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TRIPLE POSITIVE GROUP

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  • jh40
    jh40 Member Posts: 140
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    specialk - thank you so much for your kindness. I suppose if you're connected to anyone where you are treated that knows if they're going to step up to help us that would be nice to know?

    I'm a bit more worried as I've got my period again today. I have been hoping treatment would shut my ovaries down entirely. I got it for only 2 days in August after 2 rounds. I skipped September. Technically 8 days late this time but it's worrisome for me as I understand this isn't a good sign for the efficacy? Am I wrong in that?

  • specialk
    specialk Member Posts: 9,237
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    jh40 - because you are currently receiving chemo I am guessing you will be on the receiving end of the most current information, since they would be scheduling you. I sure hope you can get your regular interval straightened out asap. My contact with my MO would be in the portal, and my question would not take priority since I am not actively being treated. Wish I had a back channel to find out what the situation is. On the cycle question, I was surgically post-menopausal at the time of diagnosis so I didn't deal with this, and one of the reasons you have an irregular situation could be the weekly dosing with interruptions, or it could just be your individual system. Because the dose is lower with weekly administration it may not be enough to put you in chemopause - might be worth discussing ovarian suppression with your MO if you are particularly worried, and/or asking the question to get some reassurance. My understanding about cessation of menstruation is that the ovaries are affected like the other rapid cell turnover aspect - hair, nails, GI system, etc. and how much the ovaries are affected can depend on your age - the younger you are, generally, the less chance there is of chemopause, and by what specific drugs/dosage are being used. I don't think it is necessarily an indicator that your chemo isn't working or is any kind of absolute, and there are definitely others that experience irregular bleeding during chemo. From what I have read periods stop for somewhere up to 70% of breast cancer patients. Important to also note that Tamoxifen as recurrence prevention may not interfere with normal cycle either - it does not suppress ovarian function, but rather blocks the receptor on breast cells. Hopefully your MO can shed some light on this for you.

  • jh40
    jh40 Member Posts: 140
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    specialk - as always thank you. My nurse practitioner said that another interruption shouldn’t have much - if any - long term affect on the efficacy of the treatment, and that they’re working diligently to get the drugs from elsewhere in the country. I do get to have another B-12 shot tomorrow morning so that’s nice, anyway.

    I didn’t know that Tamoxifen doesn’t necessarily disrupt ovarian function. Thanks for sharing that with me. When you say particularly worried, I’m not too sure how worried I should be about that part of things; my knowledge is limited. I think I remember reading that something like 50%> ER/PR positivity within triple positive patients makes for better survival outcomes? If that’s true I’d guess for me Tamoxifen would be successful to a good degree as mine are 75/70 respectively.

    I’ll be entering the endocrine phase of treatment around January I believe. I’d like to educate myself as much as possible about it beforehand. My oncologist is fervent about Tamoxifen. I’d like to try and find out the overall benefit.

  • gamzu710
    gamzu710 Member Posts: 203
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    I'm restarting Aromasin tonight after a 2 month hiatus. The follow-up with the oncodermatology clinic yesterday gave me the green light and my MO was OK with re-challenging instead of switching AIs if I wanted to, so we're trying again. She's seeing me again in 3 weeks and I'm supposed to call her and the dermatologist immediately at the first sign of anything going wrong, if it does. Derm said they will fit me in as an emergency for a skin biopsy. I don't think anything will happen, though.

    He also, bafflingly, thought they could try to "manage" the reaction if my MO wants to finish Herceptin. He said oncologists often "freak out" at every skin side effect and stop things. But he simultaneously said this is "unique" and he's never seen it before and isn't 100% sure what happened, so how does he know? Didn't make sense to me. I told my MO what he said during my appointment today and she dismissed the idea right away. He's the derm but she has 20 more years of experience than him and has done nothing but BC for 35 years, she's literally seen it all. If she hasn't seen a side effect before and is alarmed by it, I'm going with that. I also have experience of her proposing forging ahead with Taxol (with mitigation) even after I had anaphylaxis, so I'm confident that she knows how to accurately weight the cost/benefit of stopping a drug.

    Also have my 6 month MRI this weekend, so quietly freaking out about that. Welcome to the rest of our lives, I guess.

  • joules44
    joules44 Member Posts: 52
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    Gamzu710, your latest post made my ears (eyes?) perk up. I am currently on month 2 of Aromasin, having been on Tamoxifen, then Arimidex, then Letrozole, and now Aromasin. It has been fascinating to see that although all of these drugs perform the same basic function of hormone suppression, the side effects are so different. One of the side effects I've had with Aromasin is extremely dry skin, dry everything really, eyes, skin, lady parts, all of it. I was trying to figure out why you were on Aromasin from the start (as opposed to a different AI) but couldn't follow the thread to see that. I'm just wondering if Aromasin is actually exacerbating your skin issues and if another AI would be preferable. Forgive me if I'm missing pertinent information here and not up to speed. It's just a quick thought I had based on my own experience and the limited parts of your story I've read.

