Calling all TNs
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Saying HI to all my friends here. Thanks for your continued thoughts and prayers.
I talked to my Dr and told him I was scared to wait 2-3 weeks to get
set up on the clinical trial, so he is trying to fast track getting into
it. It has already been almost 2 weeks since they first saw the spots.I want to start SOMETHING by next week, so if they cannot get me
into the trial, then I want to start something else.I had a
pelvic CT, MUGA, and bone scan today. I meet with him tomorrow, get
bloodwork done and fill out more paperwork. He is trying to get me
started by next Wed. I meet with a surgeon tomorrow to plan the port
placement and hope it gets put in next Monday.Inspired - I also have made changes since first dx. I threw out plastic and teflon too! I mainly use iron skillets now. I do use the microwave but try to stay away from it while it is running. I try to stay active. I do frequent walks around our 30 acres of woods and creek with our dogs. It is very steep in areas so I get a good workout. Even a walk up and down our hilly driveway is about a mile. I am trying to add some meditation now to try to control my stress, especially with this new dx.
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Cat...continued support from the whole TN family as well as to all you newbies just joining us or those continuing treatment.
Titan....dancing for joy for not just you and your family but for all of us as you bring us all hope and joy!
Maggie---am I an oldie yet??
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Hello to all, just dropping by to wish those of you having to put on the boxing gloves again - the best of results and am so sorry that this beast has revisited you again. The greatest fear that we all have. And to all the new gals coming aboard - go as aggressive as you possibly can - as you only have this one chance to kill this effing disease. While I realize there are never any guarantees with whatever treatments we go with, at least you will have the benefit of knowing you did absolutely all that you were able to.
Congrats, Titan on 5 years - I am right there with you having hit the five year mark in February. It's amazing to think back to my very first posts on this thread just two weeks after being diagnosed - and believing with my entire heart and soul that I would not see the five year mark. Wish I could say I now feel safe, but, of course, I don't - never will, but life is sure a lot easier. Saw my onc last week for all my blood work, body search (as I like to call it as she goes over all my node areas that are available to the human hand!). She told me I could now come once a year and that scared the bezeezus out of me, so I'm still sticking with the 6 month routine. She was fine with it, but laughed at me. Yeah, this is just a comical sojourn, this disease is.
She did try to ease my mind a bit by telling me that, although she could not tell me that I will NEVER EVER get it back, she did impress upon me that by hitting the 5 year mark, my chances were almost what a non-breast cancer patient's would be at getting the disease. I told her to quit while she was ahead, as there are new gals coming on the board every day and every night - just diagnosed, so I certainly didn't get much comfort from that, lol!
Want you all to know that I think of you all time, hence the reason I read the posts everyday, even though I don't post a lot anymore. Just don't share as much with close friends and family as I do with all of you. Once we form that thread - nothing breaks it.
Love you all,
Linda
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Thanks again, everyone!
Journey4life, all the best to you for this Thursday. I hope you have a swift and pain free as possible recovery.
Inspired, thanks so much again for all the great info. I truly hope to make as many changes as you have. I'd love to be included in your emails and will send over my address. You're absolutely right about making the changes slowly over time though. I always try and cut everything out at once and make this huge overhaul, which never seems to last. Slow and steady next time for sure. I work from home doing accounting and sit quite a bit as well. I've started speed walking on the treadmill almost every day. Feels good to be moving again. My friend actually sent me the Cancer Fighting Kitchen book just a couple weeks ago and I love it. It's got some great recipes and info. And I think I've been on the Crazy Sexy Diet's blog before and remember bookmarking it. I'll have to find it again.
I just took a peek at my paperwork from the gene testing and I don't think they're running the BART test darn it. I'll have to do some googling as I've never heard of it before. Is it something you think would be beneficial for me? I don't like any what if's hanging out there! My panel was called BRCA Plus and included the following: BRCA1, BRCA2, TP53, CDH1, PTEN and STK11. Not sure what the last three are, but the TP53 is the Li-Fraumeni's. It's associated with increased risks of basically all the major cancers and then some. She said it's extremely rare, so rare she's never seen anyone come back positive for it yet, but had to inform me that I ran a small risk based on certain cancers which ran in my family. It's why she recommended that specific panel over just the BRCA's. Fortunately, it's associated with childhood and young adult cancers, which don't apply to my family history. After hearing about this gene, it's given me a new perspective on the BRCA's and has potentially lessened the blow.
