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aligrace726 View Drop Down
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    Posted: Mar 22 2013 at 7:49pm
I haven't been told I need it yet, but it looks pretty likely.  Stage 1 TNBC.
Don't know the first thing about Chemo
How long does a chemo session last every day?
And don't you have to have outpatient surgery to place a port?
Just curious about this because if I do need it I will need to make arrangements for someone
to drive me and I need to know what  to expect before choosing someone to go with me.
Is treatment an all day thing, a few hours a day or what?
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Post Options Post Options   Thanks (1) Thanks(1)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Mar 22 2013 at 8:26pm
Your hospital will provide you with detailed information, but you seem like someone who wants info ASAP (I'm like that) so here are answers to your questions.  I was given a choice of having a port put in or doing the chemo with IV in the arm.  I know many folks who've done IV and were fine with it.  I decided on port because I'd had bilateral mastectomy and single node biopsy and did not want to increase risk of lymphedema.  Outpatient surgery is necessary to place (and remove) the port.  It's not general anesthesia, just a sort of twilight sleep where you drift in and out.  I found it to be an easy procedure - in fact I had amazing lucid dreams throughout and was bummed when they woke me up because they interrupted a very beautiful dream.  I had some pain at the surgical site for about 24 hours after but it was very manageable with painkillers.  I was at the hospital for about six hours on chemo days, although the actual infusion took about half that time (you always start with a blood draw and then it takes a while to get you set up for the infusion).  Don't assume you won't be able to drive.  I often drove myself there and back and had a friend meet me there.  It is a really good thing to have a friend with you for support and to pass the time.  You might need to go back the morning after each infusion for a neulasta injection (to boost your white blood cell production).  I always felt fine the morning after infusions and I drove myself to all the injection appointments.  I'm happy to answer any more questions.  My chemo course was 4 infusions of Adriamycin/Cytoxan, one every other week, and then 4 of Taxol, again one every other week. 
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 6:26am
Katdoll, 
Yes I'm that way, I feel better if I got some info going into the doctor's office.
  I had a left side mastectomy and sentinel node biopsy, do you recommend that I do the port also. So chemo is pretty much a all day thing?
I've had some people tell me they go 3 days straight and then go back 3 weeks later for another three days, etc. Sounds like your schedule was a little easier than that.
Thanks for the answers and advice. Feel free to add anything you think I might want or need to know. Like I said I'm new at this.

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Post Options Post Options   Thanks (1) Thanks(1)   Quote denise07 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 23 2013 at 9:08pm
Ali,
Hi again I think every ones chemo is different in some way mine was every three weeks and I was given adriamycin/cytoxin and taxater(spelling) every three weeks apart and I recieved six treatments I was also very scared but guess what? I never got sick from chemo not even once I did not have to have a port either I used to go out for lunch after my treatments felt fine even my doctor was amzed I never got sick once and I wish the same for you.
Hugs
Denise
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beck View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 8:21am
I HAD PORT PUT IN IN HOSPITAL, BUT IT WAS TAKEN OUT IN SURGONS OFFICE, I DID CHEMO FOR 3 HRS , EVERY OTHER WEEK, DOVE MYSELF, NEVER GOT WHAT I CALLED SICK, BUT DID HAVE SIDE EFFECTS, SOME GET SORE MOUTHS , I DIDNT, BUT WAS RUN DOWN AND TIRED ALOT I DID DRIVE MYSELF TO EACH CHEMO, TOOK SNACKS DRINKS , BOOKS THINGS TO KEEP ME BUSY , I SEEN SOME TAKE LAPTOPS , OR YOU CAN NAP OR WATCH TV, I NEVER LIKES TAKING ANYONE, I GUESS IT WAS MY ALONE TIME, I WOULD GO SHOPPING AFTERWARDS MANY TIMES , TO GET MY THINGS DONE, BECAUSE I KNEW , I WOULD BE DOWN FOR A FEWW DAYS , ABOUT THE THIRD DAY AFTER CHEMO , HOPE THIS HELPS    BECK
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote HOC Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 9:38am
I'm going through chemo right now.  Just finished my 2nd of four doses of AC last Thursday.  (Every other week followed by Taxol which will be weekly for 12 weeks.) I had a port put in at the time of surgery since I knew I'd be needing chemo.  I'll be honest, at times the port hurt worse than the mastectomy.  It made my neck hurt when I turned my head and made it hard to sleep.  However, I'd still take it over the IV for the chemo just because it's so much easier.  The first chemo session I went to they said to allow 5 hours.  I was done closer to four, though.  It just depends on what they schedule you for.  This last Thursday I had the blood draw at 8am, Dr apt at 9am, and infusion at 10am.  I finished up the infusion at about 2:30.  It takes awhile because first they give me premeds and hydration for nausea, then comes the Adriamycin which takes about 15 minutes, then the Cytoxan which is an hour, then finish up the hydration and I'm free to go.  I've felt pretty good both times on the day of and day after (with the exception of a rare side effect to a premed that makes me dizzy and headachey).  The following day I go back in for hydration to help with nausea and for a Neulasta shot.  This one lasts about 2-2 1/2 hours.  The day after the Neulasta is when I get hit.  The shot causes me pain and tenderness in my jaw, neck, shoulders.  I take vicodin to combat it and that makes me sleep all day.  That was yesterday.  Today, it's still sore and tender, but I can deal with it without the vicodin.  By tomorrow I expect to be back to almost normal.  So for me, it's just two days down.  Luckily it's on a weekend when my husband can take care of the kids and I just sleep a lot. 
