TRIPLE POSITIVE GROUP
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TriplePHtown, all my prayers and thoughts are with you and wishing good results tommorrow.
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triple - hoping for a benign explanation - I understand your fear - have had four recurrence scares, including a bi-laterally abnormal PET and sudden hearing loss. I was very fortunate that none of these events turned out to be more cancer, all had other reasons - hoping for the same for you, and wanted you to know that I totally understand your headspace right now - it's scary. Please keep us posted - we are waiting with you.
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smokeywins01, sounds like it may be best to just check in with your gyn or treatment team to discuss the issue, and perhaps consider get your hormone levels checked, among whatever else they would suggest. We see that there is an older thread here: https://community.breastcancer.org/forum/78/topics/705309 where they are discussing switching from Tamoxifen to Aromasin and experiencing similar symptoms, in case you would like to read it.
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Thanks! I will be bringing it up with my onco on the 24th. The questions about how do I know if I am truly in menopause have come up multiple times between my husband and I, and I don't belive my onco has actually checked hormone levels. Thanks you for the info.
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Thanks for all the thoughts and prayers for tomorrow
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TriplePHtown- I am so sorry you have to go through this worry
My thoughts, prayers and heart will be with you
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Hi
I am triple positive and have just been told after 14 months on Tamoxifen (one finished herceptin a year ago) that its in my bones and liver spots. Looking for any positive stories please. Seeing Consultant this afternoon to get my plan! I had a complete response to chemo and herceptin last time so not sure what has happened. Feeling alone and sad!!x
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CAT, we're sos sorry you have to be here for this reason, but really glad you've found us!
Besides this forum, we thought you may be interested in also posting in the Stage IV forum. We're sure you'll find positive stories and comfort here in this wonderful Community. Members have tons of advice and experience and will help you along the way. And please, let us know if there's something we can do for you. We're all here for you!
Best wishes,
The Mods
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CAT21,
I'm sorry to hear about your mets. How disappointing, after a presumably successful treatment the first time around. I second what the Moderators said. If you'll be doing Herceptin and/or Perjeta as part of your new treatment plan, there is a Stage IV thread for that. There are also Stage IV threads for bone mets and liver mets. There are lots of women on those threads who have lived for years and years with their mets. They have all sorts of insights on treatments, side-effects, and coping mechanisms. ((Hugs))
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Everything is okay!!! Thank you so much for the thoughts and prayers😘😘😘. Waiting on Doctor but his PA just told me CT was good. Xray had seen a nodule that was unchanged on CTand nothing they are worried about.
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CONGRATS TriplePH!!!!!!
Very happy for you!!!!!
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So happy for the good news, dear TriplePH.
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Hi triple positive sisters,
Hope everyone enjoyed the holidays. I wish a happy new year to all.
I have been reading the posts now and then, but not contributing much in the last few months. I was very happy to hear the good news about TriplePH scan so I finally decided to get out of the dark side and say hi.
@ Kattis, I think being traumatized sounds just normal. I am a bit traumatized too. I recently joined a weekly meditation group. Seek help. Talking to a psychiatrist has definitely helped me. Being dry down there has its remedies and doesn't mean you cannot have intimacy.
@ CAT, sorry about your news, and here is hoping that your disease can be controlled, and you that you have ahead of you many years of a good life with tolerable treatments. What a disappointment, as ElaineTherese says. May I ask you what symptoms if any you had that led to the discovery of those mets?
On my side, I am having my penultimate Herceptin+Perjeta treatment right now, and the last one will be in three weeks. Before anyone congratulates me, let me just say that I am consumed with worry about finishing systemic treatment, given the significant amount of residual disease I had in my breast and lymph nodes, plus all the other ominous signs in my post-surgical report: lymphatic invasion, vascular invasion, lymph nodes extranodal extension, only 6 nodes found in full node dissection -indicative that the nodes were matted because of disease. Maybe there were some more ominous things I cant remember right now. I talked to my oncologist about further treatment with Nerlynx or Kadcyla. He was against recommending Nerlynx for me, because there is no data comparing Nerlynx agains Herceptin + Perjeta, since the trial that led to Nerlynx' approval by the FDA compared Nerlynx against Herceptin alone. He also was against recommending Kadcyla for me, because, although the data demonstrates the benefit of Kadcyla instead of Herceptin + Perjeta, it doesnt demonstrate the benefit of Kadcyla after Herceptin + Perjeta.
So, since my oncologist doesn't recommend any further treatment, and also he doesn't believe in scans or checking cancer markers unless there are symptoms of progression, I feel like they are abandoning me to sit here waiting for the other shoe to drop, knowing that I am at "high risk of recurrence and death", which is the way the literature describes my situation, and that I have tolerated all treatment very well until now. He did recommend that I seek a second opinion on Kadcyla, and I am going to get it tomorrow. If anyone (in my situation or not) can recommend specific questions for my second opinion appointment, I would appreciate it. I will send an update tomorrow.
