TRIPLE POSITIVE GROUP
Comments
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Not looking forward to the hot flashes with Tamox! My PS is going to match the right with the left once treatment is over so eventually, I'll have a smaller matched set. Just will have to be good at disguising the mist-match until then. When I look in the mirror, it looks like I'm leaning to the right ;-)
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Lago, I agree, that is incredibly irresponsible. I went to a support group locally and there was a woman there who had only a vague understanding of her diagnosis, but apparently the doctor she met with recommended a bilateral MX + chemo. On the other hand, she had a friend who was a naturopathic doctor, who said that she could get everything she needed at one of the local health food stores. Group rules were that you weren’t really supposed to really say, well what any of us on this thread would have wanted to say. Like, “Yes you can get everything you need at the health food store, but NOT IF YOU WANT TO LIVE!!!!” Except sweetly of course.
Sasha, welcome and sorry you have to be here. I think a lot of us would be very interested if you learn anything particularly useful from that nurse practitioner. I am definitely interested in complementary stuff, diet, supplements, etc. Just in addition to, not instead of …
Interesting article, and good catch Lee. That’s really interesting in light of soy and estrogen. It could suggest that the reason that Asian women (en masse) eat a lot of soy and have low bc rates isn’t because the soy is good for them, but because they lack a genetic predisposition to it. Perhaps tilts the balance into the “avoid soy” camp….
Other interesting articles ... will read later...
Should I be worried that I am on tamox and am NOT having hot flashes? I guess that's a question for MO, I know what y'all will say -- just grateful!
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cypher I'm on Anastrozole. I had some flashes on chemo (not too bad) and maybe some warm flashes initially on Anastrozole but they were so slight that I wasn't sure (or maybe just left over from chemo). I have none now. I don't even have the stiffness I had last year. Do have a little. I'm going to mention it when I see my onc in April but I'm not worried. I still have some minor stiffness in the morning. Some of us are just lucky too.
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Cypher: I don't have the flashes either (I'm on Arimidex) and actually my onc asked me last month how the hot flashes were and I said I don't have them and she seemed very surprised. Hoping that is not a bad sign. Like Lago, my stiffness seems to be much better now than in the beginning or I'm just getting used to it but I do have the bone pain which my onc says is so very normal. She suggested taking Aleve for it but most of the time I just deal with it especially since it isn't constant. We are all so different.
Welcome Sasha: So sorry that you have to be here but you'll get lots of support and friendship here.
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Important to remember that some ladies have no hot flashes when they go through menopause naturally either - I think not having flashs does not mean the drugs are not working!
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Question for those of you taking tamoxifen or an AI and having hot flashes: had you gone through menopause before starting tamox or the AI? I'm sure hoping for no hot flashes once I start on whichever the MO prescribes. I'm seeing him next week and presumably will start after I finish rads on 2/22. I finally quit having periods at age 57 (about 3 years ago) and had hardly any hot flashes during the process. I don't want them now!
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Hi to all of you,
I want to clarify that I have not yet begun to take Tamoxifen. My severe hot flashes are the result of the chemo sessions (6 in total, three with FEC, three with Taxotere and Herceptin given simultaneously). I begin taking Tamoxifen on Feb., 14. Chemo sent me into menopause. I was 49, perimenopausal, but the chemo did the trick. My MO said chemo-induced menopause causes severe hot flashes for the majority of women in my age/stage of life as there was no gradualness to it. We have also talked about hot flashes and Tamoxifen, and he said (a) many women do not experience them, and (b) there is no correlation between having them (or not having them) as indicating whether or not the Tamoxifen is working.
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I had a few hot flashes during menopause (early for me - my last period was when I was 43 years old) but for the most part I remember getting panic attacks. I don't recall ever waking up and being covered in perspiration. I do recall weird panic attacks which would often happen in public places, like restaurants. Many times I would have to just get up and go outside and walk around the block or parking lot.
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SpecialK: Is Dr. Cox your oncologist?
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PatinMN - I had gone through surgical menopause 10 years ago and had miserable hot flashes the whole time through diagnosis. They continued through treatment and the first year Femara and Arimidex. I have noticed recently that my flashes have diminished in number, but not intensity. That is OK, I will take what I can get! I think that if you have not had flashes after going through menopause naturally that will probably remain consistent on hormonal therapy. At least I hope so.
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Arlene - Dr. C. Cox is my breast surgeon, not oncologist.
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Fluffs hot flash standard...a bad one consists of a feeling that I eternally I am starting to warm up. I also feel panicky and have to have a drink and something to fan myself with. Then my arms and face turn beet red. I've had people ask me if I am having a heart attack. During this time, my face usually has sweat that can potentially roll down my face. Scalp is wet. Can't touch hair or it will go flat. Generally it takes ten to fifteen minutes to completely end. I even had the store manager of Macys ask me where I went and got a bad sunburn.
Sasha...if it makes you feel better, after researching round the clock, I interviewed three oncologists and went to each appt with four pages of questions and taped the answers.
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fluff, wow! Those sound awful.
I was barely perimenopausal, if that, when I started chemo. I am apparently menopausal now. I didn't have dramatic hot flashes or anything and my menopause is definitely chemo induced.
