TRIPLE POSITIVE GROUP

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  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited August 2017

    I just wanted to let you all know that I'm coming up to almost 7 years since my TP dx. I did have a bit of a backslide when I then got a completely new primary triple negative in the other breast almost 2 years ago - but it was good to know that it wasn't TP again! LOL.

    I'm still on Femara from the first go round with bc - Hap - I think you asked about the ses? I started on Arimidex - it was awful, horrible - for me. I lasted around 8 months. It took my brain away as well as hobbling me (in that I could almost not walk for pain). I went onto Aromasin, and was on that for around 3.5 years before I started having thunderclap headaches. But I got my brain back on Aromasin, although the pain in my feet spread to my knees.

    I've been on Femara since I stopped the Aromasin - and my onc tells me I'll be on it for the rest of my life probably. I can only take half a tablet a day though as I started getting the thunderclap headaches again and started hallucinating while awake (yikes!). Half a tablet is fine for me, and seems to be working as my second bc was ER-. I have pain in pretty much all my joints, I've also recently added two prolapsed discs in my lower back that are significantly affected by arthritis - almost certainly caused by the AIs. But - I'm alive, and I can live with the pain - I keep myself as active as I can (aquarobics almost every day, as well as walking as far as I can).

    I have my brain, and unlike quite a few of my (TP) friends who decided not to take an AI do not have mets.

    I'm pretty happy - although the spectre of bc hangs over me quite a bit more after the second dx than it did after the first one. I work four days a week, and potter for the other three, and I feel happy!

    Hang in there everyone, there's no guarantees but, life is good so long as you live it.

    Trish

    xoxo

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  • Trisha-Anne
    Trisha-Anne Member Posts: 2,112
    edited August 2017

    Hi Hap

    Yes, I had both ILC and IDC. The ILC was not HER2+, but ER/PR+ It was the IDC that was TP. I had FEC-D for the first bc - treated for the IDC. I'm in Australia and our standard of care is slightly different for TP. I only had 2 infusions of the Docetaxol (Taxotere) though - it nearly killed me. The second dx I had ACT and could only do 3 infusions of the AC (Adramyacin and the Epirubicin, the E part of FEC, are both from the same family - and there's a lifetime dose limit of 6) The Taxol was so much easier on me than the Docetaxol so I was pretty happy about that.

    I too had really, really thick hair prior to bc. I wear it short, and get it cut every six weeks. I'd have to have it thinned every time I had it cut.

    I never have it thinned now. It did grow back - slowly while I was on Herceptin, and then when I finished that it took off and grew quickly. The second time I lost all my hair, it started growing back while on Taxol - but fluffy stuff that fell out, and then my real hair grew in. It's a LOT thinner than it used to be, but there's enough to cover my head. My hairdresser notices I lose a fair amount of hair when she's cutting it, but it does seem to grow back. It just won't ever be as thick as it used to be. Actually none of the hair on my body is as much as it used to be. I don't seem to have any under my arms, and the hair on my legs is sparse too. The AIs can thin your hair.

    I can tell you that getting that second dx was probably the worst thing I've faced. I knew exactly what was in store for me. I assumed that it would be TP again - so the TN dx was a kick in the stomach. I decided I wasn't going to do chemo again - the first time was so hard. After a couple of days, my inner "glass half full" asserted itself and I decided to give it a try. I must say though - my onc had to push to each treatment for the first three (the AC didn't agree with me at all). While Taxol was a lot easier - my liver started to shut down halfway through it, so we had to delay chemo. But finish it I did, and now I'm glad I did.

    Trish

    xoxo

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

    Hi Trish!

    Ugh about the triple negative recurrence! I, too, found Taxol easier to tolerate than AC.

    I've been on Aromasin for 2.5 years, and it's given me full-blown osteoporosis so I'm on Fosamax.

    In short, I'm on two meds to cope with the side effects on Aromasin! Aren't these meds grand?

    Glad to hear you've bounced back from the triple negative scare! Many ((Hugs))!

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  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    So I have a question that I asked my Onco..... I have never had acne before in my life and about a year ago I started breaking out like crazy. I wrote it off as stress. I switched jobs, lost both parents and other things. So in January I was diagnosed as Trip + With very high ER and PR levels. Could that have anything to do with my breakouts...??? Anyone have thoughts or a site I can go read about?

    My Onco really did not answer my questions., she just told me that if I wanted she could set me up with a dermatologist. Like I want to see another dr.

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

    shelabela - your ER+ is not a measurement of the level of estrogen, it is a percentage of receptors on your breast cells. I am surgically post-menopausal, definitely had low estrogen prior to diagnosis, yet I was 96% ER+ due to the very high number of receptors. This means that my breast cells are very ready to suck any estrogen produced or introduced, but not that I have a high level of estrogen circulating in my body. Adult acne is definitely a thing, lots of people suffer from it, including those without breast cancer. My daughter has a problem with it as well. The topical gel Differin just became OTC, having been offered only as a prescription previously. I think you can get it at any drugstore, or order it from Amazon. You might try that, or use Proactiv - they just added it to their products.