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The BART test (as explained to me by my genetic counselor) is a gene rearrangement test ... how she explained it to me was in very simplistic terms: if you have a cake you are baking and you put the ingredients and steps in the wrong order and try to bake it, it will come out wrong. I think they are particularly interested in it, if someone is not BRCA 1 or BRCA2 but had a high risk to be BRCA+ and the test for that turned out negative. Perhaps since they feel there is a tendency for you to be BRCA 1 or BRCA2 they didn't order it.
Here is a link with a short paragraph about it. By the way, my genetic counselor said many insurance companies are now covering this as a standard option with the BRCA testing now, as a Part B that goes with the initial genetic testing for BRCA mutations. Here's a press release about it:
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Cat, I have heard great things about meditation! Would you go somewhere to learn about it or is there a YouTube video you can watch? So how do you like the cast iron skillets? I have considered adding one to the mix because our omelets stick a little in the stainless steel. I know a solution is butter, but we don't cook with it. Do you have to add any thing to the skillet to keep an omelet from sticking?
PS - It's great you have dogs to keep you active, and your exercise sounds fun and you probably get a little bit of vitamin D as well! The cats motivate me to sleep, not exercise.
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Cat/Tina, I hope you can get your treatment started soon. There is a lot that has to go on to be part of a clinical trial and it can delay things by a couple weeks. That happened to me when I first started treatment. I ended up not participating in the trial, but my treatment got delayed while I was getting all those tests done and my results were being sent to the drug company.
Ally, welcome. It sounds like you have done a great job doing your research and you are well on your way with treatment now. It's a lot to digest in the beginning.
Linda, congratulations on your five years. It's wonderful hearing of people hitting the five year mark. I appreciate you posting about it.
Inspired, I use an Angel juicer and love it. About a week after I got diagnosed with TNBC, I told my husband I wanted two things. A beautiful set of wind chimes we had seen at a local Amish garden center and the Angel juicer. I had never even juiced before! He bought me both right away (he's a real keeper) and we've been making juices several times daily ever since. I call them my V-10's because they usually have about 10 or so ingredients in them. A typical juice for me has tomatoes, cucumber, chard, carrots, alfafa spouts, garlic, apple, mango, lime juice and spinach. I sometimes add things like broccoli and the bottoms of asparagus spears too...just depending on what we have on hand. I try to buy fresh organic as much as I can. I take the "grindings" from my juicer and add them to our worm farm, so even the dirt I use to grow my herbs and veggies comes from (mostly) organic compost!
I also quit using teflon pans. We mostly use glass pots and even frying pans made by Corning. One thing I did was install an undersink water filter. (I asked for that for my birthday.) We live in a rural farming area and I think there are a lot of fertilizer contaminents in our water. I'm pretty sure that's the case because my sprouts grow much slower when I use the filtered water than when I use plain tap water!
I have to say that for some reason, after I got pretty good path results after surgery and talked to my MO about them, it has made me a more lenient in what I eat. We just went out to eat tonight, and I ordered lasaugna. I normally don't eat any dairy, pasta, or meat that is not free range. All of this eating "bad" has started up in the last two weeks. It's okay with me to do something like that very, very rarely, but I love the way I've been eating since I got diagnosed. I want to keep that up. I think I'm less scared of dying as I was in the beginning, but fear can be a good thing. It can be very motivating to keep up good eating and exercise habits. It's done that for me, and I don't want that to stop.
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"Most women with triple-negative breast cancer never have a metastatic recurrence or a new cancer." It's nice to have that to refer to, if you have a worrisome day and a doubt pops up in the mind!