 
Hope that helps!  Good Luck to you!
Heather
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beck View Drop Down
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Post Options Post Options   Thanks (1) Thanks(1)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 11:51am
hos... did you try clartian before the shot , it helps alot with the side effects , learned this at cancer center, start taking it 3 days before   Beck
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 4:21pm
Thanks for your reply Heather.
You're the first to mention the port. I'm not sure what to do about that. But I will ask the oncologist when I go Tuesday. If its as bad as the mastectomy I don't think I want it. I had to sleep in the recliner for a week after that and didn't get any sleep at all.  
How do you shower with the port? I'm not much on baths and wondered about that.
Unfortunately my story is different.
I  had a lumpectomy with clear margins and the doctor told me I only needed some radiation. But he did say it was aggressive and there was a chance it could come back, so I told him to do a mastectomy. He done the mastectomy thinking I wouldn't need any treatment at all after that.
But after I got my results back and they were Triple negative, everything changed. I haven't seen the Oncologist yet, but I assume from everything I've read on here I will. So I want to be prepared with as much knowledge as possible when I go.
Are you Triple Negative?
DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 4:25pm
Thanks Beck,
 I haven't started treatment yet, but I will ask about the Claritan.
How are you doing and are you done with your treatments?
DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beck Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 4:32pm
i was done will chemo last june, port is no big deal, ive done it twice , i was just put under at hospital in some sort of twilite sleep i could hear everyone and talk to them, but didnt feel a thing, both time i had it out in surgeons office , didnt feel anything then eather , its a little sore for about 5 days , then you dont notice it much, Beck
ER postive in 2007 10 nodes in underarm,primary unknown, right side, did chemo and rad. Dec. 2011 TN left side 1.5 CM no nodes stage 1 did cmf chemo and rads.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote raehyg Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 4:57pm
The port is the way to go.... was a life saver when my daughter had cancer. The port is under the skin so you can shower. I am comforted in seeing that I am not the only one feeling the pulling....I thought it was just me. I started AC on Monday the 18th and overdid it since my port was placed. I was extremely tired and have been working without  a rest. Friday I left work early...I started to get some slight mouth issues but was rinsing with nutrosol and magic mouthwash and that helped. I was very nauseous but I think the coffee I was still drinking contributed to that. Since I have stopped I was much better. I seem to get winded pretty quickly iand I am very tired. I am not allowed to go back to work until Friday so I am hoping to regain some stamina. It is frustrating!!Oh and noone ever tells you that your hair foliicles hurt....a really weird feeling. I assume they try to forget that part.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 5:04pm
Thanks rawhyg,
Like I said I'm new with this, what is AC?
And you said your daughter had cancer, Are you saying you and her both?
How is your daughter doing?
Nope, haven't heard the follicle thing yet. That's a new one. 
Are you TNBC?

DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote raehyg Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 5:15pm
Aligrace,
Yes my daughter is a cancer survivor. She had neuroblastoma when she was a baby and is now 14. I am triple negative stage 3. AC is cyclophosphamide and doxirubicon. My spelling is propbably a little off so sorry. I am on an every other week regiment for 4 cycles and will be following by Taxol. They are doing the adjuvent therapy on me and then double mastectomy and radiation. I am not sure if they need to do more chemo later on but I am not too concerned. Yes my daughter went through chemo, radiation and several surgeries. The only good thing is at least I am sort of familiar with the whole process etc. As far as the hair, I guess as the follicles are dying they hurt and feel like thumb tacs...really weird I wasn't expecting that. Its also itchy at the same time. I think you lose your hair day 14 or so. I am only day 7 and checking everyday anyway.....best of luck to you!
Rachel
PS I don't how to add my diagnoses to my signature...I thought I did that already
 
TNBC invasive ductal carcinoma dx 2/21/13, dose dense AC/T, will have double mastectomy end of summer
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 24 2013 at 5:43pm
Wow,
 I'm glad your daughter is okay. I already had the left breast mastectomy, treatment to be determined Tuesday. I'm guessing we have the same thing. Because at first I was diagnosed with DCIS and after my lumpectomy I got clean margins, but after the mastectomy results came back and my sentinel node, progesterone and estrogen were negative, my diagnoses went to Triple Negative.
Do you know if everyone that has triple negative have DCIS first?
You sound like a very strong person. If its okay I'm going to add you to my friends list. I would like to stay in contact with you since we are so close in diagnosis and treatment. 
I'm starting to wonder if I should opt for have a right side mastectomy.
