TRIPLE POSITIVE GROUP
Comments
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Hi Momma, just like yours my stiffness also started after chemo. I am 37 but when you see me get up from the sofa, I look more like 87
Hope we all see that age one day for real!0 -
ashla - good thing I was not drinking anything when I read your reference to my psycho chemo neighbor from my first TCH - I would have spit out my drink on my keyboard from laughing! Thanks for reminding me how funny that was! I did not see the hair helmet thing - I am going the route of lago and about to start the minoxidil.
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I hope no one is offended by this. It was on NPR!
I think this is hysterical . "Japanese Artist Indicted For 'Vagina Kayak".
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@lago, thank you sooo much for sharing that information
i am not post menopausal so it makes sense my MO put me on tamoxifen.any tips on dealing with hot flashes? they're slowly starting to get better but in 3 weeks i begin tamoxifen and i know they'll emerge even worse than they are now
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Runningcello, I started Tamoxifen on Halloween. For me, and I know everyone is different, it has been manageable. I usually have several a day, but they are over within a couple of minutes. It's not like I'm dripping sweat. It's more of an internal fire that comes and goes. It's a lot more tolerable than some of the other SEs we've been through.
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efcjax -- hope I do as well on Tamoxifen as you. (I will start Tamoxifen after I finish radiation, some time in the Spring.) I guess I'm less concerned about hot flashes than I am about psychological/emotional SEs. Hormone changes have often led to mood swings/depression for me. Any of that for you?
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But the hormones are still there with tamoxifen ...right? The receptors are just blocked. maybe I am mistaken...haven't looked in awhile.I will stay on tamoxifen 10 years probably, even though at this point I am menopausal. I was not when I started years ago.
Mood swings/depression...eh, maybe some? But not sure if I attribute that to my basic experience overall. its always abated by some sort of heart rate pumping exercise. If I feel a little low, I know I need to focus a bit more on veggies and moving.
The biggest thing I noticed, and it took me nearly a year to connect, was a knee injury not healing after surgery. I lived with tremendous knee pain and my surgeon jsut shrugged her shoulders, and the PT had no idea why it hurt...BUT IT DID!!!!! So instinctively I stopped tamoxifen for a month...and within a week, the pain was gloriously over. It's the little things folks! This Christmas I was filled with joy, literally, as I walked through the mall shopping. So happy to walk without pain! I went to my oncologist who said to me that tamox has a 2 month "coverage"...and he has seen what happened to me before. Sometimes you need a tamoxifen break to heal and reset so to speak.
Hot flashes are a way of life for me lol. I also take Feverfew now...its an herb I read about that diminishes tamoxifen resistance. I just started on it a few months ago, haven't really noticed anything with it.
Good luck Elaine!! You will be fine with it!
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runningcello my hot flashes were the most intense on chemo when I went through chemopause but never that bad. I never got sweaty. Now I notice certain things trigger them. My biggest is spicy food. Granted I do eat it but again my hot flashes are not so bad. I also hear alcohol and caffeine can also trigger them. Some MOs prescribe Eflexor too. Oh and you can wear these:
ElaineTherese if you are having psychological/emotional issues talk to your MO. If S/he won't address it then talk to your PCP. That's what I had to do. I waited too long to get this addressed.
Geewhiz you are correct. Tamoxifen blocks the estrogen (not sucks it out) but not from your entire body. That's why there is less issue with osteoporosis than there is with the AIs but some of the hormone imbalance is do to some going through chemopause.
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I started Tamoxifen Dec 17th. So far, I haven't really noticed any changes except for the warm flushes. Before starting, I would periodically get warm during the day/night. Nothing that was really bad. I would just need to take my sweatshirt or fleece off. Now the flushes are a little more intense. Still no episodes where sweat would start dripping off me but I feel warmer.
Can someone tell me how many times I'm going to lose my eyelashes? I was excited because I had managed to keep half my eyebrows and my eyelashes had grown back by the end of chemo. Now I have very few eyebrow hairs and eyelashes.
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Mommato3,
I was on the same chemo regimen as you, and I'm almost a month PFC (last chemo was December 3). I'm still missing my eyebrows and eyelashes. Ugh. I draw in my eyebrows every day (don't really match), and if I'm going to work/to a social event, I'll wear false eyelashes (never really match either). Sorry to say, but I miss them more than my hair (was always on the thin and lanky side).
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Ah eyelashes... That was the reason for the only time I ever cried in front of my MO. For me... It was the lack of eyelashes that I felt made me look sick. I was so thrilled when I finally had enough to wear mascara.. Then a few weeks later... Just as I finished rads , I was getting ready for my MO visit and they were gone ...again.. Cried all the way to appt .
All the hair on our bodies has cycles. For lashes it is between 3 & 4 mos.. More or less. They are not usually on the same cycle so you're constantly losing a few at a time. Because of chemo , they're on the same cycle. It may take years for them to normalize.
