TRIPLE POSITIVE GROUP
Comments
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AA,
Since we are now living longer after BC tx....the consequences of tx should def. be weighed imo but most especially by early stagers.. I do think some women come into this believing...well, I'll be the one that stays fit and doesn't have any injuries, etc. Actually probably most of us *hope* so....
It wouldn't have changed anything for me except maybe the Ooph...but probably not. Even with the DHEA sex is still not as pleasant as it used to be...and frankly I have no interest. On the one hand, it sure has freed up my mind to think about other things..lol. But on the other hand, well, I am beginning to understand what you meant long ago when you talked about it taking something from you.
I've talked with friends who are post-meno naturally and from chemo, and apparently their ovaries still produce enough estrogen to make sex enjoyable with some lube....I dunno.
It wasn't a real choice for me since my periods came back with such a vengance and I couldn't be certain Tamix worked....
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Question...
Is it the case that most her2 pos bc ers are negative for estrogen and progesterone? I remember asking my bs ' is it good that I'm er pos and he said" it sure is"! I was looking back at certain basic info recently and it said her2 pos breast cancers tend to be negative for estrogen and progesterone and high grade.0 -
PBrain - I hope you were able to 'let it go' and sleep last night. I'm glad that you are proud of yourself and of everything you have made it through this year, you are so much more than a body. You are right to emphasize who you are inside, something that cancer and it's treatment can't take away. If and when you come to the point that you are ready to tackle any extra weight, make sure you are doing it for you and no one else and that the reason you are doing it is because you know you deserve to take extra good care of yourself
Tonlee - your job sounds very rewarding, sounds like it is a great fit for you. I agree re: back pain
Ashla - not sure whether ER/PR -, HER2 positive is more common.
Cypher - hoping you have received you biopsy results by now, hope you are able to update us soon. Thinking of you0 -
ladieesnapps I went from "We thought we saw something in April 2006,Nah it's nothing to 6.5cm tumor in April 2010… Just 4 years! HER2+ are fast growers!
Tonlee I have seen several documentaries on the sex trade include some in this country. Scary. I remember this one gal who was rescued (her brother spotted her) saying that she was on the beach and there was one of her rapists. The reason why none of these people could be prosecuted was because they had her so high on drugs her testimony won't hold up in court!
BTW I asked my onc last time about heart issues 5 years after treatment and she said she wasn't familiar with it (with the TCH combo).
Ashla from what I see it's about 50/50 as HER2+ being positive or not for hormone recepters… but a larger majority of the triple positive seem to be low. I'm only 30% ER+ and 5% PR+.
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Hi all...it's been a bit! I was only 11%pr and pretty low er+. cant remember how much and not close to my path report.
Tonlee...nice to hear from you. Your exercise program is motivating me again. I agree with everything you said and i am fairly similar...especially in being accident prone.
Two weeks ago, I was walking up the employee stairwell to Macys, got to the top step, tripped, and did a massive body plant, crunching my knee into the edge of the top step. As I sat up, my first thought was to check my foobs, to make sure they were ok, lol, then to realize how bad my knee hurt. The pain in walking has gone away, but it make a slight catch when I walk. Had an xray, no fracture, but they think there is some fluid under my knee, and it hurts when I bend it. They said only an mri will show if there is a tear.
We leave for an Alaskan cruise in two weeks, so I am not doing anything until after that. Im hoping it will get better and I won't need knee surgery, as I just learned I really should have surgery on my big toe, which I had resigned myself to. I have something called Hallus Rigidus, where my toe doesnt flex.
On weight, I had started losing weight before diagnosis, then diagnosis sent me into a panic disorder where I was losing a pound a day. Lost a total of 30 pounds. Kept it off until suddenly last October i started gaining. I have put on fifteen pounds. I will admit that my diet hasn't been as good (I too love sweets) but I am trying to get back on track. My knee does not help things. I had forgotten how hard it is when working more also. Too easy to cheat. And the muscle tone goes quickly.
I am working on it and determined to get it back off.
