Calling all TNs
Comments
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Wrenwood my darling. I will reply on the blog but for me - no history of cancer ever in my family. High blood pressure, strokes and heart attacks are the norm for us.
I truly believe ( i am not paranoid) it is the toxic environment and stress that is killing us all. They go on about the hole in the ozone layer - please question - sending rockets and satellites into space, does that not puncture the ozone?
I do not want to get onto my high horse but we are from all walks of life. There is only one common denominator - we are triple negative with no known reason.
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inmate-when do you start rads? Will you be doing them in Seattle or Ballard?
AteamNana-I hope you feel ok to post what you want, we are here for you!
Tif-I agree, it is just not right. I am also so sad and mad. Doesn't make sense.
I had rads today and saw my surgeon. I am having my port reinstalled next Wednesday, after rads and then will get my zometa after I get my port. I saw my rads doc today and he said "I worry about you", well, I worry about me too! I almost told him about the 3 beautiful ladies we lost here, but for some reason I didn't. Why would he tell me he worries about me? He did say he wanted me to tell him of any symptoms I have, well, of course I will!
Best thing yesterday-my hubby bought me a bike and we went for a short ride in the pouring down rain! Just like old times!
Heidi-I will be happy to donate for a bench. What should we do for MBJ? I just love that picture of her and her husband, they looked so happy.
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1) Age of DX - 36 then 44
2) How was tumor discovered? 1rst one Self exam - 2nd- Mammogram -
3) Alcohol Consumption per week and type of alcohol-maybe a drink 3 times a year-
4) Smoking Consumption per day and type of tobacco i.e. cigs, marijuana, chew-none
5) Child Bearing and at what age - none
6) Did you nurse your baby N/A
7) Stress levels either from family or work - High, Moderate, Low or combination at different times- High-
8) Exercise- Hours per day and type - Cardio, low impact, Yoga, Other-walking-jogging, sometimes very consistent, with times of no consistency.
9) Any other cancers dx'd before BC-skin melanomas or precancerous lesions-none
10) Rx drugs taken and what kind and for how long? I did take birth control pills for over 15 years started when I was 17? Due to irregular periods-almost bled to death once! They could find no reasons why my periods were so bad. Sorry-tmi!
11) Diet - Normal, Healthy (Organic), Vegan or Fast Food - Mostly vegetarian and lots of organic included, but I eat too much sugar:( I am overweight, but usually very active. I have been overweight since my early 30's before that I was thin.
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Wrenwood-you might want to add family history and genetic results. I had both family hisory and am brca 1 pos.
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Thanks bak, should have thought of that. There seem to be so many things that we need to be aware of...most of all recurrence. I would love to go back to smoking and drinking but so afraid that is what caused my BC. But then again, a friend who was also dx'd w/ TN Never drank or smoked. I know cancer is cancer but it has grown in such epidemic proportions that it is terrifying. Especially for younger women. What a tragedy and to think it could be prevented if it is our water, food, ozone blah, blah, blah it makes me sick.
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Marsha -
What do you mean "I never know the right things to say"???? You sure do - your post was beautiful.
Linda
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1) Age of DX - 43
2) How was tumor discovered? Yearly Mammo
3) Alcohol Consumption per week and type of alcohol - Wine, maybe 1/2 glass, once a year
4) Smoking Consumption per day and type of tobacco i.e. cigs, marijuana, chew - None
5) Child Bearing and at what age - 21 C section, toxemia, 23 Vbac, almost toxemic, 40 C-sec
6) Did you nurse your baby Yes
7) Stress levels either from family or work - HIGH Very very high, I had a lot happen since 06-tons of grief, family disowned, moved 3 times, and a whole lot more
8) Exercise- Hours per day and type - High metabolism, walked, cleaned, always busy 14+hrs
9) Any other cancers dx'd before BC-skin melanomas or precancerous lesions - No
10) Rx drugs taken and what kind and for how long? Birth Control 4 yrs on and off
11) Diet - Normal, Healthy (Organic), Vegan or Fast Food Home cooked, eat on go, lots chocolate-we're talking a bag of choc chips every week plus other, very little fast foodNo real family hx of breast or ovarian. Half sister had breast cancer at age 41, chemo, doing well, never met her, we share a father. Dad died when I was 4 (not from medical problems). My paternal grandma had a huge cancer tumor (slow growing) on face 20+ yrs. Maternal family lots of death from other types of cancer, but not ov, br, or prostate. I am BRCA2+. Half sister is negative. No clue where it came from. One daughter is positive, the other negative.
