Calling all TNs
Comments
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Tekwriter, I'm glad you are going to a cancer center that has a lot of resources. That's nice. It's important that you have confidence in the people providing your treatment. It also seems like you have a lot of options in terms of treatment centers close to where you live. It is good to have someone you like and trust to go with you to appointments where you are likely to be recieving information about your cancer or your treatment. It helps to have another pair of ears just to confirm you heard what you thought you heard. I also write down any questions that I want to ask and take them with me to appointments with my oncologist. I actually type them up and take two copies. One for me and one for her. That way, she knows the things I want to cover and she is very good about answering all my questions. She likes to add a copy of my questions to my medical file....that kind of surprises me, but doesn't bother me at all. I start working on my list of questions about a week before each appointment. In the beginning, I was so scared and didn't know what to ask so I didn't do this for my first few appointments, but now I make a practice of it. It makes it easier for me to listen to what my doctors have to say, because I'm not trying to also make sure that I remember to ask everything I wanted to.
AC is a common form of chemo that many people with triple negative BC get, but there are also many other treatments. Your oncologist will tell you what he/she thinks is best for you. You can get some ideas of the various treatment forms just by looking at the signature lines under people's names on this thread.
I'm trying to get back to regular exercise. I got kind of lax toward the end of my 12 weekly taxol treatments and over Thanksgiving. I know I feel better if I exercise gently during chemo. Yesterday, I walked a 1.5 miles on the treadmill. This morning, I've already done a mile and hope to do a little more this afternoon. The weather here has been pretty yucky outside the last few days. I'm glad I can workout indoors on days like this.0 -
Hi everyone,
I thought I would join this forum as I am Triple Negative. I have had 3 treatments so far of AC. I have my last on Jan 2. I was told that with Triple Negative and Grade 3 it is an aggressive cancer. I noticed in another forum some women with TN were taking Taxotere instead of Andriamycin. also some are taking dose dense. Mine is every 3 weeks. I guess MO's are different in what they recommend.
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gia44, I wonder if it's because you tumor was 1cm. Do you know if you will be getting another chemo after AC? It's true, we all seem to have slightly different treatment plans.0 -
Hi simplelife4, My tumour was actually 1.5cm but that does not show in the profile. You either have to put 1 or 2 down. I will be taking radiation after I finish chemo. My MO never mentioned Taxol to me at all. I notice yours was ILC. Mine is IDC, maybe that makes a difference. I have no idea. It is all so confusing.
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Welcome gia444 - sorry you have to be here, but its a great group of people here for support! I don't think it's the IDC as I have IDC and I did dose dense AC then DD taxol, and I'll start radiation tomorrow. I have no idea but there are so many different variables and each MO and treatment center is different. It seems all TN have AC and some have taxol and some have taxotere. Hope you're doing OK on AC aka "the red devil"! Hope everyone is having a great weekend - we got our Christmas Tree yesterday & I'm planning on decorating tree today and watching the Packers! I'm on vacation for two weeks - yippee! Not going anywhere and will have rads each day, but will still be nice to have some time off!0 -
Thanks for the welcome LanaM. My last treatment was Dec 4 so I am fine now. It seems to take me about 10 days after infusion before I get over the fatigue and quasy stomach and feel like going out. I admire people that can work through their treatments. The red devil is not much fun but we will get over it....
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LanaM- I think AC (with or without Taxol) is becoming more common. I was diagnosed 3 years ago and given Taxotere and Cytoxan- no Adriamycin. It seems there were more of us that did TC back then. Treatments seem to differ from year to year!0 -
Not sure about that..I had ac plus taxol 4 years ago...was told this was the strongest regimen...I'm glad I had it though it certainly wasn't fun...not very familiar with taxotere..but I hear it's not alot of fun either.0 -
Hello Everyone,
I haven't posted in ages, but have been checking in from time to time. This thread has been very helpful in understanding my experience after chemo. I too have different aches and pains, and I am not quite as worried as time goes on, because I have learned the chemo is hard on bones and joints. I have had a cat, bone and brain scan, all of which are clear. So for me, I need to try keep things in perspective. I pay attention to how I feel; energy level which has been good.,...
.I have had some issues with blood counts being low recently. In fact my reconstructive surgery was cancelled. my chemo was completed in August, so the Doc is scratching his head, which is surprising, because I found out it can take 18 mounths for counts to come back to normal.