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Oh Fluff of all times to hurt u'r knee (not that there's a good time) but I mean with the cruise coming up. Oh u'll have a beautiful time with georgeous scenery, U'r knee better get better soon, are u wrapping it or something?
Just take care of it and enjoy.
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Thank you guys a THOUSAND TIMES~and TonLee so good to see you again! I agree that I don't know my body anymore. I have cankles. I come from a family of women with beautiful legs and I swam like a fish every day until I turned 41 and moved to North Carolina. I know that women who swim have beautiful legs, but now, poof...not so much for me.
I'm having issues with allergies now too, and was even prescribed epi pens last week because I have facial angioedema out of nowhere and I have no idea why. It seems to get worse with each episode, so now I travel with these pens and always have benadryl in case it starts creeping down my throat and closes my airway. But before this damn cancer, I never even took a claritin or sneezed at rag weed. WTF? I could roll around in pollen naked and not a thing would happen. Now my palms itch every day and my lips are chapped from swelling.
Ahh, the beauty of cancer. I'm going to continue to stay positive though. My Ma and I talked a lot today. She just wants me to be me, thinner, no moon face, no cankles, but I told her I just can't promise that. I honestly don't know what the future holds. I will see what each week and month brings and I'm so much in agreement with Alaskan Angel that maybe we early stage gals do too much????
Yins are so sweet to give me your thoughts and support because i don't think anyone can understand until they too wake up from chemo and find a totally different body and brain. I'll just plug along and be kind to myself.
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Oh, and my path report from biopsy says highly ER/PR positive--I was 89 and 94 percent.
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Pbrain, I can't believe your mother laid that on you. She should be ashamed of herself. I so sorry this happened.
It took me a long time to start feeling better and I feel good now. Not like I was before but I can live with this and it isn't so bad...after all, I am alive. So just let your recovery progress at its own pace. Several gals offered some good suggestions and you will probably feel well enough to begin to try some. Take care and remember you are a beautiful person.
Liz
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Pbrain, your mom might want you to be thinner without cancles, but I want her to be more sensitive! She didn't say I want you healthy but I want you to LOOK good. I am sorry. Take a deep breath, and GO ON LIVING. Do it your way, but keep doing it. She'll probably realize some day that is what she said, and be sorry she hurt you. Maybe she just can't say sorry you almost died, and its easier to tell you what she wants you to do. You are loved, sometimes people just don't show it well. Much love.
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Pbrain
"Don't try to pretend your gibes and judgments of the overweight people in your life are for their own good. Florida researchers have evidence that discriminating against fat people only makes them fatter."
http://www.npr.org/blogs/health/2013/07/26/205766456/hating-on-fat-people-just-makes-them-fatter0 -
@Pbrain..I am overweight also but Idont have anyone telling me I needto lose the weight. Its hard enough w/o that. I lost 42 lbs in a month when I was diagnosed. I still have some to lose. I was doing ok in that effort until Arimidex. Seems like Im hungry all the time. I know the struggle and I think it would be alot harder if someone was reminding me if it. I know what I need to do and thats all that matters. I was terrified to eat anything for a while because I was ER+. All I could think about was what food had hormones in it. That wasnt healthy either. We will get there in our own time. Dont let it get you down. Moms generally mean well even if it doesnt seem so sometimes. They worry, and out of worry they say things that would bebetter kept to themselves.
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Well PBrain, u opened up a new topic. When u rolled around naked in all kinds of pollen. Quite interesting that u knew that--First hand I guess. /but I do understand what was before is not now. Boy yea. LOL
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PBrain, can't believe how insensitive your family were to you and how they hurt you. I came from a similar family in which my parents were always elegant and slender and did not suffer from food issues as I did when I hit my 40's. Guess they just don't realize what a wonderful woman you are and how much joy you have brought to those of us who read your witty and informative posts. Our families have tremendous power to hurt us like no one else. We are so glad that you can come here to share your pain. Really, no one understands our journey unless they have taken it.
