Calling all TNs
Comments
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Tek - Titan covered Taxol well and she's right that everyone is different. As to overall energy and health I found Taxol to be easy. I know that I had to take a steroid (that the pill you're thinking of Titan?) but it was given to me prior to the injection. I was initially given Benadryl. Benadryl knocks me out cold, and it was what stopped me from going to treatment without someone. (Have no siblings and asking people to take time off from work to accompany me bothered me). One of the wonderful ladies on here told me that as long I had no initial reactions.....that Claritan could be used instead of Benadryl. The Claritan allowed me to go to the last 9 of my treatments alone. I did get severe neuropathy in my feet. One of the things that they recommended at the start of treatment was that I take a combo of B vitamins to help prevent neuropathy (sorry, I don't remember what specific ones, and I can't say that they helped). I also had the joint stiffness that Titan mentioned. I used to refer to it as the "chrone shuffle". The joint pain has gone away, but I still have numbness in my feet, but it is definitely better than the initial burning pain I had. If you get severe neuropathy you definitely need to mention it to your MO. (I only had 2 treatments left by the time it got severe, so I chose to continue......but it is a symptom that they consider switching treatment with)
Annie .....you enjoy housework????? To hell with going there, I'm buying you a ticket to come here! I'll cook you anything you want.
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My PCP (who is not my wife's PCP) has agreed to prescribe Metformin for my wife. So, guess who her new PCP is? We have an appointment with him next Monday. He is also going to test her Vitamin D levels.
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Has anyone heard of "Extend" shakes? I happened upon it in the supermarket by accident. It's a shake for diabetics that claims to control blood sugar for 9 hours. I wonder if it would have any value for my wife since she is trying to stay "low glycemic" with her diet.
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I had an appointment with my BS today which really bumped me out. She said as I developed bc at such a young age (34), they are concerned about my prognosis. 30-40% TNBC will have the cancer come back anywhere else in the body? What the heck?!
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jianchi-
Those numbers don't sound fun at all! Could I ask what your stage was? I'm curious because I was dx at 33 and I'm almost finished with chemo so we haven't had the big "what's next" talk with my onc.
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Hi BreezyH: I am stage 1, grade 3, with no positive lymph nodes. I have 2 more chemo to go, and am waiting for my genetic result which should come back early March.
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30 percent early stageTnBC recurs. This is what i read and hear all the time too. But what does early stage mean. Is it a combination of stage 1 and 2 and 3a?
I hear few stage 1 patients with diagnosis like, no positive lymph nodes, no lymphovascular invasion, clear margins etc have a recurrence/ spread to another organ.
It scares me too. Jianchi- You and Breezy and me got diagnosed at a young age ( from disease point of view). TNBC in younger women has a bad prognosis as compared to women diagnosed after 40.-statistics say. Maybe our tumors are more aggressive in nature or maybe younger women are diagnosed late, hence contributing to those stats.
I asked my MO, and he says, You can't live in fear. Finish chemo and go back to normal life. I asked my surgeon and he says stage 1 cure rate is 92 percent after completion of treatment. No one mentioned a number as high as 30 percent.
But who knows? If I happen to be the unlucky one I will get it again. No one can say. Thats what makes cancer such a deadly disease because, the complete science of the disease, is not yet known... we have no other option but to go by statistics.
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"I asked my MO, and he says, You can't live in fear. Finish chemo and go back to normal life."
Forgive my sarcasm..... but easy for them to say. Little harder to achieve when you walk in our shoes. *hugs everyone*
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Agree with Kathy they don't and hopefully won't walk in our shoes. Nobody can say what your stats are. Grade 1 with no nodes is supposed to be great. All TNBC's seen to be stage 3. I have a 50/50 chance of it coming back and I am stage 3a, but again nobody knows and we are all different. I had four nodes with one of them encapsulated so my BS took them all. I think a part of us will always live in fear of recurrence so our option is to let fear consume us and let cancer take more of our lives from us or go on and live as best we can and push cancer to the back of our minds. I know its hard but as time goes by stats gets better and better. I personally believe that if our surgeon has done a bloody good job and got it all at the time of surgery then we stand a good chance but again who knows.
