TRIPLE POSITIVE GROUP

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  • xYoungandScared
    xYoungandScared Member Posts: 21

    Hi everyone,

    Happy New Year! I hope you're all doing well. I wanted to come here to provide an update, and perhaps some hope for some newcomers. My username says it all...I was young and scared. I'm still young (27th birthday is 1 month away!), and I'm still scared but I'm more hopeful, and moving forward. I had my axillary node dissection surgery- an additional 15 nodes were removed and tested for any residual disease. 1 week later, as I was calling about my leaky drain, I was given my pathology report: they all came back negative and they're fairly confident in saying I have no cancer anywhere else.

    I knew I would cry at the news from happiness, I just didn't realize how quickly my body would react to the news. It has been such a long road, and it will continue to be a long road...I'm going to start radiation soon, we're going to put my ovaries to sleep, and then I'll start anti-hormonal and continue to go for check-ups and scans. I'm still finishing up the 1 year cycle of H&P. But, I'm here. I made it to 2019 and I'm starting to feel a little more like myself before my diagnosis every day.

    Thank you again everyone!

  • moderators
    moderators Posts: 8,643

    xYoungandScared, you are a remarkable young woman!! We sincerely wish you weren't dealing with this at your age!

    Thank you for sharing your positive spirit here. Wishing you, and everyone here, much strength to get through everything this year.

    Medicating The Mods

  • jstarling
    jstarling Member Posts: 137

    Youngand scared, I am so impressed with you and your attitude. I am almost exactly one year out and just had my first (normal!!!) mammogram since all this began. Only six Herceptin to go! Looking forward to a great 2019

  • boogirl
    boogirl Member Posts: 24

    Hi everyone, a few add'l questions for the experts here as I'm planning for my MO appt ahead of TH starting, and through various research - especially on BCO! - I've found a few more things to ask. Just wondering what people experienced if they had some specifics similar to mine. Here goes:

    1) Anyone that was very strongly ER/PR+ and lower on the HER2 ratio out there? Did you ask your MO about the studies showing cancers w/FISH ratio score 2-5 and ER+ are less receptive to Herceptin (BCO linked the article to me on that automatically/ it's on this site - it was a Secondary HERA 2 analysis from Aug 2016). I'm ER 99% / PR 90% and HER2/CEP 17 ratio 2.47 (avg copy 5.57).

    Since I didn't get to have neo-adjuvant treatment, we won't "see" any response to the Herceptin so I feel like I won't know if it works or if I'm resistant unless something bad happens! So have MO's adjusted anyone's plans at all based on that study? I'd fully expect to still get Herceptin but it makes me anxious for endocrine therapy too and it seems like they are not concurrent? Or just not during the Taxol part?

    2) The related point in the study was that sometimes cancers w this profile respond better to endocrine therapy. Of course I'll therefore ask about that. But that leads to more ?'s. Right here in this +++ group I've seen several references to AI's being more effective than Tamoxifen - has anyone who is borderline menopausal had it induced and gone with AI's? It seems it would make sense as I'm on the cusp (49) and if AI's are better, then start with the winner! Before the HER2+ results came back, I was even issued my bottle of Tamoxifen tho I hadn't even take any / they called the same day w the add'l news.

    Curious what response anyone had to these issues if discussed w your Dr's. I'm sure in part mine will say a little knowledge is also a dangerous thing and nothing much would change but worth the ?'s. (We've also established my research gene has had a strong + response to all of this! Time to read less and live more).

    Once the plan is finalized I've promised myself to do just that....


  • boogirl
    boogirl Member Posts: 24

    Sorry this is the link to the BCO article on ER/HER2 status & Herceptin effectiveness that I referenced in my prior post, which I expect has been recommended to any of us that clicked HER2+ :

    https://www.breastcancer.org/research-news/her2-po...


  • elainetherese
    elainetherese Member Posts: 1,635

    Hi boogirl!