  • gamzu710
    gamzu710 Member Posts: 203
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    Interesting, joules! My MO started me on Aromasin as the first-line AI in March because this is what, in her experience, has the most tolerable side effect profile for women my age who are on OS+AI. The only real side effects I noticed were joint pain and some vaginal dryness, which I found tolerable. I've had dry skin my whole life and didn't notice it getting worse, but then again I'm starting to question if I'm actually noticing some things.

    Your point is very well taken and you're actually the second person in as many days who has mentioned something like this to me. My MO actually originally wanted to switch me to Arimidex and I balked because I've seen other people complain of other side effects on that and letrozole that I was more scared of (foggy/forgetfulness, fatigue, low mood, etc.). But it seems like everyone's effects with these are individual. Since it seems like you've tried all of them, what have your experiences been?

  • joules44
    joules44 Member Posts: 52
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    Well Tamoxifen was fine initially but after pushing me fully into menopause I began experiencing the typical menopausal symptoms of hot flashes, painful intercourse, and then joint pain. I've read that AIs side effects are cumulative so basically they get worse. I don't know if that's true or not. The joint pain eventually got bad enough that I was looking forward to "graduating" to Arimidex because I had read that some women had relief from their joint pain on Arimidex. That was not the case for me. I was on Arimidex at least a year and the joint pain turned into bone pain turned into arthritis in my thumbs so bad I cannot straighten them. And I developed such fatigue. I've always had so much energy but with Arimidex I eventually got so fatigued that everything seemed like a chore. When I learned that there are different AIs and that they have different side effects I knew I wanted to give it a different one a try. For some reason, my oncologist's office tries everything before Aromasin. Maybe it's because it's the most expensive, I don't know. So I switched to Letrozole. Honestly, I was on that for only 2 months. I did see an improvement in my joint pain and energy levels. I think Aromasin always loomed as the gold standard so I pretty quickly switched and I've been on that for 2 months now. My skin is noticeably dryer and I have experienced some insomnia for the first time in my life. But my energy levels are good and my joints feel much better than they did six months ago. I wish I had stayed on Letrozole longer so I had a better sense of what the side effects truly are for me. My doctor, with good reason I'm sure, wants me to pick one and just stay on it, lol. I think starting with Aromasin seems like a great plan for you. I honestly feel like I would have normal thumbs had my doctor suggested that, lol.

  • zkm
    zkm Member Posts: 2
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    Hello everyone!

    I'm just starting my journey and thought to join this group. I was diagnosed with triple positive breast cancer on 10/13. I had my port procedure two days ago and start chemo this Monday 10/31. I've been reading a lot about what to expect and tips to get through chemo. I'm nervous but try to stay positive. Good luck to everyone!

  • cardplayer
    cardplayer Member Posts: 2,051
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    zkm- sending you healing vibes as you begin your treatment.

  • laughinggull
    laughinggull Member Posts: 517
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    Hi zkm,

    Welcome to the group and sorry you have this diagnosis. I was diagnosed five years ago, also in October, also started chemo beginning of November. By the next summer I was done with the hardest part of the treatments and looked terrific in very short hair.

    The things that helped me most during this time were keeping busy, exercising (moderately, depending of side effects of the week) and joining support groups. Best of luck. You can do this!

    LaughingGull

  • joules44
    joules44 Member Posts: 52
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    Zkm, so glad you're starting treatment right away! I had to wait months to get started and it was frustrating and nerve-wracking. I hope treatment is relatively easy for you. Acupuncture monthly really helped my body stabilize during treatment. Exercise was, and is, helpful too. The website, https://foodforbreastcancer.com/ is a great resource. Stay informed, learn all you can. You will get through this!

  • cardplayer
    cardplayer Member Posts: 2,051
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    zkm - REIKI therapy is helpful as well. Some oncology centers offer it for patients as they go through treatment. Although I’ve completed my treatment, I’m still going to REIKI therapy weekly.

    https://www.breastcancer.org/treatment/complementary-therapy/types/reiki

  • bigpeaches
    bigpeaches Member Posts: 238
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    zkm, keeping you in my thoughts as you start treatment!!

  • gamzu710
    gamzu710 Member Posts: 203
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    Welcome, zkm! We're the friendliest club you never wanted to be a member of. Best wishes as you start treatment! You will get through it. One day at a time!

