Calling all TNs
Comments
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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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Sly, I like what you are doing with the photographs. I love the thread here A Retreat for Peaceful Contemplation . It's all just beautiful pictures, no talking. I've never posted there, but I enjoy going and looking at the pictures. Have you seen it?
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Simplelife4, thank you! I have not seen it but am going to check it out (right after lunch!) I've been on here over a year and didn't know about it, so a big thank you!
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Yes Maggie - I think you're considered an "oldie" !!!
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Hi ladies, for those that asked about my genetic results, they just came in this morning. I'm BRCA2+. I don't know if this is naive of me, but I see this as a blessing in disguise. Mostly because I feel a sense of closure with the nagging "why me's." But also because I feel like doctors know how to handle these gene mutations, and hopefully I'm getting this cancer out of the way while I'm young and healthy, since I was bound to get it anyway.
As I mentioned before, my hubby and I struggled with infertility for years before my diagnosis. Without going into my whole life saga, we've decided to build our family through embryos adoption. I'm so grateful to have grieved the loss of biological child before cancer. I feel like God packaged this up as nicely as he could for me. My heart goes out to the ladies who have to cope with all that on top of everything else. No questions, I will definitely have my tubes and ovaries out ASAP. Given the fact that I've already undergone IVF twice, already puts me at a higher risk for ovarian cancer, so to me there's no time to mess around.
Do any of you have any good literature on BRCA+? I'm looking to find articles for both myself and articles that I can send to my family. I plan to send a detailed email to everyone letting them know my status and what it means for them. I'd also like to recommend they see their doctors and I'm hoping that isn't overstepping my bounds. This email will go to mostly males, but I still hope they take it seriously since the BRCA2 mutation has higher risks for the male breast cancer. Thanks.
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Inspired: We have the green one was well, but these are "supposed" to be free of BPA and a lot of other chemicals. They are white...
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Allydp, I love your positive attitude and acceptance with everything you and your husband have been through. I'm sorry, but i don't have any information. Just want to send hugs and cyber support.
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Thank you so much, Sly. I really appreciate that. Sending hugs and cyber support right back at ya!
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Titan and LRM216 - Congratulations to you both. Five years out! That has to feel good. I'm 3-1/2 years out and feeling very good, with the exception of having to recently do surgery (latissimus dorsi flap on radiation side due to radiated skin failure). Now I'm looking forward to getting this tissue expander out and new implants exchanged in a couple weeks. I forgot how tight those suckers make your chest feel! Other than this little bump in the road, life is so good. I feel so fortunate to be where I am right now with my health, especially when I read posts from our new TN sisters and those that are battling AGAIN. My heart goes out to you all and I wish you the very best. I don't post often but I do check in to see how everyone is doing. I just feel so fortunate to be on this side of the cancer journey. I do remember living in fear during the beginning of the whole process, and then the coping that happens while in treatment. I also remember the fear coming back when finishing treatment. Now I just live everyday, think about cancer much less, and make plans for my future. To those of you early in treatment or just beginning this crazy ride, it will get better. Cancer eventually won't consume every waking moment of your life.
Feeling grateful,
Kathy
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Titan and LRM216 - let me congratulate you as well. 5 years is fantastic!!
KSteve - Thanks for your comments about this eventually not consuming every waking moment. I just said that to my husband this morning - that it's crazy just how much cancer consumes me and my thoughts. Not necessarily bad thoughts, just that constant fight mode mentality. I look forward to when I can say I'm past all that. Congrats to you as well on being 3 1/2 years out and I hope the rest of your recovery goes quickly and smoothly!
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Ally: Please reach out to ALHusband - he posts on these boards periodically, and his wife is BRCA2+ as well. He went through the whole process of finding this out, and then having to make some decisions with his wife on how best to go about things, etc and I believe he will have some excellent information for you because he did quite a bit of research. He is super nice and has been a big help to us on this forum!
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Hi girls, I don't post much on this thread but do read almost everyday. I had my LMX and ALND last Friday. BS surgeon called today and I had pathologic complete response, no cancer in breast or lymph nodes!!! Yeah! I did do neoadjuvant chemo and my last PET scan showed nothing in my breast or nodes. I would like to know if anyone had PCR and what is the rate of recurrence? I will just live for now, still need to do radiation then my recon surgery, but it just shows you that neoadjuvant chemo does work, at least it did for me! Please let me know of any articles or stats for recurrence rates, I will also talk with my MO and surgeon.
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Gram - I can tell you that in the context of my conversation with my Onc, he said those who have a PCR "they know will do very well" - in reference to prognosis. I'm not sure of any stats outlined specifically for 5 year survival rates based on response to chemo, but instead may have been analyzed based on other factors, such as stage of bc, if lymph node involvement, etc. I do believe you have received the very best of news though and congrats on this result! If I find any articles regarding PCR I will post on here for everyone. Again, so delighted to hear your news!!!
*Update* Here's an article I just located:
http://breastcasym.org/neoadjuvant-chemotherapy-tr...
Excerpt from article: "Overall, patients with breast cancer who experience a pathologic complete response (pCR) with neoadjuvant chemotherapy (NACT) have significant improvements in both disease-free survival (HR 0.48, 95% CI: 0.37-0.63) and overall survival (HR 0.48, 95% CI: 0.33-0.69) compared with patients with residual invasive disease.4 In TNBC the contrast is particularly stark. The prognosis for patients who experience a pCR is excellent, with less than 10% developing a distant recurrence at 5 years, and equivalent to that for patients with other breast cancer subtypes who experience a pCR."
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Hey everyone .... so we've been talking recently about recurrences, how many TNBC survivors there are, where are they ... etc.