    I was 48 when I started hormonal therapy, but not post-menopausal. My MO recommended ovulation suppression + an AI. I do monthly Zoladex shots and take aromasin. Another option is Lupron (every three months) or just ovary removal (oopherectomy). My OB/GYN isn't a fan of removing healthy ovaries, so I went with ovulation suppression.

    I was 95%ER+ and 95%PR+, but chemo + Herceptin + Perjeta worked well for me. It wiped out all of the active cancer in my breast and compromised node. I had a tiny pocket of DCIS, but was otherwise was clear of cancer at the time of surgery. My radiation oncologist was surprised that I responded so well to chemo + targeted therapy, but my medical oncologist was not surprised because my cancer was at the high end of Grade 3, and chemo targets quickly dividing cells.




  • Tresjoli2
    Tresjoli2 Member Posts: 579

    I had ovulation suppression, but stayed on tamoxifen as I am young and tolerated it well, and AIs can have joint pain and bone loss. I had to stop ovulation suppression. The side effects were terrible for me.my labs are screwy, but the general consensus is that I am still premenopausal.

  • ingerp
    ingerp Member Posts: 1,515

    boogirl—those are good, thoughtful questions. I never pushed back on the H but did on the T. There was also a study that came out last summer suggesting six months of H might be as good as 12. Since that time another study is out (per my last check in with my MO in December) showing a slight advantage to the full 12 months. And I believe standard tx is to start the anti-horminals after T (and after rads if you’re going to have them). I finished T 8/3, finished rads 10/4, and started the AI 11/11. I have seven H only left. (Hooray?)

  • boogirl
    boogirl Member Posts: 24

    Thanks for the responses! I'll post on what MO says. I did ask re the 6m vs 12m H but already heard from 2 MO's that attended San Antonio in Nov that 12m was consensus superior - so same thing you heard Ingerp - so unless significant SE's esp cardio, both said 12m was the way to go. Appt is Thurs so any other thoughts welcome and I'll share anything I find out.

  • jstarling
    jstarling Member Posts: 137

    Ingerp, I have 6 Herceptins left, but am pleased that I have gotten this far because of multiple breaks to let my EVR heart rate return.. which it always has after six weeks. My MO doesn’t want me to start anastrozole until I have finished Herceptin. Perhaps, I should ask her to explain her reasoning?

  • ingerp
    ingerp Member Posts: 1,515

    JStar my LVEF hasn’t changed since my pre-tx echo, so my heart is apparently handling it okay (as opposed to my sinuses—honestly I should have bought stock in Kimberly-Clark before I started this). I’ve never heard of delaying an AI until after Herceptin is over—I’m curious what your MO says. I definitely wasn’t in any rush to start but really my SEs have been minimal.

  • jaboo
    jaboo Member Posts: 368

    Jstarling, I am to start an AI soon, I am a month away from chemo and have BMX in 2 weeks and rads after that. Maybe it depends on how strongly hormone dependend your tumor was? (mine was 100% estrogen, 85% progesterone)

  • jstarling
    jstarling Member Posts: 137

    I am very strongly hormone dependent. 98%ER and 90%PR. Oncotype 3

  • Kattis894
    Kattis894 Member Posts: 150

    Hi everyone, thought I would check in again for the new year 2019. I am happy to see so many still doing well and sorry for the newcomers but at least you found a good place for support and advice. I am for ever grateful for this group.

    I did a checkup end November and no evidence of cancer was found. Yay! The first 2 years where recurrence is most common has now passed. This summer will mark 3 years since my diagnosis and hopefully the result will be ned then too.

    I have however suffered a lot lately (it comes and goes a bit) from anxiety and feelings of despair. I have worked full time but had to quit due to stress 8 months ago. Then I started working less but could not even handle that. Now the anxiety for my finances becomes overwhelming as well. I find I do not function well anymore. I am seeing a psychiatrist but for some reason they do not really understand or maybe do not think there is something wrong with me. The cancer is gone and I should be fine but I am not. I feel guilty it is in my head.

