TRIPLE POSITIVE GROUP
Comments
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PBrain - I'm sorry to hear you landed in the hospital!
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Sorry Pbrain that your not feeling well. I am thinking of you(((( Hugs))))
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Oh, pbrain,so sorry you are in the hospital. It's not fun. Did they give you the nuelasta shot? That keeps up your white count. You could ask your MO why he's changing the tx, rather than adjusting the dose. I am sure he has a reason, but more info never hurts. Feel better real soon. Much love.
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Hi soltantio -
I don't know.
It seems like vitamin d is a link - meaning, low levels. It seems like there might be an insomnia/low levels of melatonin link...
When I was young I would have a lot of fluid build-up before periods and my gynecologist would call in a few doses of provera or whatever it was called back then - just to get my periods started. Who knows...
All that aside, how are you doing? Have you been swimming?
I'm watching online episodes of Conspiracy Theory (the Jesse Ventura show). Ha ha. I'm not really watching - just listening... silly nonsense that keeps my mind off of breast cancer while I look up other stuff.
Two drains came out today. Two more left to go. I was surprised at how much drain is under the skin. No wonder they're so damn uncomfortable! If it wasn't for the drains this surgery wouldn't be that bad! (IMHO)
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Pbrain if you click on my name and see my profile you'll see my full treatment. I did 6X of Taxotere and Carboplatin as well as 17 Herceptin. Hope they get you out of the hospital soon. I could never get any sleep in there. Seemed every time there was a shift change they had to come in to introduce themselves even if it was 2am!
LeeA no one likes the drains. I can't wait till your free.
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Pbrain, I am so sorry you wound up in the hospital! I do hope your MO can find a way to help you feel better and raise your white counts. (((hugs)))
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PBrain - I ended up in the hospital for five days around the same time of treatment as you did. I actually felt safe and cared for there, so it was all right. The staff was great. I had AC x4 and then Taxol/Herceptin x 12. The AC was brutal and I did okay for the first few of TH. The stomach issues were far easier on the Taxol, but it was no walk in the park. I had a lot of muscle and bone pain which got worse with each treatment. I did not breeze through any of this, except I kept my nails.
Add me to the list of people with Herceptin heart issues. I am 49 and had to be taken off after my first Herceptin-only dose. So...I had 12 weekly plus the one. My EF dropped from 61% to 53%. I am now on an ace inhibitor and will be monitored by a cardiologist. I will be rescanned Dec. 6. The heart issues are real. I have always pretty low blood pressure, so it's interesting being on these meds. I have to watch being light-headed.
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Pbrain- ugg! Sorry this happened. I'm curious too- did you get the Nuelastra injection?
Lee- I noticed about 2 years before my BC, my periods were way heavier and I was more moody, or nauseous right before. I brought it up to my GP and she seemed to think it was just me entering my 40's. The age card. But it was around that time that my breasts became more cystic and she had me being followed by the breast clinic. (This is all within the VA system). I've always had fibrous, dense breasts, but not painful, cystic ones. Also, a year before my BC, I was also seeing counselor because my moods were off. I was getting panic attacks, and feeling a little down. But I attributed it to working long hours and very few days off. I attributed it to the stress of that. My Vitamin B12 was on lower end. I don't know about vitamin D though.0 -
TonLee - Have you considered going on letrozole since you had your ovaries out?
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All the women in my family have cystic dense breasts. I think my sister even had on removed once… but I'm the only one with breast cancer.
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omaz,
Yes, I tried it....but HATED it. Whenever I injured myself, I couldn't seem to heal up...in the joints mostly. It was so bad in my lower spine I couldn't bend over to empty the dishwasher for weeks!
Two weeks off of it and I was back to normal...or Tamox normal...which means sore, but moveable!
My Onc has no problem keeping me on Tamox...also, I monitor my uterus every year at pap time and s'all good
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TonLee - Thanks. I seem to be tolerating the tam ok so far too.
