Calling all TNs
Comments
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gilly, good point about the TNBC survival rates. I'm also surprised that Dr. Carey was quoted as saying: "At 10 years, these patients have an 85% risk of relapse and a 79% risk of death without systemic therapy. With well-delivered third-generation chemotherapy regimens, however, risk can be reduced by 24%, so that their 10-year mortality risk becomes 55%." A 24% improvement on a 79% risk nets out to 60%, not 55%. (sorry, I'm a stickler for math and details, and it surprises me how often people confuse percentages with percentage points, though I sure wouldn't expect it from a scientist; perhaps she wa smisquoted.)
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Inmate - I'm glad you can lose the 'purse' but so sorry that it didn't work for you. For some reason you have always been close to my heart - You and your husband, so creative and so indomitable. I would also love to see some of your designs.
I am so hoping the new chemo is tolerable and does the trick! Trick = kills those nastybastard cancer cells.
Phyllis
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Bak......good luck with your crop. I'll be interested in hearing your great success in cultivation.
Cocker.....we are very lucky here in washington state that it is legal for both medical and non-medical reasons. it has been a great help to my treatment. i just wish everyone could reap the benefits of such a natural remedy for SEs. Go green!
Phyllis.....that was very sweet. I will try to get some pics posted shortly. since i can't work a regular job right now i'm trying to find other ways to make a little extra dough. my jewelry has always sold well in this store so i have hope that i will do at least okay.
Peggy.....yeah!
Navymom.....ahhhhhh dirt. I have finished planting for the spring. new beds = lilac trees. can't wait til next year to see some blooms. my sister and friends all share plants every spring so i have lots of new transplanted beauties to remind me of the love and support i have. happy digging!
It is sunny here today. Have a wonderful day ladies! Love to you all!
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Cocker......as someone who isn't working full time right now I am in awe of you. I don't think I could do a full day yet. I am left to my own devices and try to find "projects" around the house. Albeit the house is a mess right now, but I'm too busy to worry about it at the moment. Busy, busy, busy!
Love to you!
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Inmate and Navy Mom - About the time I started losing my hair with my first round of chemo I got a "bee in my bonnet" to do some yard work one Saturday. I do not naturally do this (my husband does) but I got rid of all the "dead heads" on our rhododendrons and cut away at the dead fern fronds. I remember well how irrationally passionate I felt about this at the time. In hindsight, I think I was trying to take control over something, anything. Get rid of dead things and bring on new and beautiful things.
I did the same thing this past fall 2012 and just a few days ago my husband commented on how many flowers we had in the yard. He attributed it to the mild NW winter we had, but I reminded him of what I had done the past two years. He agreed that my work was likely the cause.
I hope we all can push the deadheads of disease away and find some colorful flowers in our lives.
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I don't think Ohio will ever ever legalize the green...too many conservatives here...but we are allowed to drink alcohol so I will stick with that for now...haven't had the green since my college days and that was maybe 2 times...
so Luah...our risk of dying is 60% in 10 years? I am horrible at math...and is this for all tn's..no matter what stage? wow...this is scary
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I was diagnosed 1/23/13, BMX on 2/28, 2cm IDC, clear margin 1/2 lymp node had microscopic cell, was given option of 6TC or 4AC +12 taxol. went with TC but it seems from reading this forum, that the standard treatment for TN is ACT, especially if there is lymph node involvement. Is there any one else with a few years out who did TC? Thanks
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Titan: Sorry, I should have put that in context. Those stats were cited for stage 3 TN... chemo was said to improve the mortality risk by 24%, and she may be talking about first-line only, I'm not sure. (also it could be that the risk was cited correctly as 55%, and the "chemo benefit" should have been stated as a 30% improvement)
5-yr recurrence free survival was over 85% for stage 1, as gilly noted above.
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Luah - I just sent you a very rushed P.M. I have to get gdaughter ready for school. I know there are typos in it - especially in your name, as I called you Leah! sorry. Please feel free to pm me with any questions.
Sherry
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I am asking for some help here. I've received so much information, encouragement, sympathy when needed - on this forum and on another I correspond with. Here's the situation I need help with. My dear sister has been diagnosed with lung cancer. We're waiting for the results of the final biopsy, then will meet with her MO to find out the plan of action. She REALLY needs a forum like these to go to.
Does anyone have a link to or reference to one she could try? I fear she will not get the support she needs from the face-to-face groups that some locations sponsor. They are not as specific to a situation as these BC groups are.
I thank you in advance for any info you can send me. Nat
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I am so very sorry to hear the news about your sister, and hope that her journey with treatment will be a kind one to her. I know the site "Inspire.com" has a very good breast cancer forum, and a forum for all other types of cancer. Perhaps you can start her there, and, as on this site, others on the lung cancer forum on Inspire might have more suggestions from their own experience for other good forums for her to join. God bless.
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Hi Natl,
You might want to start with "Lungevity", which purports to be the largest on-line support/advocacy group for lung cancer. From there you may find other resources.