I have a prescription for Latissse now and it's worth every penny
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Oh Ashla, that's not what I wanted to hear!! I feel the same as you and Elaine. I could handle losing my hair. It's the lack of eyebrows and eyelashes that has bothered me. I was lightly penciling in my eyebrows. Mostly because I had most of them and they have always been blonde. For eyelashes, I would make my eyeliner a little thicker. I've mostly been wearing my glasses since chemo started so I'm not sure it was as noticeable. But now...who wouldn't noticed!?! Bummer!!
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Mommato3
Don't be discouraged ... Just patient
Think my lashes would have recovered a bit by now but with Latisse I have the most beautiful, long eyelashes!! they touch my sunglass lens! ! Would never have done it w/o a chemo nudge
Many get their lashes back relatively quickly . I seem to be challenged in all the hair issues.
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I've been using Rapid Lash. I think it's helping my current lashes look longer, though I stil have no signs of noew lash growth.
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Hello Ladies, I am new to this group but have been reading as many of the posts that I can. The info has been great & the sharing of personal experiences very encouraging. Every SE that I get from Arimidex isn't as bewildering now that I see most of you can relate & share. It'll take me awhile to get the abbreviations down.
My concern as of late has been that my diagnosis seemed discouraging at the time. The surgeon removed 50 nodes and 47 were positive. I've been told the +++ is not so bad now that we are treated with chemicals during chemo that address the HER2+. The Arimidex is supposed to help with the estrogen. I'm 61 and well past menopause.
My question is has anyone else had so many positive nodes? I've had nurses tell me that they are surprised at the large number. Others have told me it would be naive to think that the cancer won't come back.
Any thoughts?
Thanks so much.
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Elainetherese, haven't noticed any major changes in my mental state, but like geewhiz, lots of knee pain which I never had prior to chemo. As for brows and lashes, I'm about 4-1/2 months PFC and have seen more growth for both, but still not where they used to be. Between eyebrow pencil and mascara, sometimes fake lashes and my wig, I look ok. My hair on my head is growing pretty well, just a lot slower than I'd hoped. Taking biotin, but still only maybe an inch long.
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Maki-Kohlrabi I am going to a New Year's party hosted by a women who had an 11.5 cm tumor and a ton of nodes too. I believe she is the same stage but not HER2+. She was a bit younger than you at diagnosis but postmenopausal. She was diagnosed before me…and she is doing awesome and still NED! While your risk might be higher it isn't an automatic you will get mets. Actually it seems that statistically the odds might be in your favor to be alive and NED in the next 10 years if you continue to do all the treatment. The first 2-3 years are your highest risk for recurrence. Then it continues to drop every year you are alive.
Who are these others. I would tell them to F*ck off. What a nasty thing to say. What does your oncologist say? I mean mine says I'm high risk for recurrence due to the size of my tumor IF I don't continue with treatment.
You just need to be diligent. ILC can be tricky so be sure to ask your MO what you should be watching out for.
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thank you all so much for insight. i was given a shot of zoladex during chemo that put me in a medically induced menopause that gave me the worst hot flashes... i still get the hot flashes now and i still have not gotten back my period, last treatment sept 30. basically, they are the suckiest things ever, especially when its bed time because i rarely can get comfortable. luckily they are not as bad as they were in the beginning ... i just hope tamoxifen gives me warm flashes instead of hot, haha.
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Windgirl-I have the leg stiffness too. I started jogging and/or walking after I was diagnosed and continued the entire time that I was on the TCHP, but I didn't notice the tightness until after the 5th cycle. I never noticed it while I was walking or jogging but my muscles were never in a stretched position with that either. I did notice it though at work. I work as a physical therapist and was squatting down one day to swing away some wheelchair leg rests and felt like I had just started training for a marathon in my quads. The pain was so bad, I had to sit on the floor sideways to complete my task. After the 6th cycle, I felt the stiffness in my lower leg muscles too. The lower leg muscles have resolved and the quad muscles are better, but I have been stretching them every night. I still can't sit on my feet initially but can by the end of my stretching. When it first started, I couldn't get to sitting even after stretching. I looked for this side effect and couldn't find anyone commenting on it until now. I will be six weeks s/p my last TCHP treatment this Thursday-still getting the Herceptin every 3 weeks.0 -
Lago - Thanks for your reply. My best to your friend for continued NED. The 1st person to mention that I definitely will have recurrence was the visiting nurse at home following surgery. Several others were people in the waiting room with their family members about to undergo chemo. The nurse, as a professional, probably shouldn't have told me that. The others were just making dumb conversation.
My oncologist told me that she planned for aggressive chemo & radiation treatments (that I finished on October 31st.) due to the nature of my cancer cells. I had 6 1/2 weeks radiation which included the clavicle & neck. Then, the Arimidex which was highly stressed. I began that on Nov.7th. She told me that they are doing their best to see that my cancer does not return.