    I did suffer a trauma before my diagnoses when my husband suddenly and unexpectedly passed away and it seems my unresolved feelings towards that together with anxiety for recurrence, work and the rest has escalated to the point I am unable to handle any kind of stress. None. I react differently to what use to be small things and can go into full panic for minor situations. Someone I hardly known experienced a recurrence and I was on strong calming medication and could not sleep for a week. Well, that is my development. Cancer free but panicked and stressed even when resting. I should be ok, no?

    Next issue was at my gyn where I discovered my private areas are..well totally dried up..I left with a big box of creams and potions to help with this but I felt so sad, I will not enjoy intimacy anymore either, if I would meet someone which I do not do.

    I have had some problems with teeth lately too and due to my medications there are complications. I have to remove a tooth next week that has troubled me for 6 months (with constant treatment that does not work). I am now going to another specialist to remove this tooth hoping it will not effect the rest of the teeth considering the inflammation in the jawline. They do not want to put screws in my jaw either so am I going to be toothless? My body is just falling apart, aging rapidly.

    I so hate this illness and feel so sad for everyone suffering from it. Cancer (not breast cancer) seems to kill everyone around me at this moment.

    Thanks for letting me vent and I apologise I am not more cheerful at this moment.

  • tess111
    tess111 Member Posts: 35

    Oh, Kattis, I can really relate to what you are saying. I understand your stress and anxiety. I feel it too. You are definitely allowed to vent. Know that you are not alone. Gentle cyber hugs coming your way. To better days ahead.

  • specialk
    specialk Member Posts: 9,261

    kattis - I am so sorry that you are having this experience, but you are not alone in this - it is common and, in my opinion, not adequately addressed by health professional treating patients with serious diseases. Often once we are done with the acute treatment phase the enormity of what we have been through renders us somewhat incapacitated. Are there any counselors or psychologists that specialize in helping cancer patients or those with PTSD as a result of life-threatening illness that you can see? I don't think this is well treated by doctors who do not have this type of specialty. This sounds to me like what is happening, you understand your situation intellectually, but you are having difficulty with your emotional response to it and stressful things externally are causing you to react in ways you struggle to control. Sending you comfort across the miles, and hope that you can work this out.

    boogirl - I had surgery first as neoadjuvent treatment wasn't done often when I was treated since Perjeta was not yet available for early stagers. I was strongly ER+ at 96%, weakly PR+ and very strongly Her2+. In answer to your question - anti-hormonal therapy is not given concurrently with chemo, but is usually started within a few weeks after chemo is done, and concurrently with remaining Herceptin, and Perjeta if you are receiving it. Also, your question regarding anti-hormonals and whether to do suppression and take an AI over Tamoxifen is a good one and you should discuss with your MO. Aromatase inhibitors have a performance edge over Tamoxifen, and for young women, ovarian suppression and an AI (SOFT/TEXT trials) work better than Tamoxifen, but the strongest result in that trial data was in younger women not as close to natural menopause. If one is strongly ER+ and strongly Her2+ there is some thought that Tamoxifen doesn't work as effectively, but I am not sure if that is the case if your Her2+ is weaker. Keep in mind also that your Her2 degree of positivity may be a snapshot as most tumors are not homogenous, so there may have been areas of your tumor that expressed Her2 more strongly.

  • coachvicky
    coachvicky Member Posts: 984

    Kattis ... Like Special I am holding you close with prayers to get pass where you are. Frankly, I remain unsure if any woman with BC is ever 100% cured from the disease and the side effects. I do believe, with help, we can get to a happy functioning state and that takes time as well as medical professional who understand the PTSD aspect of BC.

    I think that there is a step in this journey where we must accept who I
    once was is no longer who I can be. Work was once my life and I was
    good at my profession. I have absolutely no joy in that work anymore. I
    don't know how to explain that either.

    My Primary Care said that the most important and intimate doctor / patient relationship is that with a Psychiatrist. I believe that. Find a great one that understands PTSD and can treat it. You have had a lot to deal with and I hope, despite your current state, you can see your success.

    You know that I am a big chart writing person. How about getting a big piece of chart paper and record all the milestones you have completed successfully? I bet there are more than you realize. You might find journalling helpful. I don't know ... and I am just offering whatever I can to you.