If there is a link to us all, I believe it is firstly the toxic environment. Everything is treated with something... growth hormones, bug killers, cleaners, fumes from cars. Secondly, stress is a killer and I firmly believe this is a key factor in many illnesses, not just cancer.
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Hi I'm new to this message board. My name is Lydia I'm currently 56 years old, and I was diagnosed with tripe neg 5 years ago this month. Back in 2007, I made a promise to myself, if I made it this far I was going to go to the message boards and offer up some support by sharing a story of hope.
At that time of my diagnosis, Elizabeth Edwards had recently been diagnosed with breast cancer and the assumption was that she had triple neg. The media was rife with stories about triple neg being a death sentence, and the message boards reflected that. I was understandably afraid, as I'm sure you all are.
My family doesn't have a history of breast cancer, my father had prostrate cancer and I had a maternal aunt who died from ovarian cancer at the age of 87. I don't remember all of my cancer stats - what I can tell you is that at diagnosis, my tumor was grade 3, 3.5 cm, and there was 1 suspicious lymphnode. 2 weeks later my tumor had doubled in size to 7cm and my lymphnodes were loaded. A couple of years ago, my oncologist shared with my husband that given the aggressive nature of my cancer, he assumed that I would be dead within months. We're all glad he didn't tell us that at that time :-) Even the most dire of circumstances aren't always what they seem.
I see that your circle has recently lost a few of your friends. My condolences to you and their families. Cancer can be cruel. That said, know that that vast majority of women who are diagnosed with triple neg survive their diagnosis. As someone noted on a previous post, those survivors do not go back to the message boards as they have moved on. Like them, for the most part, cancer has become a distant memory for me. I reflect on it today because of my 5 year anniversary and my recent clean bill of health. Peace be with you, I wish you all positive long term results.
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LydiaT: Your post was an answer to my prayers. I had prayed that someone would come and echo what I had said, and that hopefully that someone would be a survivor out a few years with one heck of a positive story. You, my dear, made my day. Thank you.0
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Lydia- your post is the best thing to happen to me today.
thank you.0 -
And C O N G R A T S ON 5 Y E A R S O U T!!!!0
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Thank you Lydia. We all greatly appreciate posts from those over 3 years out and more. Congratulations on 5 years!!
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hey I'm 3+ years! sometimes I forget that.
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Thank YOU Michele for joining us!!
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Lydia - that's so much for posting. Your timing was great as we really needed to hear this and congratulations on five years!!!
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Lydia. My god, your post brought comfort and hope to me and to, I am sure, a lot of the ladies on this Board. My tumour is also Grde 3, 3.5cm and just lately I have felt myself getting more and more depressed wondering what the future may hold or if there really is a future for me. Five years out yet given only months, this is the best news ever. Just reinforces to me that nobody can say when your time is up only, Him. I am so glad you posted this is the best I have felt in weeks. May you have many many more years to come and may good health, good luck and happiness go with you always. You are a beutiful lady that have given me so much peace and comfort. Thank you from the bottom of my heart. Annie xxooxx
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Thanks Lydia! We needed that.
And Yeah!!!!! Michele for your 3+ years.
A great weekend to everyone!
Isabelle xx
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Thanks Lydia...this is the kind of news that keeps us thinking positive. Every ache or pain makes me think "its back". Now I will first think it is age. TNBC is not the death sentence that some doctors profess it to be. Thinking positive and reducing stress is utmost in preventing recurrence. Congrats on your 5 years and thanks for posting....we all needed you today.
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Does anyone know if Taxotere causes the horrible taste in your mouth? I just finished 3 treatments of FEC and next I have Taxotere alone for 3 treatments. The taste in my mouth has almost become unbearable. I cannot even think about anything else it is so horrible. I've tried everything!! I'm praying the Taxotere doesn't have that side effect. Please answer anyone!!
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Hello i am new to this thread,i have spent the last 18 months on the threads i related to at the time. But now that im kinda of at a good place, i thought why haven't i ever asked or researched my estrogen negative dx. I looked through my pathology reports and cannot find any info on being triple negative or even any hormone info. I am feeling realy ignorant right now about all of this,but i think i better get on top of it!! Can you be estrogen neg but positve with the other 2? i was not given any prevenative neds so i am assuming im triple neg. i left a messege with my oncology and breast surgeon.Any info you can give i would appreiciate thanks
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Lydia. Thank you for those words of encouragement.