Thanks so much 
Hugs
DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote raehyg Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2013 at 8:50am
Aligrace,
I don't think you have to have DCis first but I have not done my research. Since my cancer is large and aggressive(stage 3), they have to do the adjuvent chemo first. My breast surgeon told me that was what she thought had to be done before I saw the oncologist. When I saw the oncologist, she confirmed that course of treatment. I will be getting a double mastectomy. I had decided prior to hearing all the facts with the option to change my mind if I thought it was necessary. When I found out the rest of the details I realize I had no choice. My left breast is full and my right has a fibroadenoma which is benign but every year I have a 12 % chance of getting cancer in it. I am having more issues with worrying about reconstruction than anything else. As far as doing the other side for yourself, I would discuss it with your oncologist and breast surgeon. If you are stage 1 it may be overkill since it was caught early on. You have to see what type of treatment they want you to do....especially since no lymph involvement, etc. Best of Luck on Tuesday
TNBC invasive ductal carcinoma dx 2/21/13, dose dense AC/T, will have double mastectomy end of summer
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2013 at 10:18am
Thanks raehyg,
I plan on asking her about if I should have a right breast mastectomy tomorrow. But I think I would feel better if I did.
I've already seen a reconstructive surgeon, not sure why my doctor set that appointment up before seeing a getting all my results back and seeing a Oncologist. But I went to the appointment anyways.
I dont' think I will have the reconstructive surgery. I'm almost 48 and from the details he gave me it sounds like it would be very painful. I think I can live with the scars, just as long as God blesses me and takes this horrible disease out of my body. I would be very grateful for that and satisfied. But I can understand someone in a younger age group wanting the reconstructive surgery.
My Oncologist is a Hematologist too with 37 years experience, so I hope she is well informed about all of this stuff.
Still don't understand why some do chemo before surgery and some after.
How is your Chemo going?
Lots of Hugs.
DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote raehyg Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2013 at 3:30pm
Aligrace,
I heard from many that they have regretted not doing reconstruction....I am having issues with that as well. Even older women regretting it. I am 40 and I think in the long run it would upset me if I didn't. Your only 48 very  young....I spoke with someone today who did it and said it wasn't half as bad as she thought. I am not sure which type I am doing. I heard the implants are the easiest and simplest recovery. I am thinking of the diem or tram.
The chemo is going ok...this week is a little better more energy....just my head feels like there are thumb tacs in it....my hair is getting ready to die off I guess.
TNBC invasive ductal carcinoma dx 2/21/13, dose dense AC/T, will have double mastectomy end of summer
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Post Options Post Options   Thanks (0) Thanks(0)   Quote aligrace726 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2013 at 4:04pm
I'm still struggling with reconstruction. I've only looked at my scar a few times. I only got my stitches and staples out friday. I really didn't look at it until then and I came home and took my first shower since surgery. It was kinda tramatic.
I saw a plastic surgeon last week and he said I would have to do the expander and then implant, but he also mentioned doing something to the right side to make them both look similar.
He said he really couldn't do anything right now until he knew if I needed treatment or not. So I've really put that on the back burner. I'm planning on asking my Oncologist tomorrow if it would be a good idea to remove the right breast also.
My daughter recommends I do the reconstructive surgery. She made the point that I may not have the insurance later on down the line to cover it. 
But honestly all I can think of right now is getting through this.
Someone mentioned to me on here that your head would feel like that.
Do you plan on getting a wig?
DX...Triple Negative BC, March 22. 2013. 1.5mm. Treatment and BRCA pending.
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Post Options Post Options   Thanks (1) Thanks(1)   Quote JulieKCA2013 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 25 2013 at 10:31pm
Ali I can give you a example of my night.  My first chemo visit took 5 hours, most of it waiting on the doctor and then prep of the drugs.  The actual administration of the drugs took an hour.  I showed up at 3 for a checkup, 4:30 was when I was suppose to report to enfusion, but my doctors visit ran over so it was about 5 when I got to enfusion.  They took me back at 5:30.  Set me up with some pre chemo drugs for nausea.  About 6:30 we started the Adriamycin, which is a push, the nurse sits there and administers it without an IV.  Then we waited for 20 minutes and I had an IV put on for the cyclophospamide, which took 30 minutes as well.  The worst part of the first visit was the wait.  
Dx 3-7-13 TNBC, 5cm pT2N1M0
3-19-13 ACx4, 5-14-13 Taxolx4
7-17-13 BMX ypT1N2M0(.9mm) 4/24 nodes.
10-8-13 completed Rads x 30
12-3-13 completed Eribulin Trial
10-18-13, 3-19-14 Bone/Ct Scan Clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote raehyg Quote  Post ReplyReply Direct Link To This Post Posted: Mar 26 2013 at 9:23am
Bought two wigs and   a few scarves......Don't know what I will wear. As for reconstruction, I am glad I have a few months to get over my fears. I am not having surgery until the summer so day by day I am becoming braver, lol. I spoke to someone from road to recovery from the American cancer society yesterday. She never had any surgeries prior to bc and she said it wasn't half as bad as she imagined it. Maybe you can call the amc and they can set you up with a survivor who can talk to you also. I think you have some time to figure things out. You will get some additional info after your onc. appt. Good luck
TNBC invasive ductal carcinoma dx 2/21/13, dose dense AC/T, will have double mastectomy end of summer
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