TRIPLE POSITIVE GROUP

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  • lita19901
    lita19901 Posts: 176

    Hap - Determining statistical significance measures the difference of the affect of X on two or more similar groups. In this case, the group that got Nerlynx did have better outcomes than the one that didn't, ergo statistical significance, but the *degree* of improvement was only a little over 1%, which is why doctorsaren't prescribing it. Confusing, I know, but that's statistics for you!

    I'm doing radiation right now.

  • Regarding Nerlynx - I asked my husband, a physician, to call my MO and ask him about Nerlynx for me. My MO said that everyone in his group was surprised that Nerlynx was approved, that improvement in survival was insignificant comparing to side effects. He said that risks, especially liver toxicity, by far exceeded any benefit in my case. So, it's a 'no' for me. I'm still kinda/sorta wishing I could take it, but I trust my MO more than my limited knowledge.

    On the topic of oophorectomy - I've had ovarian cysts for years. My gynecologist kept an eye for them with an ultrasound every few months. After my BC diagnosis, my gynecologist gently suggested that maybe I should consider oophorectomy. My MO said that there was no need to go that route, which made me happy because I really didn't want to get rid of my ovaries, especially since I was BRCA negative. Last year one of my ovaries suddenly ballooned up in a course of 2 months and that scared me enough to have my ovaries and tubes removed. I was upset about it, I wanted to keep my ovaries, but I feel like a decision was made for me by my body.

    BB



  • poseygirl
    poseygirl Posts: 298

    hi ladies...so nice to hear back from y'all ;)

    I have read the same about Nerlynx re: the medical establishment being surprised it was approved. As a Canadian, no one here would give it to me anyhow. I'd have to go south and pay a gazillion dollars.

    I haven't yet received the info re: treatment options from this naturopathic guy. He is really 'just' a Naturopath, but has specialized in oncology and knows a lot more than your garden variety naturopath. I think he has pursued certain licensing. And I do feel confident that he is integrative in nature and doesn't at all eschew medical treatment. So that's a good thing. When I hear about my options, I will cut and paste here.

    Cherry and HopeLisa, re: estrogen receptor status. The stronger a person's estrogen status, usually the less responsive to chemo. That is just the way it is. It's rare for a hormone positive patient to achieve complete response. But hormonal treatments are a very powerful weapon in the toolbox, and area vital treatment modality for these people. I was estrogen 90% and got a complete response. So definitely hormone positive tumours do respond to chemo - but unless your tissue is tested, they don't know how much your tumour would respond to chemo. My cancer may have been more Her2 driven (I was grade 3, so no surprise).

    On another note, I just made this awesome Mexican soup in case anyone wants the recipe; a friend of mine gave it to me yesterday...very nice!


  • lita19901
    lita19901 Posts: 176

    Hap, statistical significance is a standard mathematical function used to compare outcomes between groups that is used in all studies of this kind. Without statistical significance, the FDA would not have approved it. While I, too, would prefer to use a treatment with a higher degree of statistical significance it doesn’t negate the fact that statistical significance was achieved in this study.

  • Hi Coachvicky and Cherry-sw .Thanks for your replies. I live in the UK and here ER and PR are scored 0 - 8 so my HER2 positive tumour is er 8/8.I think I got confused. The consultant at the Royal Marsden Cancer Hospital said as you mentioned cherry that high ER positive scores can interfere with the HER treatments (crosstalk ? don't know what that means). As it stands if I have the 2 lumpectomies on Wednesday there is only one HER treatment available - Herceptin but a different HER treatment is available before surgery and as my tumour is just over 2cm I would be eligible for chemo/Herceptin before surgery. My local breast cancer unit thinks it best to have lumpectomies as soon as possible - ie Wednesday and I have signed all the consent forms. Have either of you had such high percentage ER scores. The doctor says I am luminal B type because both sides are grade 3. I feel I have agreed to these lumpectomies but I have a dread I should have done ER treatment and chemo first to see if I they could find a chemo/HER treatment that works for such a high ER score - the doctor thought more like 30 - 50 %ER would get a better response for HER treatment I think? i am Just very confused and ill informed to be making these decisions I really feel like I am messing the Worthing hospital around if I ring and want to change my mind since I have signed the consent forms. I could have sentinel node biopsies done and start neo chemo/Herceptin 3 weeks later - just no answer seems right.

    I would really appreciate it if either of you could let me know your percentage of ER PR.