Thanks to others for making me feel welcome here.0 -
Remember these questions are about your lifestyle PRE CANCER DX-At least 5 years previous. JUST COPY AND PASTE ONTO BLOG REPLY. MAYBE THE RESULTS WILL BE INTERESTING ENOUGH FOR RESEARCHERS TO FIND OUT WHY THERE IS SUCH A THING AS TRIPLE NEGATIVE.
1) Age of DX - 33
2) How was tumor discovered? self exam
3) Alcohol Consumption per week and type of alcohol - 1 to 2 beer/glass of wine per week
4) Smoking Consumption per day and type of tobacco - never smoked or used tobacco
5) Child Bearing and at what age - no children
6) Did you nurse your baby - N/A
7) Stress levels either from family or work - moderate stress at work, loss of a close family member year prior to diagnosis
8) Exercise- Hours per day and type - brisk walk 3 x weekly
9) Any other cancers dx'd before BC - no
10) Rx drugs taken and what kind and for how long? Lexapro 5 years
11) Diet - normal, occasional fast food
NO FAMILY HISTORY, BRCA NEGATIVE
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Laura Jane http://www.thisisbrowncounty.com/?p=18274
"Laura passed away at her home in Bloomington on the beautiful moonlit night of her 49th birthday on March 10. She battled triple-negative breast cancer for 22 long months, and stayed optimistic the entire time. She was a true inspiration to us all as she fought with dignity and courage. She died surrounded by family and friends who celebrated her life.
Laura was well known as a landscape artist, ...and for more than 20 years, she perfected her expertise on conifers, Japanese maples, rare and unusual plants, Koi fish, ponds and water features among other things. She inherited her love of gardening from her father, a plant aficionado who imported many exotic rare types of conifers and maples from Japan in the 1960s and 1970s, many of which are growing in the Washington Arboretum.
Laura's vivacious spirit will live on through her many garden designs that include the award-winning Wildlife Habitat certified Lester Bushnell WonderGarden at WonderLab Children's Museum. Laura was also a Bloomington In Bloom contest winner for her own gardens that have been featured on the Bloomington Summer Garden Walk.
She was also extremely creative in her works of painting, drawing, sculpting and limestone carving. Her pieces invoke deep emotion and capture the spirit of life.
Laura is survived by her loving children, Sarah Elizabeth Dye, Joseph Shelton Shively; grandson, Thuja Mackey; son-in-law, Douglas Mackey; stepdaughter, Danielle Shively; and her sisters, Susan Searles, Elizabeth Searles, Linda Searles, and Noel Plesha. Laura's faithful dog, "Charlie," survives.
She will be greatly missed by many friends who thought she was "beyond fabulous."
Her parents, Joann Lee Johnson-Searles and Roderick Ansel Searles, and her ex-husband, Joseph William Shively, preceded her in death.
Special thanks to Dr. Anna Maria Storniolo, Vivian, and the staff at the IU Simon Cancer Center. In keeping with Laura's wishes, there will be a Memorial Service held in her private gardens in Bloomington, IN, on Saturday, March 24, 2012, at 3 p.m.
Donations to assist Laura's children with estate expenses and/or Joe's education will be greatly appreciated and can be made to either the Laura Shively Benevolent Fund or the Joseph Shively Education Fund, both at Key Bank (418 S. College Mall Road Bloomington, IN 47401)."0 -
Ok so I live in Houston where the world famous MDA is, but I am not going there. On another board they were shocked that since I lived in Houston I didn't automatically go there. I guess I just was ready to get going, get treated and move on. I like my oncologist and his treatment seems pretty standard to what everyone else is getting. I am stage 1 so I didn't feel the need to go through all it takes to get into MDA. My thoughts were if I was more advanced or needed further treatment later on (NOT!) I would check into them.
Now I am wondering if I should have gotten a second opinion? DId most of you guys get a second opinion? My oncologist did his fellowship at MDA, which I thought was pretty good.
I'm probably just freaking out since I start on Thursday and just need to stay off the internet!
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LydiaT:
Who says there are no angels in human form????? Thank you, we all most assuredly needed your post. I wish you nothing but the best.
