Calling all TNs
Comments
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Hmmm... I'm not sure Claire... but the onc today did mention a clinical trial for DCIS. I know a lot who haven't had chemo if the IDC is confirmed less than 5 mm. I think it really depends on the oncologist perhaps. Maybe some other ladies know more about that. I only researched the usual treatment for basic triple negative prior to my surgery, since I felt I would fall among those.
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Best thing I did today: Went to a great lunch. Had Filet Mignon - first real steak I had since started chemo. My taste is back and it tasted very good. Good part, I didn't have to pay for anything, a vendor paid for the lunch.
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Blindsided and TifJ - as promised in my post earlier today...I just sent you both some tips on getting through TC.
Like Swanny the best thing I did today was have a nice lunch (a vendor luncheon as well) and had a wonderful warm seafood salad (grilled scallops, shrimp, mussels, calamari). It was so good. And tomorrow night is the first in a series of five monthly cooking classes that I'm taking. One thing this diagnosis has done for me is got me doing the things I want to do instead of putting things off. Oh, and I also just booked a trip for our family to go to New Orleans for New Year's.
I always check this thread as I enjoy hearing how everyone is doing. And, of course, I like to see what Heidi has in store for us....
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Lynn and Monika so glad your surgery is over and hope you both heal fast. Isn't it great to have that out of you?
Hhfhiedi and MBJ thanks for the laughs. Almost makes me want a cat. Almost. LOL
I had a seroma start last Saturday. Painfull. But my surgeon recommended I let the body reabsorb rather than use a syringe to drain it. He thinks that can lead to infection. Actually it is much better now. I was hoping to have my last drain removed tomorrow but I am still having too much fluid between 30 and 60 ML a day. I get to go in for a check-up though. I started leaking today at the drain exit site so I will have that checked tomorrow. No results on pet scan yet. Although I had a dream last night that my doc said they were clean and no sign of cancer I guess I will find out tomorrow. Lynn I am still kind of numb like, it sure is a strange feeling.
I wish I had known all of you before I did the AC. I think especially because it didn't do anything at all against my TNBC. It's scary to think what it may have done to my heart. Although I like to think that my heart is even bigger and fuller now than ever.
Sugar- Move on and forward love hearing that. I hope you had a great lunch.
TIFJ and Blindsided I had Taxol and it wasn't bad at all. I craved chocolate like crazy. I am continuing to loose my nails but my hair started growing back and even my eyelashes are slowly coming back. I had my last one about 4 weeks ago. I did the weekly though. I hope it goes well for you with few if any SE's. I know your fear though, but you can do it.
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LauraJane - there are many TNs with node involvement who had AC/T, often DD. Noone could predict you would not respond to the adriamycin. It is pretty much a standard of care. So you did what was appropriate at the time.
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Great to hear from you LJ! I have 2 cats..I love them both dearly..you can have both dogs and cats you know...I would like a dog but my DH and I are both away all day and I just don't like to leave a dog alone all day..Cats are very independent...They act like they don't care if you are away or not! Some cats are so very loving and then some of them just stick up their tail at you and walk away..they are funny animals!
Ok..I decided it was time to get rid of my freaking spare tire..did 25 crunches today and ran 2 miles..this tire has GOT TO GO! I had a personal health assessment today and everything was perfect..except for my weight..all that weight is in my stomach area..I'm not ready to look matronly yet! NO NO NO...
LJ..the heart issues from adriamycin is not a guaranteed side effect...When I had my heart tested to see if it was strong enough for adriamycin the tech said that eventually the heart would pop back..I hope so!
What do you do..take chemo to hopefully get rid of cancer cells and risk the side effects..or not take chemo and possibly have the cancer reoccur or mets..it's horrible that we have to make this choice but that is all that is available now.
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Thanks Gillyone- Actually, my cancer had no response to any of the chemo (AC & Taxol) I did and actually continued to grow throughout. But luckily it has worked for many TNBC's. You are right it's ridiculous reflecting back. Although I am hoping this so called "Standard Of Care" will soon change and a new standard protocol will include testing the biopsy to see what will work. Here's hoping carboplatinin and/or anything else new out there will touch what I have. Still thinking positive though so glad to have my surgery done. Thank-you.
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Hi Titan- My dog thinks cats are for eating. I love to see other peoples cats and even pet them. I use to have cats and I did love them. You have their diverse personalities to a tee.
Congrats on your crunches and Wow! 2 miles thats fabulous. You give me incentive. I think that is great. I look forward to healing a little more and starting to do the same. I use to work out regularly and it kind of got put on hold this summer. I think that is why it feels so great to be back working again. Well, not like I was, but hopefully soon will be. Have a great evening.
