TRIPLE POSITIVE GROUP
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Sorry my posts are out of sequence, I'm playing catch up again.
Wow specialk you sure have had a number of health challenges yet you remain positive and unbelievably helpful to all of us. You are definitely one of God's angels on earth 😊
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lita - I had the Breast Cancer Index testing done on my original tumor at 4.5 years into anti-hormonal therapy. This is a relatively new genomic test designed to help determine whether continuing anti-hormonal therapy beyond the traditionally recommended five years holds benefit for each of us individually. Because the testing is done on the original tumor, analyzing a specific pathway, the result provides information not only about future benefit, but past benefit. My result fell into the 10% of patients tested who have a high risk of recurrence, but a low benefit from the drugs
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deni - that is very sweet of you to say. I try to approach any challenges that come my way with positivity, and often humor, and hope that I'm successful most of the time. I have said before, any help I provide here is my silver lining
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hapb - this test is currently being used at the 5 year point because this time period on anti-hormonals is what has been determined to be the current standard of care. Study data, initially on Tamoxifen, indicated benefit in prolonging anti-hormonal therapy to 10 years. There are current studies looking at extending aromatase inhibitors as well. The BCI is administered by Biotheranostics, and was developed to address this question so that patients didn't stay on drugs with side effects longer than necessaryif the benefit was not confirmed. I don't believe it is currently being widely used as it is a newer modality. I think there is potential value in doing this test sooner in the process, but it may be difficult to get a physician to order it any earlier. I have seen a couple of people use it closer to initial anti-hormonal treatment, but I don't think anyone is ready to use this test as a determining factor in whether to start anti-hormonal therapy. Keep in mind though most patients will fall into a low recurrence/low benefit or high recurrence/high benefit result - and this is a test meant to guide decision making at the 5 year point. My high recurrence/low benefit result is unusual and what prompts the look back at effectiveness. It is also important to note that low benefit is not the same as no benefit.
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I concur about you being so inspiring, SpecialK. I can't believe what you've dealt with. You too, Hapb.
You mentioned they tested your original tumour 5 years in?? Do they keep the tumours after excision??? Sorry to sound so clueless; we don't have this test here in Canada (so much we don't have compared to the US even though I do feel I received good care)
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Today in the morning when I red this thread I thought that we all had a very productive Friday night, there was a lot to learn. I believe I said it before, I am prepared for any drug available because I want to be able to tell myself that I have done everything I could. I will start running as soon as I will be able to and will eat clean 15, buy ecological dirty dozen, I changed all my food containers from the plastic to glass with silicon locks (very cheap and good quality at IKEA, here is my chance to promote a Swedish brand). I told my husband we have to find a source to buy ecological poultry, we do not have so much of it in the stores where we live. Usage of antibiotics in meat production is forbidden in Sweden so whenever you find any Swedish sausages please be aware they do not contain any. No sugar, no alcohol, I have copied this list Posey published.
Do you know anything about eating mushrooms while doing chemo? It is mushroom season now in Sweden, the forests are full with porcini and Suillus luteus, they are so delicious. Even if I promised myself not to go into the woods because there are lots of ticks, you can easily pick a full bag because they are just growing along the pathway. According to my dietitian I can eat everything except for grape but in case you know anything about mushrooms not being good while chemo?
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I am following the discussions of "over-treating" triple positive status and know there are clinical trials going on all over the world presently trying to eliminate some drugs, for instance chemo. I guess the results are yet not in but salut all those that are willing to be part of these trials and perhaps having a smaller risk factor gives you the certainty to do so as well.
Personally, as PoseyGirl mentioned, I just wanted the big guns. For me it was a no-brainer considering the size of my tumor 6,5x4,3 cm. The size of a Magnum Ice-cream...grown in a 2 year period in-between mammograms. The idea of not following current protocol did not even enter my mind. My fear of this horror coming back is real so reading up on diets, exercise and so forth to try to do my small part. No smoking and have no desire to have a glass of wine anymore. However being restricted to a "ketogen diet" seems overwhelmingly difficult and exercise is not my strong suit. It takes time to change.
