TRIPLE POSITIVE GROUP
Comments
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KB870 - there is some thought that Tamoxifen may work less effectively for those who are ER+/PR-, and I believe that this arrangement is more likely to be Her2+. This is some older info, but I think the opinions still hold.
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I too am high ER (90), and low PR (5). I have often wondered about my pcr, thinking that the Her2 component must be driving the cancer - but who knows
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Great article Lita...
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Posey I am jealous of your CpR...that only means the treatment really worked and I would think if you had some lingering cancercells in your body they would be as Cpr as the original site...it is gone..:) I was not as fortunate but who knows...perhaps the hormons will take care of the rest at this point. Having no nodes involvement considering the size of my tumor was a pure miracle but pretty sure it still has travelled in my blood stream...there is not way they can detect if the tumor had blood vessels according to my onc...but it seems likely in my mind...this means I would perhaps most likely experience a come back somewhere in my body...:( but miracles do happen in this illness all the time and considering my high PR 85% perhaps that is a good thing according to Litas article...well hoping...:)
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I have decided not to mention cancer to my coworkers. I need to have the day as a "free zone" for my constant worry and today I did not even have time to think about it once...it felt good...if someone asks I am cancer free that is all...
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Katiss, I know exactly what you mean by being confused by the diet stuff. In my lifetime I've seen so many dietary truths be debunked and seen - and followed! - so many crazy diet fads. I remember at one point, when high protein was all the rage, my mother eating the prescribed Weight Watcher FIVE hotdogs for dinner. Without buns, of course. And I remember a friend scouring the low-fat handbook to find out what score HoHo's had. And eggs were bad, but now they're good. And butter is bad, except it is a mono-saturate and mono-saturates are good. And I remember at 13, when I weighed about 115 pounds at 5'7," devouring a Seventeen article about dieting - and followed it.. It was a rite of passage back then to becoming a woman. Aaagghhh...
For myself, I like the food pyramid. And for exercise I've found as I've gotten older that aerobic exercise isn't enough to keep the weight off, but light weights do the trick.
I'm totally at sea with supplements, except for B12 which I recently learned I was deficient in. So now I take B12. Calcium tablets killed me but I recently read a JH study that they are linked to heart calcification! So go figure.
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SpecialK - I'm not at my computer with my terribly disorganized bookmarks but one of the articles was an Italian study and had the world "Triple Positive" in the title. It had a follow-up article, too. They looked at levels of ER expression and found that >50 had better outcomes. I don't think the study looked at different components of treatment, though.
I'm wondering if at some point the level of PR and ER expression will determine if we actually fit the profile of Triple Positive. I wonder what the levels of ER/PR expression are among the members of this forum and if there is a pattern in presentation and outcome. Did I mention I am a statistics nut? Not the math part which I never got but rather the trends.
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lita - I think it is generally accepted that less than 10% is borderline negative, but again, how thoroughly are they looking as different slides may contain differing numbers of receptors, and once they get a "positive" result they stop looking. Kind of like being a little bit pregnant, lol! One interesting aspect of the high ER, low PR discussion is that is may be more prevalent in older patients, whereas I have seen numerous mentions of Triple Positive being more common in younger women.
On the food front - on letrozole, if I eat according to the food pyramid, or even eating South Beach diet style - which is essentially sensible Mediterranean - I will gain weight. I am an n=1 trial in that I have had to eliminate some foods to enable weight control and/or loss. Now that I have it figured out for myself I am happy, but I know that most people are not willing to eat the way I do.
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SpecialK - what does n=1 trial mean?
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lita - a trial consisting of a single enrollee, essentially what amounts to anecdotal evidence.
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Kattis,
Take it easy as you go back to work! I need to find a way to get more exercise in my life, too. Fortunately, it is getting cooler here, so my sons will be more interested in taking walks. I'm looking forward to autumn.
Yes, I need to get my diet straightened out as well. I'm currently trying to get rid of pasta and white rice, but I love my noodles!