Best to all,
LaughingGull
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Laughing Gull, my MedOnc said if there's any indication whatsoever after surgery that there's any residual disease, he's going to zap it with Kadcyla. 50% greater survival rate. He did say pending FDA release and insurance willing to pay for it. Studies are clear showing the benefit.
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Cascadians: the 50% benefit is clear when giving Kadcyla instead of, not after Herceptin+Perjet
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TripleP, we love good news! My thoughts are with you all
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Dear Laughing Gull, I totally understand your concerns as I had residual disease in my breast and and the one node they had previously identified. My oncologist said it was my choice about Nerlynx though side effects are high and the stats showed about a 3% improvement. We have some travel planned and I have lost quite a bit of weight so I've decided to wait a bit before I make a decision on that. I asked about Kadcyla too and I believe he said it is only approved for metastatic patients and, as currently studied, will probably be used instead of Herceptin in the first year when approved - so we are caught in the middle. Let us know what your second opinion says about Kadcyla. Someone a while back on here mentioned a study with a vaccine for Her2 but I don't know if that study is still taking participants. My targeted therapy ended a few weeks ago and can relate to the mixed emotions. I'm glad you joined a meditation group and hope that you stay healthy. PM me if you ever want to communicate privately.😘
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Hi TriplePH,
I remember your case well since we are in the same boat! Your scare sent me into PANIC mode. I am soooo glad you got a benign result, dear
I will send an update tomorrow.
LaughingGull
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Happy new year to everybody, I pray this year comes with a renewed hope for us all.
Laughing, we are on the same boat with residual disease although the HER2 only showed after AC and mastectomy so I didn't start herceptin with AC &T. I saw my MO yesterday (Thursday) and asked him about Kadcyla for residual and his response was that I am not a candidate for it because the residual disease wasn't based on herceptin as I didn't take herceptin during neoadjuvant treatment so he doesn't see the need for it but he says he will put me on nerlynx for one year.
Thought I should share this with you. Get a second opinion because my MO said if I had gotten herceptin before surgery and we didn't achieve a PCR, he would definitely give me kadcyla.
Best of luck and please keep us posted
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I just wonder if this residual disease only refers to remaining HER2 pos cells? What if there is "only" ER+/PR+ tissue left? Do after treatment options, like Nerlnyx or Kadycla make any sense in this case?
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Hi CAT21 I am so sorry to hear about your met. Sending e hugs to you. Let me share a quick positive story with you.
Yesterday I went for infusion (H& P) and met a lady who came to flush her port. She was diagnosed almost 6 years ago with stage 4B ovarian cancer. The cancer was everywhere, ovaries, liver, spleen you name it.As a matter of fact, the first MO she met told her he wouldn't touch her that she should go home and put her “business in order" then she came to my hospital and the MO she met asked her if she was ready to fight as the battle against cancer starts in the head. Long story short, she's still here 6 years in June after DXed at stage 4B. You will be fine just don't get tired and weary just yet❤️
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Hi Gudrun, not sure I understand your question but if you mean to know if kadcyla only works for HER2 positive residual disease then yes. Atleast for now
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Thank you princess Meg. This exactly was my question. I'm afraid my English is a bit stiff. My daughter had residual tissues after tx but this time with Her2 negative.
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Gudrun, that sounds like your daughter will benefit from hormonal treatment but not from Kadcyl
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Hi Everyone,
It sounds like a lot of us are at that point of being offered Neratinib or Kadcyla. I have joined the FB closed group Nerlynx (Neratinib), to get an idea what I'm in for. Same as for the Cancer treatments- SE's are different for everyone. I have 2 more Herceptin treatments to go, so I have a few months to decide.
Good Luck to All of us! Rj
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FYI, was triple positive but after neoadjuvant chemo and BMX, the repeat biomarker test showed ER+ PR- HER2- for the residual disease but my MO still wants to treat me per the original biomarkers...ie. Herceptin or Kadcyla, if insurance will cover it.
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Quick update:
My second opinion doctor does not recommend Kadcyla after having had Herceptin + Perjeta for an entire year and says the data is not there and my insurance won't approve it.
Bummed but it is what it is. Second opinion doctor will present my case to their board in case they recommend something else and I also asked about clinical trials.
boogirl: regarding Tamo v AI when in the cusp of menopause, both my regular MO and my second opinion MO (whom I saw today) said that the strategy of ovaries removal + AI is the best for us triple positives with strongly estrogen-driven cancer and residual disease. Optimal, best, those are the words I heard both times.
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Gudrun, you are welcome. Best wishes to your daughter
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Thank you so much for your cordial welcome, Princess Meg.
Just an update on my daughter:
At 32 now she is in good health. After two years of Zoladex with Tam she interrupted antihormonal tx in order to become pregnant. Her periods came back quite soon, now waiting for good news. No need telling you that some anxiety sometimes is creeping up.
Thanks to everybody for their wholehearted and informative comments here on this wonderful thread I appreciate so very much.
Best wishes to everyone. G
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Gudrun, that's such a nice news and happy anticipation. Fingers crossed for your daughter. Of course the anxiety is there, I guess that's our fate. But somewhere I have read a study that pregnancy after BC may actually play a protective part against recurrence.
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