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  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    Thanks Hapb,

    The last 3 years have been horrible. I would like to start them over.

    SpecialK

    I did not think they were connected but who knows. I also never thought I would get breast cancer. I appreciate you explaining this to me. It just seemed so odd that I get acne now and never did when I was younger. I suppose my skin is changing all the time now. From the cancer and drugs and age. Getting older is not fun. I would like to go back and play in a blanket fort again.

    Shel

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  • Kimberbir
    Kimberbir Member Posts: 65
    edited August 2017

    Oh how I to miss the simpler blanket fort days :)))


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  • toughcookie_21
    toughcookie_21 Member Posts: 185
    edited August 2017

    Shelabela, I'm so sorry to hear of the loss of your parents and the tremendous stress you were under. I personally believe that stress has a lot to do with breast cancer and creates an environment where it can grow faster. That's just my opinion, definitely not based on science or fact.

    I also believe that, for me, my estrogen levels have been out of whack (high) for a long time. A few years ago, my ob/gyn had me get a hormone test because I was experiencing symptoms of pcos, but there were no cysts found upon the ultrasound. I did all kinds of research into it and she agreed that it might be estrogen dominance and she had me get a hormone test. My estrogen levels were high, progesterone was low and testosterone slightly elevated. I was supposed to get additional tests at different times of the month but life got in the way and I never followed up. I got a new job; one with lots of travel and responsibility and I let the testing fall by the wayside. I believe the stress and the high estrogen created a perfect storm for this breast cancer and that's what got me here.

    I have dry skin but occasionally break out with painful pimples. I have found that tea tree oil works well for my breakouts. I also have heard that Proactiv works great too. It sucks that we have to deal with all these additional problems. Like cancer isn't enough! A blanket fort sounds like a fantastic idea.
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  • kae_md99
    kae_md99 Member Posts: 621
    edited August 2017

    shel,

    have acne too.. i think its from

    stress and lack of sleep. prescription clindamycin and benzoyl peroxide is working...

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  • Lita19901
    Lita19901 Member Posts: 211
    edited August 2017

    You know what I hate, hate, hate about BC? I hate that it hits you younger women. I'm not crazy about having it at 65 but it just seems so damnedly unfair that you're having to go through this when you're so much younger. I know things happen when you're younger, first hand - I lost a child when I was 27 - but this just isn't the way things are supposed to be. It just makes me feel so sad and resentful.

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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited August 2017

    Shelabela,

    In January 2016 ( I was 47) i started breaking out in acne; I too didn't have acne prior. I went in to have a skin consultation, etc. I noticed my lump in May and was diagnosed in June. I realize that perimenopause and menopause can do this a bit, but given the diagnosis, I believe it is connected. Nobody will tell us that, but my gut says that absolutely the acne was somehow connected.

    I now get much less, but will get a couple pimples maybe based on what I eat. I use Prosacea on them (topical ointment)

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  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    They were always my go-to place when i was not happy as a child.

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  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    HapB,

    I am 44 and wish my parents were here to take care of me.! What I wouldn't do to be held by mom right now and told that I will be ok! To have her lay my head on her lap and rub my back. To just have her support right now as I go through the toughest thing I have ever endured up to now. Some days I feel completely alone.


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

    Thank you PoseyGirl, will start reading at once. I asked another oncologist today about immunotherapy and according to her it is in the research stage but will be mostly beneficial for triple negative.

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

    Congratulations Trisha-Ann! 7 years, wow!

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  • kae_md99
    kae_md99 Member Posts: 621
    edited August 2017

    shel,

    i am 45,my parents are out of the country as they dont live in the U. just learned yeaterday that my grandma ( mom'smom) who took care of me as a child is dying...its really tough. ....i wish i could turn back the clock..there are days when i feel alone ,too.. and i cry out of the blue...

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

    Shelabela, hugs, many hugs, you must miss them a lot. My eldest daughter had acne and she used to order some products from US. I will ask her and send you the list. And hugs again. Cherry

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  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    thanks ladies! Just a down day. Hugs to all

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  • Gigilala
    Gigilala Member Posts: 148
    edited August 2017

    i have acne too

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  • meg2016
    meg2016 Member Posts: 287
    edited August 2017

    shelabela echoing an earlier comment, I also was having unusual acne for a few months before my diagnosis. I also was having some mood swings and other things that indicated hormone imbalance. I went in to have my thyroid and hormone levels checked, Dr refused to test my hormone levels because I was young, but thyroid and fasting blood sugar were ok. She said maybe its just stress. 3 months later I went in because of pain in my breast and ended up with diagnosis. I do believe it is all connected to hormone levels.