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LauraJane - my onc told me about a fairly new drug for TN called Ixempra. He told me of a study where a women had one very large tumor and several smaller ones and after taking the Ixempra (don;t know how many doses), the tumors were completely gone. He said the major drawback to it is that is can pose a higher risk of long term nueropathy vs. a taxane drug. He did not recommend this for me as I had Bmx prior to surgery and everything was removed with clear margins. Best wishes to you!!
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Monika: Hope you are continuing to heal without too much pain. Wonder if you are at home now?
The best thing that happened to me today is that I took a shower! I had to have a little help. LOL
Laurajane: I hope your dream is a premonition and that your scan is indeed negative. I have been having vivid dreams also. Also I have my days and nights mixed up. About the A in the AC, I have heard it can be hard on the heart but my onc said the amount I had was low and did not pose much risk. I hope that is the case. I think we TN/s need to be tested before to see what kind of chemo works best for us, you are right about that.
Titan that is inspiring to hear about how you have been running and working out. I hope I can get back into shape pretty quickly. Good night everyone. LJ, hope you have a good day tomorrow.
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Ugh... time for the repeat liver and lung scans. (I've got a call into my onc, since it is/was my GP who brought them up, and the radiologist who recommended them). How did 6 months go by so quickly? I hate this sh*t, but I'm afraid to not get them done.
Stupid f*cking cancer. You just can't jump off the roller-coaster. Even a Rumrunner and chocolate doesn't help. Now *that's* just wrong.
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Heidi:
The scanxiety is always the worst part and I hate you have to go through it, but you won't be alone - we ALL will be right there with you, promise! My onc does no scans unless I have symptoms or I personally request it. I'm sure my time will come, until then, keeping my head in the sand!!!!
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Laurajane: Always the sunny and optimistic one! I really just love your energy. Wasn't the vide of the cats hysterical??? Crazy animals! I hope, too, that your dream is a premonition and the cancer hasn't progressed anywhere else.
Best thing I did today was go for a 5 mile walk through my neighborhood. Stopped at the Korean market and bought fresh shrimp and mussels for Paella and it only cost $2 for both. Love my neighborhood. the Paella tasted just okay but it was fun making it.
Sugar & Swanny: Look at you two getting taken out to a nice lunch! Yumm! I have this thread and have it marked as a favorite!
Titan: I hear ya on the weight only in the middle. My problem is I am skinny everywhere else. At least now I have foobs that stick out further then anywhere else.
hffheidi: We are all here for you! I was just telling my DH that I am do for an MRI or something! My year anniversary was a month ago and I have been so scared lately. Maybe I just have PTSD.
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Just wanted to stop in and share....I finished chemo June 16th and have been wearing a wig. Over the weekend my 10 year old daughter wanted to know why I take the time to put a wig on when "it doesnt matter whats on the outside, it only matters whats on the inside" She made me so proud that I wanted to cry....I have not worn my wig since! Have a great day everyone....
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I had "abnormal" scans for liver and lung. Radiologist was not too concerned, but still recommended repeat.
Unfortunately, "normally abnormal" still = STRESS.
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Good morning ladies, I am home now. I am doing ok.
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Monika: Glad to hear you're home!! Rest, take your meds, and heal!
Kelley: You're daughter is wise beyond her years, and completely right.
I'm curious, since I'll probably have to have chemo (4 rounds of TC)... How long does it take before new hair growth appears? I've read some posts, and I know it varies. That's the one thing (outwardly) I hate, because you can't hide the fact you have cancer to anyone.
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Good Morning Everyone!!!!
My dream came true! My sweet friend Doc Bill called me and woke me up with the most wonderful news just like in the dream I had the other night. He was shocked, amazed and extremely happy to give me the great news that my pet scan was "Clean as a whistle!". I can't wait to tell my surgeon today when I go for a check-up. I believe it has a lot to do with all of the positive thoughts, prayers and well wishes from all of my wonderful friends on this board. You guys are the first ones to share my good news with. Ohhh! What a beautiful morning! Oh what a beautiful day! I've got this wonderful feeling everythings going my wayyyy! Yup! I'm singing this song out loud. I hope everyone has a great day.
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cc4npg - I did TC and can also send you some tips if you do end up doing that regimen. I finished in February and stopped wearing my wig in May. It was short but nobody looked at me strange. There is a good thread I followed during treatment called "Anyone on just Taxotere and Cytoxan?" The threat is still very active and everyone who posts there is getting the exact same regimen. I had also suggested this thread to TifJ and Blindsided.
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Good morning ladies, hope everyone's having a good day.
LJ: Glad you're feeling so well and hope the seroma disappears soon. Take it easy and your fluid output should diminish too. Fingers crossed on your PET.
