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  • Gigilala
    Gigilala Member Posts: 148
    edited October 2017

    hapB: I am 39 years old

    I am premenopausal


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  • deni1661
    deni1661 Member Posts: 463
    edited October 2017

    I'm sure my MO would have mentioned the advantage to removing ovaries as well but it can't hurt to ask. Questions are good and he has been great at providing choices with benefits and risks

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  • Norsken82070
    Norsken82070 Member Posts: 8
    edited October 2017

    I was diagnosed with Stage I DCIS/IDC, Left breast, 1cm, Stage IA, Grade 3, 0/4 nodes, ER+/PR+, HER2+ on November 7, 2016. I went through six rounds of Carboplatin (Paraplatin), Taxotere (docetaxel), and Herceptin and then 11 more Herceptin infusions. I am about to finish my last Herceptin infusion on November 10, 2017. I also had a lumpectomy in May 2017 and short course of radiation (16 treatments with 4 boost). I also currently started taking Tamoxifen in July 2017. I responded well to all of the treatments and even had a complete pathological response from the lab work from my lumpectomy. I had very few complications and feel 100% again.



    I though that I was coming to the end of my year of treatment and now my oncologist is recommending that I start Nerlynx in December for a year. I am not sure if I should take it. The drug was just approved in July 2017 and I don't know what patients experience with it is. Is there anyone else that is HER2+ that has been perscriebed Nerlynx and can tell me what to expect if I decide to go on this drug regiment?

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

    Norsken,

    My MO said I was too far out from my last Herceptin to do Nerlynx. She also believes that the side effects outweigh the minimal benefits. However, a BCO.org member, tadover, was part of the Nerlynx trial. Apparently, she did OK on that drug. There is a thread or two out there on Nerlynx; you might want to use the search function to find it.

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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited October 2017

    Hi all,

    It's been a couple weeks since I've been on here; I find it a challenge to find that balance between wanting to be connected with all you ladies versus having that cancer radio playing 24/7.

    I had an oophorectomy; my MO seemed ambivalent, so I made the decision. I was premenopausal, but barely. At 48, I knew I was just a few years away from natural menopause. For me, the decision came down to preferring to be on an AI versus Tamoxifen.

    So I definitely get mouth sores on Letrazole. I will get Magic Mouthwash to deal with that.

    Yesterday I met with a naturopathic oncologist. Basically, he is a specialist who definitely concurs with conventional medicine but offers ways to support and enhance treatment. When I get all his treatment recommendations, I can pass those along if you are interested. While he did offer some basic diet tips, he also said that there isn't any evidence supporting the idea that diet has a great deal of influence in prevention of recurrence. That said, a healthy diet is still important. It certainly is important for hormone positive women who are heavier. In that way, it is important. He said that for me, exercise is key. He also talked about a fast mimicking approach, whereby for one week out of every 4-6, I eat 500 calories daily. I will do that. It's a system reboot thing. Not sure if any of you read the recent article about B12, but there might be reason to lower your intake of that.

    Hapb, how horrible about your car accident; what a totally terrifying experience! But I'm so glad you were mostly unscathed. Unbelievable.

    I hope everyone is well

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

    PoseyGirl,

    I have missed you but understand about the 24/7 cancer radio.

    Please share more about this reboot diet.

    Vicky

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  • Suburbs
    Suburbs Member Posts: 429
    edited October 2017

    Poseygirl, yes, definitely want to hear about your complimentary treatment. Also, my medical team says the same thing about diet. A good diet is a good thing but it will not prevent a recurrence. On the other hand, the nutritionists and other BC organizations are advocating a clean vegan lifestyle and no alcohol. I find the whole topic to be very frustrating.

    norsken82070, nerlynx crosses the blood brain barrier, whereas Herceptin does not, that is unless you have a special port in your head and have it administered. There are side effects but frankly after TCHP and a BMX and immediate DIEP reconstruction, I feel like anything else would be a walk in the park. I am planning on trying it after Herceptin. I had to put this idea in front of my MO more than once along with my reasoning in order to come to an agreement to proceed. Just as an aside, I think having a good rapport with your MO as well as trust goes a long way in making this ordeal tolerable. I want to throw everything at this cancer now, and not look back with regrets.

    On the removal of ovaries topic, thanks for all the additional comments and feedback. I will ask again. My guess is the answer is different for someone in their 50s vs. 30s or 40s and personal medical history must be taken into account.