    I will post other questions I am sure since the operation is so imminent and thanks for your kind and helpful replies.

    Late in the UK now but I will look up BarredOwl - thanks for the tip Cherry

    Best wishes

    Lisa

  • cherry-sw
    cherry-sw Posts: 784

    hopelisa, take a deep breathe, you will be fine. My stats are as following ER80%, PR60%, Her2+++. As you can see I am relatively ER positive too. You may also ask for your Ki67%. It is the speed of tumor cell division. Mine is 50%, very high, it means that 50% of cells divide at any point of time. Chemo is effective when Ki67% is around 50% because it kills cells that are in the mitotic process.

    With your tumors you, if I understand correctly, are being a borderline for both neoadjuvant and adjuvant treatments. Neoadjuvant is valid for larger tumors when doctors want to shrink the tumor before the surgery. For Her2+ larger tumors chemo is usually given with both Herceptin and Perjeta, another targeted therapy. For smaller tumors they start with lumpectomy and then give you adjuvant chemo with Herceptin only. Chemo regimen may vary between. With neoadjuvant treatment they can see whether treatment is working, with adjuvant treatment there is no way to know whether it does or not. But even if the treatment successfully kills all the tumor cells it does not give you any guarantee. The bad news this is the ugly truth of bc, the good news the treatments are effective. Herceptin has changed the situation for Her2 positive bc and being highly ER% is always better than being ER negative. About the crosstalk between ER and Her2 we need to ask user SpecialK, she is 3+ and has been on this thread from very beginning and possess a lot if knowledge.

    Now I feel that I am not being good at pep talk but if you feel insecure please talk to your oncologist and ask him to explain both options for you.

    Do not get your anxiety to take over you, easier to say I know, I have been where you are just a few months ago

    Cherry

  • hopelisa,

    My cancer was 95%ER+/95%PR+, and it still responded well to treatment. I had neoadjuvant cancer, and the pathology report from my surgery showed that all of the active cancer in my compromised lymph node and breast was gone. Good luck with your surgeries!

  • cherry-sw
    cherry-sw Posts: 784

    PoseyGirl, I am always up for a good recipe, I am posting on So what’s for dinner thread, I love cooking, soup is something I can eat every day. Right now I have cauliflower bisque in my fridge and I was thinking cooking either ribbolita or borsch tomorrow. If anyone feel for sharing any interesting recipe, please do. I have also been trying to hang on the other sites, a friend has recommended seriouseats.com, I like it very much.

    I remember reading a thread, cannot find it now, where a lady posted her complete pathological report and another lady replied to her that her tumor may be resistent to chemo, it was not about being ER or low grade, I did not pay attention to that then and now I cannot find it. I also red that metaplastic tumors are resistent to chemo. pCR is always a good thing, although as they say for some patients it is enough to just remove the tumor, they just do not know for whom and therefore treat everybody.

    Waiting for that recipe, I even have fresh chicken broth in my fridge, ready to use in any soup

    Cherry

  • peoy
    peoy Posts: 48

    Hopelisa - I'm ER+80% PR+70% , HER2+ Grade 3. Right tumor 3.6cm. Stage IIA. My BS let me choose either neoadjuvant or adjuvant. I chose chemo first becos i do not want to be tolerating 12-24 weeks of chemo not knowing if it is all in vain (according to MO, 3% will not respond to chemo). After #3 chemo, my tumor has shrunk to 1.8cm.

    CoachVicky - I'm interested in your treatment plan cos tumor similar to mine. I do not understand your "6 rounds TC n 12 rounds Herceptin". Do u mean 6 n 12 infusions? Over how many weeks? How many weeks of chemo n what drugs? Neoadjuvant or adjuvant? Thanks in advance.


  • suburbs
    suburbs Posts: 398

    hopelisa, my tumour was highly HR and PR positive. I did neoadjuvant TCHP and had a complete pathological response. With highly hormone positive HER 2 +++ tumours, a PCR is less likely. In addition, a PCR for triple positives does not translate into the same disease free survival rate as a PCR for someone who is only HER2 +.

    My MO told me on day one that we were going for a cure. I will tell you the same thing. Ignore any pessimistic predictions of outcomes from your medical team and go for a cure.

    Regardless of chemo before or after surgery, the treatment will not be fun and it will be a long year. This board can be a life line. Good luck with your surgery.

  • Thanks to all you ladies for your replies and goodluck messages.