AL Husband might be a good idea to talk to your doc before your dear wife starts taking stuff for a diabetic. If your wife has a normal HbA1c, why shake it up.
Titan was that a diabolic picture on facebook or what. If you paid me five thousand dollars I wouldn't walk down the road with him. It was obscene. Yuk. Kathy you will have to go on my facebook to see it but if you ever bring one of them home........................................ Have you both won anything lately.
Yep I enjoy cleaning Kath. Always have, except for when I was going through chemo.
I had an allergic reaction to Taxol and found AC was better in the long run because I now have numbness in my hands. Also have lymphoedema in my BC side which is a pain. Trouble is I forget when carrying heavy things and just do it so it's my own fault.
My old feller Alan was doing some gardening today with some help from ................................you guessed it .........Chloe. First she walked off with his gardening gloves, then she took the bottle of liquid fertiliser and he had to chase her to get it back and finally she dragged the little spade he had been using and dragged it all the way up the driveway. He said the sound made him think I was on a skateboard and he expected to see me go flying past. As if. Anyway don't own a skateboard!!.
Thinking of all you ladies on here and wishing you all well and very little side effects if any. Big hugs.
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I was going through a page from MDA website, the link is
http://www.mdanderson.org/newsroom/news-releases/2...
There is this paragraph in the article, which says
"Triple negative disease - breast cancer that is estrogen, progesterone and HER2-neu receptor negative - accounts for about 15 percent of all breast cancers. Currently, it's an area of much research focus in the breast cancer community because: it lacks effective targets effective for anti-cancer therapies; chemotherapy is only effective in about 40 percent of patients; and in those that do relapse, the disease is highly resistant and patients die quickly."
what do they mean by this- chemotherapy is only effective in about 40 percent of patients? we generally hear that tnbcs are in particular more sensitive to chemo as compared to hormone positive cancers.
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IMHO all of these statistics are whacko since they only started seriously studying tnbc relatively recently (compared with BC as a whole population and ER and PR positive BC).
That's why we have so little to rely on after surgery chemo radiation. They just are beginning to truly look at us. That's why we get different stats from different doctors and studies.
At first I went bonkers with the stats that were quoted to me. Then I decided that diet and exercise and certain supplements (e.g. Turmeric, vitamin D) and getting and staying at a healthy BMI, and getting on Metformin was what I would do. I can't control what will happen once i continue to do these things except keep up with the research and perhaps add to them.
Eventually, about six months after my bilateral mastectomy (i had chemo first) I stopped thinking about TNBC stats except in the sense that they, flawed as they are, help me keep my priorities in life on target.
TNBC, thank heavens, is no longer the first thing I think about when I wake up in the morning. I never thought that day would come when I was going through treatment and for months after treatment.
Life is waiting for us to join back in when we can and take the few gifts of BC (e,g., more focused priorities) to make our lives better!
Hugs,
Peggy
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My MO said the same thing and I just rolled my eyes. I was 33 at dx and although I never asked my MO for my prognosis I am smart and know being dx so young doesn't help the situation. It comes down to 50/50 chance it will come back. I live in peaks snd valleys of fear but I just try to push through it so it doesn't consume me. hoping for a good stretch!
My son turns 4 in two weeks and my daughter is reading...great milestones.
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i guess tht is the only way to move ahead.
my chemo is on, 2 more left. just checked my vita d levels which came pretty low.
my oncologist gave me supplements. asked me not to have it during chemo if it makes me nauseated. ( since that is the biggest complain i had through out) i asked him does lack to vitamin d make my chemo less effective and he said no.
