Calling all TNs
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Teka - oh, I so agree. And I think I'm going to make a real effort to keep my thoughts upbeat and positive.
My best moment of the day - my boys just came home from school, and we are going to decorate gingerbread cookies
.Peace everyone!
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Thank you laurajane,MBJ,Suze35 and swanny for your nice words,you are all so strong and brave,I can't believe the strenght my daughter shows when the rest of my family are falling apart.....about the drug companies holding it back I'm sure of it ,like I have heard said no money in a cure....MBJ I will look that up,you always have lots of info thanks........ bastards!!!!!! (drug companies) 0
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Oh ya, thanks Teka
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thanks Teka, I know I didn't sound it, but I am usually very positive, just frustrated I guess.
Kathy
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kelben- chances are you *are* good. It sounds like your doctors have confidance in their treatment. Try to do the same. More testing does not equate to better treatment, as it has it's own issues (scanxiety, as it is commonly called, being one of them). If you read through this thread you will see a wide variety of thoughts on additional testing and follow-up care.
Take care.
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I'm there, thanks bunches. 0
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Kelben:
We all have the exact same fears and anxieties - more time out and they will temper "somewhat." So never fear to post what you are feeling we will ALWAYS understand. We all just have to trust that we did all we could with our doctors leading us, and that all will be well. And you must always remember - there are MANY triple neg ladies that never recur. Just keep reminding your self of that.
And welcome to our thread - glad to have you here. Best always,
Linda
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I just wanted to pop in to say hello and welcome to the new ladies.
I had my first real hair cut since starting chemo in Aug 09. I love, love, love my hair. I liked the curls that I had, but now that they're highlighted and I have a good shape and goal with length I LOVE it. It turns out my hairdresser is very versed in chemo hair and curly hair - she takes classes and seminars. I'll try to get an updated photo on over the weekend.
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I think C in the dose dense AC might have given me a huge headache so on day one, I already vomit a few times because of that headache. Tried warm pad, in fact, not sure if cold would work better. Can not imagine what is ahead of me. Any insight about what I should do more? I took one anti-nausea pill but did not keep down. Now I am on suppository to use rectally. Hope it helps. Can I take tylenol? would regular be fine? thanks so much.
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thank you all for the warm welcome.
Jenn3 congrats. on your hair. Mine is on its way, about 1/4 inch long. Mine was curly before it fell out so I'm not sure how it will come in.
meglove sorry about your nausea... geez hopefully the suppository will help. I'm thinking postive thoughts for you.
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Laurajane : So happy that your scan is clean!!!!!! I have to go in next Tuesday for bone scan....
Jenn3 : I can't wait until I can have a hair cut too.
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Wow, this thread is so busy today. I can't keep up. I don't know where to start.
Welcome to all the new ladies.
LauraJane - what wonderful news your scans being good. Your posts are so uplifting and your great attitude is infectious!
Jenn3 - glad to hear you had a nice haircut. Looking forward to seeing it in pictures or live when I'm in New Orleans.
Roots canals and cancer...hmmm - I had a root canal 25 years ago and have another tooth that's kind of iffy for going that way in the future.
Friends - so sorry to hear about your daughter.
Nothing too exciting going on with me these days so I don't have a lot of add but I alway read your posts and love to hear what's up with everyone. Take care.
Sherri
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Hi ladies,
So I went for my appointment at UNC and it was great...So much different than what i have locally...I had everything completed that took me a month to do here...
Has anyone participated in a Clinical Trial? Pros and Cons?
We have a plan..Sentinel node biopsy if lymph node comes back negative, port, and clip... Chemo, possibly radiation, then surgery with reconstruction.. this is completely different than the original plan..we feel much better..Im definitely TN and UNC has a clinical trial for TN patients..not sure about the meds that it will add..
thanks for listening and giving me guidance!
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meglove: So sorry you are having this reaction. Maybe the nurses need to get your dr to approve more anti nausea meds. I threw up only the first round and that was because I didn't take the pill as directed. After that I never missed one. I hope the suppository works.
Jenn3: Yay for great hair stylists!!!
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Wow! Busy, busy busy. I used to be able to try and catch up in one day on all of the posts. This is fun!
MBJ- Root canals? Makes sense to me. I've had so many but I would need to go to dentures if I had all of my bad teeth removed. Really has me thinking, though. I bought a live tree also. Hope to stop procrastinating and decorate it tonight. I feel really pretty good today. Its a wonderful feeling.
Suze35- Thanks for the note on Rena. I love hearing stories like that. As a matter of fact, if anyone else can share positive stories on TNBC survivors I would love to read them. I've beeb really nauseaus on this chemo cocktail too! Even the smell of chicken soup makes me want to hurl. I have been drinking ginger/peppermint tea and it really has helped me. What a wonderful feeling to feel your tumor shrinking. Mmmm! Baking x-mas cookies with my kids is one of my favorite traditions too!. I say kids but they are 17 and 25 LOL.