This is nice, but I am finding that I think it might be equal as there are so many of us that are having them. Here on this site and other people too. I sure hope they find a cure to this darn disease...........I am so TIRED OF IT!!!
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Debra, I have also replaced my Teflon with stainless steel. Omelettes are a problem, so I tried my la creuset braiser. It works really well if you add a bit of olive oil, eggs just slip right out!
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Topic: Teflon pans..............how many of you still use them? Do you use them when scratched? True feelings?
We were trying to go to the "everything free per say" ceramic ones but finding the more we use them the less they work. I loved them when we first started using them and now even though we followed the instructions they are starting to stick. -
You've got such a great healthy attitude Simple! I also had spaghetti recently - and an enchilada!
That is very interesting about your sprouts growing slower with filtered water! I'm considering getting one for our sink too!Here is an amazing story from the Longterm TNBC survivor thread - I am posting it here for inspiration. Her name is MercyGirl and it was posted in January (I think).
"Hi ladies, hold on to your hats! I am a 62yr old , 4 time, yes FOUR time, TNBC survivor. My journey began 23, yes TWENTY THREE, yrs ago!!! I was 39 yrs old with one child which was born when I was 18yrs old. So keep your chin up, your ears and eyes open and your mind on the future. I was sure I had been handed a death sentence all 4 times. But, by the grace and mercy of God, and a great medical team, here I am 23yrs later watching my 9 grandchildren play in the yard, taking care of 2 adorable dogs and a dozen chickens. Life isn't over it just gets a little bumpy sometimes. I'll be glad to answer any questions about my diagnoses and treatments. Feel free to ask."
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Ally - wising you luck on your journey - you certainly have the right attitude to move forward and beat this. You found the right thread for information and lots of friends to help you through this.
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Ladies as you all know I have fought two rounds with this evil disease and I am just plain wore out...........how long until you get your strength back from radiation? I finished in September but I still find myself just BLAH and TIRED. I have some real bad soreness that has started, had it checked out because I felt lumps and all was clear at the time. However, today I am hurting and it is throbbing when I bend over like the cancer did. I see the oncologist Tuesday but have you all dealt with this. It is really bringing me down.
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I hear what you are saying StupidBoob, I too wish and often pray they will find a cure. The Moonshot Program at MDAnderson - is supposed to be a big step towards a cure for us. For those of you that don't know about this program, here is a link: http://www.mdanderson.org/about-us/facts-and-hist...
I once figured it this way: If 232,000 women are dx'd with breast cancer each year and if 15% of those are TNBC, that is approximately 35,000 women. On these TNBC forums collectively, even if we estimate annual new members to 1,000 at bc.org and of course let's not forget Facebook and all other sites collectively combined - that number is still so significantly below the entire TNBC population count. I think the survivors are out living and enjoying their lives.
Recurrences may seem prominent on here because we don't have the survivors checking in on here, the ones who are in that population without a recurrence, who don't use any of the breast cancer boards. This is a small population on this site. Like treatment and drug trials, the larger the scale of the population in a trial, the higher the statistical sensitivity.
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Shari, yum ... what time's breakfast tomorrow?
That looks great! My husband discovered a trick ... we put the omelet in the stainless steel pan and right as the base of the omelet starts to solidify, he puts it in the oven on low broil. That is the only way we know how to not get it to stick. He has no idea why this works. Your pot is pretty ... what is this braiser thing you speak of? Is that ceramic on the inside? Also, did you know that white coffee mugs could have lead in it - it can be in the clear glaze. We switched from white mugs to glass from Libbey, which advertises being lead-free and made in the USA. -
StupidBoob, did you have to first season your pans prior to the first use? Will that help restore them so that they work better again?
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Maybe this should be in a different thread, but I didn't know where. So I've been reading on here quite a bit and I'm getting a bit freaked out by the ladies here who were diagnosed with lesser stages and/or grades than mine, but within a short time end up with mets. I DON'T understand unless something is being left out if their biography.
Therefore, I may find that I need a break from BCO to gather myself. I'm still dealing with aches and pains and therefore Mets is always in my mind.
Mostly I have found comfort here, just need to take a break.