can anybody give me a little more information about vitamin d, chemo and cancer
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Hi I am not triple negative but wanted to share this. This is good overiew of TNBC:
Speaker Bio:
Lisa
A. Carey, MD, is the Richardson and Marilyn Jacobs Preyer Distinguished
Professor in Breast Cancer Research in the UNC Department of Medicine,
Division of Hematology-Oncology. In September of 2012, Dr. Carey became
the Division Chief of Hematology and Oncology as well as the
Physician-in-Chief of the North Carolina Cancer Hospital. At
UNC-Lineberger, she is the Medical Director of the Breast Center,
co-Leader of the Breast Cancer Research Program, and chairs the Oncology
Protocol Review Committee. She became the Cancer Center’s Associate
Director for Clinical Research in 2010. - See more at:
http://www.cancernetwork.com/peer-exchange/triple... -
I don't post much anymore, but always catch up with reading. Fear of recurrence is natural, but eventually you learn to set it aside and move on. No matter what oncs say, the truth is, each of us has a 100% chance of recurrence or 0% chance. I prefer to think and hope I belong to the latter group. It's true that BC diagnosis at younger ages suggests a (relatively) higher risk factor, but that can be for all kinds of reasons, for example being BRCA+ (for which there are risk-mitigating treatments) or simply living longer....
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I am still waiting for my genetic result to come back when there are 2 chemo left for me. I had a lumpectomy prior to my chemo. My BS says that if my genetic come back negative, I can be done with surgery, but a mastectomy can lower my risk of cancer coming back to my breast, although it cannot lowing the risk of cancer coming back elsewhere in the body. I am really afraid of more surgery, however, I want to live as long as possible for my family. My son just turned 6, and I keep on thinking how wonderful it will be if I could see him going through college just to make sure he will be OK for taking care of his life...
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Hi luah, I'm also from toronto but I now lived in markham. I'm at stage 3c triple negative, this seems to be such a late stage and recurrence seems to be on my mind everyday. I will finish my last Chemo in two weeks then rad at Sunnybrook. Just very scared and worry on what's gonna happen after treatment has ended. How do you stay positive?
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Hi jianchi, I know exactly how you feel, I pray everyday hoping I can see my son graduate, get married and have kids. How are you handling chemo? We have to stay positive and just pray for the best.
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I agree Luah. Stats are just numbers that stress us out. We all know by now that cancer follows no rules- it does what it wants when it wants. I do my best to ignore the numbers and just live and yes I live in fear (not constant fear) of recurrence just like everyone here.
When someone asks me the stupid question, "so what do you think gave you cancer?" I simply say that I think there is something genetic in our bodies that reacts to outside factors like the environment, food we eat, products we use, etc. and we will probably never know what "gave" us our individual cancer. This is just my opinion of course, but I hope it conveys the message that cancer is a crapshoot- we just don't know. I feel this way about recurrence too. Yes, we can change our diets, exercise and remove certain products from our lives, but will it make a difference? I hope so, but I just don't know. Some of us do have a known factors that can contribute to a diagnosis or recurrence, but most of us don't. When people ask me if I'm "cured", I just say "I don't know." Sorry for the ramble, just the way I feel about things.
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AL Husband please let me know about the extend shakes, I am a diabetic. I have been using the Ensure Lo sugar high protien for now.
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Tif - I'm in the "it's a crapshoot" school of thought also. I know this may sound odd, but I have felt better since I gave up on control. Yes, I will do everything to advocate for myself......but I've accepted that I have no control over what will happen.
Annie - I was laughing so hard at Chloe's antics and I could so see you on a skateboard! Funny that you mentioned it, I'm going down overnight to the casino on Thursday with friends. (I've only gone once in all the time that Mom has been in the hospital and NH). One of my biopsies has come back negative (yeah!) and once the other one comes back.....I'll switch to working like a banshee to get Mom home. The physical renovation needed is just hard work, it's finding good people to provide home care that isn't quite as easy. (I have lots of things outside of her care that need doing, so I need staff here so I can get things like holes in roof resolved).
Ladies I would like to mention something on here that has saddened me lately. I usually don't notice ages on here because it isn't something that pops up in at the bottom of our summary. From the conversations I have noticed how many of you currently in treatment are so very young. It breaks my heart!!! I will be 60 soon. Sure I'd like to live longer, but I'll be okay with being one of the "negative stats" if it gives one of you a shot at a long life with your children.
