TRIPLE POSITIVE GROUP
Comments
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Elaine, the same thing happened to me. My periods stopped after my third AC. I also get warm flushes. Nothing too bad...no sweat dripping off my body! I'm now 6 weeks PFC. and still no period. Chemo can cause you to go into permanent menopause if your body is ready. I've been experiencing peri menopause symptoms for a few years so I dont know if my periods will come back
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As far as hormone blockers, I'm not sure. You have to be either post menopausal or do ova suppression to take an AI. I'm currently taking Tamoxifen. The SOFT trials came out in December comparing OS + AI vs OS + Tamoxifen. My understanding was that if your periods came back after chemo, they recommend OS + AI. But That will be something you'll have to discuss with your MO. Every situation is different.
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Who did neo-adjuvant chemo w/ Perjetta and will continue it with Herceptin for the full 12 months? Any idea why, as my MO has not suggested this, but I saw a person on the December Surgery Sisters topic who is doing this. IF you are doing this, are you having any of the diarrhea symptoms? Did you have them when on chemo? Anyone have links to why to do this as in ASCO Guidelines, conference topics, new studies?
Chemopause - I'm 49 and had my period every 28 days down to the hour, but once I started TCHP it stopped. Mind you, I got the huge zit or cold sore (not sure what it is) below my bottom lip on the 28th, like I normally do monthly w/ my period. So... not sure if my body is starting to make more estrogen. ...
So clueless on the whole tomoxifen AI thing. My MO doesn't want me to start anything until he can find out from the June pathology reports (no cancer present on my post surgical) to see if my HER2 cancerous cells were estrogen positive, or if I had both Her2 + and Estrogen on the cancer cells. Something about not doing both as they use the same receptor, and they might block each other if my cancer cells have Her2 and hormone positive. We haven't even discussed ovarian suppression. Is the MO who you talk to about that or do you have to find an oncological GYN to discuss supression vs removal???
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My periods stopped during chemo as well, and I've had some warm flushes, but I'll be curious to see if my periods return, as I'm only 43 and wasn't close to menopause before all this fun started.
knmtwins, I'm only doing herceptin for a year, though I did have perjeta with my chemo and herceptin for 6 cycles. There's been no talk at all of me doing perjeta for the next 7-8 months.
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I also will be doing herceptin after tchp until august. I have only seen one person say they will be receiving perjeta as well on the august 2014 chemo forum, and had the same thought myself. Figured I am probably ok not pushing for it with my MO since herceptin itself is tough on the heart to begin with. I also had a chance to join the tdm1 trial for this remaining portion but have decided against it for the same reason. I hope I don't say what if years later... Even 6 months of herceptin is probably enough who knows.
I couldn't follow the er and her2 positive discussion above, aren't they two separate things?
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I don't understand the difference between the Her2 cells being ER+ and them being both Her2 & ER+. I've consulted with 3 MOs. All three of them have told me the hormone therapy was just as important as the Herceptin.
I've also seen a few that have received Perjeta for a year. But that's not standard care. Perjeta can be hard on the heart like Herceptin.
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Estrogen receptors and her2 positivity are two separate matters completely, and herceptin is for the her2 part of it, and tamoxifen and the A.l.s' are for the estrogen part of it. The lady on the other thread may be confused, or maybe she is in a trial? And I personally have never heard of anyone doing perjeta for that long. But things do change all the time.
knmtwns, your bottom line says you are er positive and her2 positive? Right? So if you are premenopausal, you can do tamoxifen or an ai WITH ovarian suppression. if you are past meno, then you can do ai or tamoxifen, no ovarian suppression necessary. Maybe he was going to check your circulating estrogen level in your blood before prescribing?
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I'm confused too, which is why I posted. If I understood my MO, sometimes the cancerous cell is only HER2 positive and there is ANOTHER cancerous cell which is ER+ or PR+ or both (hence hormone positive) and sometimes the cancerous cell is BOTH hormone and HER2 positive. Based upon what the cells are, is WHEN he would start the hormone therapy, but that is an absolute, that I will start hormone therapy. Does that make it any clearer as it is confusing.
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Yikes! No, sorry sweety, I am really confused! Maybe you can call his physicians assistant for clarification? Or one of the other fine ladies might show up to help make it more clear...hmmmm, just don't understand, myself..
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ElaineTherese I have never had a sweaty hot flash. I was 49 when I started chemo. My periods were regular but lighter than that used to be. I was considered perimenopausal. So yes those are hot flashes. My last period was 2 weeks before chemo. Chemo stopped my cycles dead. Never came back. My MO did start me on Anastrozole but did test for 5 months to be sure I would stay in menopause. Given when my sister and mom went through it she was pretty sure my cycles would not come back .
What knmtwins is trying to say is a tumor is not homogeneous. Part of the tumor might only be HER2+/hormone negative yet another part is HER2 negative/hormone positive… but if the invasive part of your tumor is either of these it doesn't matter which part. You will get the treatments that fight these factors.
