Calling all TNs
Comments
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HeidiToo: LOL!
PinkPeeCA: Welcome and sorry you have to be here but you found a great group of women and support! It sounds like you just started AC chemo and that you are having it prior to surgery. I had TC chemo and then surgery after, too.
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PinkPeeCA: Sorry to see you here but glad you found us! I enjoyed reading your post. I haven't started chemo yet. Actually they're doing more tests to verify it wasn't all DCIS, but if/when I do, it will be TC. I've heard about adriamycin making you pee red or pink. I have 2 daughters and am BRCA2+. Both mine are young adults, but they're being tested for the genetic mutation and will get results this week. Needless to say, we're all anxious about the results. I had a talk with them, mainly to ease their fears in case they come back positive. It doesn't mean they will get cancer, but it does mean they have a greater risk and need to consider options.
I have a question for the rest of the group. Regarding salpingo-oophorectomy and risks. I've been trying to research this, being that I'm 43, and am finding risks associated with long term effects after getting it done. For BRCA2+ people, has anyone here had it done and what age were you? One study I found said there was no difference in outcome between those of us who were 40 and got the surgery vs. those who were 50. So now I'm really confused. I don't want a heightened chance of osteoporosis, dementia, Parkinson's, heart problems, etc. Osteoporosis runs high in my family and I'm tiny to begin with, and my gma had dementia (alzheimers) and parkinson's. For BRCA2+ I'm seeing risk of ovarian being 10-27%, and one site said even lower than that. I was all set to do this within the next few months, but now I'm wondering if I should try to get by with surveillance for a while. Desperately need your advice and opinions... also fear premature menopause. Thanks!!
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PinkPeeCA, welcome to the group but sorry you're here (you know what I mean). As you're no doubt finding out, there's no standard for TN, but sounds like you're in good hands so what ever they are recommending and doing for you should be fine. A lot of us did pre-surgery chemo, some did not. Again, no set standard, just what your oncologist and surgeon recommends. I didn't do your chemo but the pink pee thing is a little freaky. Actually no matter what chemo you're on, I found the whole process freaky but much more tolerable than I imagined in my mind when I was first diagnosed.
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Thanks! You are one year ahead of me! I do 2 more weeks dose dense CA then 4 weeks dose dense Taxol, then surgery, then radiation for 7 weeks. I did take the BRAC gene tests last week, to be more educated about the next step of surgery. Did you radiate? Did you participate in any Parp or VEGH trials? I am in the UCSF/MGH system and there is quite a lot going on here. I now know of over a dozen women in my small (10,000) town who have had BC, but only one triple-negative. She is treating her stage 4 holistically, so you and this posting is HUGE to me. K
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HHey Pink Pee..yeah..I remember the pink/red pee..good thing the nurses warned me about it or I would have be freaking! I also did the the 4 dd ac and taxol plus 35 rads..had a lumpectomy first..as you are finding out TN's are special! Or at least I like to think so!
No comment on the holistic stuff...I think I would have been too scared to NOT do the surgery/chemo/rads..I think alot of us try to combine both...Do the medical part and then the supplements, green tea, exercise route... good foods type of thing.
I know that since I'm eating better and taking supplements and exercising I feel great!
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Pinkpee : Welcome !
Good evening ladies, Just got back from seeing the BS and the PS . They both said I am healing well. I did notice my left breast is a bit warmer than the other so as a precaution she started me on antibiotics. I got the pathology result today and there was no evidence of malignancy on either breast . I am so excited! As youknow I had the Nipple sparing Mastectomy and my left nipple is back to its normal color and my right is almost there. I am so glad I opted for this procedure.
Well, have a great evening everyone.
Lynn and Laurajane: How are you girls doing?
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Monika - glad to hear things are healing up well.
PinkPee - welcome. I like your screen name. I didn't have AC so my pee wasn't pink...lol...but I had blue pee from the dye in the sentinel node biopsy if that counts.
Titan - I agree, I would have been too scared to skip the conventional treatment but am trying to eat more healthy and exercise regularly. I say that as I sit here eating left over Halloween candy. My intentions are good, though...
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Monika: That is such great news! Congratulations!!!
Sugar: LOL!
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PinkPee: I have to say, I cannot imagine being stage 4 and doing only holistic means--TN is so aggressive. Best of luck to her. I also do the alternative stuff with regular treatments.
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Hi all. Should of listened to you. I guess my BS thinks I have an infection. Drain juice turned from semi-clear to yellow and now stinky brownish and milky.I've been prescribed antibiotics. Did anyone else have this happen? I still have my drain and probably will for another week. Still have about 40ml a day. My BS told me to stay active. I see him again on Thursday.
Lynn- How are you both doing. I'd recommend you take it a little easier than I have like all of these women on here told me. That's funny about your Holloween costume. I bought tons of candy and only had about 12 trick-or-treaters. I need to staaaaaaaaaaaaay away from it. Ha!