On the positive note, I went threw an ultrasound yesterday and it was all clear...:) That means I am ready for work on Monday and feeling happy to be part of the world again but worried it will be too tiresome full-time as well.
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Kattis, congratulations on the US results, it must be a relief, good luck with your new job. Cherry
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hapb - it is certainly worth asking your MO about the possibility of doing the BCI test early, but be prepared for a formulaic response - I am reasonably sure your MO will advise you to continue AI drugs for 5 years, or as long as you can. We are not yet at the point in personalized approach to treatment where they will advise against it unless it is intolerable. Keep in mind that it is advisable to try different generics, or drugs within the class, if you experience side effects. I have done this and finally arrived at a formulation that I could tolerate.
posey - thank you, for some reason I seem to be a person who manufacturers things - I was fortunate that until breast cancer the issues were benign, other than the skin cancer which is really just kind of a nuisance. My last skin cancer diagnosis in May was a new kind, an infiltrating - not a nice word. So I had a lumpectomy to the shoulder! I have had one of those on my upper back and lower leg also. Yes, original tumor material is kept in pathology freezers - how long is up to the institution, but they keep it longer than one would think, right? I donated the nerve sheath tumor in my calf, found 18 months prior to the breast cancer, to the research department of Moffitt Cancer Center. They originally thought this was a sarcoma due to its location as the type of tumor it was is not found in lower extremities, and the prognosis if it had been was very grim. 20% 5 year OS after amputation at the hip - I was very lucky it was an anomaly instead.
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PoseyGirl, My tissues (biopsies, lumpectomy, mastectomies) are save for 10 years. I don't know the protocol everywhere but the Customer Service POC at the pathology lab that did my readings told me that by law they had to save the tissue for 10 years.
SpecialK, I echo the others. You have been such a help to me. Thank you again.
Kattis894, I understand what you write. I wanted everything they could throw at me and my breasts gone. I understand other's decisions as well. We each must make our own decisions as to what is right for us.
I had my first Prolia injection on Wednesday. Managed a year of chemo / Herceptin with a healthy mouth. I am broken out inside my mouth since the injection. As my MO was going over the side effects, that were repeated in more detail by the Nurse when I got to "short term treatment" for the injection, I had a thought of screw this I am out of here. (Actually the words in my head were not that nice ... LOL). It is a good thing that there is six months before I go back to the cancer center. I am pretty sure I am at a place where I want my MO to leave me alone.
Have a great Saturday.
Vicky
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coachvicky - so sorry you are having mouth issues with the Prolia injection. I have been on Prolia since 2012 with no problems and I have a very sensitive mouth - often get canker sores, and did have issues during chemo. Ask your MO about Caphosol or Mugard to use when you get the next Prolia, and maybe do the baking soda/salt rinse in the meantime. Eeesh! Hope it goes away quickly.
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Thanks SpecialK ... I will ask!
Vicky
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You ladys are the best. What is a prolia injection? and what is it for? sorry but never heard of it...
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Hi Kattis!
Prolia helps build up bone strength and may help prevent bone mets. Those of us on aromatase inhibitors should have our bone density checked periodically to make sure that we don't have osteopenia or osteoporosis. If we do, our doctors may prescribe us Prolia or a biophosphonate like Fosamax. I have osteoporosis after 2.5 years on Aromasin, so I take Fosamax once a week.
Hope that helps!
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Thanks EleineTherese, I am getting Zoledronic Acid every 6 months that is suppose to also help the bones and prevent bone mets. They told me it is a fairly new drug. I have received it twice and lucky to not feel any complications such as a flew like symptom that some people seem to get a few days after the infusion. I guess Prolia might be similar but maybe given later on as the hormons slowly break down the bones? I am just glad to read there are so many different options of medication..:)
I am trying to understand the significant of having a total respons from Herceptin, something I did not have, however my tumor shrunk a lot and my Ki 65 went down as well, but not to 0%...my onc did say only about 20% of patients have a total respons and thought my cancer would be more sensitive to letrozole given it was 100% sensitive to oestrogen. Still a bit worried about this and trying to find out more.
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Hmm, you're getting a biophosphonate, too. I think your drug is called Zometa or Reclast in the US. I would get Prolia if Fosamax doesn't work. Fosamax is cheaper so my insurance wants me to try that first.