Mitymuffin- I hope your pain diminishes soon. I find my pain more tolerable now that I know its not bonemets well that and the wonderful pain pills. Ha Ha!
Jenn3 - Looking forward to your pic. I love hearing the happiness in your post.
Monika- I'll be thinking of you next week and hoping you get great results. I know it is so terrifying going in to have that done.
Moe - Sounds like you're in good hands. It has to be a good feeling to have a strategic plan.
My plan for the day: I'm going to bundle up and go outside to hang x-mas lights today, make a fresh cut on my tree bring it in and decorate it, and clean my house so it feels spic and spam. Lets all see how much of this I might actually accomplish today. I am still sitting in my robe and it is already 11:30AM. LOL. I hope everyone does at least one thing today to make themselves smile. Enjoy the moment!
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Well, I finally finished putting up the Dicken's Village and am now working on the North Pole. Instead of climbing up and down on steps stools to light them I am now contorting myself under two trees hooking up all the lights and accessories on the colorful NP houses.
Maybe when this is all done I'll take a little video (at night when it's all lit up) and put the link on this thread. I really enjoy picture taking. Tomorrow I have another field trip with my nature class--- hope my fingers don't freeze on the shutter button!
Meanwhile, I am cleaning house for company, something I usually don't do (have housekeeper--- I know, I know...) and the d*mn vacuum is not working properly. It (doesn't) suck...
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Heiditoo- Sounds like so much work but I bet it is beautiful. I'd love to see it as I'm sure the rest of us would. Please don't let your fingers freeze we love the photos you so often post with us.
-"Speaking of constipation" I know it sucks when the vacuum won't suck. LOL.
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Hello ladies!
Just checking in with everyone.
I'm intrigued by the root canal discussion. I got one several years ago (my only one) and it's on the same side as my BC.
Also wondering if anyone has had experience with the "volunteer" housecleaning? It's a service that you can sign up for during chemo (your onc has to sign off) and they contract out with local services to do your house once per month for 4 months. Has anyone done this?
I also wanted a quick thumbs up / thumbs down on wig vs. scarf. A good friend who went through chemo said that she preferred wigs b/c she was working (and with scarf, everyone has to come up and tell you their cancer stories). I have another friend who loved the freedom of scarf
Just wondering what you thought!
Thanks!
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I am wearing hats and scarves and I don't like them, but I think the wigs would drive me crazy. I'm afraid I would be pulling and pushing it all the time. I never wore anything on my head before I lost all my hair, even as a kid I wouldn't keep a hat on. So, sorry I can't be very helpful, but the scarves are beautiful, inexpensive and easy to maintain.... wigs aren't
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I did wig at work at first, then decided it was too much of a hassle. Actually, only a few people said anything cancer-connected when I was wearing scarves. Most comments were just about them being attractive. My office is way too hot for me to have stayed comfortable in my wig. I keep a space heater and fan side-by-side and alternate using them.
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Just found out today I am positive for BRCA1. TN and BRCA1+ No one in my family has even had breast or ovarian cancer. What now I wonder? Can anyone tell me about their experience with this? Thank you thank you.
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Hi LJ. Hope you accomplish some of the things on your to-do list today. I always look for your posts. Be happy!
I wore baseball hats during my "no hair" days. 1 week ago I stopped wearing anything. My hair is all grey but kind of salt and pepper and people really love it. I always wore my hair short (not quite this short). My hair is about an inch long now. I think I will dye it once it is long enough. I thnk if I dye it now it will be 1/2 color and 1/2 grey within a month or so. I'll wait until it gets longer.
Moe - glad you have a plan you are comfortable with. Like everyone has said, we have all had different treatments and not the same treatment is right for everyone. I trusted my BS, and my ONC. Actually, I did not know nearly as much as I know now but I am comfortable with my treatment plan.
HeidiToo - looking forward to your video.
4 more radiation treatments to go. I will be finished on Thursday. Hooray!!
Best thing today, I took off work at 1:30 pm and came home to enjoy. A little white lie doesn't hurt anyone.
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Amyadele...I am BRCA1 positive and was diagnosed with TN last year. I had a bilateral with immediate reconstruction, TE and implants put in earlier this year. I also had my ovaries and fallopian tubes removed. These recommendations came from my doctors. It does put my mind a bit at ease about recurrence. Do you have any particular questions you want to ask? Let me know.
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Age: will be 40 in one month.
Diagnosed: February 2009 at age 38
BRCA1 positive, TN
Bilateral mastectomy with immediate reconstruction with TE and saline implants put in January 2010
Chemo - 4 rounds of Taxotere and Cytoxin.
Ongoing follow ups every 6 months.