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  • Taco1946
    Taco1946 Member Posts: 645
    edited August 2017

    Talking about hormones running amok. I was having hot flashes at age 70 when I was diagnosed.

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  • PoseyGirl
    PoseyGirl Member Posts: 359
    edited August 2017

    Wow, a pattern (re: acne and other out of the ordinary signs before diagnosis). And yet not noted anywhere.

    Shelabela, I am surrounded by family and yet can feel so alone. So I can't imagine how you feel at times. Sorry ;(

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  • shelabela
    shelabela Member Posts: 584
    edited August 2017

    Thanks Everyone!

    Some days are harder. Obviously yesterday was a bad day. But as usual you ladies here help me a lot! Thank you all for listening and cheering each other on.


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  • beachgirl1
    beachgirl1 Member Posts: 4
    edited August 2017

    hi all - new to this group - was recently diagnosed. IDC, 1.8cm, triple positive. Docs are recommending lumpectomy, followed by chemo and radiation (not sure which would be first)

    Any advice on how some of you all made your decisions on:

    -lumpectomy vs mastectomy (realize some may not have had a choice)

    -did you have a consult with an oncologist in the beginning? The doctors I have spoken with all seem to say no need to speak with an oncologist now - can wait until after surgery.

    -if you have had chemo, has anyone had experience with capping to prevent hair loss?

    Thank

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  • Kimberbir
    Kimberbir Member Posts: 65
    edited August 2017

    beachgirl1, sorry you are here but welcome to the group there are a bunch of wonderful women here with priceless info that only someone going through this can give. This is just my view, I was also told I did not have to meet oncologist until after surgery,if I could turn back time I would have meet them as soon as possible, would have had more time to think and plan. They say there is a window of time between surgery and chemo(if you need chemo) for the best results (another thing they forget to mention) So my opinion meet them all get it over with.

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  • deni1661
    deni1661 Member Posts: 463
    edited August 2017
    Wow Shelabela, I can relate to your post. My mom's birthday was Sunday and I still miss her terribly. She died 17 years ago. Mom's are the best and I often think how nice it would be to have my mom to talk to these days. This community is the next best thing. I'm so sorry for everything you've been through in recent years. Sending lots of hugs your way 🤗
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  • LTWJ
    LTWJ Member Posts: 121
    edited August 2017

    So yesterday was terrible for me, I had 5/6 of TCHP last Friday and I'm so exhausted and my feet are killing me. The neuropathy is so painful. Just got back fron the dr and he precscribed Cymbalta and oxycondone for tne pain. I didn't get any sleep last night because I'm obsessing about the pain. Now I'm terrified of these meds but I just have to keep saying everyday gets better. One good thing is my tumor marker is now 38 so tne normal range. Anyone taking cymbalta for this? The dr said it's for neropathy but I doubt that. I think it's so that I don't care that my feet hurt so much. I know just 1 more chemo but then I have surgery, rads and Herceptin.

    My in laws have a house in Port Aransas and they were evacuated here but have gone back to access the damage, and my father, who is 85 and lives alone in NC, called me yesterday and said that he is having trouble walking now and it's all so much. My mother died of lung cancer when she was 50 and I'm trying so hard to be strong but it's hard. I really wanted the dr to say stop tne last chemo but then I feel like I'm letting my family down and that made me super sad. I know these are the hard days but I wish I had surgery first. Just knowing how weak I am, then going to have surgery makes this hard.

    Sorry for the long vent, just needed to ask.

    -Laura :



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  • beachgirl1
    beachgirl1 Member Posts: 4
    edited August 2017

    thank you HapB and Kimberbir - very helpful and thanks for the welcome. Good to know I have company- sending good wishes to al

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

    ltwj - Cymbalta is used for fibromyalgia, so it has legitimate potential to help with your CIPN pain. My CIPN dissipated gradually and was gone by about 90 daysPFC. If it offers any hope, infusion #6 was my easiest and the first that didn't cause GI distress. Hang in there.

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  • PatinMN
    PatinMN Member Posts: 920
    edited August 2017

    Beachgirl1 - I used Penguin cold caps and saved my hair. Here is a link to one of the discussion boards on cold capping: https://community.breastcancer.org/forum/6/topics/735873?page=644#idx_19303 I had weekly taxol/herceptin and lost almost none of my hair. That is by far the easiest regimen for cold capping to save hair. Results with other chemo regimens vary. I also recommend you go to rapunzelproject.org for lots of good information. The Rapunzel Project is a charitable organization that offers medical freezers to chemo facilities to use for cold capping (instead of the patient having to haul dry ice). There's a list there of facilities that offer the medical freezer, as well as the "machine" type cold cap that was recently approved by the FDA.

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