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Hi Kattis,
Wouldn't it be impossible to talk about response on Herceptin since it continues after surgery for awhile? Or are you meaning response to Herceptin up until surgery when they do the pathology?
I had complete response to chemo. My understanding with triple positive is that it's a favourable thing, but not as huge a prognosticator as with Her2 and triple negative subtypes. I've read a few articles where the possible explanation for this is that with our type, there is the Herceptin as well as hormonal therapy after chemo, surgery and radiation, and these things are big treatments in and of themselves. So, if someone doesn't get pcr, they still get continued Herceptin and the hormone therapy.
There is also the issue of crosstalk with our type, where being on two treatments can lead to escape pathways (don't ask me what this means), thereby leading to resistance to one of the treatments. Not sure how this plays into the pcr discussion, but apparently our subtype is still not understood as much as it will be. For instance, you can be fairly low ER positive and Her2 positive. Or strong ER and/or PR... how does this affect how each of our cancers are driven and corresponding treatment? It's all very complex. I hope much more is known soon
Others on this?
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hapb - you may have no deleterious effect from anti-hormonals, but you should have a baseline DEXA so you know the position you are starting from. How recently was your last one done? I was osteopenic due to a total hysterectomy at 45, but stable and untreated, prior to chemo. I could not tolerate oral bisphosphonates due to reflux surgery in 1995 - tried both Boniva and Actonel. Reclast IV was not offered at that time by military hospitals, so I was out of options. I know what my baseline was because I had a DEXA the same day as the mammo and US that led to diagnosis. By the next DEXA slightly more than a year later - after chemo and Herceptin were done, and 6 months into letrozole, my density had declined. Prolia has brought me back to normal density and my oncologist has indicated that I will remain on it as long as I take an aromatase inhibitor.
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I'm mainly a lurker here and remember when TonLee started this thread in 2011. I was 63 when diagnosed and my tumor was 2.6cm with 3.0cm of dcis. I had a lumpectomy, chemo was taxotere, carboplatin + herceptin, 19 rounds of radiation (Canadian protocol). Followed by 7-1/2 years of generic arimidex (Teva brand). I was so lucky that I had wonderful doctors..I found my oncologist when I went to him for a second opinion.
I had no idea how I was going to get through this when I started and I was terrified as my mother died of breast cancer when she was 56. But I did somehow and I live alone...brothers and sister just weren't in the picture, really, and they only lived 90 miles away. But what did come my way just before I was diagnosed was an older horse, Buck, who was about 25 years old. All I did was brush him and walk him and tell him he was wonderful...I just love older animals. He was with me through the whole year and then when I finished herceptin I found out that he had a very short time to live. Being that he was so old I knew it was better for him to cross the rainbow bridge. I knew I could go on without him now that I was out of the chemo/herceptin phase. It's like the universe brought him to me to go with me through all of this. And he is the horse that has meant the world to me.
My experience with arimidex was very difficult at first. I stuck with it and after 4 months things got better. It started to get better when I gave up sugar although that was probably coincidental. My advice is to try to stick with it for a while, change generic brands, and try different AI's. I do know that not everyone can tolerate it and that quality of life is everything.
So what am I rambling about...well I have wanted to share that I have been able to go off of arimidex (generic). During my last visit with my oncologist he suggested that we discuss my going off arimidex....he said that for me, there was no difference between 7.5 years and 10 years. I couldn't believe it...it was as if the barn door flew open. I feel like my old self again...the worry and anxiety have lessened tremendously and I am looking forward to the future. So whey did I wait to share this? Because I had great concern if I shared this it might scare those of you who are just starting.
My plan when I started was to throw the book at this because if I hadn't and a recurrence happened it would make me feel terrible.
So you will get through this and I think it is wonderful that you are able (on this thread) to honestly share when you are scared and frightened and have good times.
You are all in my thoughts and I give kudos to Special K.
Elizabeth
here's a pic of Buck (sorry it is so big)
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SpecialK,
i was offered either prolia or reclast. i am leaning towards prolia because it is given every 6 months whereas reclast is once a year.i figured if i had side effects,then i could stop at the 6 month whereas with reclast i am afraid of side effects for the whole year. any thoughts? anyone here on reclast
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cowgirl,
thanks for sharing your story!God bless you...also Specialk, thanks for sticking aroung for us..