I continue to battle some emotional issues, but am getting help for this. I try to stay busy, been doing tons of baking. Made my first ever homemade sweet rolls, and they turned out good....
Someone asked about dense breasts.....I had dense breasts, full of fibroids, I have been through the mill the past 15 years, soo many scares, biopsys which were always negative....until this time. That is why I opted for bilat mastectomy. Oh and my Doc told me his cancer was missed when I had a mammo a year prior to diagnosis. I actually palpated it, but by that time it was 3.8.
This is all life changing as you all know, but it is doable......
I hope everyone is having a good holiday.....0 -
Did you all hear that a new drug (given before surgery) with chemo Veriba or something like that is showing great responses with TNBC.
It has been hard here at my house as we lost our beloved Skittles and my heart has just been broken. I have been having some new pains and I am scared to death to have my pet scan done this week.0 -
Guess I didn't word that right Titan. I meant I just remember there being more (not all) women with the same treatment plan as me at the time. I don't see as many signature lines with TC anymore.0 -
TifJ I had that protocol the second time around.0 -
Stupidboob- Sure wish there was just one "magic bullet" we could all take to eliminate all cancers.0 -
Hi Tekwriter....you can take comfort in knowing that one of the foremost experts in the US on TNBC is at the University of North Carolina. Her name is Dr. Lisa Carey, and she rocks! I have heard her lecture.
Good luck to you and trust your team to help you through this.
Stupidboob... so sorry you had to give up your little Skittles. In your pocket for the pet scan.
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gia44: you had only ac because your lump is 1 cm. was reading this somewhere that if lump is 1cm or less chemo may not be recommended, but since we are triple negatives, leaving the 1 cm thing just like that without chemo is dangerous. so i think AC was given to you. dose dense is the new protocol for triple negatives, but many still follow the three weekly one. DD protocol has 5 year survival benefit of 92 percent and the three weekly protocol has 5 year survival benefit of 90 percent.
AC followed by Taxol is the gold standard for triple negative cancers, my oncologist always insists, but only in the adjuvant settings. however in the neo adjuvant setting FEC followed by Taxol is what is largely used.
My lump is 1.4 cm with nodes clear. I finished surgery and i am undergoing dose dense ac plus taxol.
Third cycle of Ac done and counts have dropped majorly..they got reboosted and the next AC has to get postponed by a few days and its dose titrated by 10 percent too. Dose dense is harsh on the body. i hear dose dense taxol is better..lets see.
wish you all a lovely holiday season... and many more in the years to come
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Thank you BanR for the info. My tumor actually is 1.5cm with clear nodes. My MO never offered me Taxol or DD. I have a friend with the same Dx as me that is not taking chemo at all but TNBC is very aggressive with Grade 3 so I wanted to take it. She said she did not want to loose her hair. I think that is a small price to pay and the least of my worries.
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Welcome to all of the new newbies. Your journey might seen long but believe me the chemo will go by in a flash and soon you will be looking back at it. All the ladies on here are a goldmine of information and will help you all the way through.
Stupidboob I'm sorry you lost your little Skittles. It's always so hard when we lose a pet. Hope your PET scan goes ok for you.
I read an article recently about, I think the Doctors name was Dr Hope Rugo, on how some recent experiments show promise on fighting TN and she hopes the treatment will be available within five years. Earlier would be marvellous if they could but at least they seem to be on to it. So hopefully some hope for us girls.
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Cocker Annie Five years for new treatments? I hope it works; I have 3 daughters and perhaps this will help them if need be. I've lived a good life and I want my daughters to do the same. Oh, and 5 granddaughters, too.
I'm worried about OBXKaren.
Thinking about all you ladies in the warm climate and Christmas. Poor Santa in his Santa outfit. He must be very uncomfortable what with his hat, heavy coat, gloves, boots, beard and all that. Or do you have a lighter weight version for Santa?
Joyful holidays, Jan0 -
Jan I wish with everything I have that, that treatment comes well before five years. You are right it will help our daughters and granddaughters. I have two of each and would hate them to go through this illness.
I too am worried about about Karen. She posted me her telephone number ages ago now and I can't find it anywhere. I just need to know she is ok.
Yep it is very warm here but to me very welcome. I'm not built for the cold and feel it greatly when winter comes so it's nice to warm up my old bones with some heat.0 -
Just wanted to comment on BanR's above statement "AC followed by Taxol is the gold standard for triple negative cancers, my oncologist always insists, but only in the adjuvant settings. however in the neo adjuvant setting FEC followed by Taxol is what is largely used."