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Hi all. hoping i can get through this without too much trouble but just had to chime in. sorry for typos and spelling it just takes too much out of me to try to coordcinaqte words and spell check and once i have to go back to correct i lose my train of thought or patience. frustrating.
interestingly i had just started taking liposomal vitamin c before my brain tumor manifested. probably just bad timing but i wondered if perhaps the vitamin c aggravated the tumor or attacked it somehow. i started reconstruction in january and feeling good unitl two weeks ago. part of my plan was also to eat better and keep up supplements, despite almost every known study showing that NOTHING is known to help prevent reoccurence other than one proven fact. -alcohol. people feel better, they look better, they are healthier but reoccurence is still a mystery. my cousin is also triple negative and went 20 years without a reoccurence but was diagnosed the same week I was with more cancer.
its just so hard to take. we never know who or why or when. all we can do is try to keep positive and do what makes us feel proactive.
I wish i could write better or clearer. will try to explain later when brain recovers. But with that said, I did Maitake and turkey tail mushroom capsules all year and had wonderful blood counts even wthorugh chemo. When i went off antioxidents before radiation and surgery, counts dropped immediaqtely. I also eliminated most plastics and use iron skillets and ceramic skillets. olive oil works wonders and a well seasoned pan is better than teflan.
I use a Ninja blender and love it. Kale smoothies and green juices. Walk everyday. But the roll of the dice was not in my favor. I will continue to do the things thaqt make me feel better for my health. If anyone wants to learn how to make liposomal vitamin c, there are plenty of videos on youtube. I would recommend usuing sunflower lecathin. you can make it with an ultrasonic jewelery cleaner. I still have a jar in my fridge that when i open is staring me down. I just need some time under my belt again to become mentally strong and tell myself I can do this.
wow I am getting better. practaically wotrte a book!
Love to all
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Inspired.......................I sure hope you are right.......:)
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Nettie, you are right - there is a lot that we don't know about the pathology reports of each person - all of which may impact prognosis and course of disease management. Here are just a few things that could impact each person, that we don't have listed under our signature line:
Size of tumor: They are rounded on here to a whole number, so someone with a 1cm tumor, may have a tumor that is actually 1.9 cm.
Lymphatic invasion: We don't know if someone had lymphatic invasion - when cancer cells have invaded into lymphatic vessels
Nodes: Sometimes people have a small micromet in a node that is still sometimes selected as node negative on the profile because there is no micro option
Margin: Clean vs dirty margin / Width of margin
Location: Tumor Location
Family history / Age / Overall Health / Characteristics of Individual Tumor
Scans ahead of treatment: Perhaps someone who was dx'd early stage was really a later stage unknown, due to not having information from a scan
It's hard not to compare ourselves with others, but remember pathology reports are usually minimum 1 page in length with extensive detail about the person's case.
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Bluebird, you're so funny! You wrote a great novel - I enjoyed every single word of it. I hope you continue to get stronger and post more here.
Oh, I wanted to add that before my dx, I had started taking Synergy vitamins. There was quite a bit of unusual stuff (and lots of different things in it) and then shortly thereafter I was dx'd. I'm suspicious of them, wondering if some of those ingredients interacted negatively once they are in the body, so now I won't touch anything from Synergy. I was scared to try supplements for a while thereafter as well, which I guess is why I went to the Garden of Life brand - all from whole foods.
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so right dolce
someday i will also tell of my expereince regarding my brain tumor emergency. If i had a choice in the matter I would have given up to death gladly[. husband kept begging me to stay and I saw lines of silver holding me here despite wanted to go. I had no drugs on board,they won't give you anything for pain since they need to check reflexes and pupils and it was definatley an out of body expereince that I would not wish on my worst enemy. don't mean to scare anyone but please all listen to your bodies. i thought i had a sinus infection with headache and within 2 weeks almost died. if you don't feel well or are concerned, go see your doctors
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Nettie...I hear you on the freaking out......not sure what to say to calm you...because really we just don't know...and our onc's dont really know either...BC is sneaky as heck...I'm at the point now where I tell myself if it happens..it happens...I just can't let myself dwell on it anymore....I just don't have room anymore to let "it" in......it is very hard to come on here and see friends with your stage getting mets....all you can do is support them....if you can...you don't have to if it feels better to stay away...we all have to do what is best for us....I'm still here after 5 years..and have seen alot...but I still keep coming back....