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Weight like fluffqueen I had lost weight before diagnosis and then a bit more once diagnosis due to nervous energy. I got down to 126 right after surgery! (129 before). On chemo I only gained water weight but at one point I was so bloated I was up to 142. After chemo I eventually went back down to 129 (but note my larger implants are almost 2lbs more than my old real boobs). Then I gradually crawled up again this past year+ I can't get down below 137-136. Been as high as 139. I think it's that middle age weight. I know it's because as we age our metabolism slows and the lack of estrogen is now making things settle in the middle. My doctors don't think I have a weight problem. I'm 5'6".
Injury. Yeah I did that too but I've always had these black and blues and not know where they come from. I do have an issue with my right palm/thumb. I thought it was carpel tunnel or bursitis. Palm was swollen at the beginning of the week. Hurt like hell. Stopped using it. Now just my inner palm hurts but a lot less. I'm assuming I injured it but I don't remember when/how.
PBrain my legs have never been the same after BMX. Water retention and they just got bigger. I can tell bases on how my jeans fit in my lower leg. If at my weight I have fat knees. I tend to wear pants a lot or those long dresses. I will wear shorts but still disappointed I don't have my old legs back. My upper legs are a bit bumpy now too. I think this too is part of chemo/menopause.
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I was er 98%, pr 67%, and her2 12.9 (whatever that means). Luckily, my tumor was stage one!
Just two chemo rounds left (then rads, more herceptin, and AIs). I've sailed through chemo relatively well (sans hair!)--very few SEs, lost 40lbs before dx, and my skin looks great. So not looking forward to undoing all that (weight gain, hot flashes AGAIN, mustache!) with AIs. I had pretty significant menopause issues--significant weight gain, hot flashes all the time, facial hair, depression. Does anyone know if there is a correlation between how one fared through menopause and how one reacts to AIs?
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Karenrm I would think not as bad if you are talking about hot flashes. I don't know this for sure but it seems the gals who were forced into menopause very early had a worse time. I was in perimenopause. I did have hot flashes on chemo at night but not too bad. When I started Anastrozole they actually got better to the point where they are almost gone or gone. They are so minor that I don't know if I'm actually hot or it's a flash. I don't have those waves of heat that I had on chemo.
As far as t he mustache. Always had one that I bleached. Got used to not haveing one on chemo so now I use this:
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thanks. i'll try it out.
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KarenM
I would say there is no correlation between how I did through menopause and how I'm reacting to AI's. My estrogen was 65% at dx! I tell my doctors I failed menopause. Had to go back and do it again with gusto!
The first time around with menopause wasn't bad. About 10 lbs of weight gain but I was very slim before. Some sleep issues but not bad. Hot flashes and night sweats but not that bad. Just learned to wear lihter clothing always.
Anastrozole has started annoying me. Alot. Hair loss and eyelash loss after 9 mos. Sleep problems. I've actually slimmed down and firmed up but it has taken a yeomen's effort. never worked so hard to lose a few pounds and gain a bit of muscle.0 -
I am so confused about the ER/PR numbers. I am 100% ER & PR. Is that good or bad? Oh I have so many questions for my MO. I did not ask too many questions because honestly I was afraid of the answers. Now that I am almost 2 yrs into this I have a big list of question for my MO. I have not seen her since my last herceptin in February. I am scheduled to see her August 28th.. I also wonder why I only have to have a mammo once a year and to see my MO every 6 months. Everyone else seems to see their doctors more frequently.. A positive note is that I feel great..My weight at the beginning of this 116, during chemo my weight went up to 128, I have worked very hard to get it back down,now I weight 118 to 120- -I am 5 ft 4 in..
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karenrm - I use Olay Smooth Finish Hair Remover Duo for mustache removal - it works great and only takes 10 minutes. I tried the little shaver thing but it hurt too much because it kept grabbing the hairs instead of cutting them off!
I had ER+ at 95% and lower, but still + PR. Interestingly, I have been going to appointments with a newly diagnosed former co-worker who is single, with no family in the area. The onc (not mine, a different one) commented that depending on the post-op pathology and nodal status, combined with that low PR, might lead her to suggest chemo. Thankfully, no positive nodes, very small mass, doesn't look like she needs chemo and qualifies for 5-day radiation - but needs a re-excision. I was glad I was with her at that post-op appt., because she passed out when they told her she needed another surgery!