MBJ- You are right it is so hard to remember not to lift. It's amazing how we are used to lifting and than that pain shoots as a reminder. Thanks for the info I haven't had a chance to really look at it. Are you back doing your interior design work?
Claire- Found a shop today. I still can't wear one yet but thanks for the idea. She was real nice and man it felt so real when she showed me the fake ones. Wish they could just implant them now. LOL.
Heidi- I just love you!! Kisses and hugs!
PinkPee- I'm sorry you are going through all of this also. Loved your blog and hope you'll consider writing a book. You put into words what so many of us TNs deal with in a unique way. I am sending beyond positive thoughts and well wishes. I love this site too! These wonderful women on here help me in so many ways.
The best thing that happened to me today is that this landscape job we started looks "Fabulous". It is for the President of IU and his wife. We should be done on Friday. Let me recomment it is looking "BEYOND FABULOUS'. Lovin' the work.
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CCnp4g- Good evening. Hope you are doing well. I've never heard of this.
Monika- Sounds like you're feeling good. Glad to hear it. I wish I could have saved my nipple. BS wouldn't hear of it when I asked he explained why but I was all drugged up by that point. Oh well. I'm trying to not visit the past too much at this point.
Titan and MBJ you both are an inspiration. By the way, thank-you, thank-you thank-you Titan for starting this post.
Hey Sugar- Hope you're having a fabulous day.
Ladies- Whats the best thing that happened to you today?
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Hi All - It has been a while since I have been on here!
Congrats to LJ!!
Welcome to Pink Pee!!
Went to the Breast Cancer Retreat through Breast Cancer Recovery - Infinite Boundaries. Held here in Wisconsin. It was wonderful. I met 11 other women who had some type of Breast cancer, we talked, cried, and laughed. We did yoga, water aerobics and many, many other wonderful exeriences! I loved it. Wish everyone could go. Although, they didn't allow you to use cell phones or computers! So that is why I am just getting on now.
My eyelashes are finally coming in - same with the eyebrows - just wish they would be faster, same with my hair too! O-well at least I am finished with Chemo! Yeah!
(((HUGS)))
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Had my first chemo today and so far I'm feeling great! The first person I met this am was a chatty pleasant woman around my age who is also triple negative, and there to get her third TC treatment. She was very helpful in explaining the routine to me!
But here is the problem: I had my lumpectomy 9/2/10, with a sentinel node biopsy. The breast incision was fine, although I had to have a revision 3 weeks later to achieve a larger clear margin on one side. that went ok too. The sentinel node biopsy wound has been a real problem though. Post OP I had a lump about the size of a grapefruit, which was very uncomfortable. A week later, the incision opened up, and started bleeding! Its now been nearly 9 weeks, and the darn thing is still draining!! At least the swelling has gone down a lot. The radiologist and the oncologist are very concerned about this, but the surgeon is incredibly nonchalant, says it will eventually heal and doesn't even want to follow up on it! They delayed the start of my chemo by 3 weeks, and only very reluctantly agreed to start it today. Apparantly this wound is very depp, and the oncologist describes it as large, but o ne the hole only looks about 3/8th of an inch long on the surface.(High risk of infection and potential for lymphedema) lately the drainage has been pink with some mucus in it, and occasionally a pretty big chunk of old clotted blood comes out. They definately can't start radiation with it like this, but that would not start until the end of January 2011 so I guess I still have time.
I plan to call the surgeon tomorrow and demand that she do something!
My question is, has anyone else had this problem? How did you or they deal with it? Thanks in advance for any suggestions!
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Blindsided:
Yes, I had that problem and it turned out to be a doozy that I wouldn't want to see anyone go through. I had a very large lumpectomy. Went from middle of the right side of my right breast up to and around the nipple and back down and through the middle of left side of breast to sternum. My freaking 1.2 cm nodule was 5 cms below the nipple, hence the "bat wing" surgery. I healed pretty fast but in that one little corner where it met at my nipple and began to go up and around the nipple, I had a tiny scab left. All my doctors, BS, oncologist, vascular specialist that put in the port, all said I was fine to start my AC. Well I did and the second night after the AC infusion, my breast was beet red, extremely painful and hot as hell. I began to run a fever as my blood counts were crashing to below ground and developed febrile neutropenia with cellulitis of the breast. I was in the hospital for 6 days on IV antibiotics and when released, had to have IV infusions for 6 weeks everyday before work and on weekends. It was a freaking nightmare. They delayed my second AC for three weeks, and boy was I frightened even thinking of having it. All other 7 rounds of chemo after that I had to be on antibiotics two days prior to each infusion, and for 7 days after each infusion - for each of the remaining AC's and the 1 taxol and 3 taxoteres. It was disgusting.
Moral of story - listen to them please - three weeks will not change your course, but will make the rest of the journey soooooooo much less painful and easier.
Wishing you all the best.