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I agree very much with Hapb re: diet and exercise. I feel so much better when I eat only fruits and vegetables, more energy and less pain. I find plenty of variety too so it's pretty simple to follow. My MO and BS told me the best thing I can do to avoid recurrence is to maintain a healthy weight (which I am at now), exercise and eliminate stress. I walk 3-5 miles everyday and that really helps reduce the muscle stiffness. Sometimes I crave the naughty food but I think that's stress induced. Every single time I eat something from the bad list I feel crummy for a few days. The plant based diet might seem restrictive but it's so worth it because of how you feel.
This might not work for everyone - just sharing what works for me. -
My nephew wrote me that a lawyer colleague in his firm got her dignosis today. I cried. I still cry every time someone new joins us.
He asked what he could share from my journey and I said EVERYTHING. I gave him this site as a great reference.
And then I reflected ...
I exercise 6 out of 7 days and have since diagnosis. I just feel better and in control. I am 50 plus pounds lighter.
My new boobs look pretty good on this frame.
As for eating, not much process and a lot of protein and fresh things.
I do like American cheese!
And I drink red wine.
And I will sometimes smoke a really good cigar.
And I have had 8 gin and diet tonic since diagnosis.
I don't know what my future holds. I know who holds my future.
At some point on this journey, I decided to enjoy life and not worry so much. Hubby made pork belly last night. I hit the table with my hand when I took the first bite.
Life is good.
I am thankful for all your posts.
You keep me alert and educated.
Vicky
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hey Kattis, that's great that you were so busy that you were distracted from all this. Way to go
I am not as evolved as many of you here on diet. I have almost eliminated dairy, want to get to where I only eat chicken and salmon, am still grabbing a little sugary treat here and there (my biggest weakness!)... I always try to pick vegetables to eat now, never eat rice or potatoes, I will allow some grains here and there. So I am not sure I will ever be as "good" as you all, but I am making pretty good choices and know that if I take baby steps, it will come. I was pretty up on my exercise this summer, but the last two weeks have been so chaotic with the kids back in school and starting up with a Christmas charity I run...oy.
Kattis, while I was thrilled with my pcr, not having one doesn't mean much for our subtype because of good adjuvant treatments.
Re: the ER and Pr discussion re: age, I was 47 when I was diagnosed and was 5 percent for PR.In reality, I am double positive and I guess I am on that line of "older woman", SpecialK.
Lita, I too am a bit on the crazy side with trends. I fully analyzed the ladies who posted on the Stage 4 forum (shared some of that here). I even drilled into some of their treatment histories for the double positive and triple positive ladies. I will say that there was a trend that arose that quite a few who did recur had had to stop a certain treatment, or had their first diagnosis before Herceptin was around, etc.
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hapb - I am so sorry for the loss of your friend, cancer is heartless.
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Coach Vicky thank you for your uplifting post! Yes we do need to enjoy life and not worry so much. I don't want to spend whatever time I have left being anxious about what may or may not happen. I do enjoy a treat now and then but my body can't handle the rich foods any more I guess. Although that pork belly sounds delish.....
Thanks for the positivity 😊
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How horrible for you, Hapb. You must be beside yourself. There are no words that can offer comfort during what has been an awful time for you.
I'm so sorry
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Posey - you are correct when you say that the a
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Sorry for your loss, Hap. Be gentle with yourself. My best friend had lived with stage 4 for 5 years but entered hospice the same week I was diagnosed. She died the same week I started chemo. I miss her! She lived life to the fullest in those 5 plus years. Travel, visits to grandchildren, lengthily correspondence with friends and with others she knew had cancer. She is my role model for living and dying with cancer.
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HapB, I am so sorry about your friend.
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Posey, I remember this post about the probing but I cannot find it, it was quite interesting I remember. I am not sure I understood you exactly about the recurrence, not a native speaker. Did you mean that those who recurred actually did it because they had to stop a certain treatment or that treatment fulfillment was not playing a big part when it came to recurrence? I am also reading an older thread for Her2 that started 2007 and there you can clearly see how many who did not received Herceptin recurred.
