Welcome Max. We all react differently to treatments and in fact there are a few different chemo regimens or her 2 pos ladies. For me...chemo was not nearly as bad as I expected. There are so many of us here in various stages of treatment to help you along the way, answer your quetions and give you some tips on managing it all.
IMHO...where you are....likely in some combination state of shock, disbelief , bewilderment and fear was the worst part.
Also IMHO....the journey you are beginning was and is stilll an exhausting experience....physically and pychologically. Be good to yourself.0 -
Yes it sounds like you will get both. Chemo is different for everyone and also depends on what kind of chemo you're on. There are several different cocktails for us HER2+ gals. It wasn't too bad for me. First 3 rounds weren't bad at all but your hair does fall out. The trick is to drink plenty of water and exercise when you can even if it means just walking. I swear the power walking helped me from getting really tired. I was tired at the end of the day but I never got flu-like tired symptoms. Granted there are some chemos that you can get that.
But no one gets every side effect. You will get some but not all. Some people do well and a few people have a hard time. They have good drugs for nausea but I never had to use them because I didn't have this side effect. A friend of mine only had hair loss and a little taste change on chemo… and we did the same treatment including Herceptin. My taste changes were minor though.
You can also pair up with someone who has gone through this before you. Contact the American Cancer Society and ask for the "reach to recovery" program. ACS also has a 24 hour hotline: 1.800.227.2345 Also Imerman's Angel's for pairing up.
Also this site limits your posts for a while but you can sent anyone personal messages with no limit.
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Lago,
I don't think your Onc is right. The study covered a series of studies with 12,000 women and came out fall (August if I remember right) of 2012. Nothing else has come out since then.
The researchers estimated that if 1,000 women were given standard chemotherapy with no Herceptin, then after three years about 900 would survive. But if 1,000 women were treated with standard chemotherapy and trastuzumab for one year, about 933 would survive. This means that for every 1,000 women treated with Herceptin, 33 more women would have their lives prolonged. In addition, about 95 more women would remain disease-free during this time.
But, at the same time, about 26 in 1,000 women taking Herceptin would develop heart failure. This is 21 more than with usual chemotherapy.
The researchers also found that longer treatment with Herceptin (for example, for one year) might involve a greater risk of heart failure than shorter treatment (six months or less). But these findings are less certain, as they are based on only two studies and few patients.
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TonLee you might not be understanding what we meant. Yes some women get heart issues with Herceptin but according to my onc those issues happen during treatment not years after treatment has ended. I guess I didn't make myself clear in my post.
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Lago,
No I get what you're saying. But that is just not what the latest data says.
It says specifically that "4.1 percent of people taking Herceptin developed heart failure over a three-year period."
We only take Herceptin for a single year. Part of that 4.1% developed in the two years FOLLOWING treatment.
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But is that for people like us that only get treatment once or does it include those women that have mets and are on it indefinitely till it doesn't work anymore? My onc is pretty on top of this stuff. I mean HER2 is her area of research.
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Welcome Max. I think you will like this group of ladies.
I met with the RO yesterday and the BS today. It looks likes not one Dr has varied from the original overall treatment plan for me. Because this is a new and/or recurrant cancer (docs still don't know) and I already had the SNB & BMX back in 2000, they want to throw the whole kitchen sink at me and I will be having ALND surgery on 4/25 then rads later this summer. I really wanted to be able to skip the surgery and go straight to rads, but even the RO thought it was a bad idea. I know I could probably find a doctor somewhere that would do a more minimal surgery or agree with me about skipping it all together, but all the docs I have seen are at very good NCI cancer centers and I know I need to trust them. On the positive side, depending on the pathology from the surgery the BS thinks I would be a good candidate for the cancer vaccine that he is working on.
Since I can't skip any of the treatments I am hoping to skip the LE, but I know it doesn't work like that. Can I just say that there is not one thing I like about bc, except maybe not having to shave my legs for several months due to chemo. Of course even that was in the winter when it didn't matter so much!
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Lago,
This info was consolidated from several studies over a period of time. Over 12,000 women. So it pretty much covers an "every case" scenario. Though they believe some women have a higher chance of having heart damage...older, hypertension, etc. They are very clear in the conclusion that the risk of heart damage does NOT decrease within the first 3 years.