    I will be pleased to get the cancers out and it was very encouraging to hear that you also have high ER and PR scores and the chemo is working, doing its job of opening up the cells for the Herceptin to work.(that's how the doctor in London described it ). I am just taking it easy today and trying to be less anxious and more positive for Wednesday as cherry-sw says. CoachVicky what treatment did you use to keep your hair ? a cold cap ? How was it honestly and worth it or did you get a lot of thinning and bald patches ?

    Thankyou to all for your kind replies

    Best wishes


  • Kattis894
    Kattis894 Posts: 150

    I have been reading your posts and I am strongly positive in all areas as is stated in my profile below. I was just at a follow up appointment at my onc who told me I can consider myself basically cured for now...what a relief...:) So ladys we are kind of lucky to have this type of aggressive type of BC considering all the different options of medications for it, yes bad news it can come back but my onc said the track record for this BC are all very good at this point. Being highly ER+ means chemo and pre treatment usually does not achieve PcR (only in 20% of the patients according to my onc) but hormon medication is also highly effective being high in the numbers so that is a good thing.

    I am back focusing on starting to exercise and got myself a personal trainer today. She said I should be getting back in a "slowmotion" pace so tomorrow my task is to swim for 20 minutes in a warm water swimmingpool during lunch hour at work...:) I hope there is a separate dressing room..I am not ready to expose my flat side at his moment so getting my special bathing suit geared up for the morning.

  • HopeLisa

    There is a forum on cold caps. I encourage you to go to it.

    It was worth it to me to do the gel caps. I deeply admire women who can go bald and regrow. I do not have that strength.

    There is also a forum on hair hair hair that will be helpful.

    Here is what I used:

    Amixture of:

    1 cup coconut oil

    1 cup jojoba oil

    1/2 cup castor oil.

    Apply all over the head and thru the hair at night.

    Oil source: Amazon: Jojoba Oil Golden Organic 100% Pure 16 Oz by Dr Adorable

    Shampoo: Redken Cerafill Retaliate Shampoo For Advanced Thinning Hair 33.8 oz.

    Whatever you decide, you are going to get thru this. And you will be stronger on the other side.

    Vicky


  • Peoy

    I had the standard treatment of 6 rounds of Taxotere, Carboplatin, and Herceptin. Then I had 12 rounds of just Herceptin. Each rounds was every 21 days.

    Vicky


  • Hope Lisa

    My numbers were 90 and higher.

    Write your questions down and take them to your MD appointments. It will also work if someone goes with you and writes the answers.

    Yes, it is so confusing in the beginning.

    Before long you will be like Cherry ... Supporting others and giving information!

    You will make the best decision you can and move forward. It will be OK.

    Vicky


  • cherry-sw
    cherry-sw Posts: 784

    Kattis, wonderful news and what an incourraging doctor, I would like to meet him too, I have not been to this clinic yet.

    Coachvicky, I would still like to reserve a right to rant and vent here, you all are the only people I feel I can open to. My treatment has really worn me down, it is like I only have 1,5 good day now and then it is Monday again. If they would try to convince me not to take EC it will be so easy to do, I just want it to be over at least for chemo part, I do not know how to endure three dd EC, it is taking its toll on me. And this baldness, I did not know hair was such a big deal. Cooked soup and stew for tomorrow, will be off for genetic testing and 11th Taxol.

    Cherry

  • Cherry

    Rant on! It is hard and you are going to get thru this.

    Hair is a big thing. But I bet you are not shaving your legs or underarms, yes? That is a GREAT thing (at least to me)

    I remember many of your first posts. You may not see it but you have made great progress.

    Hang in there. Soon this will be in your rear view mirror.

    Vicky


  • cherry-sw
    cherry-sw Posts: 784

    coachvicky, I turned the internet upside down for information and red a lot here as well. I bet I sound different, one will be changed after some time, not because she wants to but because she has to. I wish I had never known anything about it but here I am. I had a breakdown about it to my mom today, asking why me and at this age, I feel so sorry that she has to g through it, and the kids too.

    Cherry

  • cherry-sw
    cherry-sw Posts: 784

    Thank you HapB

  • poseygirl
    poseygirl Posts: 298

    So re: the Mexican Soup, Cherry...its so tasty! I don't have a lot of specifics re: exact measurements, but there's a lot of leeway:

    - take chicken thighs deboned and deskinned and chop up or dice.