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Oh Pbrain, I'm so sorry u'r going thru this--it's crap--before surgery I had taxol and herceptin every week for 4 months--I think it's easier taking it everyweek. Is that what the Dr. is changing? u know I don't know much about things and I know after surgery I was on the one they call red devil, and a couple of others, but again it was always weekly and I think it was better for me, I think u get less dosage then ???? so even if it's not pleadant it's probably better than when u wait. But I think being in the hospital u'r really getting raken care of with the blood tests so they can keep on it. And another thing going weekly they did blood work everyweek so as soon as things were off I got treated for it--that helped in the scheme of things--well for me. This is all shitty I know but I'm glad u'r being well taken care of and I'm sure this blindsided u, (((Pbrain))) hugs to u.
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Wow LeeA u really do u'e homework--it's amazing u'r on top of so much--It's wonderful for u and the rest of the board. Lago and u are the people to go to. She's amazing.
I had a complete hysterectomy about 10 years before bc cuz I did have cancer cells (they said) but removing everthing was the only option I really had. Bit after I necer took estrogen--the Dr. said she wasn't in favor of it because of why I got a hyst. or something like that and I never thought to ask or do anything so I said OK. So I never took it. Well that's how I remember it--but I know I never took estrogen.
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pbrain - oh so sorry to hear you are in the hospital! Hope you are being well cared for and sending positive energy for those whites to come up! Please keep us posted when you are able - hugs!
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Pbrain I have to write when I think of it otherwise it's gone from my head. When i'r better remind me to tell u where to order the no rinse Shmpoo from. When u don't feel like washing it. I still use it anf love it. I know u'r not in the mood to know right now, but I just came acroos it and thought of u. so if I tell u then u'll remind me. Just get u'r butt home and feel better.
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Pbrain,
I was in the hospital for five days after my first chemo. Neutropenic. Sucked bad.
Hope you are doing better.
After that, I got the Neulasta shot and never had to be in the hospital again.
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MsTori - I've been reading through the archives of this thread (up to page 128 - thank goodness it's more interesting/informative than War and Peace
). Anyway, at one point there's a discussion about vitamin D levels and several of the women mentioned having low levels of D (or maybe that conversation has been more recent?). Anyway, I'm going to ask to have my levels checked the next time there's a blood draw (I take 2000-4000 IU daily of D3). Also, interesting about the B12. My mom, who had her last period at age 37, had low B12 levels several years ago and she went to a neurologist for B12 injections. I'm not sure if she had fibrocystic/dense breasts. She has always been smaller chested than I was and she now has severe arthritis pain - especially in her legs; however, I've read that heavy smoking can cause leg pain. I won't mince words here - I think she's a Vicodin addict and she refuses to go the doctor but he still continues to prescribe those pills and her pharmacy still delivers them to her so my psychiatrist says I should try not to worry about it if it makes her happy - so be it, etc.
Re: breast cysts - I was called back in 2003 for a breast cyst at 12:00 They found another one at 3:00. As an aside, my tumor was at 2:00 (eta: same breast - left - righty has always been better behaved).
lago - I'm hoping these last two drains will come out Tuesday but the output level has definitely increased since yesterday's removal so I'm sure it will depend on that. I guess they're picking up the slack. I'm sure I'll do a low-energy version of a happy dance when I see them dropped into the examining room trash can!
camillegal - I'm curious about several subjects and sometimes it can be to my detriment. In retrospect, I wish I had been more attentive to having mammograms for all the years I didn't so I guess I have a habit of not being curious about the right things.
PBrain - I hope you're feeling better today!
Ozam - we went to Target last night and I bought one of the tank tops. You and TonLee are right - that particular brand is so soft! I'm going to order the black and white online (there were hardly any left in any color so they must really be popular).
My husband's not much for retail expeditions but he was a pretty good sport about it all and even went back to the dressing room with me to try one on for size - which wasn't easy but we got it done.
He's been carrying my purse (at his insistence - not mine!) and he now calls it "our purse." Before we went on vacation I bought a purse that was totally out of character for me but I wanted something I could put my iPad in without carrying another carry-on bag and the choices were limited - so, "our purse" is black and white snakeskin with a wild tropical print interior.
I'll be so happy when I can drive again! Dr. H (BS) says "would you want to be driving along next to someone in your condition?" Little does he know, guilt trips always work with me. ALWAYS!