    BTW, I always look forward to hearing from you. I know that I can count on your honesty. Your venting today is a dose of reality for all of us. Thank you. I think you are pretty, too.

    Finally, how about asking for a change from Femara? My DH told me that he did not always like how I was on Arimidex. (Well, sh** I didn't always like me either! Not sleeping more than four hours a night takes a personality toll.) I asked my MO to find something else and I am on Aromasin. I am sleeping and doing much better.

    Best wishes and love,

    Vicky

  • bigpeaches
    bigpeaches Member Posts: 238

    Kattis, Everyone has already given great advice so I have nothing to add except feel free to vent here whenever you need to. We all of course totally understand and are always good, strong shoulders for each other. The depression, anxiety and what not comes and goes, I try to really take in an enjoy the times when it goes.

  • hapa
    hapa Member Posts: 613

    Kattis - I hear you girl. I'm back at work now and...it's hard. I don't know if I can keep doing this, or more accurately I don't know if I should. I get little snippets of focus here and there but I feel so scattered and it's really not good. Friday I left a sample of nitric acid on a scale and wandered off. Someone found it and asked another coworker if she knew what it was and she guessed correctly that it was mine and that it was acid and called me. It wasn't even labeled. That could have ended badly. Every little problem that comes up seems insurmountable, like I'm too overwhelmed to even think of how to solve it. Which is unfortunate because this is my job. And yet everyone at work tells me how healthy and serene I seem since I got back. I don't even know what to say when people tell me that. Sometimes I think maybe I should get a different job, but I don't think I could concentrate on a different job any better than I can this one. I have no answers for you, sorry. I wish I did because I could really use them.

    SpecialK - thanks for that info on AI vs tamoxifen vs expression, it was helpful.

    I am still a little disappointed in how poor my response to chemo was. I was low Her2+, barely amplified and not overexpressed (equivocal on IHC, 3.3 ratio on FISH), and even that was after a couple months of ovarian suppression + AI + 1 round of Ibrance. My MO is recommending Nerlynx, but is there even a point? Don't these medications bind to the Her2 receptor? If they're not overexpressed, why would this stuff even work? I know these are questions for my MO and I don't expect you guys to have answers, these are just my thoughts for now.

  • WC3
    WC3 Member Posts: 658

    hapa:

    People keep telling me I look good too but I think they must be trying to be polite or that they are out of their mind. I think I look like a tweaker with a mullet right now. During chemo people kept telling my my color was good. The dexamethasone withdrawal turned me red.

    Do you think the absentmindedness is from the AIs?

  • nanette7fl
    nanette7fl Member Posts: 412

    W3C you wrote "Do you think the absentmindedness is from the AIs" honey if it isn't then I'm in trouble!! Lately I've been feeling a little cloudy and have to write stuff down!

  • WC3
    WC3 Member Posts: 658

    nanette7fl:

    I have hypothyroidism and have been off my synthroid so I can relate! During the last MRI I had, I asked the MRI tech if the magnet was on (they are always on) and it doesn't sound like the dumbest question unless you knew what I studied.


  • Tresjoli2
    Tresjoli2 Member Posts: 579

    I was having a terrible time with being able to concentrate. I went on an anti-depressant and it changed that dramatically. All the joy somehow got sucked out of my life, I was angry and irritable all the time. Counseling and medicines have done wonders for me and my marriage.

  • hapa
    hapa Member Posts: 613

    WC3 - the absentmindedness was at its peak during chemo. I don't think the AIs have helped, but I'm not sure how much worse they've made it. It's hard to say. I came back to work after surgery to find entire reports that I have no recollection of even writing while I was on chemo. I had told my boss I hadn't started them, and when I went to pull up my data and whatnot there was the report, completely done. That was at least a weeks worth of work that I don't remember even starting. That's how bad it was. That is just one example. I was forgetting things all the time.