Life is back to normal...busy, busy, busy...but I am grateful to have beaten the cancer and be able to live a healthy and normal life.
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meglove - I had terrible headaches that seemed to settle in around my eyes and sinus area starting about 30 minutes into the Cytoxan. Ask them to slow the drip down to about an hour or more and it should help the headaches. It's more time in the chair, but worth it. I hope you're feeling better today.
sclst - I bought a wig, but never wore it. I was a scarf lady. When I went back to work I wore dressier scarves until I had some hair, then I went without.
LJ - at the moment my DD has my camera so I am unable to take a picture, but plan to over the weekend.
Sugar - looking forward to seeing you - it's coming up soon. Did you get the stuff we mailed?
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I signed up at the website cleaningforareason.com because the person i hired to clean during said she participated in that. She cleaned my house once a month for free during my chemo. It's worth it. When I was feeling awful, she just cleaned around me lol
Her mom had cancer so this was close to her heart.
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I could use cleaningforareason now that I'm back to work! When I was on medical leave, I had so much more time. I work with a woman who went back to work from maternity leave the same day as me and she talks about her great nanny who cleans, cooks and even makes lunch for her. LOL...maybe Santa will bring a nanny for me!
Jenn - yes, the trip is fast approaching and we're looking forward to it. The stuff hasn't arrived but I'm sure it will soon. I will let you know. The mail is probably slower due to Christmas and crossing the border.
I wore a wig all the time when I was out. For me personally, I tried to look as much like my old self as possible. I wore makeup every day and my wig. I didn't mind the wig as it was winter and it kept my head warm. Had it been summer, I might have felt differently.
LauraJane - wow, you had a lot things lined up for today. How ambitious! My tree is up but it's not decorated yet. I have presents to wrap and my daughter and are going to bake some cookies or something on Sunday. So this weekend we'll be busy.
I hope everyone is feeling good today.
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Slc- I wore a wig when I was dressing up to go out, the rest of the time I wore a hat or scarves.
Swanny- So happy you have made it through the radiation. Thursday will be reason for celebrating. I'll look forward to having a glass of wine and toasting you!
Hi Diva- It's nice to meet you. I'm glad you joined our thread. I'll look forward to learning more about you.
Sugar- I'm sure you are looking forward to this week-end. This year I want to concentrate on fancy cookies. A client of mine made all of these beyond fabulous decorated sugar cookies last year. I mean they were absolutely gorgeous, intricate frosting detail and almost a sin to eat. I also love those really thin rolled cookies that are patterns etc.
Well, I feel absolutely fabulous today three days after 2nd chemo. Now I have two weeks off because of blood counts. Just about did everything on my list. I felt better today than I did all of last week. My onc said the first week would be one of the hardest on this new chemo and she was right and that the next few doses shouldn't be as bad. I guess the system goes into overdrive from the shock of it. Someone else had said this also on this thread. The lights look so pretty outside, tree is up and decorated (With help from my daughter and my son) and believe it or not my house is pretty darn clean. However, I would love to see if they have that cleaning service here. LOL. I hope everyone had a great evening.
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My pathologist who had done my receptor tests, sent my tissue to UCSF for re-testing. UCSF says that they agree with my first receptor tests, which is less than 1% estrogen, 2% weakly positive progesterone and HER hegative, so pretty much I have TN. Anyway, my Onc. still wants to put me on hormone therapy such as aridimix, and I am considering that now. Anyone with the same experience?
Also tumor board looked at my right breast which has atypical ductal hyperplasia, a pre-cursor to cancer. My onc. says that I still have greater risk of recurrence in the left breast, rather than right, where the cancer was, even after surgery and radiation. The tumor board recommends that I get watched very closely as I fall in the high risk due to the atypical cells.
I have already had surgery in left breast with clear margins and am headed towards radiation after 2 more chemo's. But now I am thinking maybe I should have bilateral mx. I can't decide what to do. My onc. says if I was his sister, he would not recommend any mx. in either of the two. My general surgeon says if I was his wife, he would recommend bi. mx. but then he is a surgeon and likes to cut, right? I just don't know what to do. I wish my case was such that they would tell me that there was no other way except to have bi. mx, but I am in the middle. I don't think there are way too many studies done on this subject whether atypical ductal hyperplasia becomes cancer and if so what percentage.
Anyone has any information on this, please? While my greater worry is metastasis, local recurrence is my other big worry too, as if one big life threatening worry is not enough. Anyone please has any comments, please tell me what to do.
Does anyone have a website where I can go and see what reconstructed ones with implants look like. Is there a good website to go and watch pictures and procedures? The posts here regarding recon. is very confusing to me as I don't understand the expanders, etc. and don't know how to begin educating myself before making my decision.
Please help me.
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Lovelyface - I had atypical ductal hyperplasia, DCIS and IDC all in the same spot on my right breast. I had lumpectomy, chemo then rads.
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