Sorry, so sorry about your sister's illness. It's good she has you as a sister because survivors of any cancers are the best resources in navigating through rough waters.
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Hello ladies - Good to see many familiar names, Luah, Titan, Inmate, Bak, LRM, Cocker
Hope everyone is doing well. I am coming back to say Hi. Doing well so far. Recently, another lady at work got diagnosed with early stage DCIS, so I have been helping her understand and I got reminded about my journey. Hers is not TN, but 100% positive for ER, 80% for PR. Does anyone know whether these kind of percentages might be the highly aggressive kind. She has family history of various types of cancers.
Lately,I am not feeling too well, kinda upper back hurts, feeling kind of the same feelings I had before diagnosis. But my tumor markers done in April, were unremarkable, the same low numbers for all the 3 different tumor markers. I am wondering if I should ask for a petscan? I have a small thyroid nodule which, after 2 biopsies were negative for cancer, 6 months back. Last time, the nodule had become a little smaller, this time, it is a little bigger, from 1.8 cm to 2.1 cm. Doc asked me if I wanted a biopsy, I said I will wait for 6 months and get an ultrasound at that time.
I realized this morning, that I have no one, absolutely no one to talk to about these feelings. Who can I talk to? The new lady who got diagnosed, no she is not there yet, she is just getting her first shocks. My kids - they wouldn't understand. My mom - poor thing, she will listen but wouldn't understand. I thought of you, my friends here on this site, who I know would absolutely understand.
I am trying to catch up with reading many recent posts. Luah - I just read your posts regarding 10 year survival. I have to go back and re-read again and try to understand what Dr. Carey said. I hope it is good news.
Remember my support group? We had formed a "newly diagnosed" group in July, 2010 when I was first diagnosed. A group of about 10. I had many dinners with this group but left I think it was 2012. One of the precious ladies had even become my good friend for a while, phone friend. Anyway, she was looking forward to retirement and we had covered many such topics during our long talks on the phone. Then we kind of drifted apart, just for some months. Her husband called me after some time to tell me that she had passed on. This was the most shocking news for me. I am still in shock, unable to believe that she actually gone. Hers was not TN, was positive for ER and she had adjuvent therapy. Tumor was large, she did chemo for 4 months, only to find out the stuff wasn't working, it had not reduced her tumor. So they tried other therapies. At one point she had healed. She was taking aridimex and it suited her well. I thought she was gonna make it. But I guess it came back and killed her. Very sad. This hit me home, really badly.
Is it true that there are less new cases now? Honestly, ladies, I have been in denial for quite some time now. I think I did mention in my posts last time, that psychologically, I think I am trying to run away from these memories and the reality of this. I almost never want to get checked, it is as if I really don't care, which can be really dangerous.
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Lovely, nice to see you back. I think we all struggle with fears and anxieties; they lessen the farther out we get from diagnosis, but all it takes is one little pain and our minds go to the worst. I have a rule of thumb with my docs that I will visit if I have any unexplained symptoms that persist longer than 2 weeks. Since my treatment, I've had a CT of my neck/nodes once and a bone scan of my back. Both negative, and both issues resolved.
I completely understand how you feel about the loss of your support group lady. It happened to me too. And I really think my mind starting playing tricks afterwards, I was just super-sensitive to every ache and pain.
Why not call your doc for a chat, if only for peace of mind; maybe he/she will recommend a scan, maybe not (scans are not without their own risks), but at least you will feel better.
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Reality: I didn't receive any private message. Maybe, try again?
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Hi ladies I'm on lunch break so quick post but I simply must say HAPPY BIRTHDAY to a very special lady called Karen, OBXK. Unsure of the time zones so hope I am not too late. Have a great day with a glass of wine, some green if you can and hopefully your old feller will take you out for a meal or cook you a scrumptious one. Either way hope you enjoy your birthday with many more to come and have a great time. Luv Annie
Hi Lovelyface. So good to see your post. Will catch up with you later.
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Quick check in before I go pack for my wine fest weekend with a girlfriend.... missed it last year due to chemo... making up for it this year.
Good to see you again Inmate - sounds like you are doing well.
I cannot catch up with you all, but wanted to say hi and hugs to everyone xxxx
Oh! happy Birthday OBXK.
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Happy Happy Birthday Karen.... enjoy!
Lovely...so good to hear from you lady..missed you and glad you came back to post...I hear you on the doctor thing....as much as I know we need to be followed for years and years I don't like it either...have a mammo and onc and bs appt this month..ugh...not looking forward to it..especially the mammo...I do feel just fine but you just never know do you...long gone are the days where you went in for your mammo and left thinking nothing could be wrong
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Happy, happily birthday Karen!
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Happy Birthday Karen! Hope you are having a joyous day!
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Karen - My happy birthday greetings, too. Whoop it up!