*special hugs to the young ladies*
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Jianchi-I'm in the same boat, my 3 girls are 7,4 & 16 months. I saw my onc yesterday and we talked about some new symptoms I have and even though I'm still in chemo he ordered some test. He didn't think the results will show mets but will bring me piece of mind and his said that was so important to my recovery after chemo and soon I'd be able to read my body again. That my body has been through so much that with time I'll find that new normal. He really is a wonderful onc and scheduled my test for after my infusion yesterday and one early this morning so I wouldn't have to wait. Really blessed
I'm sure hearing more stats will be hard,but when I discuss it with my husband he reminds me that although the risk of a 33 yr old, healthy women who breastfeed was pretty low, for me it was 100% -I got cancer. It's his way of reminding me the numbers don't always apply.i can beat the numbers! All of us can!
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What gives us cancer? Who knows? Consider this. My wife has two brothers. When her mother got remarried when they were kids, my wife and one of her brothers moved into the step father's house. The other brother continued to live with his father so he could finish high school. So now you have my wife, her mother, her step father and her brother all in the same house. The other brother didn't move in. When they sold the house, radon levels were sky high and had to be remedied. Fast forward 30 years. My wife's mother died of cancer, my wife's step father died of cancer, my wife has had cancer twice, and the brother who lived in that house with them has had cancer. The brother who didn't move into that house has never had cancer. Coincidence? Who knows?
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Oh my goodness, Kathy. I blasted in tears when I read you say:"Sure I'd like to live longer, but I'll be okay with being one of the "negative stats" if it gives one of you a shot at a long life with your children." Please don't every say that again, it breaks my heart. Hugs to everybody.
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BreezyH: your husband is right. I breastfed for 28 months. They say it lowers your chance of bc if you breast feed , and? May I ask why you chose to have mastectomy? I need to make the decision on surgery sooner or later. Thank you.
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Kathy I think it is so for all. I have just turned 60 a few months ago. These are not our choices and we can do nothing but live with them as best we can in hopes we can some day understand they why.
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Hi fellow TNBCers -
I agree with Kathy and Tif on the theory of "its a crapshoot." My mom was diagnosed with BC in 2009 and I think all of her receptors were +. She had a lumpectomy, chemo and rads, and seems to be doing great. After I was diagnosed in 2011 (TNBC & BRCA 1) her MO recommended she have the BRCA test. It came back positive BRCA1. She decided not to have any prophylactic surgery mainly because of her age (turned 80 last year). So far, her decision looks like it was the right one thank goodness. One year after my BC dx, I was diagnosed with OvCa. On the other hand, my younger sister tested negative for BRCA1 (hooray!) and (knock on wood) hasn't had any type of cancer.
Sure looks like a crapshoot to me!
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Jianchi,
Everything moved very quickly after my diagnoses, and when we discussed surgery I received the information about risk of recurrence with mast vs lump & rads. Although they were the same, I thought about new primaries in the other breast. Also, I had smaller breast and a lump. would have taken quite a bit of the breast. But really the biggest factor in choosing the dbl mast was my children and my age. I needed to feel that I am doing everything in my control to get rid of this cancer and prevent its return. There my not be great stats to support this but it was something I had a say in. My doctor (when pushed for an answer by my mom(: ) said that his daughter was near my age and he'd probably recommend the same surgery to her. It makes me sad some days since I haven't finished reconstruction and had issues with the original implants but I know it's just a bump in the road.
Kathyrnn,
We all have a shot! Keep remembering that! Stay positive!
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Statistics. Useful but not the be all that ends all. Fate is fate. Isn't everything a crapshoot? Isn't driving down the road a crapshoot? Some percentage of people who drive down the road get hit by another car and die. Getting out of bed is a crapshoot! Some percentage of people slip and fall when they get out of bed. I'm not trying to make light of anything...but we can attach statistics to everything we do if we want. A trip to KFC could result in us choking on a bone and dying. A bunch of people went to work in the World Trade Center on 9/11, like they did every day for years. Who the hell thought a plane might fly through the window and kill them? My hope for all of you is that you will all put your BC in the rear view mirror forever and live to a happy, healthy old age. Let's all just live each day like it's the last and there will never be a need to worry about when that is.
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Thank you BreezyH. Being Asian, I have small breasts as well. I am just really afraid of surgery...
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