Love you all!
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Bluebird, you also had vomiting or nausea with those headaches, right? Do you meet with your team tomorrow?
You are so insightful - we have to be our own advocate. If something feels off to you, follow up with your medical team. And, if they are not concerned, and you still are, keep going until you can find someone to give you the answers you need.
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Inspired: I will have to get the paperwork back out and see if we had to season them...............I don't remember. I don't think so, but we may have.
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Love my iron skillets - very easy to clean, plus you get extra iron in your food. I just use a little olive oil.
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StupidBoob - are those the green skillets I've seen on TV with the new coating? A few weeks ago at the gym on Modern Marvels, I watched how the cast iron skillets are made. It was an interesting process if you can believe it.
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Someone asked about meditation. I do it a lot....on my own & with my yoga.
Everyone's body has it own cadence or rythym. I have found tonal music with the beat that fits my body. I position myself comfortably - turn on my music (setting it to repeat song). Let myself relax clear my head, chant & go into my meditation. It rejuvenates me. It helps balance my thinking. I also love the singing bowls. The vibrations from them is a definate healing experience.
Inspired you meditate. How do you set yourself?
My daughter can just close her eyes slowly chant & she can start meditating within less than a minute. It takes me about 4 minutes to get into it.
I learned from my yoga practice.
I was supposed to go to a survivors luncheon this last Saturday, but I woke with a full blown pollen allergy attack. Eyes, sinuses, ears all a mess. My other BC yoga buddy said it was not positive for her as too many brought friends etc. therefore not favorable for candid discussions. Oh well.
It was 88 degrees here yesterday. Hot!! No spring this year. Quick 40 minute shower today then hot & humid.
Getting my little garden in before heat kills them before I get veggies.
Take care all. Those in need always in my prayers.
Marsha
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Debra a braiser is a style of pot. I love it and use it as a frying pan, a wok, to "braise" chicken and sautéed things. It's very versatile and does eggs really well. I also have a cast iron frying pan but I don't think it is seasoned enough because my eggs always stick :-(
Thanks for the tip on white ceramic mugs, I didn't know that but am always leery of ceramics made overseas.
I'm finding the discussion on meditation very interesting and plan on trying. I have used positive imagery throughout my journey with the help of some good podcasts. Bernie Siegel is my favorite. I'm listening to an Ebook right now that I'm finding very positive about how your emotions can help with healing, it's called "return to wholeness, embracing body mind and spirit in the face of cancer". I'm borrowing it from the library.
Nettie, I feel your fear. I wish I knew what to say, but I think Titan said exactly how I feel. I just don't let myself waste time worrying. I've come to peace with my diagnosis and plan on grabbing every bit of positive I can. I found that keeping a "grateful journal" REALLY helps! Every day I look for the best things that bring me joy to write in my journal. This has made me feel very open to the good things, always "searching" instead of allowing any wasteful moments in the dark place-if this makes sense. Some days all I can muster is a photograph, but those days are few. My daughter and I are really interested in photography and are starting a mini course tomorrow, but I had this idea that I'm excited about and was inspired by my journal. Every week we will choose one pic that we have taken and at the end of the year we will each get a book printed with our 52 pics, and exchange books! This will further keep me looking for the beauty in each day and will allow me to share this with my daughter and vice versa!
Today I'm grateful for all the wonderful Ladies who participate on this thread, I love you all and send positive affirmations and hugs!
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Hi Everyone! Lookingforward, I do not meditate. But on the Triple Negative Risk Reduction Plan (prepared by Legacy Health) that I send out, it says:"Tai Chi/Chi Gong Yoga or Meditation have shown to also be helpful to improve health and outcomes". At my breast center there is literature that says music helps to strengthen immune system.
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