TRIPLE POSITIVE GROUP

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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Coachvicky, congratulations! What a great news and relief it must be.

  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    SpecialK, you have so much knowledge when it comes to BC, I am amazed. Do you have any links or a further explanation regarding what you posted earlier in this thread about that not all who test positive for Her2 are ERBB2, some are indeed Luminal B. Are there any differences between all triplepositives? Does it affect the survival rates and further statistics? Shall they take it into consideration when they determine the type of treatment? I have the first meeting with my oncologist on Thursday and I am trying to make a list of the questions, have already got some help from people on this board but I welcome every piece of advice. I am impressed that you have been on this thread from the very start. I have not been posting much but from since I am +++ I have been reading this thread from the beginning, because I just want to know everything that may be useful for this type of bc. Am now somewhere on page 60, already pass the story about your husband helping you with your hair and the armpit full of flowers afterwords, these small touching things vs this awful disease, this story made my evening yesterday.

  • Suburbs
    Suburbs Member Posts: 429
    edited August 2017
    coachvicky, bravo and congratulations, Thanks for sharing. I am looking forward to survivorship care!
  • moodyblues
    moodyblues Member Posts: 470
    edited August 2017

    CoachVicky.  I too am interested in the prune study.  :)


  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2017

    cherry - reading this thread from the beginning will be a Herculean task! Kudos to you if you can get through it! One of the reasons I still post here is to show newcomers that you can get to the other side, as well as trying to pass along any tips and knowledge I have gathered along the way. Not all TPs are the same - differences in tumor size and nodal status can cause the addition of Perjeta - or dictate different surgical choices. Some with weaker hormonal receptors may not benefit as much from anti-hormonal meds, and some oncologists chose different chemo regimens for an assortment of reasons - either clinically or center policy driven. If you take my case for example, my onc does not combine Adriamycin with Herceptin due to the potential cardiac issues - even though I had a relatively large tumor and positive nodes. A different onc might have insisted my situation meant I needed AC-TH instead of TCH. If I was treated today, I would receive Perjeta since I fall into the criteria, but it was not available when I was treated. Many on this thread have been able to receive single agent chemo based on stage. So, while we are all TP, there are differences in treatment decisions based on our individual situations.

    Hang tight and I will get you that info on the ERBB2 and Luminal B and the addition of Perjeta. I'm posting on my phone because I had a vascular surgery on my right leg yesterday - I have to keep it elevated - and searching stuff and attaching links is harder, lol

  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2017

    cherry - here is the link I referenced earlier. Determining whether one is ERBB2 or Luminal B might require Mammaprint, no sure if any other testing modalities can make the determination. However, since your diagnostic info so far indicates that you will likely not receive Perjeta, this info may be moot.

    http://www.agendia.com/agendia-highlights-study-showing-mammaprintblueprint-tests-predict-response-to-current-breast-cancer-chemotherapy-and-targeted-therapy-regimens/


  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    That is awesome Vicky! We will get there! I can understand the crying.

    Shel

  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2017

    I also made some notes from a couple of pages back while I was elevating my leg, lol! This will look like a stream of consciousness post, lol!

    LTWJ - I would recommend getting fluids IV for several days in a row, with steroids, to help combat your nausea, and help with potential dehydration from the Big D. Also, if you continue with intractable nausea despite several anti-emetic drugs, ask your MO about a Sancuso patch. It is a longer term, time release skin patch for nausea. It is often used as a last effort due to cost, but those who have used it report good symptom control. When you move to H only infusions, add a probiotic, it made all the difference for me.

    There were some posts about diet - maintaining and/or losing weight can be a challenge for those of us who do use anti-hormonal therapies, particularly after chemo and targeted therapy may have caused weight gain. I struggled with this and my usual approach - South Beach diet and 5 miles a day did not budge the scale one iota. I switched to an anti-inflammatory diet - cut out dairy, soy, peanuts, gluten, eggs, sugar and corn. These foods are either high in sugar - either refined or natural, doused in pesticides in most cases in the US, or people are frequently allergic to them. This was the only way I could lose weight, and maintain the loss. I follow the Dirty Dozen, Clean Fifteen as far as produce, eat grass fed or pasture raised protein, and choose low glycemic and clean, non-GMO foods. One of the issues with following any diet, including a plant based diet, is your personal viewpoint about estrogens in food - many plants are phytoestrogens. Unfortunately, not enough is known or communicated to breast cancer patients about how to eat following treatment. You will find almost as many approaches as individuals, but this is what has worked for me.

    hap - interesting study about short course Herceptin, this was not a trial, but rather a meta analysis of other studies which had a mixed bag of administered drugs and patient populations. Some of what they looked at was apples to oranges If you click on the study itself and read until the end, they admit that there MAY be a benefit in shorter course of Herceptin, but that it needs a better and longer look. Also, the patient population who received the 9 weeks of Herceptin had less than 60 participants - not a large number.

    hap - the Genentech co-pay program has been around for a while, it is purely to help those with high out of pocket costs. I know a number of people who have used it who had no cardiac impact during treatment.