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cowgirl - hey! Good to "see" you here, and Buck's sweet face - yes, the universe brought him to you when you most needed him. Not only does your post bring hope to these ladies who are currently in the trenches, it also provides living testimony that we recover from treatment and go on to live our lives. I am with you on the sugar thing - it has made a difference in my level of joint pain, eliminating it has allowed me to stay on letrozole up to this point.
kae - I prefer Prolia because I like its mechanism better. Bisphosphonates coat the bone making it somewhat less elastic, while Prolia, a monoclonal antibody like Herceptin, slows down the old bone removal process and allows the new bone creation process to catch up. The side effects for both drugs only last for a few days after infusion or injection, if you even experience them.
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thanks specialK!
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Cowgirl. Your post was so uplifting to me. Thank you for sharing your story about your beloved Buck and for posting his picture as well. What a smile it has brought to my face.
Melanie
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Such a lovely story and love the picture of you pal Buck..I love animals too and believe their intuition is something to listen too...Oh I guess perhaps the drug I am getting is called Zometa, I will change my profile. I find the profile very helpful as I move forward almost forgetting what has happened to me I can go back to it. There is so much I just do not understand but I guess science doesn´t either. I would think CpR would be an important factor but perhaps not. The status of the cancer can also change over time so this sneaky illness has the ability to change form to take you over as well. How I wish they knew and find a cure for all this. It seems like such a lottery, some make it some do not. No rime or reason why. Living in this limbo is just so difficult. Family just can not take the uncertainty and just want to sweep it all under the carpet so feeling alone with all of this. Thank you for being here ladys.
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Cowgirl, thank you for sharing your story and posting the picture of Buck. You are such an inspiration, good luck to you.
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Posey, I am also interested to know more about the crosstalk and how two treatments can lead to escape pathways.
SpecialK, I believe you mentioned it before or whether I was trying to ask you because I heard of it. Any information you have on this topic?
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CowGirl13,
Thanks you for sharing your story. I have hope after reading your journey.
I have colleagues that have horses in their coaching businesses. They share that a horse always knows an authentic person. You had a gem in Buck
Vicky
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Cross-talk has to do with eventual resistance to anti-hormonal therapies, predominantly Tamoxifen, caused by the interaction between Her2+ and ER+. Herceptin resistance can also occur, but this is usually a factor in more advanced and/or metastatic cases where Herceptin is used for a longer period (beyond the additional doses that make up the year of Herceptin) as a single agent, and can happen in a smaller number of cases of earlier stage cancer that goes on to become metastatic despite the use of available therapies. Why this happens, when this happens, and for whom this happens is very complex and I don't believe currently there is any way to predict this in the average early stage patient. Some studies have shown increased benefit in using aromatase inhibitors to treat the ER+ aspect, as this class of drugs seems to be more effective for Her2+ patients who are also ER+.
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SpecialK, does it mean that usage of Herceptin weakens the effect of Tamoxifen during the first year? Does it mean that the cross-talk occurs only during the first year when Herceptin and Tamoxifen are given simultaneously? When they say that Herceptin finds the cell, binds the HER2 receptors and either signals for immune system to kill the cell or starves it to death on its own, what time frame are we talking about? And if I am 80% ER, 60% PR does it mean that I have 20% of ER negative cells and 40% of PR negative cells? What are they then? ER/PR-Her2+?
About whether the meds are working or not this is exactly the same answer I got from all four oncologists I met, one of them is holding educational lectures about Her2, I saw it after our appointment though. After the surgery there is no way to determine whether the meds are working or not it is just wait and see, which I had such a hard time to accept. I asked her whether it is possible to see if the excised tumor reacts for the treatment and she said that there was lots of attempts to test this way but however there are no conclusive results basically meaning that the tumor when excised do not behave the same way anymore. All four though claimed that the majority of early stagers are over-treated and receiving this aggressive treatment because the doctors aim to eliminate the bc. Then if it is coming back and why nobody knows.
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