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I think it is fairly unusual to do both neoadjuvent Perjeta for early stage BC, and then continue it with the Herceptin after the completion of chemo, but I have seen some people do it too. If they are at a higher stage I could understand it, but I think some MOs are just doing it - flying without a net - because insurance will pay for it. It is not what the intent of the FDA approval for early stage is, from what I can tell.
On the subject of ER+ and Her2+ - the ER+ is the presence of a positive receptor on the cell, which is fueled by estrogen. Her2+ is a genetic overexpression of protein that causes proliferation of cancer cells. I think the two overlap in that Her2 is regulated through the estrogen receptors. My understanding is the problem with using Tamoxifen in some Her2+ patients can be that sometimes the ER+ receptors become resistant to Tamoxifen when there is an imbalance of proteins within the cell, and this renders Tamoxifen ineffective. This logic would not apply to aromatase inhibitors because they suppress estrogen production rather than using a blocking mechanism.
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Happy New Year to all.
I see many new ones here but of course the gals I have known and I do hope all u new gals have all good results with all u'r treatment and all the help this thread will offer u is amazing.
And everyone have a super healthy, happy 2015--u all deserve the best--so Cheers and celebrate.
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camillegal - Happy New Year to you too!
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Happy New Year Camillegal. So good to see you!
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Happy New Year to you too Camillegal!!
knmtwins, I understand what you were trying to say (per Lago's explanation). I've just never heard anyone say that they had to wait until after Herceptin to start hormone therapy.
Lago, did your MO test your hormone levels monthly? I had suggested every three months to my MO. She said we could test them every 3 months or even wait up to 6 months. I'm not sure I'll be comfortable waiting 6 months. What if my hormone levels start rising 5 days after we test them!?! My periods were regular too (I was on birth control) but a few times a year they were extremely heavy and lasted 6-7 days vs the normal 36-48 hrs. That combined with all the other symptoms I was having, made my gyn think I was peri-menopausal. My mom had a full hysterectomy at age 24 so I have no idea what would be a normal age for me to go through menopause. Who knew I'd be wishing to be post-menopausal at age 42.
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knmntwins, The petruzimab (perjeta) trial I was on, which was for early stage, adjuvant treatment, had everyone doing Perjeta with Herceptin for the entire year. You'd get them on the same day, every 3 weeks. I'm hoping I didn't get the placebo and got them both. At the time I embarked on the trial, research had shown the risk for heart is no greater than when on Herceptin alone. I don't know if more research has been done since then.
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Happy NEW Year to Everyone!
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Cammillegal, so good to see you! I had been wondering about you! Happy new year to all! It really is one of my favorite holidays, it reallly does seem like a fresh page somehow, filled with hope and new possibilities, sparkly and fresh! And all the cold weather really helped make it feel like a new start. And, I got to wear a new parka, so soft and sage green that i got for a christmas present two years ago! Yay!
lago and specialk: see? I knew you would show up and explain it much much better, I am going to take a screen shot and put it in my file for future reference, because you explained it so simply and well. I should like to try and memorize, we'll see about that! well done.
On the 7th, I get to have a follow~up MRI, 'cause I had my regular mammo a little early a couple weeks ago. This "spot" we all have been watching for a year or so, a little south of the scar, right under the skin, on top of the interior part of the scar, has been pulling my nipple to one side, and sometimes the nipple would be sunken into the breast and the knot itself I noticed was casting a shadow from my nightime reading lamp. It felt bigger and rougher, right under the skin. Since i have been the girl with a great imagination,who cried wolf on it before and I have always been concerned about it- MRI. Because I got tired of it being nothing all the time, in their opinion, I quit bringing it to their attention. because it seems to have definitely changed, this time I called them. I was supposed to have my regularly scheduled mammo on the 7th, but when I called to give them a heads up about it, they wanted me to come in early. After the mam and us, and also I got called back in for more views THREE TIMES, and then sat in a room alone for 45 minutes while they reviewed everything, BS said can I do an MRI after the first. She said sometimes things hide around the scars. And that depending on what they find, they might want to do a biopsy. Well, at that point, I think I would rather do another year of "watching", because MRIs' show EVERYTHING, but with no specifity, because it shows stuff, but not WHAT it is. Since I was the only one worried about it previously, and they were the ones who wanted to wait and watch, I am going to tell them thats what I would like to continue doing, just to hear their arguments now, from my previous position, that IT WAS ALWAYS SOMETHING.. They had said it was probably fat necrosis, or denied even being able to feel it. Oh, and the us lady had asked about the bump i was concerned about on my ribcage too. She said it was bone, and i told her that was funny, because when they did a biopsy on it, a year ago, it was benign glandular tissue. That one seems rougher and bigger too, and very painful because of it's location. Birads had gone from 2 to 3, and now they gave it a four.
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Mommato3 my MO tested me for the first 5 months on anastrozole to see if I would stay in menopause but remember at that time I had just turned 50 (2 weeks PFC) and I had a sister and mom to show family history. If I were 42 I'm sure she wouldn't have put me on Anastrozole unless we did ovary suppression. There is a big difference between 42 and just turning 50.