    Also, for the record, Genentech is a wholly owned subsidiary of Roche - which is a Swiss company, not American.

    Edited to change my response regarding the study lita posted to hapb, as she had solicited responses to that information. I had mistakenly addressed my response to lita.

  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Hi SpecialK, thank you very much for the link, I have just red it. I hope your surgery went well, I wish you a full recovery. I do not mind reading a 1000 pages, I find it very interesting anyway, it has become my daily pastime since I cannot read anything else after I have been diagnosed. I understand that it is not normal but what is normal in my current state of mind when everything circles about the upcoming treatment and I want to learn as much as possible. Reading your posts back in 2011 and seeing you here now, knowing that you have been through this treatment, this is priceless for us who just got diagnosed. I did not even know anyone who had bc, I did not know what to do or whom I could talk to before I found this forum. I was so shocked, family, councellors, doctors trying to talk to me and I just looked at them and thought what do they know about my condition, how can they even imagine what I am going through? Now when I walk on the street and see people around me living their lives, running their errands, meanwhile I feel like I am looking at them from a glass jar where my life is in the pause mode because I do not have a free will in the same way they have, at least I know I am not alone. I am soon 45, I just thought how many women in my age get this diagnosis, and when I found this community I saw how many we actually are. Of course I hate this fact and wish no one has ever been diagnosed with bc but for my own part I am glad I have someone to talk to, someone who understands. My point is I will just keep reading. As far as the article is concerned I did not find anything on ERBB2 (does ERBB2 means Her2+ btw?), I thought that Luminal B can be both Her2+ and HER2-. My status is ER80% PR60% Her2+, I thought I was Luminal B but I do not know anything about my ERBB2, shall I ask my oncologist about that? I do not even know how to interpret my hormonal status, if I am PR 60% what does happen to the rest of these 40%, 60% in relation to what? My tumor is 1,5 cm and then I also have additional DCIS, no positive nodes after SN surgery and grade 3. Since they have already took it out no neoadjuvant treatment is valid for me but I am concerned about whether Herceptin alone is enough for us triplepositives. Back in 2011 you have discussed Herceptin resistance in this thread and I found some articles that are stating that Luminal B type with hormone positive tumors do not respond to Herpecin as well as Luminal B hormone negative do which corresponds with this latest article you sent to me. Do you have any more info on that? Shall I raise my concern to my oncologist? Once again, thank you very much for being here for us newbies.

  • moodyblues
    moodyblues Member Posts: 470
    edited August 2017

    SpecialK, I was amazed when researching on vegetables how many contain estrogen/(phytoestrogens)progesterone.  It's hard to know what to do, I actually thought about going vegetarian until I started to research.  We're darned if do and darned if we don't.

  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    moodyblues, exactly what I thought when I now saw the list of phytoestrogens on Wikipedia. I have adjusted my diet since diagnosis at first excluded all proteins but now started with fish and chicken because I red that I will need a source of protein during the chemo treatment. I have stopped with diary and beans and trying to buy as much eco as possible, have now red the list of Dirty dozen and Fifteen clean to my husband, but oats, really? I have been eating a large portion of plain oatmeal with a dried cranberries for a month now, does it mean I have to stop? And even apple and carrots? What can we eat, I stopped eating bread as well, no pasta, very little rice and only basmati. In every book that contains anticancer recepies it says that one shall eat pomegranates. And we did, we love them and I always bought a lot during the season. And what about curcumin, is it good for hormone positive bc or not? I am all confused. Back in 90-es I was told that curcumin prevents cancer, since that I used it in all my stews and soups, later I found out that is only effective with pepper and started adding it as well.

  • bareclaws
    bareclaws Member Posts: 345
    edited August 2017

    I am on Medicare, with a Medicare Supplement and have only been charged my deductible, which was $181, if I remember correctly. Medicare and Spplement company have paid everything else. I had expensive private insurance but knew we couldn't afford the deductible, so breast tumor had to waituntil I turned 65. Everyone should have Medicare. And not have to wait until they're 65.