Back in 2010, the manufacturer of Herceptin recommended heart monitoring for 24 months after tx. They knew then some women didn't develop heart issues until well and done with it. Now this study pushes it out to 3-5 years and a lot of Oncs are monitoring hearts longer.
Some women are having "cardiac events" 3 years out who never had an issue during tx.
Your Onc may be on top of things, but I don't understand how she can make that statement when the latest data is so clear about it. (Not to mention the fact that BEFORE this data came out, the people who make Herceptin said women experience damage AFTER tx. They just didn't know at that time how long it could go on before it dropped or plateaued.)
Since Herceptin heart damage is often asymptomatic, you could have it right now and not know. Which is why the manufacturer and now the data support monitoring heart function for at least 24 months post Herceptin.
I'm sure your Onc is wonderful, but I can't find a single sliver of data to support her statement. Plenty that says the opposite though.
But isn't this the same Onc who hasn't been monitoring your heart function all along?
I'm sure you're fine, and this isn't to worry you. I just find her statement and not monitoring your heart rather bizarre.
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Yeah this is the same onc that worked with Dr. Slamon and presented the initial results of herceptin back in 2008 and was also doing the Kadcyla trails. She has been working with this Herceptin since way before FDA approval for metastatic disease. Maybe she is reading something different from you. My heart function has been monitored just not scanned.
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Bren, I'm so sorry you have to have ALND. Lymphedema is not an absolute, though, right? So we'll hope for no LE and a "yes" for the cancer vaccine.
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Bren a friend of mine did ANLD and rads. We were treated around the same time except I didn't get rads and only 10 nodes removed. I have LE she, to date, doesn't.
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Welcome max2111 - did they tell you whether your tumors were DCIS or IDC? That may make a difference re: chemo/Herceptin
Bren - I had to have ALND and had rads, only a month out but so far so good, no signs of any LE
Cgesq - I noticed just in the last day or two that my eyes are tearing again and my last chemo was Dec 2012, my nails were bad on Taxotere and just after, but with just Herceptin they are now thinner and splitting very easily
Barberchic - wishing you well tomorrow with your chemo, hope you are feeling well for yr daughter's 13th birthday party0 -
Yeow this thread is growing... ! Welcome dana, max2111 and bren58.
TonLee - My original Rx came with completion of the clinical trial, through Mayo Clinic, and my PCP received the year 2004 recommendations for continuing it should that be my preference, which included periodic lab testing. As a long-term survivor, some things about the problems involved that result in our desire for something such as testosterone are especially frustrating to me. In this era of advanced communication, knowing that oncologists and obstetricians have done so little communicating with each other about the devastating results of chemotherapy on something so meaningful for so many women, in order to try to work together on it in our behalf, is one particularly unpleasant aspect that should by now have at the very least resulted in specifically being listed as a likely result for many women on every consent form patients sign when they agree to chemotherapy. That doesn't mean every woman will have that result, but it ain't honest not to put it out there up front for all of us to be able to consider. (So what else aren't they openly telling us...?) Also, why is this problem referred to so politely and clinically most of the time only as "VA" (vaginal atrophy), when in actual fact it isn't "just" dry, thin vaginal tissue but also dyspareunia (if we must remain clinical about this problem). The reason I believe it continues to be written about using only vaginal atrophy as terminology is because there is such a strong tendency among medical professionals to bias the discussion away from the devastating emotional aspects of it as we try to maintain relationships with others in spite of this problem, and as long as it can stay isolated to the terminology of a dry vagina, the far more limiting professional advice about using various types of lubrication gets professionals "off the hook" (and out the door) so that they don't have to deal with the "messy personal details" involved.
I quickly listed some other trials for you besides the one I was in about the use of testosterone for consideration, and in order to present as objectively as possible I haven't reviewed those myself as yet.
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geewhiz and lago, your choices for treatment given your situations are very logical to me despite the wish we have to choose less toxic therapies... I have every hope that your treatment does what it is intended to do.