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soltantio - glad to hear you got some swimming in. Re: your weight gain, maybe it's steroid related. In the archives (lol - don't slap me) tonlee discusses steroid weight gain. I think some of the others do as well. Or maybe that was herceptin thighs...
I'm curious about the herceptin thigh phenomenon so the day before my surgery I did something I haven't done in years - I took measurements of my thighs, arms, waist, hips, calves and even my neck - lol! Oh, and I measured my breasts as well but the sad thing is - I wasn't even sure where to measure them because over the years they had become so ptotic that my old measuring place didn't seem right.
I also took "night before surgery" photos of my breasts. Not because they were so great - they weren't, in fact they were pretty pathetic, but because I wanted something to eventually compare them to after the new set eventually goes in.
I had the strangest dream yesterday afternoon during one of my very deep sleep naps. In the dream I was looking in the mirror and had, for lack of a better word, a uniboob (kind of like a unibrow). I thought "this won't do" so I reached down and rearranged all of it like Playdough.
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Lee I have have the night before surgery boob photos too. Mine where actually very perky but very small. when the tissue is that dense, no kids and small gravity has little effect on them. I gots big girl ones now ( -•- )( -•- )
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((((((((((((((((((((((((Pbrain))))))))))))))))))))))) - hope they get you better really quickly
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The breast surgeon just called with the pathology report.
One of the three nodes - which showed clear during surgery was positive with a 1mm micromet (?) so I'll have to go back in for more surgery. My first appointment with the oncologist is Monday and I'm going back to the breast surgeon on Tuesday.
The right breast was clear - as it had shown all the way through all of this.
He says I'm still a stage 2 and the tumor itself was 2.5 centimeters with clean/clear margins.
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Lee- really!? Hercepton thighs? Mine are big enough already! I am maintaining thus far. As long as I stop having these sweet cravings. And re breast cysts.....see, my misbehaving one was on the left, the right was better, but had some calcifications. If I had only known then that costs and density were a risk factor. Can't change the past, but sure can educate the future.
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Lee- mmmmm, think about this one. Talk to the ladies here first. My final path came back with micromets in 1/2 sentinel nodes. I opted for axillary node dissection and they took levels 1&2 only, but I could kick myself. Wish I had said no. The rest came back negative. I don't know, just think about it, research it and get advice on the board here.
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mstori - eat some high quality protein and that might help with the sweet craving!
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mstori and kayb -
Thanks for your input and thanks for that link to the Washington Post article, kayb. I had to email the BS the oncologist's assistant's email address and included a link to the Washington Post article as a postscript.
I know another surgery will delay the chemo further and that concerns me...
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Thanks, kayb! I've saved a pdf of that and just forwarded it to my husband.
Dr. H. said he didn't know which of the three was the sentinel node but the micromet was found in the first node that he gave them.
Three total - one positive. The first one he gave to them was the positive one. I think I've got that right. I know it's 1/3.
Of course, he's the surgeon so I'm guessing he will push for the axillary node dissection...
ETA: What I suppose I should have asked him is whether or not there were isolated tumor cells in the other two nodes... I'll have to add that to my notes for Tuesday or maybe I'll email him again (but I hate to bug him).
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I just talked to my husband again - we were both on speakerphone with him. He said Dr. H said the other two nodes showed completely clear (but I'm still going to ask him Tuesday and I really do need a copy of the report as well).
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LeeA - total lymph node dissection appears, from latest research, to be overkill. Surgeons do seem to be slow in taking up this information though (funny that).
I was well aware of the recent studies last December after my lumpectomy and when the BS was strongly pushing the total clearance I stood my ground and said no. When I got to the MO she knew all about the research and certainly didn't panic about me not having had the clearance.
Having a clearance for micromets would put you at up to 40% risk of LE with what looks in recent studies to be NO benefit. Even if they recommend rads to the area if you have no clearance your chances of LE go up but only to about a 7-10% chance of getting it from rads.
It still makes me "steam" that so many surgeons are still doing this with the evidence mounting that it's just not necessary 😡.
I think I'd better go relax in a corner somewhere for a few minutes!
Jenn0 -
Jenn, thanks so much for your post! I just copied it and sent it to my husband.
I'm meeting with the oncologist for the first time this Monday. I'm hoping he is open-minded about this.
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