Tomboy 4 years prior to diagnosis I had a scare. Got called back for US. Everyone said it was nothing. Continued with mammograms…the 4 years later I had a 6.5 cm (5.5cm IDC/1cm DCIS) in the same spot! Also I had an MRI before BMX. Thank goodness I did.3 spots. One of those suspicious spots in the other breast was LCIS. Given that I was diagnosed in the other breast there was a good chance I would eventually get it in that one too. Don't wait a year.
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tomboy - don't wait.
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i third, don't wait. And Hugs. Whatever it is you will handle it. Hugs.
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4th - don't wait. We will all be here to help.
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Tomboy
Don't wait... We're all here to help .
More anxiety with wait IMHO....
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I guess I'm number 6. Don't wait!
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tomboy, I'm guessing you now know how we feel! LOL. Don't think we are telling you what to do, but we certainly know what we would want you to do! Hugs. I Rembered my scare that turned out to be a fat infiltrated lymph node. Sucker was as big as an egg and required 2 US and a mammo. Yes a mammo for someone who had a BMX. Such strange things we go through. So hang in here and HUGS.
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Hugs Tomboy! I'm scheduled for my next mammo this month and am totally petrified, as usual. But everyone is so right. One of the best pieces of advice I received during treatment was from an administrator in my building. She just looked at me and said if it comes back, you'll now know how to handle it again and you will again be successful. How sweet is that? I hugged her!
Happy New Year everyone! Many good wishes, especially to those going through treatment. What I have been really struggling with myself recently is that I am wondering how this experience has changed me. I'm not doing much healthier things like I should be, except going to Weight Watchers and watching what I eat. But no, I don't gravitate towards the strawberries and the carrots at my work cafeteria. I'm still the biggest wine and cheese hog on the planet.
And then it hit me. Just today. I really think I've been through enough pain and fear to really, really appreciate the little things. My Christmas this year was the most appreciated ever, just wonderful. Lots of time with family and old friends and yeah, I spent too much money, but I can't explain how grateful I am for all of it. This is where I know I've changed. Before I would have been annoyed by the travel, tired from all the socializing, really just wanting to sleep and shop, and now, a trip to the local Applebee's with my Mom, brother, sister-in-law, niece and nephew was so cherished and so special! We all ran around like maniacs from one event to another, and I just soaked up all the love and familiarity and family!
So we do change, I think, but it is slow.
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Thanks you guys, and i am going for the MRI. I am not really scared, as I have been biopsied several times since treatment, and many different types of imaging. I just have a strong intuition that things are not normal in that one spot, and in the other spot that a year ago was benign glandular tissue. And when I would ask them to feel it, they would poo~poo me, and that has been what I get upset about everytime. I know my body. The us lady told me that the lump on my ribcage was my rib. but a year ago, they biopsied it, and it was a "reactive node". Just for that tech to tell me, "it's your rib"" firmly, twice, is what got my goat and made him moo. Like I don't know better, and it's not my rib. And at that time, the clinic notes said no lymphadenopathy. It hadn't changed from the time before when there was "lymphadenopathy", which just means it can be palpated.
It's just that so many times, even here on BCO, when a woman only has a couple years NED, and she has a recurrance, you KNOW since her DX that she has been followed closely, and when it is found, it is much bigger than a centimeter already. I found one whos' thing was six. And then I have been doing some reading, and found some info that said they know the doubling rate, and they know most things can't be imaged till they are at lest a centimeter. And that if it's in your bones, it can destroy 50% of the bone in that spot before it can be found on any imaging. Just things like that.
Moon, I am pretty sure that node or whatever it is in my side is just bugging me because of where it is. It hurts sometimes and must be pressing on a nerve or something. Did they take yours out? I do think I am going to ask them to remove it. It always has this "sensation" almost like an itch and pressure, that means I notice it many times a day , over and over.
But thank all of you good women, who know me, and are concerned. Its funny, If I don't come here for a few days, or don't see someone here for longer than that, I wonder how they are doing and what they are up to.
Got a fitbit, its making me crazy, but I already love it! A dear hearted woman here on bco and I gave each other a present, I gave her a pair of these excellent Cabelas' slippers. So, her prez was for action, and we both have one. And the slips are for jammies time, and we both have some! She's pretty fun!
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Tomboy you're right, you know your body. I won't go into my story but several symptoms were ignored. Mine should have been caught 2 years earlier at least.
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camillegal
Great to hear from you! We've missed you . Happy New Year!
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http://www.ewg.org/skindeep/?gclid=CNXumdeY_cICFWh...
This is a link that Specialk provided on another thread about different products we use and their safety. Thanks Specialk!!
I was really surprised about some of the products my family uses. Some of them showed close to a moderate risk under "cancer". That's scary! Do any of you have a deodorant recommendation? I've used Dove and Suave. Both of them are too high under the cancer risk for me to continue using them. I've tried Tom's but I didn't feel like it worked. At least the Aveeno lotion I use is rated a zero for cancer.
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