My SE from Femara, then Arimidex, then Femara again have remained consistent with surgical menopause SE, other than the joint pain. I recently switched back to Femara again because of its statistical edge over Arimidex, mainly because I eventually had the same level of joint pain and additional trigger joints.
Pbrain - sorry about the insensitivity from the family - I sometimes wonder why family members think they can say things to us that they would never say to a stranger! The person you are has nothing to do with how you look on the outside - none of us can see you, or how you look, but we all love who you are!
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Eileenohio.l
Don't think anyone really knows about the er/ pr numbers except that estrogen fuels our cancers and there are meds to stop estrogen production in our ovaries ...tamoxifen and AI's to prevent it from being made in other ways. We have extra weapons that Er neg women don't.
You were stage one so your mo probably feels you don't need such frequent surveillance.
Great on the weight ! We can throw the overweight risk factor out the window for you.0 -
eileen - I saw my MO every 3 months after chemo was completed for the remainder of that year, but have now moved to every 6 months. I see the BS annually, but at my last appt. only saw one of his assistant docs - an M.D. that works with him. I see the PS depending on what is currently going on with recon and any revisions - by the time I see him next it will have been 6 months. My last PAP and well-woman check was prior to exchange in Feb. of 2012 and she said no more due to fragile tissue - I had a hyst/ooph on 2001 and have had no abnormal test results so she cut me loose on that.
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Thanks Ashla & SpecialK.. I am thankful that I am doing so well..--I saw my PCP in May for routine check up -all ok so I do not have to see her again until May 2014 unless something comes up. Sometimes I feel guilty that I am doing so well while others much younger then me have so many issues. I try to eat right and exercise at least a little everyday.I count cleaning house and trimming my bushes as exercise. lol
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Eileenohio the year following treatment I would see someone every 6 months. Meaning I would see my onc in April and my BS in October. This will continue till I am 5 years out. Then I will see someone once a year. Most people don't see their BS any more so if I didn't see my BS it would be onc every 6 months then at the 5 year mark once a year. 100% ER positive… sounds like the AI will be a good gun to starve your cancer if there is anything left behind.
SpecialK That trimmer is not a shaver. It does not pull and therefor doesn't hurt.
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lago - the one I bought at Target was a facial hair trimmer, but I managed to get a facial hair stuck in it and it hurt, so I switched to the cream remover - safer for me, lol! Knowing me, it was operator error!
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Special I think it was the trimmer not the operator. I have no idea how one would get the hair caught in the one I use.
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Yins and your facial hair crack me up! I was so thrilled not to have it during chemo...but it's back...argh hh
Thanks for the thoughts, support and wonderful compliments! :-). I come from a very loving and supportive family who have believed in me and supported me during so many risks and tribulations including med school when I returned home with nowhere to live while I plugged through (at 32). But the one thing I always struggled with was my parent's disdain for overweight people. It always made me kind of sad when they would judge because I would always think "um people, you have a daughter who is struggling with this..." My sibs have always been and still are thin.
But ironically I was the athlete of the family even more so than my Motörhead brother who was a state tennis champion. I played it all. Lacrosse tennis swimming diving badminton (yes, oddly enough amongst the Philadelphia wealthy that is a competitive sport). And yet I've had to battle weight since high school
I saw a meme that said "I wish I was as fat as the first time I thought I was fat now". Har! That spoke to me because my mom and dad thought I was fat at 135 in college. I still wore a size 8 but I wasn't skinny
Sigh
So yesterday (27th) was my birthday. My Ma took my sister and I to downtown Philly to see Wicked which was so fabulous and then we came home and family came over and we sat around the fire pit and had cake and wine and I told God I am happy to see another year even if I am on Arimidex and close to 200 lbs :-). !!!0 -
Happy birthday Pbrain!
Nicky0 -
Thanks Nicky! You're such a sweetheart!
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