    Yes, yes on the 24/7 cancer radio. I am tired of hearing myself talk about my cancer and treatments so I am sure everyone around me is as well


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

    I wonder, Suburbs, when I will stop talking about having breast cancer.

    I wonder when it will not longer seem a part of me.

    Like you, I am sure others tire of this from me. I work not to talk to others just the women on this site and (of course) to myself.

    Vicky


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

    Norsken, are you in US? You are not in Norway by any chance?

    You have been offered a bit different treatment schedule with doing chemo prior to surgery. I thought neoadjuvant treatment is usually given for larger tumors. At least this is the way they do it where I live, I am from Sweden. I have been told that I cannot get Nerlynx, the SE are not worth the benefits but I am just like everybody else here and want to throw everything they can offer Cherry

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  • bareclaws
    bareclaws Member Posts: 345
    edited October 2017

    “the SE are not worth the benefits“

    From whose perspective? The insurance company’s? The patient’s? From what I’ve read, not everyone has terrible SEs. Isn’t a small chance at not having a recurrence worth a try, at least? SEs are usually manageable. I’ve asked two MOs and they’ve both said no. I plan to bring it up again in a few months when I finish Herceptin.

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  • Dancefan
    Dancefan Member Posts: 13
    edited October 2017

    Hello everyone

    Like coachvicky I have been diagnosed with bilateral grade 3 cancer IDC

    Right side is 2cm or just above according to MRI ER8 HER2 positive

    Left is .9mm ER7 HER2 negative.

    Lumps were seen on mammogram 12 September and got results of biopsies 28/09. MRI 13th October. Since 28/09 I got an appointment at The Royal Marsden specialist cancer hospital but they have been unable to offer me a treatment plan because my local breast unit has taken so long to forward my tissue samples for them to complete their own tests,. So I am scheduled for two lumpectomies on Wednesday since the Marsden will be at least another two/three weeks to give me a treatment plan. My plan from Worthing is surgery, chemo 6 months, Herceptin 1 year, radiation to both breasts and hormone therapy since I am 53 and pre-menopausal. The consultant at the Marsden said the Herceptin and chemo may not work because I have such high ER markers of 7 and 8. It feels very disheartening and I am doubly anxious that I have 2 grade 3 tumours. I was wondering if any of you have had issues of chemo or HER2 therapies not working because of high ER scores.

    Also I understand there is difficulty filling dents left by the surgery if you have radiation which they say I must?

    I am anxious that with 2 grade 3 tumours and HER2 it sounds so aggressive and I would love to hear positive experiences and those who have had chemo/her work despite high ER scores

    Best wishes to you all

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

    Hi HopeLisa.

    I am sorry you are here in this BC Club. You will, however, get lots of support, love, and encouragement from the 3+ women.

    I did not have radiation and cannot help you. Others? What can you offer.

    As to treatment, I did 6 rounds of Docetaxel (Taxotere™ or "T"), Carboplatin (or "C") and Trastuzumab (Herceptin™ or "H") followed by 12 rounds of Trastuzumab (Herceptin™ or"H").

    Considering it was breast cancer and my breasts were amputated, it has been a positive experience. I took a lot of Zofran (mint dis solvable) for nausea but never threw up. I lost weight which I needed to do. I got a nice rack out of it. The new girls are perky! My husband used gel cap therapy and saved my hair. Everyone compliments my new hair so I must have looked like crap with my old hairstyle! I managed to get rid of the bushy eyebrows I once had and these new ones are girly and won't need waxing. Best thing EVER is I still have no underarm hair.

    That is my positive.

    Best wishes. Ask me anything and I will honestly answer you.

    Vicky



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

    My MO said I could do Nerlynx if I wanted it, and she offered to prescribe it. But, she didn't advise it. In fact, she rolled her eyes when I brought up Nerlynx. She just said the benefits weren't significant enough to recommend it.

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

    bareclaws, I am not in US, we have general medical insurance system similar to one in Canada. The clinic that treats meconducted a smaller study and followed all trials done for neratinib, their decision at the moment is not to offer it. I will though ask the question again, I have been tol that chemo does not either cross brain blood barrier, but that brain is good in protecting itself. I know what you are about to say and I completely agree with you, easy for them to say, but if I cannot get it from my clinic, there is no way for me to get it at all, may be if I pay out of pocket in another country.

    Cherry

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  • deni1661
    deni1661 Member Posts: 463
    edited October 2017
    Norsken - congrats on the great response you had to treatment. My MO advised against Nerlynx because side effects outweigh benefits specifically for my case since I responded well to just the HP. I think this is a situation where it may be good for some but not others.