I started looking through the start of the TNBC thread and can tell you that I've already found several survivors .... they may not be posting in this forum, but they are either checking their mail (as shown by log on date) or they have posted in other forums, such as forums having to do with reconstruction, helping others with those questions, etc. Some look like they only post something every 3 - 6 months or longer in between their posts.
There are many TNBC survivors - I'm just listing a few various ones (profile name and mini info). No recurrence unless I specifically mention it. There were many more, I'm just trying to give a good variety of different scenarios.
TNBC Survivors
NoniJones - 26 years survivor 1st dx of TNBC ... 2003 new primary TNBC (Both times No Chemo - 1st time radiation)
Phyl26749 - 17 year TNBC survivor (1st time age 42) new primary 2009.
Meece - 11 year survivor! stage 1
PattyPoo53 - 10 year survivor!
Nordy - 9 year survivor! She was dx'd in April 2005 with stage 2B
CinnamonRocket - 9 year survivor! stage 3B
Gorialla12 - 9 year survivor! stage 1
HairSprayMom - 6.5 year survivor! Dx 9/2007, 3b (with a 1cm and 2 cm tumor on the chest wall)
CRS319 - 5 year survivor and Mom is 11 year survivor!
SkiGirl - 5 year survivor - stage 3A
Morgan513 - 5 year survivor - stage 2A
FMAKJ - 5 year survivor (at 6/2014) - Stage 1 (No Chemo)
Scooter-12 - 5 year survivor - stage 2
MichelleS - 5 year survivor - stage 1
Karen3 - 4.5 year survivor (chemo withdrawn because tumor did not respond to 4 different ones)
Anyways, just wanted to post this here to give us all hope. There are many TNBC survivors, we just don't know about all of them.
Hope this news is comforting and wishing everyone a peaceful day!
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Hello Titan
I just wanted to pop in
to offer congratulations from all of us in the UK on your reaching
five years. I know how important these anniversaries are. I also
wanted to say that I have now reached 8 years and 9 months exactly
today and I would hope that would be an encouragement to everyone. I
had a very large tumour and was given a poor prognosis, but here I
am. Back in 2005 I think we were really in the dark ages with triple
negative receptor status. I live normally most of the time but still
realise the possibility of the cancer coming back. I live a simple
lifestyle and rely mostly on a simple healthy diet and an active
lifestyle.I certainly do not
think that I would be alive today if I had not gone through orthodox
medical treatment and had neoadjuvant chemotherapy, a mastectomy and
radiotherapy. At the moment I do not think there is anything else to
keep us alive and certainly not anything that we can take.I do not know why some
of us get mets or other recurrence but it could be that the treatment
we get kills off the fast developing cells and would miss those lying
dormant which can suddenly be activated and start moving round the
body. Cancer is very complicated and with two hundred different types
I do not believe in a magic bullet.All we can do is eat
healthily, get some exercise, try to avoid negative stress, and get
on with our lives.Congratulations on your
thread.Best wishes.
Sylvia
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InspiredbyDolce - I just sent ALHusband a message. Thanks so much! Love the info you gathered on recurrence and survivors on this thread. Thanks for pulling that together!
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Allydp - When I look at your beautiful picture and "listen" to what you say in your posts, you've definitely got the right attitude. You are in the fighter mode at this point of your journey and that is all consuming (as it should be). You've educated yourself and are doing everything in your power to kick this monster to the curb. It doesn't feel like it now, but gradually your mindset will change and you'll start thinking about your future instead of your "now". Having said that, not a day goes by that breast cancer doesn't enter my mind in some way. But it goes away quickly and is usually not a thought that is accompanied by dread or fear. It is a part of me now, but not in a bad way. On Sunday we had just come home from a wonderful weekend of snowmobiling and staying in a mountain cabin for the weekend with our kids (19 and 23) and some friends to see our neighbor being taken from his home by paramedics. They were doing chest compressions while moving him to the ambulance. My husband looked at me and our kids and said "And that is exactly why we live our lives to make as many wonderful memories with our family as possible. None of us know when our time is up." Unfortunately our neighbor did not survive so that was very sobering for all us. I have a different perspective about life after having survived breast cancer but I feel grateful for that.
Keep putting one foot in front of the other!
Hugs,
Kathy
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I love to see people come together like this...........I do not have but a couple friends and even those would not do this....:) My cousin's sister did not shave her head but she cut her hair real short for her and she did not lose any of her hair. I have to admit to you all that I do get jealous when I see the love people show. (sniff sniff, little pity party)
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SB - I can understand how you like friends and family coming together to do something for her, but, I'm sorry, shaving their heads to show support does is not meaningful to me. Their hair will start growing back the very next day. They are healthy and are not going to lose pretty much every hair on their body, never mind eyebrows and lashes. It is so different for those that lose their hair to chemo. You have to deal with worrying if it WILL grow back, the chemo curls, the color and eventually the totally new kind of hair you are left with. This was more for themselves than for her. Maybe they did a whole bunch of other stuff for her - cleaned her house, did her grocery shopping, made meals, went to chemo with her - but to me, those are meaningful things.
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Gillyone I totally understand............I meant as a whole...........my hubby and I had to go it alone and it just warms my heart to see others have so many around them that care...........no matter how they show it. I do agree it is totally different to just shave your head verses losing it. My hubby said he would shave his, but I would not let him. It was my fight, not his as far as hair went.....I was so glad he was with me through it all.
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got it
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I found it heartwarming. I have a college friend that goes to all my chemo's and appointments with me and she makes it an adventure and fun. I have a friend at work that keeps me updated on things and cheers me on. I also get cards from my team and people that stop by on my caring bridge. I feel blessed for each and every one and for you guys.
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