  • Tresjoli2
    Tresjoli2 Member Posts: 868
    edited August 2017

    way to go Coach Vicky!!!!

  • T-Sue
    T-Sue Member Posts: 217
    edited August 2017

    Congratulations Vicky! You made it! Hope you all have a celebration of some sort planned. Come back to this forum and let us know how your doing!

  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited August 2017

    Hi everyone,

    I tend to jump off the boards for a week and then want to catch up. I always am trying to find a balance of what I can handle...

    CoachVicky, yay to you. That's wonderful. I am fearful of stopping treatment with just two Herceptins left. I wish I could reframe that.

    SpecialK, I too am stunned by your knowledge. I keep thinking you must be a PhD!!!

    Today I went to the hospital with my neighbour's mum as her family is out of town. She is 77 and has a smaller hormone positive tumour with just one node affected. As the radiation oncologist was talking to her about nodal involvement, I felt so emotionally triggered, I.e. Here I am stage 3. I get so scared (with neoadjuvant chemo, I don't know how many nodes were affected - my MRI didn't quantify really?! I had pcr, but I'm still frightened a lot). I don't think I can help out that much right now; I was glad to be there for her, but it's hard. And later, she was saying how badly she feels for younger women like me who have younger children - I am 48. I wonder if this anxiety will ease at all???


  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited August 2017

    Poseygirl,

    I was 46 when I was diagnosed, and had three children at home. I, too, was diagnosed at Stage IIIA, with a 5 cm+ tumor (which had a little satellite tumor-friend) and one node that tested positive. Now that I'm a few years away from treatment, I feel less anxious and paranoid, and more at peace. HapB is right; it gets better. ((Hugs))

  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2017

    cherry - I think there are a lot of people walking around with burdens - who knows what the people you pass each day are dealing with in their lives. Since cancer strikes so many, surely it has personally affected many who seem to be going about their lives without apparent problems - just think, they may be looking at you thinking you couldn't possibly understand what they are feeling if this is happening to them too. You are not alone out in the world dealing with this, and be assured that we here totally get it - you are never alone when you're here.

    As to your question regarding Herceptin resistance - there are two kinds, primary and acquired. There is some segment of those of us who are Her2+ for whom systemic treatment fails off the bat. I don't think that number is all that high, and try not to preoccupy yourself too much about that. I have been here on BCO for a long time and have seen it only rarely. Acquired resistance usually happens to those who are on these meds for a period of time as advanced stage patients, usually longer than the standard treatment timeline for an early stager. Resistance, specifically to Herceptin, happens when the medication can't overcome the signaling by Her for the cells to divide. This can happen also with anti-hormonal meds and different chemos - you see this also with advanced stage patients who are often started on anti-hormonals as their first line therapy, then switched after the particular med stops working, or are switched to a different chemo cocktail. For those with primary resistance it can be difficult to suss out what is not working - is it the Herceptin, or the chemo, or both? It is difficult to know which aspect of systemic treatment is not responding to some tumors - since the chemo and Herceptin are given concurrently, chemo is known not to be particularly effective on highly ER+ tumors so it is hard to determine which thing is not working when you have a highly ER+, Her2+ tumor. However, prior to the use of Herceptin, the prognosis for TP patients was more grim, so Herceptin, and now Perjeta for those that qualify, have greatly improved our odds. For the record I was 96% ER+, weakly PR+ and strongly HER2+, node positive and grade 3 - which all constitute an aggressive profile. I am coming up on 7 years, didn't have Perjeta since it was not being given to early stage patients yet, and I am still here posting, so take heart.

    As far as hormonal receptor percentages - it works like this - the pathologist looks at a slide of 100 cells. If 60 out of those 100 cells have an estrogen, or progesterone, receptor than you would be considered 60% positive. It conversely means that 40 of those cells lacked the receptor and are not fueled by that hormone. It is entirely possible that a different slide of 100 cells might have a somewhat different number of receptors, as many tumors are not consistent throughout.

    ERBB2 does mean Her2+, it is the genomic test indication for a Her2+ type, along with Luminal B, but I believe that Mammaprint is the only test that delineates this type of identification. Not many oncologists will run Mammaprint on patients who are chemo-bound anyway, so it is unlikely that you will be able to know, but it never hurts to ask.

    posey - you were so nice to go with your neighbor's mom - it is hard to subject yourself to the added stress of someone else's cancer when you are dealing with your own. Offering your support when you are already worried shows your character. Good on you.