I had neoadjuvent chemo and did dose dense AC followed by dose dense Taxol. I had a complete response. I've found that many people with similar stats to mine had that course of treatment. The moral to the story is, you need to have faith and trust in your medical team that they have your best interests at heart. There are a few different protocols for TNBC that seem to be effective for most. We all pray for the magic bullet to be discovered, but until then, we just keep putting one foot in front of the other!
Gia444 - if you have any question about whether you should also have Taxol, then I would ask your oncologist so you're very comfortable with this decision. Knowledge is power, and when you know for sure what went into their thinking, it will probably help you feel comfortable. Good luck with your cancer journey and recovery.
Kathy
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gia444: Just seconding Kathy's point... if you're wondering about your treatment, check it out with your onc and put your mind at rest. Taxol and taxotere are both taxanes; the first can be done on a biweekly or weekly basis; taxotere is usually done triweekly (and is more common in Canada and Europe). There's some research that suggests that taxanes can be particularly effective for TN, but because TN has so many different types, that's certainly not hard and fast. Some women here who did neoadjuvent chemo got a better response from taxanes, and some from AC. Some may be more prone to suffer side effects from one or the other or both. Node involvement may come into play in treatment choices too.0 -
I was dx with triple negative two years ago. I had lumpectomy, chemo, and radiation.Lymph nodes clear. I have a red rash on the effected breast. My oncologist and radiation doctor don't seem to be concerned. Have any of you ladies had this red rash?
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Junebug...this may be weird..but have you lifted anything heavy over your head? I did that a couple of weeks ago and burst a couple of blood vessels in the "cancer breast" ..i was freaking but it went away in a couple of days,,the other breast was fine so I thought it may have had something to do with the lymph nodes removed...but yeah ..I did freak...it didn't itch and the skin didn't change either...
tif and all..not sure what the gold treatment is..wish someone did..lol...a friend of mine with tn and a 3.8 cm tumor and one node involved had the exact same treatment as me..with a 1.8 cm tumor and no nodes...so...did I have too much? doesn't matter...glad it's over and hope that none of us ever have to deal with this again....hey..I can hope...0 -
Thank you Kathy & Luah. I will ask my MO when I go to see him on the 27th why he did not offer me Taxol. I have 1 more infusion on Jan 2 and then the end of Jan I start radiation. My MO did not mention the gold treatment at all or DD. He did mention that if it comes back I would need to do FEC.
Titan, Yes I hope too that none of us have to deal with this again. Like you say. We can all hope.
Thank you all for the welcome. You all are a wealth of information. It is so nice to have a forum to go to. Helps so much in this journey.
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gia444 - just for your reference, I had a lumpectomy on Oct. 2013, and since Nov. I am doing dose dense 4 AC followed by 4 T.0 -
Titan I am hoping right along with you! I love seeing articles about new treatments aimed at TN, yet disheartened at the same time because it will be many years before any of them are available. So many beautiful women that need hope NOW0 -
Hello everyone. Got a call first thing this morning and they worked me in for PET scan so no breakfast. lol going for that this afternoon and for Portal surgery in the morning, Onco on Friday to get the plan.0 -
Jianchi, I have no idea why my MO did not offer that to me. I am only taking 4 AC and then radiation. I will ask him on the 27th when I go to see him.
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Ok, I am trying to find out if any of you were weakly positive on the Estrogen side? During my treatment, I was told that I was triple negative! Basically breezed through all of the treatments, never missing work except to take the treatments!! But now that I'm "all done", the MO through me a curve! He now states that since I was 2% Estrogen Positive that he would like me to take Aromasin for 5 years! I have been reading about the side effects and they seem to be worse than the chemo!! This really has me in a tiff - I do not know what to do, take the treatment or refuse for quality of life and run the risk of recurrence and wondering if maybe I should have taken it!
This cancer is a terrible thing for the mind to have to deal with! Right now, I'm dealing with quite a bit of back pain, which has only appeared since I've finished the Rads, and I was not given any warning that this could happen! Told the MO and he is sending me of OT! He said he saw no reason to do any scans!
This just all scares me more than the original diagnosis and treatment! Any input would be greatly appreciated!
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thank you.................there sure is an emptiness without my girl............:(
Merry Christmas to you all.0