    - sprinkle the following spices on the chicken (to your liking): paprika, chili powder, cumin, cayenne pepper, oregano, Tex mex, pepper salt, onion salt, garlic salt

    - sautée the chicken and remove

    - cut up 2 onions, 1 green pepper (dice) and sautée in the pot. Chop up garlic and throw in as well.

    - add in a box (4 cups) of chicken broth. add in 4 cups of water.

    - add a can of kernel corn, a can of black beans. Add in the chicken and stir. add in zest of one lime and juice of the one lime.

    - add a few dashes of hot sauce (to your taste) and add in a 1/4 cup of cornmeal mixed with a bit of water. Add some red wine vinegar. I threw in 2-3 teaspoons

    Voila...Mexican Soup. It's really nice if you cut up avocado and put that in and if you put a dollop of sour cream on top. It's sooo tasty! Those are fried quinoa patties beside the bowl...also very goodimage

  • poseygirl
    poseygirl Posts: 298

    this guy is originally Canadian but now works in the States. Doing very promising work in the area of immunology:

    http://windsorstar.com/news/local-news/windsor-native-makes-a-cancer-research-breakthrough

  • PauletteK
    PauletteK Posts: 1,279

    Posey - great article, wish we have more good news in the future so we don’t have to do chemo.

    I’m not Triple Positive but I lurk here all the time because I found this thread has so much information and love to learn from all of you.

  • cherry-sw
    cherry-sw Posts: 784

    Thank you for the recipe, PoseyGirl, sounds delicious and I bet the kids will like it too. I wonder whether cornmeal and polenta is the same thing? Will try it this week. I will use my veggie broth in it. What ingridients do you have in you quinoa patties?

    More food pictures to the people. When I was on parental leave with my youngest my husband added some new tv channels, I ended up watching BBC food all the time. I remember a program where an elderly English lady cooked in her country home. Once she went to the woods to pick blackberries for a pie and while having a conversation with a camera man who ask her something about why one should try to overdo it when it comes to food she replied, well, it is food, it is the most important thing in the world. It just stuck in my head.

    Cherry

  • That soup looks GREAT!

    VIcky

  • cherry-sw
    cherry-sw Posts: 784

    I agree the soup looks great, rustique, an autumn meal. And those sturdy pumpkins in the background, never seen this sort around here. At least if they are painted?

  • Hi Coachvicky

    Thanks for the hair recommendations will look them up on Amazon. I too feel I would really struggle with no hair so I will give the cold caps and treatments a try - the treatments sound very gentle. I am sure the cold caps must be gruelling so I'll check out the cold caps topic for info.

    Thanks Lisa

  • Kattis894
    Kattis894 Posts: 150

    HapB,

    I am on Letrozol (Femara) for 10 years...:( another 9 years to go..:)

    The famous American cooking show must be with Julia Child perhaps, a wonderful groundbreaking woman...well portrayed by Meryl Streep in the movie Julie and Julia a must for every cook out there...and a feel good movie as well...perfect during treatment time. I also enjoyed the tv-series Grace & Frankie with Jane Fonda and Lily Tomi while on chemo..it made me forget the hole thing for awhile...

  • poseygirl
    poseygirl Posts: 298

    Hi Cherry,

    Those pumpkins aren't real...just picked up at some decor store!

    The quinoa patties are easy:

    - mix quinoa with beaten eggs, bread crumbs (so if you do one cup of quinoa, use one egg)

    - dice any veggies you want - zucchini, carrot, onion, garlic...

    - throw in some shredded Parmesan cheese

    - spice how you wish!

    Mix all together, make into patties and fry!

    Kattis,I have a boatload of Netflix shows to suggest that I watched through treatment (and beyond). If anybody wants my list, I can offer it up!

  • cherry-sw
    cherry-sw Posts: 784

    Kattis, thank you, I did not see that one but I am up for anything starring Meryl Streep. A friend recommended Schitt’s Creek with Eugene Levy and Catherine O’Hara, a Canadian show, about a wealthy family that IRS caught on major tax fraud and they ended up in cheap motel. Itis light and funny, both pre- and unpredictable, I liked it. I also watched Netflix The Crown about The Queen since the time she got married, good production and I liked this one too. I start watching Mr. Robot, so far not so much but I will give it a try. My life is boring otherwise, last week I mostly stayed indoors because I could not see anyone, I have to get out this week.

    Cherry

  • Thank you for the advice!