The radiologist told me that there was a positive margin on my chest wall after surgery that they wanted to be sure & get. I had some burning, peeling & oozing but worth it if it got those cells zapped.
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Maki-Kohlrabi radiation is highly effective in killing those local cells. I don't know what's a matter with that nurse. Does she have some kind of crystal ball? I know a woman in my building was diagnosed just after me. She was also triple positive, had several tumors and many nodes. I think she is a stage IIIB. Like me she is still NED and doing fine. She also did radiation. We have the same team of doctors. Even the woman who started this thread is stage III. She assumed it would come back. She is doing fine too. I see her post on facebook daily.
The treatments are much more effective for us HER2+ gals.
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hi Maki,
My aunt had BC 25 years ago, she had both ductal and lobular at the same time and in both breasts as well as nodes. She also was hormone negative and they did not test for her status back then neither did they have herceptin. She never had a recurrence and has been living a healthy life. Recurrence is not a certainty. She did take care of her body well after her diagnosis for all these years but who knows if that had any effect or not, there's still no real data on this, but I guess just common sense.
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Hello Maki-Kohlrabi!
Nice to meet you:) I agree completely with Lago. I am certainly not an expert but I read just about everything I can get my hands on regarding medicine a with an emphasis on breast cancer.
Pretty much all of what we call medicine is based on educated guessing. There is very little certainty on much of it. That is why very few doctors use the word " cure" with breast cancer. They really do not know.
Human nature is such that despite all kinds of positive statements, it is the negative ones that we remember clearly . Why a medical professional would say such a thing to you is totally incomprehensible. The TRUTH is that NOONE knows whether you or any of us will recur. NO ONE.
This is not easy to do... And certainly not easy while in active treatment but I believe this statement to be true. Sadly, We humans need constant reminders of this.
"The secret of health is not to mourn the past or worry about the future, but to live in the present moment wisely."
- Buddha
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Ashla - very eloquent and true statement, focusing on no reoccurrence makes us endure this barbaric treatment, otherwise removing it and going no further would be enough. The final goal is no reoccurrence and no mets. It was "luck" that we got Cancer, and it will be "luck" that it doesn't come back. We have to do everything we can to make it not come back. No One knows our futures, so live for today and worry about tomorrow, tomorrow. As long as I know I did everything to keep it from returning, I can be very hopeful for no further Cancer
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Rose0766
Touché!
See you are in the throes of treatment. Hope it is better than you expected it to be:)
Best wishes to you and all the great women in this forum for a happy and healthy New Year!
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Windgirl, Rose 0766, Ashla - Hello to all of you. Thanks for the input. Part of me just worries, but it's not constant. I feel pretty good basically and know that I am fortunate in that respect. I've been told that I'm generally pretty lucky so I should just go with that thought. I have family & friends researching and helping me with healthy foods and have been very supportive. Thanks for the reminder.
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windgirl- I had the exact same burning muscles for the slightest exertion all during chemo treatment months and now that has stopped and I have the same joint stiffness you describe when changing positions or especially after getting out of bed. Almost like my muscles are atrophied or the tendons are shorter.
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Ive been using mens minoxodil and Latisse for years but stopped during chemo because I felt it would be a waste of money. Regret that. Im hoping my lashes wont all let go at the same time again. Its been about 3 months post TCH and just lost 2 lower lashes leaving a bare spot. Hope its not a bad sign...
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Blownaway, First, congrats on making it through treatment!
For me, the hardest part of hair loss was how LONG it took to grow back. I wore a wig for 9 months after chemo ended. Every week if every day I'd check to see if it had grown and it was soooo sloowww. I ditched the wig last winter even though it was short and wore a hat often so people really didn't see my hair till spring. Then they all "loved" it whether or not they had known about my diagnosis. Early on I did have my very short hair colored because I couldn't stand the very dark color in addition to the shortness. Now it's been a year since I abandoned the wig and my hair is a "normal" length-- I'm so happy- and it's thicker than it's ever been. As far as lashes, they're finally stabilized- it took a while- every so often I'd feel the itching feeling and there they'd go again.
Your hair will grow too. It's just rough that it takes so long after all we've been through. Hugs!
Stephanie
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Question about chemopause/menopause: I am 47 years old and was still regularly getting my period until I started neoadjuvant chemo in July. I got my period again two times, but after my third infusion of AC, I stopped getting my period. I am now one month PFC, and I haven't resumed my periods. I have, however, begun to feel very warm, every now and then. But, I'm not sure whether those count as hot flashes. I feel warm enough to take off my sweater and sometimes my socks. I get a little flushed. But, I'm not dripping with sweat or anything like that. Is that a hot flash? or a warm flush at the very least? Can chemo put women into real menopause? If so, does that mean that I can consider a wide range of hormonal blockers? Or, will I most likely start with Tamoxifen, as I assumed I would?
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