I talked to my nurse at the oncologists office and she said the same thing that those who recur often do not fulfill the treatment like skip their hormonals etc. The oncologists I talked to, and I did talk to four in two different clinics, they are more careful in what they say but this is due to strict confidentiality when it comes to the medical records, I am sure it is the same in US. When I asked them whether they have seen many recurrences for my type of bc and my stats, I got the identical answer from all of them, that they have been there for such a long time that they have seen everything but they have also seen many others, way more, who did everything and it went well. But there is no way to know who will recur and who will not, all of them claiming that Herceptin changed the picture for those who are Her2.
I will meet my oncologist, the last one I met, I liked her, in two weeks and I will ask her when the first year starts for us triple positives. If the risk eventually decreases over course of five years according to this Dutch study SpecialK posted I want to know when does this first year starts for my oncologist.
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My deepest sympathy Hap.
Vick
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Kattis, yay for your new job keeping you busy. I am working from home and it is good for me even when I do not want to do anything like today for example.
Right now I am eating everything because I am in treatment, but later I will start with a plant-based diet.
Coachvicky, you are such an inspiration I always smile when I read your posts, and this is a rare sight right now, I am not smiling much at all. Trying for my youngest though.
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I have a question for those who did weekly Taxol och Taxotere, because both are taxanes.
I had my 6th infusion of Taxol yesterday and today I am not feeling this well. Yesterday evening I noticed how swollen my feet have become and put on the socks I use for flying, laid down with my feet up for a while and arrange them to be elevated during the night but still swollen today in the morning. Even my fingers arearesomewhat swollen . And I have this pain in my left hand that I cannot really determine whether it is neuropathy or bone paint or joint pain. I do not feel it in my finger tips and there is no numbness but my fingers are aching when I am doing something, like in the kitchen or type on the computer. I do not feel any pain when I am not moving my fingers, but when I do it is rather painful sensation along the finger. So what would you say, is it neuropathy or something else?
I had a conversation with my nurse yesterday about it and according to her they cannot do anything about the neuropathy but postpone the treatment when it comes. They had an educational class about it last week and the educator told them that even though they experience that B6 helps the patients there is no scientific proof for it. And I do not want to postpone my treatment either.
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cherry - taxane chemo is well known for causing both swelling and bone pain - this is very common. Classic neuropathy with taxanes is more along the lines of tingling and numbness, I did not experience pain with neuropathy, but some do. I think it is more common to have painful neuropathy in the feet because standing and walking puts more pressure on them. I had to go on a diuretic part way through chemo to help with swelling - I could not fit my shoes on, and this helped a lot - I stayed on it for quite a while afterward as well, and then weaned off slowly. My oncologist prescribed triamterene as it is easier on the kidneys, and not potassium leaching. Chemo was challenging my kidneys enough that he wanted to be careful while still addressing the swelling.
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Cherry - the pain you describe does not sound like neuropathy as I have experienced it.
The pain in your hands reminds me of a reaction I had to an antibiotic which caused swelling and pain. PubMed says that if you experience swelling in the hands or face from Taxol that you should contact your doctor asap. Apparently this can be more serious than swelling in the feet.
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Hap So sorry for the loss of your long time friend. ((hugs))
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Cherry, I had a lot of leg swelling during Taxol and my dr didn't want to put me on a diuretic. I handled it pretty well with high potassium foods and no added salt and dandelion tea. But about 48 hours after Taxol, I always got the swelling, for a few days. Claritin worked for the bone pain.
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Thank you SpecialK, I remember you discussed it in the original group back in 2011, still reading it, I am now on p.181. Someone of you have mentioned the swelling with Taxotere and deuretics. What about potassium leaching, I also remember that deuretics were rather to avoid due to something, was it due to the potassium issue?
I am trying to understand whether it is neuropathy I am having or not. I do not have any numbness but the pain is tingling and it is worse when I am moving my fingers compared to when I am just holding the book. It is so far not so bad with my feet except for swelling.
Today I really understand that the effect will be cumulative, and that it will be harder after each infusion, and my next one is with Herceptin and it is always harder than Taxol alone.
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Vicky, Great post! Live life to the FULLEST !
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