    I had a clean follow-up MRI yesterday (my first time seeing BIRADS 2 on a report since this nightmare started) and have reached out to my team about having my port removed, finally. I have a radiation oncology follow-up tomorrow and then both my MO and the derm want to see me back in the next few weeks for continued skin side effect monitoring. I've been back on Aromasin for 6 days and have had some sporadic itching and tingling but I don't see anything so I think it's psychosomatic. Which wouldn't be surprising given how fixated I've been on this issue.

  • jstarling
    jstarling Member Posts: 137
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    My Herceptain infusions were repeatedly delayed due to heart effraction issues but Iwas able to get them all eventually and within eighteen months of starting; so hang in there

  • jh40
    jh40 Member Posts: 140
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    I’m getting my last chemo treatment as I type this out. I’m so grateful to this forum but especially this thread for us triples.

    Never thought I’d make it to the chemo finish line but here I am, about to cross it at about 3pm.

    I’ll still be on here because on goes the immunotherapy, but for now I just wanted to thank everyone for their input when I’ve asked questions; it’s been invaluable.

  • cardplayer
    cardplayer Member Posts: 2,051
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    Congratulations on getting your last chemotreatment jh40!!

  • jh40
    jh40 Member Posts: 140
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    cardplayer - thank you! I'm feeling very rough today and expect the next few weeks to be doozies, but hopeful that I'll approach normality with steady speed.

  • moderators
    moderators Posts: 8,287
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    Indeed, congratulation jh40! We hope you feel more "normal" in the next weeks!!

  • tammymo
    tammymo Member Posts: 4
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    hello!

    I started taxol, perjeta and herceptin on nov 8th, I got all 3 at once and then today only taxol next week is a break and then I start again. 18 total cycles of this. I haven’t had any side effects really, a little tired, some light loose stools, but last Thursday I started getting pimples, absolutely everywhere, my hair, neck, chest, face. It’s in my ears, inside my nose, on my eyelids. Today during chemo we talked about it, I was told to take Claritin, Benadryl and a cortat cream. It already seems better but is this going to last the whole time? So annoying.


    im scheduled to get a port next Thursday and I am absolutely terrified. I had a pretty bad experience with my biopsy in my breast. It never really went numb no matter how much medicine they put in there.

    Can I go shopping? To the movies. You know places? Monday my labs showed my white blood cells barely even bugged from pre-chemo. Does that get worse? When does it get worse? Can I plan anything?

    Sorry so many questions. I probably should post in newly diagnosed but I like it here 😁 and I am triple positive which doesn’t seem like many are

  • joules44
    joules44 Member Posts: 52
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    tammymo, I loved my port! I was so damn grateful for it every single week as I watched elderly chemo patients suffer while the nurses attempted to find a good vein for their IV. It is an easy way to quickly and (almost) painlessly get hooked up for chemo each time. It is barely perceptible through clothing and since it's winter and you'll be wearing bulkier clothes, it won't be noticeable at all! What are you most worried about with the port?

    As for going out, I did all the things! Every person's experience is different, however, but you'll probably quickly get into a routine and you'll know what days are good for you in the cycle and what days you need to rest.

  • joules44
    joules44 Member Posts: 52
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    tammymo, one more thing - I was given Benadryl in my IV drip prior to chemo each time and I never had a reaction. It could be just the thing for you!

  • specialk
    specialk Member Posts: 9,237
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    jh40 - oh yay for you! I had some cumulative side effects as I went and expected the usual more acute ones as I had my last infusion, but that did not happen, I was so surprised - I am so glad you are closing out this chapter! I felt immensely better at about the six week point post final chemo. That seems to be a common timeline. I did not have too much trouble with the remainder of Herceptin once they slowed it back to the original infusion time.

    zkm - welcome! Sorry you have to be here, but glad you found us. Ask questions of us, there is a wealth of experience here. The beginning of this is all such a whirlwind but once you settle into the active treatment phase things usually calm down to a degree. What regimen will you be on?

    gamzu - hang in there with the Aromasin challenge - hope things go smoothly with your poor skin.