    Poseygirl- I'm definitely interested in what your naturopath suggests. Thanks for sharing. I have read about the fasting and try to eat only during certain hours of the day. I read fasting helps clear toxins from your liver. I would like to hear more about the reboot diet. My MO, BS and PS all said maintaining a healthy weight, eliminate stress and build a strong immune system was my best approach to avoid recurrence. Considering the broad range of advice on cancer diets I decided to eat healthy the majority of the time and no longer beat myself up when I allow myself a treat or glass of wine every now and then.

    Hopelisa- sorry you find yourself here but this is a wonderful place for support and inspiration. I did not have radiation or chemo but others here can provide plenty of insight. I did a full year of Herceptin and Perjeta infusions and had a Unilateral mastectomy plus DIEP reconstruction in May. I had a good response to treatment and am currently NED. I am very happy with how my recon turned out. I changed my diet and lifestyle after diagnosis, lost 40 pounds. Side effects from letrazole are annoying but manageable. I have a greater appreciation for life and am in a much better place spiritually and emotionally. That's my positive. Best wishes for a quick recovery from your upcoming surgery and strength as you move forward with treatments. Sending hugs

    I don't talk about cancer to anyone except here and several other online groups. The support and info shared with other cancer warriors inspires me and provides understanding that I can't find anywhere else. I'm afraid my family and friends have moved on which is fine with me. I thinks it's important to find a healthy balance and not let cancer consume your life but it is comforting to know support is available 24/7 when you need it.
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  • Cherry-sw
    Cherry-sw Member Posts: 997
    edited October 2017

    IPoseyGirl, that what exactly what I thought when I several days ago noticed it has been a while since you have posted. I thought she has decided to take a time break, I wish I could. I am also getting sick of seeing diagnoses and people's constant fear. I have no place to channel mine so I hang here. This is a good thing to take a break, a lot to read at once, sometimes nothing happens here but life happens outside. I have noticed it has been a while since SpecialK posted, must be taking a break even she.

    I would like to know everything your naturapathic oncologist recommends, we do not have any here, doctors may be but not oncologists.

    Cherry

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  • Lita19901
    Lita19901 Member Posts: 211
    edited October 2017

    Hap, the Nerlynx study did show statistical significance, which means the outcome was not due to chance, but the overall benefit doesn’t outweigh the nasty side effects

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

    hopelisa, I am sorry you had to join us, but you will find here a great source of support and comfort. I am relatively new here as well and I do not know what I would have done without this group and I am not even in US.

    I am curious about your ER score, you mentioned your oncologist referred to it as 7 or 8 and I wonder what he meant? ER/PR is usually stated in percentage.

    Of what I have understood Her2 positive are often grade 2 or 3 which means chemo must be effective because it destroys the cells when they are dividing, if you had high grade tumors chemo will be recommended. There is a certain crosstalk between Her2 and ER but when it comes to chemo they offer it to women who are highly ER positive and have high grade. Pleas ask him again what he meant when he said that chemo will not be as effective if you are highly ER positive. Or anyone here can correct me, I am still new.

    About positive experience, it is hard to get grasp of the things, thoughts and fears right now, I am exactly in the same place doing active treatment, bald and completely depressed, but there is no other way but hang in there, just get yourself through it. This community had been very positive experience. Coach Vicky told me once that I will know who my true friends are and this is a luxury everybody will not have. I did find out that, and I will never turn myself to people I considered my best friends, they simply failed. Someone here told me that 3+ have many treatment options which is a good thing. I am also greatful that I live in modern age and developed country, at least I have a chance this way.

    I also red on another thread recentlythat user calling herself BarredOwl provides very competent answers when it comes to medical questions. Cherry

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  • Lita19901
    Lita19901 Member Posts: 211
    edited May 2018

    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.

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited October 2017

    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



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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited October 2017

    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!


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  • Lita19901
    Lita19901 Member Posts: 211
    edited May 2018

    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.

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  • Dancefan
    Dancefan Member Posts: 13
    edited October 2017

    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

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

    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

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

    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!

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

    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

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  • Peoy
    Peoy Member Posts: 36
    edited October 2017

    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.


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  • Suburbs
    Suburbs Member Posts: 429
    edited October 2017

    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.

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  • Dancefan
    Dancefan Member Posts: 13
    edited October 2017

    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


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  • Kattis894
    Kattis894 Member Posts: 218
    edited October 2017

    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.

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