    As for my PhD, it has come by osmosis - I have supported two of my work colleagues, diagnosed with breast cancer after me, by accompanying them to treatment and surgery - a 69 year old and a 35 year old, both single without family in town. I have had an inordinate number of friends who have been diagnosed with breast cancer, more than a dozen. There were three at the same time as me - which is bizarre. One lives here - two others in different parts of the country, all are fellow military spouses I have known for years. My dad and brother were both stage IV patients de novo with different cancers - lung and bile duct. I accompanied another young friend who had been diagnosed with a stage IV sarcoma to all of his treatment last year. My father-in-law passed away from leukemia late last year, and my mother-in-law has just been diagnosed with MDS in the last couple of weeks, which is rapidly progressing. I have had more than 30 skin cancers, a number of which have had to be surgically removed by wide excision (a lumpectomy) or MOHS surgery, and of course my own breast cancer. The silver lining for me is, and will always be, to be able to help someone else.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2017

    hap - you are too kind! I am doing just fine, and hope that you are hanging in there as well!

  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited August 2017

    Wow. What can I say. Thank you and what an inspiration you are, SpecialK. I appreciate everyone's support - thank you all.

    As an aside, my profile is very similar to yours, SpecialK...

    Sleep well, ladies. This last weekend I was in a dragon boat regatta and there were about 7 bc teams. They have these opening ceremonies and the women's boats come together and flowers are thrown in the water. I blubbered as I'm new to it. It was both emotional and uplifting

  • kae_md99
    kae_md99 Member Posts: 621
    edited August 2017

    i admire you SpecialK, God bless you...

  • HelenWNZ
    HelenWNZ Member Posts: 485
    edited August 2017

    Hi just popping in - had my last Herceptin last Friday. What a long year. Feels strange not having an appointment to "look forward" to in 3 weeks. Losing some weight and more exercise is next on my to do list. Thanks for all the posts I enjoy reading and learning what I can from your experiences

  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Hi PoseyGirl, I absolutely understand how you feel, this must be so hard to be reminded this way, not that it is so easy to forget about it either, but I can imagine the stress, we are only humans. So kind of you to help this lady so she would not feel like she is all alone. I am soon 45, I understand about the children and this feeling when you always asking yourself how did it happen? Everybody who moves forward keep saying that it gets better though, I really want to believe it.

  • coachvicky
    coachvicky Member Posts: 1,057
    edited August 2017

    Thank you all for the congratulation wishes.

    Yes, our home was filled with celebrations!

    Here was my blog from Tuesday: http://leaderlines.net/it-is-over/

    Many of you have written me about the struggle to continue. I understand. At Round 4 (my hardest) I did not think I could do Round 5. But I did and so can you!

    When it was just solo Herceptin for 12 rounds, I questioned if I should continue. I continued and so can you!

    I think the struggle is what my MO explained to me about 1/2 way through my treatments as, "I asked you to make life changing decisions when you were in shock." He re-answered every question I had about everything. I think there came a time when my heart began to heal and my head was ready to listen and understand. It was April 2017 when this happened. It was also when I returned to surgery to remove a benign lump from my left reconstructed breast.

    For those of you with Arimidex in your future, embrace this with open arms! It took me about 4 months on 2 different manufacturers before changing to the brand name product. I documented every side effect to give my MO what he needed for the brand name referral. Now, I can hardly tell I take it. Very few & mild hot flashes and that is it. There are great forums here on the product and how women react and deal with Arimidex.

    Best wishes,

    Vicky

  • moodyblues
    moodyblues Member Posts: 470
    edited August 2017

    Cherry.  Exactly!  The majority of my life I have pretty much always followed a good diet.  I stayed away from preservatives, food colorings, artificial flavorings.  I don't eat a lot of red meat or fried foods and am not a big sweet eater.  In the last 12 years unfortunately, my diet was a bit slack due to the fact of a high stress job, strapped to the desk and quick sandwich lunches (high in nitrates).  I said all that to say this, I did try to eat healthy and now with BC I am finding many of the foods that I 'thought' were good are not good for a TP BC patient!  Do we give up food now?  Ha.  I love beans, black beans, chickpeas and don't get me started on kidney beans....I love chili!***OH, and I am currently finished with round four of chemo FULL of chemicals and POISONS aimed to kill things....isn't it ironic???

    Specialk.  Thanks for the tip on the dirty dozen and clean 15, I was aware that some of them had high concentrations of pesticides but, did not know about all of them.  I grew up on a family farm and we used very limited pesticides and relied on nature and hard work to keep insects and plant disease away.  I just feel like I have to start over from scratch with what I thought was healthy and good for me. (scratching head)

    Hats off to all of us fighting this disease, we are still trudging forward!