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Lago,
I used pure aloe after each tx than at night I would use Acquphor ..lobbed it on at night and I just looked like I had a suntan with a little redness to the collar bone..my RO always asked what I was using keek using because my skin looked great...no burning0 -
During chemo my periods stopped.
They came back after chemo. I noticed before they returned, and while on Tamox, that my hot flashes went away. Lack of estrogen causes hot flashes, I like to think of it as estrogen withdrawal.
I've read flashes are worse for women abruptly placed into menopause, and I believe it! I've also read that the more fat on the body, the less likely you will suffer from severe flashes. Fat stores estrogen and it is released into the body even if the ovaries are shut down, so a woman can gradually "step down" into the no estrogen field. So, essentially heavier women are supposed to have an "easier" time of it.
Anecdotally, the only women in real life I know who didn't really have flashes with menopause (natural) do have a significant amount of body fat. But I am thinking of one woman in particular who takes HRT because they were so bad after menopause..and she is obese. So my real life experience doesn't really bare this out one way or another
Interesting stuff though.
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As we are on the topic of hot flashes,mine have finally calmed down and are not as intense nether were when I first went o tamoxifen. Yay! But now I am schedule for surgery to remove my ovaries on 3/13. I really wanted to do the lupron shot and both MO and Gyn wanted total hysterectomy. I chose the in between as they couldn't really IMHO give a concrete answer why they thought that. How intense will the hot flashes be when this happens and will they taper off like with tamoxifen?
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My mom said she didn't have bad hot flashes but did get some. My sister had them for 2-3 years and pretty serious. From what you all describe my hot flashes on chemo seem like nothing. Just a little sweaty starting from the back of my head then I could feel the wave of heat down my body for several rounds. Then I would get real cold. After chemo no more. At the worst after chemo I had to take my light cardigan sweater off, lasted for 10 seconds. I was 49 during chemo and perimenopausal but still getting regular but lighter periods till chemo.
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swimmom - it is hard to say what will happen with hyst/ooph for you - mine was 12 years ago and the menopause symptoms were marked. You have been on Tamoxifen which does not suppress estrogen, but blocks it from estrogen receptors on the cells. By removing ovaries your major source of estrogen will be gone so you may experience some symptoms, including hot flashes. I recommend a couple of things as well - have a bone density test done and also a lipid panel to measure your cholesterol. Both of these things are affected by an ooph and you need a baseline measurement. I assume you will go on one of the AIs? You may see SEs from those drugs that you did not see from Tamoxifen, or you may make the transition smoothly - time will tell.
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Swimmom,
I had my ovaries out and am taking tamoxifen ..I have hot flashes all the time but Oncologists said I only have to be on it for 2 years and than switch to an AL..
But like Specialk said everyone is different how they will react..0 -
Specialk -Thanks for insight. I see my MO next week and I will ask about those tests and re ask if I will be on AI. I think she said I would stay on Tamoxifen for a few years and then switch. I am wondering if that is due to my age. I just turned 40.... Hopefully, if I get the intense hot flashes right after surgery they will calm down again. sherry-how was your recovery time when you had your ovaries removed?
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Hi all, haven't had a chance to catch up but just wanted to report in that the CT scan also came out clear. So I am officially 100% NED!
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I'm starting on Feb 25th with TCH. Taxotere, Carboplatin, Herceptin, 6 cycles every 3 weeks for 18 weeks. Herceptin first cycle day 1,8,15
Question: Especally the first time: Will I need my sister to come home with me after and for how long? What will I need when I get home? My husband doesn't get home till 8:30 ususally. But will if I need him.
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Cypher
So happy for you!
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Yay Cypher.
Shasha I would ask your onc but to be honest I think you will be fine just tired. It's a long day and even for the strongest it is a bit stressful. I known the next day I went to the gym and did 35 minutes on the elliptical and another 35 on the treadmill. The following day I went to the ACS to pick out a wig by bus. I also had a BMX 5 weeks prior with 10 nodes on one side, 4 on the other so I was healing from that. I was a bit spacey because my onc had my on Zyrtec the entire time as well as on emmend for another day I think. It took about a week for my to get used to Zyrtex. Emmend made my eyesight a bit blurry for a few days too.
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YAY cypher!!!!!!
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cypher - yay!
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Hooray Cypher!
Sasha: Agree, you should be just fine.
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Good luck Shasha!
awesome Cypher!!
Fluff...I am with you on the hotflashes. I went into chemopause almost 3 1/2 years ago. I sweat to where I have to change clothes. If I have flat ironed my hair to sleek out my unruly curls, the wet scalp frizzes the first few inches of hair. I look like a crazed clown with half fuzz/half straight and bright red face. Even bright lights can trigger one for me. One night I had such a bad one my husband woke up and started feeling around the bed, "What the heck happened here, did I pee myself?" Omg, I couldnt stop laughing.
Strangely, my hormones are changing again. I am 46 and it looks like my periods have started back up. My onc was going to switch me to an AI last year but after a hormonal panel didnt prove for certain I was in menopause, we opted to stay on tamox. I was hoping these darn hotflashes would settle down, but no such luck so far. I have an average BMI, maybe a little on the lower side...if that has anything to do with it. Who knows!!0 -
Great news, cypher!!
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My BMI is right in the middle of normal so I doubt that. I bet its because you are younger. Yes a few years makes a difference.
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