    Tresjoli2 - I will talk to my NP about the absentmindedness, but when I brought it up during chemo she just said it was chemo brain and it was normal. Which may be true but it isn't helpful. I'm not angry or irritable. I'm significantly less anxious than I was on chemo. I will see what she recommends for my problems. I don't like the idea of antidepressants, but I have to do something before I make a mistake that costs my career.

  • Taco1946
    Taco1946 Member Posts: 630

    Hapa - I know my mood is better now that I am on fermora. Even my very supportive husband agrees. Everything set me off. Obviously, some benefit from counseling and/or medical intervention. I also know that for me, changing AI's made a difference.

  • rljes
    rljes Member Posts: 499

    Hi All,  Taco 1946 - I agree, my oncologist is 'concerning' he's a real *ss.  But there are no other choices - small town. It took me months to commit to chemo because he kept telling me I would have NO side effects. That's impossible I said, and he replied "but I'm that good".  After that I had the Pharmacy oncologist come to the appointments. 

    I've joined a closed FB group "Neratinib" to get some information about this new FDA approved "Herceptin Pill"  Scary stuff. A year of Diarrhea I have to look forward to. Oh Joy. 

  • TriplePHtown
    TriplePHtown Member Posts: 40

    Hi all, it's been a while since I've checked in. I've been having some aches and pains that we thought were due to AI and am asking for prayers and positive thoughts as an X-ray showed some questionable changes in my lungs. I did not have a PCR after surgery.Hate to burden y'all with this but I'm pretty scared and have CT tomorrow.

  • nanette7fl
    nanette7fl Member Posts: 412

    Triple sending ((hugs)) and tons of prayers your way. Sorry to hear about your lungs and praying it's not more cancer but something simple like infusion stuff.

    ~Nanette

  • moderators
    moderators Posts: 8,643

    Thinking of you TriplePHtown!! Medicating Please keep us posted.

    rljes, there is a lot of discussion in the community about neratinib (nerlynx), which you can identify by using the Search button to the left. You may want also want to look at these pages as well: Nerlynx, Preventive Medicine Helps Ease Diarrhea Side Effects With Neratinib.

  • smokeywins01
    smokeywins01 Member Posts: 2

    Afternoon ladies!

    I was dx triple positive back in 2016 at 37 YO and was immediately put on Zoladex, and I'm still on the monthly shots.

    Six rounds TCHP, finishing the year with Herceptin. Last treatment was September 2017. Double mastectomy in Feb 2017, with recon in Nov 2017.

    Onc had put me on Tamoxifen, but then switched me over to Aromasin.

    The reason for my writing is I'm freaking out a little bit. Having been on Zoladex for over 2 years, and aromasin for approximately a year now, possibly a little longer than that, and just yesterday I had a very small amount of bright red blood, noticed when in the shower. I just started exercising again, 1-min plank every morning, in addition to improving my diet to try to get rid of the 30lbs I gained since finishing treatment. The amount was only noticeable yesterday when cleaning inside with a washcloth, and there was no more for the rest of the night. No flow on a pantyliner like a normal period. Again this morning when I got up, there was another small amount, and no more for hours, until right before writing this post. Every time the amounts are very small, at most maybe a teaspoon. No spotting like a normal period, just seems to collect inside and comes out only when I urinate or clean.

    I have no cramping pains like a normal period. GYN check was in the fall 2018, and all came back normal. I did overexert myself prior to this, helped hubby carry a mattress and boxspring out of the house. I have my monthly appt with my oncologist this month for my next shot, I know I need to mention it to her, but I'm scared cause I don't want more tests. I've already been through so much, including a 2 month experiment with Nerlynx in Feb 2018.

    Has anyone else experienced this? I'm 39 now, and have been considering an ovariectomy, while at the same time I don't want yet another surgery. Then there are the fear of being on the Zoladex and Aromasin for another 10 years or so, since my mom is the only one who went through the change at the age of 50. I'm hoping someone can shed some light on this. I did also have adrenal fatigue prior to my diagnosis, and I've been using natural supplements to heal my adreanals as well. I'm trying to so hard to just get on with life and move past cancer, this is the last thing I need.