    Melanie



  • moodyblues
    moodyblues Member Posts: 470
    edited August 2017

    Helen.  Excited for you!

  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    Congratulations HelenWNZ!

  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    moodyblues, I grew up in a family farm too, well until I was seven we lived with my paternal grandparents, then we moved to the city but I still spent every summer there when I was a child and also lived there when I went to university. I know what a hard work it is to keep ecological gardening. I love beans, me too, but cannot digest them very well, so I am trying not to eat those so much. I know I have been eating unhealthy as well, all this hidden sugar and obvious sugar, and even if you prepare your meal from scratch you always eat some popcorn, chips or ice cream time to time but still weekly, not to mention wine and drinks. I cut on those completely after my diagnosis but berate myself for not doing it earlier even if I tried to. Now when I stopped and never even had a dash of abstinence I just think that for not being an alcoholic I certainly did drink way more I should have. It was all just stress and life became more fun with a drink. I did exercised on a weekly basis too. I have some ideas of why I got bc but I think I will never know for sure, the doctors so far said that the only reason I got it is because I am a woman, some of us do. And now some food is not good for this particular bc, no one ever mentioned that anywhere. I have a book with anticancer recipes, they state 12 foods that are good to eat if you want to avoid cancer, beans, pomegranates, curcumin are among those. Go figure.

    You are on your 4th round, wow, good luck. I have not even started yet, I will be meeting my oncologist tomorrow. Many of the chemo drugs come from the plants, at least I know Taxotere does. It does not make it healthier for that for sure. I do not think that you can be very picky about your diet during the treatment, some of us feel so bad that one will be lucky to eat just anything, and the body needs protein in order to build new cells otherwise it will start taking it from the muscles I red.

  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    SpecialK, you are amazing, I believe it takes a certain personality to be able to provide help and comfort in the situations that can actually trigger a post-traumatic stress. But I promised myself that if I ever will find myself in a situation when someone else with the same/any diagnosis will need my help, no matter how stressed I will feel I will step in and be there for them, I know how stressful it could be, but one has to do it. I may come here afterwards and rant about my stress but without this kind of help a person can just go mad, I fully understand it. I do not have any experience of bc as I said. My paternal uncle died from colon cancer last year and he was over 65, my maternal aunt had a precancerous condition in her lady's part but it was excised so early that nothing besides the surgery was required. It was 10 years ago and she was in her 60-es. Otherwise I do not know many who had cancer before, some my friends knew maybe.

    Thank you for the explanation on the ER and Herceptin, as always you just deliver. I will try not to think about it much, I am afraid to ask what happens to those who has primary resistance to Herceptin but I feel I need to ask my oncologist how they will be able to understand if a person does respond to the treatment. This all is just so confusing, the hormonal tumors have better prognosis but if Her2+ is added the hormonal status becomes a disadvantage because there will be some additional growth pathways when Her2 receptors are blocked. On the other hand if Herceptin successfully blocks and even helps to destroy the cells with excessive Her2 receptors, the AI and other anti-hormonal drugs shall be able to take care of the cells that do not have excessive Her2 receptors and grow primarily of ER and PR? Or did I get it all wrong? I do not know why I overthink things but this is just the way I am, there is a problem and in order to solve it (which I cannot solve myself but my mind wants me to do) I have to deconstruct it.

    I know everybody have their own problems, my husband is telling me exactly the same thing. According to our own statistics in Sweden they say that one in three gets cancer during their lives, which basically means that everybody is affected. I believe for some reason since childhood we all have been protected, loved and felt omnipotent, thinking that we can never be one of those people who gets seriously ill. I always thought of that though when I tried to convince myself to live healthier in order not to get sick .. later in life. I absolutely did not expected to have such diagnosis in my age, still cannot believe it is happening to me, feel like someone please wake me up. Neither did anyone in my family so everybody is pretty shaken. I am so stressed, I thought how can one live like this, the only thing that keeps me going is that you who went through it before are saying it gets better with time, I do not know what I would have done without this kind of testimony, this is a silver lining for me in my current situation. I wish you all live until your are 100.

  • SpecialK
    SpecialK Member Posts: 16,486
    edited August 2017

    cherry - yes, chemo works on any residual cells left after surgery, Herceptin targets the Her2+ aspect, and anti-hormonals are considered systemic treatment as well, and will hopefully block, or suppress, estrogen fueling, depending on which medication is used.

  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited August 2017

    SpecialK, thank you, I hope I am ready to meet my oncologist tomorrow.


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