    The convo regarding anti-hormonals is always interesting, as individual experience varies so greatly. Tamoxifen does not suppress estrogen, and actually increases serum concentrations in some people. The mechanism of action is to block the receptor on breast cells so that they cannot be fed by estrogen. That said, many experience side effects that are more synonomous with menopause. Arimidex (anastrazole) and Femara (letrozole) are aromatase inhibitors for use in post-menopausal patients, and work similarly, but some people have symptoms that can be caused by the fillers and additives contained in the generic formulations and do better on the name brand. The mechanism of action in aromatase inhibitors is suppression of estrogen created by the enzyme aromatase that converts androgens into estrogen, and functions on the premise that the ovaries are no longer producing estrogen. There is no effect on ovarian produced estrogen and this is why this class of drugs can only be used in those who no longer produce any, or by those who are having it suppressed by medications. Both are non-steroidal. Getting insurance to pay for the name brand can be a bit tricky because there are generic alternatives. There is a direct mail, non-insurance, source for brand name Arimidex, which I will link below. Aromasin (exemestane) is a bit different from Arimidex and Femara in that it is an irreversible steroidal aromatase inhibitor. If you find that you are sensitive to any of the generic formulations it may be worth trying different brands and looking for one that has the fewest additives and fillers. Linked below is a website that you can use to check what is in each generic brand, aside from the active ingredient.

    https://www.eaglepharmacy.com/drug/arimidex

    https://www.accessdata.fda.gov/scripts/cder/iig/index.cfm

  • tammymo
    tammymo Member Posts: 4
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    joules44, I guess mostly afraid of getting it put in and that the medication won’t work and it will hurt. I already have a pretty hard time with bloodwork, although the chemo nurses haven’t had any trouble and I was told I won’t be able to get blood taken from it or use it for contrast as those techs aren’t trained to use a port. So it looks like I’ll still be getting poked often.

    They do give me pre-taxol meds, a steroid, Benadryl and some kind of pepcid injection. This morning after taking Benadryl all day yesterday my skin is 100x better so it looks like it is some kind of allergic reaction

  • yesiamadragon
    yesiamadragon Member Posts: 343
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    Hello Tammy, and welcome. Sorry. you earned a spot here, though.

    Count me among the people who LOVES their port. The first month it was pretty sore, for sure. I did get a seatbelt cushion which helped a lot with that, and initially I used Emla cream on it before infusions. Now it doesn't hurt at all to be accessed and it is so convenient, plus I don't need to worry about my veins getting damaged. I am done with infusions but keeping it for now 'just in case' and for blood work.

    For the rash -- since it is all pimples, see if you can see a dermatologist. I was diagnosed with bad rosacea that the dermatologist attributed to the chemo altering the 'bugs' on my skin. So I use creams for that now and it is all cleared up, whereas the acne creams I tried initially did nothing.

    Chemo can be super tough, but take it one day at a time and you can get through it as we all did. Hang in there!

  • elainetherese
    elainetherese Member Posts: 1,632
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    I also loved my port, which was installed in July of 2014. I used it for chemo, blood draws, MUGAs, PET scans, and the like. During the last five years, my onoclogist kept encouraging me to have it removed, which I finally did a few months ago. I then learned that the longer you leave in your port, the more difficult it is to remove. My port removal was nevertheless pretty uneventful, though the surgeon had to tug on it a bit to get it out.

  • maggiehopley
    maggiehopley Member Posts: 121
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    Tammymo,

    Another port lover here. I was completely sedated for my port placement, although they will use a local only when it comes out. I had 12 weeks of taxol plus herceptin/perjeta before surgery and now am doing 18 cycles of Kadcyla every 3 weeks. I can't imagine using my veins for this. I use the Emla cream before it's accessed. They say put it on 60 minutes ahead of time but I found that for me 90 minutes is better.

  • jh40
    jh40 Member Posts: 140
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    specialk - thank you! I am very happy to be done with chemo but I do have to say I felt a mix of emotions going into the last round. A bit of everything, really. I think my APN was right when he said that I had my blinders on for survival mode and it kind of all hits at once when chemo is ending. Also felt fear of recurrence but he said the more time passes the easier that gets.

    The side effects have been about the same. I expected much worse but it was round 9 that was the worst one for me. And thanks for letting me know about the 6-week mark. Hoping I follow that same timeline.

    Did your hair thin or fall out? Did it start to return at the 6-week mark?Mine has thinned quite a bit and I’m hoping it comes back.

  • greenbean2468
    greenbean2468 Member Posts: 19
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    Hi everyone!

    I've been lurking since my late-Oct diagnosis so i thought I would finally say hi and thank everyone for all the help I've already gotten from reading this triple + group and the overall forum.

    I got my port on Wednesday and have my first chemo this Monday. I'm getting taxotere, carboplatin, herceptin, and perjeta. I'm worried about how bad I will feel and how much I'll be away from work but I am trying to stay in today and not get ahead of myself.

    Thank you all for sharing your experiences. It truly makes this diagnosis a lot less scary. 🥰

  • cardplayer
    cardplayer Member Posts: 2,051
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    Hi greenbean2468 - best of luck with your treatment tomorrow. Everyone is different and has different reaction to treatment. I am retired and was glad that I didn’t have any work commitments. Talk to your MO about treatment for possible side effects and your work schedule.