Ladies: On the Stage IV thread that announced Mary's passing, a link to her facebook page from her husband, shows a magificent picture of Mary singing some of her songs that she had written herself. Naturally, she is wonderful. Please go and follow the link. This is something I have never known about Mary, even though I have been "knowing" her here on the boards since Sept. 09.
Karbarn: Thank you so much for sharing.
God bless you, LJ, Susan and Mary.....
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1) Age of DX - Age 52
2) How was tumor discovered? IE: Self exam - Doctor exam - Mammogram -Other Self Exam
3) Alcohol Consumption per week and type of alcohol - Have Never consumed alcohol
4) Smoking Consumption per day and type of tobacco i.e. cigs, marijuana, chew - Never Smoked
5) Child Bearing and at what age - Age 23
6) Did you nurse your baby - Yes for 3 Years
7) Stress levels either from family or work - High, Moderate, Low or combination at different times - Highly Stressed with a family situation a few months before diagnosis. I felt there was no way to solve the problem and it was a feeling of utter helplessness, very deep in my heart.
8) Exercise- Hours per day and type - Cardio, low impact, Yoga, Other - Always exercised one form or another - walking at the time of diagnosis.
9) Any other cancers dx'd before BC-skin melanomas or precancerous lesions - NO
10) Rx drugs taken and what kind and for how long? - Never taken any RX. At diagnosis, I was taking Glucosomine 2000 mg. Schiffs Brand, 4000 mg. a day for knee joint pain. This is the drug which gave me eye twitches and pain in the breasts, which I realized after the diagnosis. When I stopped the drug, the pain went away, so I know 100% this high dosage Glucosomine had something to do with bringing about my BC. I wrote to the Tumor Board about this, but my doctor told me that this drug helped me bring BC to my attention. I don't agree. If you research on this drug, you will find that 2000 mg. Glucosomine contains high levels of soy protein/soy lecithin, lecithin which has a direct effect on cells. Ever since my phone call to Schiffs, I find that now they don't have as much lecithin in their Glucosomine. I still keep my receipt for the bottle of Glucosomine which I had purchased from Walmart. Ever since this experience, I have stopped taking ALL supplements, except Vitamin D.
11) Diet - Normal, Healthy (Organic), Vegan or Fast Food - East Indian diet which is basically vegetarian, contains lots of lentils, rice, beans, potatoes, chicken
Any other comments regarding your lifestyle BEFORE DX would be appreciated...lets see if there are any common denominators. - Approx. 4 - 5 years prior to DX, I started using Progesterone Cream, Emerita, Pro-gest 44 Single-Use Packets from Health Food Store. I read Dr. Lee's book re "What Doctor's don't tell you about Pre-Menopause" and believed him about his stand on progesterone. Although expensive, I used this cream on my skin twice a day. My symptoms of pre-menopause were hair falling and frequent urinations. My lab showed that there was high level of progesterone in my blood, but my Gyne. ignored it, although her own young sister had died from breast cancer. I was naive, but she could have stopped me from using it. In fact she sold progesterone cream in her doctor's office. I think I should not have used this cream at all. I had no idea how dangerous it is to use any hormones, even if they are herbal and derived from natural plants.
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OK, now I'm confused. Do we just donate to LJ's Benevolent Fund or her son's education fund? Would that be a wiser, more productive thing to do?
I was going to email the development Director at Wonderlab next week about setting up some kind of escrow account for a bench, but perhaps since this other fund is available Laura would have preferred that?
I'm beat. Taught at the Nature Center today and am going to my son's rugby game tomorrow. Plus I've got another stupid headache from smelling gas when a gas can fell over in my old Subaru.
When we got home there was a big red-tailed hawk eating one of my roosters in the front yard. What a mess!
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Heidi:
If I were closer, I'd be on my way over with a martini for you. Ugh - not a pleasant day and so sorry about the rooster - I can't even imagine.
I agree, I'm confused too as to what we should do regarding donations to the estate, Joseph's education fund, or still pursue the bench. I will naturally go with the flow, but with the indidual funds already set up (or so they seem to be), might that be the easiest way to go. I am open to whatever you all decide.
Since your beat tonight, and rightfully so, rest up tonight and take care of YOU.
Linda
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Lydia T thank you so much for sharing! Congrats on your 5 years. In 4 more I hope to say the same thing!
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Lynda - thank you for the ray of sunshine - we sure needed it!
Kim - I'm sure your doctor is just fine. They follow a protocol. It's only when that doesn't work, that they have to become creative. And that's not going to be a problem for you! Keep us posted.
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