My concerns about adjuvant use of chemotherapy in terms of overkill so to speak are with the understanding that the majority are diagnosed at earlier stages. One of the comments I saw in regard to the study about the success with the use of the combination of lapatinib and trastuzumab is this confirmation of my "notion" that for some unaccounted for number of patients, chemotherapy doesn't improve their outcome, it worsens their odds:
"If we can efficiently target factors important to an individual's tumor, we can shut down the cancer. If we are not efficient, we are training the tumors to be resistant and develop other tumor drivers."
Since that quantity of patients is not indicated in any of the statistical tools that we commonly use, I feel that earlier stage patients are receiving counseling that is biased.I am of course only one person so I hope you take my opinions as being just those of one single person.
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WOW...tx for the warm welcome ladies......and hi Eileen in Solon.....Cleveland Clinic!
Hi Max.....I'm new too!0 -
bren58 - I am sorry you are dealing with "it" again, and glad you have had some years of peace in the meantime.
You and I are part of a group posting that is a minority. The number of those who post and are more than 5 years out from original treatment (recurrence or not) is far smaller than those who are in the group who had treatment less than 5 years ago. There are plenty who are long-term survivors, but they do not often continue to post. I personally feel our posts are valuable if only as encouragement and evidence of long-term survival.
My history is valuable even if only as one piece of evidence that not everyone who is HER2+++ requires trastuzumab. Now that giving it to HER2 positive patients is routine, that is a truth that is invisible.
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AlaskaAngel, my theory (for what it's worth) is that they don't reveal all of these things to us, because they don't want to scare us away from doing the chemo. Whether it's because they really want to 'cure' (the word my onco used) our cancer , or because they get a kickback from 'Big Pharma', or maybe they don't know, I don't know, but you're right it isn't honest for them not to reveal all the possible outcomes. I'm just now beginning to experience some of the vaginal problems, but my main concern right now is the Tinnitus I most likely will have for the rest of my life. When I first started having it all my onco could say was "I've never seen a case from carboplatin". Like I'm making it up. I took him a study about it that proved it does and he still said he'd never seen a case from carboplatin. I looked back through all my papers they gave me at first for the side effects and there was one notation about a rare side effect 'hearing changes'. After a few months, He did finally admit that it was most likely the carboplatin that caused it and he said he had seen one of the other platinum drugs cause it on occasion. I am learning to cope with it, but I really feel like I didn't have all the information I needed at the time I was making my decisions. I have also since learned that if he had lowered my dose I most likely wouldn't have had tinnitus. It does make you wonder what else haven't they told me.
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GrandmaV,
Tinnitus can be quite difficult. Mine came from hours of using a recording device, not chemo, but it is very unpleasant. I hope possibly yours at least either varies in intensity, or diminishes with time.
Prior to chemotherapy I asked my onc what effect the chemo had on the brain. At that time, oncologists were pretty much in denial about the existence of "chemobrain". His response was that in over 25 years of his practice he had only seen about 5 patients who were "completely disabled" by it. I gathered that in his mind, anything less was negligible, whether patients were entitled to open disclosure or not.
It is patients who share information and advocate for honest communiation who end up bringing some truths to light.
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Tonlee and Lago, About the risk for heart damage after tx with herceptin. I didn't have any change with my EF but My cardiologist kiddingly said I'm stuck with him for 5 more years because the risk of heart damage continues for up to 5 years after treatment. He has a lot of patients on herceptin and seems to keep up with the latest info.
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AlaskaAngel, you're right about that. Next time I see my onco. I'm going to ask him if he reported my tinnitus as a side effect. I kind of doubt he has.
Thanks for your concern about it. It was very loud at first for about 2 weeks and I nearly went mad. But now it's mostly at a tolerable level (I've had it over a year). I've been using white noise to sleep and that has helped. Occasionally I'll have a day where I can barely hear it. I've found some great information about it on the American Tinnitus Association web site. I've been learning about trying to train your brain to ignore it and that it's not really a sound, but damage that the brain interprets as sound. I had to find the right frequency of white nose (my frequency is actually called lavender noise) that when you listen to it the brain focuses on that noise and it cancels out the tinnitus. I don't know if it will work, but it does help me sleep. I also play it in the car sometimes when I'm having a hard time coping with the tinnitus.
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