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ud45 - My dx was very similar to yours; see my signature (my 1 lymph was a micro). I did TAC, all three drugs every 3 weeks for 6 rounds. The T is Taxotere, not Taxol, just to clarify. In my part of the (USA NW) world that is the given standard treatment. I'm not that far out, but I am 16 months post chemo. I personally don't want to "waste" time mentally second guessing my therapy. I pondered whether to choose being in a clinical trial and deliberated over it for some time. I finally decided to go for it, then discovered I didn't qualify. I was secretly glad as it would have extended my treatment. If my cancer recurs, I will not blame it on the fact that I did not qualify (I did not have enough lymph nodes removed). We make the best informed decisions we can based on the information we have at the time. Best wishes and prayers going your way.
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Grammy98 - you are right, our dx is similar. congratulations on 16months post chemo. My chemo is TC(taxotere & cytoxan) every 3wks x 6, my concern is that I am not getting Adriamycin which seems to be standard for tn. I will discuss this at next apt. with MO. I also feel like I did not have enough lymph nodes removed. My MO says chemo will get any cancer cell floating around, but because I had surgery first, there is no way of monitoring the effectiveness of the chemo. The whole process is overwhelming. Thanks for sharing and best wishes.
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Luah & Titan, thanks ladies. So good to talk to you both. So happy to hear you both are doing so well. Luah, sorry to hear you had a few scares. I am wondering how strong you had to be to hear the results. My goodness, that is something I just can't handle, it is beyond imagination.
I had reorganized my eating habits (don't want to say diet), from March 4th and strictly followed the plan. I thought to myself that finally in 55 years, I have finally learned how to eat and lose weight. I lost 7 lbs. in March, but in April did not do well. The food and habits were great, I started having symptoms of that same shaky, weakness type thing I was feeling before diagnosis. It is the worst feeling in the world. I remember seeing many different types of doctors and getting many blood tests, everything was negative. Yes, after 6 mos. I was diagnosed.
Anyway, this time around I feel that maybe I was not eating enough fat in my diet. I never thought like this before. Is it possible that I am not having enough hormones due to lack of fat in the diet? I am seriously thinking this seems to be the case. I ate lots of fatty food today, but by the afternoon still have that looseness, shakiness. Anyone know anything on this subject? I understand at menopause our ovaries don't make reproductive hormones anymore, our hormones come from our fat cells. Is this true? Can anyone can shed a light on this subject, please. Anything? I also have been feeling lots of activity in my neck (thyroid). The nodule???? So scared, so damn sick of this crap. Thanks everyone!!!!!
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Luah, those stats are disappointing and scary. I had seen stats for 5 year survival and this is probably the first time I have seen someone talking about 10 year survival. I was told by my oncologist that if it doesn't return in 5 years, that I am actually "cured". I understood that for TN's, the risk goes down tremendously after the 5th year. So what is this, something totally new talking about 10 year survival for TN's. I am so looking forward to making it to 5 years, once at 5 years, I am going to consider myself "cured". Didn't we all learn that together and talk about it on this website about how lucky we are that after some years, we will not have to worry abou recurrence. By the way, mine was basal-like, which really scares the shit out of me!
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So so cute
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Lovely face,
It could be that you are eating the right things but not enough olive oil. (Also are you getting healthy carbs, protein and fat at each meal?) The Meditteranean Diet has some research behind it featuring olive oil for BC survivors (see The Pink Ribbon Diet by Flynn and Barr.) That might help with the symptoms. As for not losing weight in April, that could be the normal plateauing everyone in middle age hates and it's at this time I have tended to give up and go back to my old eating habits. I've been eating healthy and exercising for three weeks now and lost 5 pounds. I'm trying to gear myself up for the fact that I won't lose that much in the next three weeks.
Also, exercise in the morning, even if you have to set the alarm 30 early is said to boost metabolism.
As for recurrence stats, my MO said that as long I am eating right and exercising I should ignore the stats for TNBC because the research on our type of BC hasn't been going on long enough for the stats to be validated. If I do look at the stats, then place myself in the survivor category. No use worrying about something that may never happen. (Easer said than done).
My therapist, who is an expert in Post Traumatic Stress Disorder, considers the diagnosis and treatment of breast cancer a high risk factor for PTSD. Some of the feelings that are scaring you may be flashbacks. If they are, if you can focus on the sensory here and now, it could help. She also taught me to keep an orange in the freezer and to hold it for a minute or two when i'm very anxious and that seems to help ground me in the present.
I hope that at least something in this overly long post resonates with your intuition about what is going on.
Peggy0 -
lrm216 and PeggySull Thanks for the info. I will pass these along to my sister.
Lovelyface (what a nice moniker)...Sorry you are going through pain and worry. You know everyone on this forum understands and empasizes with you. Please keep us posted. Nat
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Inmate, I've been thinking about you and hoping with my heart that you were doing well. I don't visit this board (or any board) often anymore, but I really want to know how you are doing so I will check back.
Bak, Lovely, Luah, OBXK, LRM216, Titian and all of you, I am so grateful for the encouragement you gave me in the past and I think you are fine and brave. For those struggling through tough treatments, my heart and encouragement are with you.
My Onc has me on a once a year check-up schedule now, which makes me feel a bit abandoned but also happy.
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Lovelyface...I sent you a PM...hope that is OK.
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