Linda
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Blindsided - glad to hear all went well with today's TC treatment. Do let me know if you have any questions. I had sentinel node biopsy, too, and still find that area gets tender and my surgery was Oct. 30 of last year. Hard to believe it's been a whole year.
The best thing I did today was snuggle with my dog before I had to get up for work. It felt kind of cold this morning in the house and I had put fleece sheets on the bed yesterday. My husband let the dog out just before he left early for work and it was frosty outside. When the dog came in the house, he ran upstairs, jumped in bed and curled up in a little ball under the covers. He's a bichon-poodle and was so snuggly. I didn't want to get up!!
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The best thing that happened to me today was to get my ugly reconstruction re-done by the best plastic surgeon in the northeast. Yes- I have my TE back in along with a drain, but I'm on my way to looking so much better!
And as with every surgery I've had, my kitty who doesn't cuddle all that much won't leave my side.
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My DH has been out of town for a week. Tonight I made one of my favorite dishes (that he doesn't like) just for me. I got yacking on the phone and burned the garlic, but just started over and had a great meal. And since my son isn't home, I have leftovers
Laurajane: My older sister went to IU. I well remember the woodsy areas around campus. Bet it's pretty in the fall.
My puppy's been sleeping with me. For such an active girl, she is quite still at night and a good foot warmer.
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The best thing that happened to me today was something that's been a regular thing since my mastectomy. My cat, Imp (all 17 lbs of him) has turned into a snuggler. I get in bed, smooth out the sheet beside me and he lays right up alongside of me and purrs me to sleep. I've started setting the alarm 15 minutes early because he wants to snuggle me awake, too!
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MonikaV: I am glad to hear you are doing well. I saw my surgeon today and she said everything looks good. We should be in pretty good shape in time for the holidays, don't you think?
Laurajane: I guess the best thing that happened to me was that I got my drains out. I am happy they are out but I'm a little sore now. I am sorry you have an infection. Good that you started antibiotics. It sounds like you have been working alot, that's great! Thanks for the advice about taking it easy, I think I will for a few more days.
MBJ: Like you, I didn't have any morphine, I had a pain pump that delivered some local med into the area. I think that made recovery quicker for me.
Kad22: The retreat sounds wonderful. I wish we all could have gone with you. I am also getting some eyelashes back, I am very happy about that.
I am glad so many of you have a four-legged friend to snuggle with. My eighty pound golden retriever loves to cuddle with me in bed but he is so darn big, lol.
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Hi guys... thought I'd post the best thing that happened to me today. I left the cold weather of Ohio and am in warm, sunny California for a few days! I dislike winter anyway and am looking forward to walking in this gorgeous weather!
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good morning everyone! started off the day with a PET scan! Woot!
hope everyone has a great day!!
xxoo
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I am *surrounded* by pussies every night! One at my neck (under the covers), one at my side (on top of or under the covers) and one at my feet. The one at my neck loves her "suckie shirt" time (kneading/sucking my pjs and purring), the one at my feet occasionally feels the need to attack them (OK, I'm awake now), and the one by my side just plays dead (*nothing* will make him move or roll over). The dogs, however, get crated at night; in fact, I can't trust them around the cats.
Today's humor:
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Hello Everyone.
Just thought I would check in and let you know I am still Alive and Kicking. I start my radiation treatments on Monday. Good news is that I should be done the week before Christmas. Yeah! Take care all and enjoy the upcoming holidays with your families.
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HeidiToo - That one made me laugh.
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http://www.youtube.com/watch?v=vJRDpTUIrJI&feature=player_embedded
Nothing to do with BC but it is really funny!
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Heidi - that's hilarious.
My dog Brandie also gets crated at night. Looks as though the snuggling yesterday morning was a one-off thing. He was more interested in sniffing around for Halloween candy in my daughter's bedroom this morning
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Hey Swanny, we are on the same radiation schedule. I will start on Tuesday.
I'm checking on everyone, and thinking about you all, just not posting because (thank goodness) I don't have much to report. I'm going without the wig, and exposing my little head to the world. I look like a baby chicken, but greyer.
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baby chicks are beautiful and so are you!
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Hi everyone!
MicheleS - wow - why a pet scan, if I can ask?
So I have a question for everyone who has finished chemo - did anyone else's bones feel like they have arthiritis? My hands hurt so bad all of the time! Other bones hurt too but my hands are the worse and since chemo my hands have swollen and I can not wear any rings?! Just wondering?
So it is getting cold up here in Wisconsin and the mice are coming in out of the cold!! YUCK! So we have two cats and a dog. The cats love my daughter who is 15 well today they brought her a present to her bedroom upstairs. Waking to screaming because there is a dead mouse with it's head off!! HE-HE Digusting I know but we have a corn field in the back of our house so go figure!! LOL
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Oh, Heidi - that was a good one!
MityMuffin - it's not gray - it's "platinum".
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