Titan: Agree, the risks of A to heart are slender, compared with the risk of recurrence for some tumours. Just wondering, did you have MUGA scans before and after AC? My score was 57 and that's exactly where I was at the end too. Your fitness efforts are bound to pay off too.
Heidi: Sorry you're feeling such anxiety. Perfectly understandable. I'm sure you'll get through it, and get good news soon though. Hang in there (sounds lame I know, what else can we do?)!
Kelly41, your daughter sounds like an absolute gem. You must be very proud.
Sugar: I know what you mean about diving in and doing all the things you might have put off before. I signed up for weekly lectures at U of T, am going to start learning Spanish in the winter, and finally volunteer with a literacy program at my local library! Also some trips planned.
monikav: Glad you're doing okay, rest up and keep us posted.
MBJ: Your paella sounds so good! Best thing I did yesterday was take my sister out for her birthday to our neighbourhood pub. She is 2 1/2 years out from her diagnosis. We are truly sistah survivors!
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Laurajane, That is the BEST news! I've been thinking about you all morning and I'm so happy for you.
Heidi, Let us here your results, and I'm keeping fingers crossed that all is fine. Usually the radiologists know. Its like the world just thinks we need a little more stress...
Last night I made my debut without wig. All dressed up, with dangling earring and highest heels, and white/grey hair 1/2 inch long. I've never been good at fixing hair and I'm just sick of the wig. I felt as vulnerable as a baby chicken.
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LJ: That is wonderful news! I'm very happy for you, too. I am too computer unskilled to post a happy dance, but I am doing one for you. Actually, I will go outside and walk (despite the cold; there's snow on the mountains now), and think of you and my other sisters.
It was hard to think of a "best thing" yesterday, as things kept going downhill all day, but I'm off for my 6 mos post-chemo check today and expect only good news.
I liked my really-short, white/grey hair days. I thought I looked chic. But this in-between, growing it out curly stuff goes everywhere. I've tried a straightening product, but I'm too impatient to blow-dry pulling each strand up inch by inch. I didn't wear my wig for long; thought scarves were much more comfortable.
I did TC, too, 4 rounds.
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Laurajane: What fantastic, miraculous news! I am so happy for you! It is a beautiful morning... no matter what weather. I hope your doctors now realize they don't hold the keys to telling anyone how long they have left. That's just not up to them. And I'm glad it's blatantly evident now!
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(((((((Laurajane)))))): I knew it in my heart when you told us about your dream that you were going to be okay! Such very good news! I cannot tell you how truly happy this makes me! YES!!!!
hhfheidi: I cannot tell you how many times I have had an irregular test that upon a second test was fine and I am hoping the same for you! We will all be sending you good thoughts that it's nothing to be concerned about. Hang in there and let us know what happens. Hugs!!!
mittymuffin: I remember my first day wigless, and I felt so exposed but also it was very liberating! I had about a month where I had really cool, short, white hair, but I am glad that I am now looking a bit more like my real self.
Kelley: Out of the mouths of babes! You taught your daughter well and you should be proud of her.
MonikaV: Glad to hear you are home! Rest and heal up and you will be up and about in no time! Gentle hugs.
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laurajane,
Doc Bill is your good luck charm!
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Laurajane: There's a bright golden haze on the meadow . . . haha I am so happy your dream came true and I love the song you chose to celebrate with. Now I will be singing it all day. It is a very bright sunny day here.
Monika: Glad you are home and can rest in your own bed.
Mitymuffin: I bet you looked wonderful with earrings, high heels and no wig. I too am getting tired of the wig. I am really liking how my hair is looking also,
Hheidi: I am hoping you get good results soon.
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Laura jane: That is fantastic news - I am so happy for you! Nothing like proving those silly doctors wrong!!
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Just got back from the gym, my Onc told me that weight loss and regular vigorous exercise are important to prevent recurrance, so I have been working on both of these goals fanatically! I've heard that many people put on weight duirng chemo- have any of you experienced that?
Tifj: I hope that your treatment went well today and that the SE's are staying far, far away!
Sugar77: Thanks again for all the helpful hints!
laurajane: thank you for the words of encouragement, but more importantly, CONGRATULATIONS on your PET scan results! What wonderful news!
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Yay for L.J.!!!! Wishing Heidi GREAT scan results!!
To everyone, enjoy each day to the fullest!! I have been soooooo emotional lately, can't wait for this month to END!
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Hi guys- I'm still in limbo land waiting to hear from my medical oncologist.
I'm not really freaking out. I think it's more just the nasty inconvenience/reminder of how you are never truly confidant you will (or have) beat(en) the beast. So, no firm date for the CTs (six months if NOW for the liver, but March 2011 for the lungs). Trying to decide if I should do liver now and lungs later or both together (and condense the time-frame).
LJ- life is good! So happy for you.
Off for a night owl walk at the nature center now.
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