Calling all TNs
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Simple...great news!! Thanks for sharing!! I agree greenae, sign me up!!!
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Simple thanks for the link! Just wish they wouldn't put things in like "likely to come back." That's why it's so hard to be positive all the time. I am doing better but still... Even so a vaccine would definitely be AWESOME!!
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I'm another who loves yoga. I have done guided imagery meditation to help with tests and procedures and found it helpful in relieving some of the anxiety. After I finished all tx, I was left with quite a lot of joint pain mostly waist down. After every blood test imaginable it seems I have chemo induced inflamatory arthritis. Not being able to walk the distances I use to be able to and finding myself in a lot of pain just getting up from sitting I thought I would try a gentle yoga class. I'm so glad I did! I've been going since last July and I can't explain the feeling of peace I get. It's like I'm filled with endorphins, it's such a positive experience I know my body is thanking me. I have an excellent teacher who knows how to push me a little but never wants me to feel pain and I see improvement. Two weeks ago I was finally able to do a cobra pose which I found impossible when I first started, everyone cheered me on!
I really believe the peaceful atmosphere, better breathing, increased circulation and flexability help to centre oneself in a chaotic time of dx and tx.
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Great stuff. I'm going to bring this up to my MO on fri when I go for a follow up. A good doctor will welcome our research and challenging questions. Us TN gals are a fierce group!
Nice to see that yoga and meditation is making a positiveimpact on so many of us
http://www.medicalnewstoday.com/articles/271779.php
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i read about that trial, it's in jacksonville i believe and monthly visits. Bummed.
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Ladies, first of all that is good news about a possible vaccine. Massive strides are being made in breast cancer research and especially TNBC research every week.
Please however do ignore the poor reporting on what is an excellent piece of news. The comment "likely to come back" is simply not true. Disease free survival rates are at an all time high for TNBC. I posted last week about a recent study where survival rates for early stage TN now match those of non-TN tumors. Even older studies show that more women survive TNBC than don't.
The fact is its more likely NOT to come back. As a medial researcher and more importantly a husband watching his wife go through this some of the reporting on TNBC leaves a lot to be desired.
Stay brave you all lovely people
Hugs and prayers
xxxx
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Thank you BC husband!
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I love you breastcancerhusband!!Teka=Good luck in May.
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Thanks BChusband! XOXO!!!
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BC husband, THANK YOU!!!
Hi all ...I had my dreaded MRI tonight...and it was FINE! PHEW, WHEW, and so relieved I did not try to scramble out of the machine. (MRI of neck last year was NOT fun!)The xanax worked great and I Breathed and thought calming thoughts, and everyone was so nice...we were actually laughing because the doc had to try 3 times to get my IV...I made HIm nervous??? Anyway, praying for good results tomorro...then onward through this journey. Want to get this junk out of me! Thank you all for your support and advice!
arlene
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arlene, great news. Hoping for good news for you. Glad you were able to "relax" and git-r-done
Bc husband, thank you so much. I knew I felt uncomfortable when I read it. Hated that sentence and kind of put it out of my mind, ignored it. Not our story. XO.
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Thank you, Lisa...And I found a Beginner yoga class at my Y...definitely going to check it out and learn to find ways to attain some peace and calm in this whirlwind.
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Arlene, prayers for good news tomorrow on your MRI! Glad you got thru it just fine.
Also every time I see something about yoga I think of what the comedian Caroline Rhea says which is yoga is another word for try not to fart! Hahahaha!!! I know it helps a lot of folks though. HUGS!!
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hi ladies, i do not have TN BC but my mother-in-law sent me this link that I thought might be of interest; the Mayo clinic is starting on trials to stop reoccurrence in TN BC survivors...
http://www.usatoday.com/story/news/nation/2015/02/...
Take care ladies (sorry if this was already posted by someone else).
Teri
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Arlene so glad your done with that MRI, hoping for good results!
It's very exciting news about the trail-let's all hope results are quick and effective.
I need some support, I'm afraid I fell apart last night-something I havnt done since dx. I had my hip x ray 3 weeks ago, my whole bone scan 2 weeks ago and today I was suppose to go for mammo and ultrasound. I got two calls from the hospital yesterday, first one to let me know I'll be having a CT with contrast on chest and CT on pelvis and abdomen also. Then a couple hours later they called to tell me that I need to get a full blood work up also. My mind is racing and not in a good place. I'm thinking that if my hip pain was bursitis or arthritis they wouldn't be scheduling me for more tests. Something must have shown on the scan. I'm scheduled to get results with my MO on the 11th, but I'm scared. I thought that TN usually goes to soft organs so maybe that's why all the CTscans-to see where it is? Yet it's my hip that's in pain. I really hate these dark worries, it's not usual for me. Thanks ladies for letting me air my fears.
Shari
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Shari, crap! I know it's hard not to be scared right now. I think it's mean and unprofessional that they called you to schedule these extra tests without someone calling you to tell you why they are being scheduled and what the result of the bone scan was. When I start to freak out about things, I try to remind myself not to cross any bridges until they are right there in front of me. We are here for you. Is there any way you could get the results from the tests you have already had done? Right now, your mind is racing to the darkest places because you don't know what is going on. I sure hope everything is okay for you. Let us know when your other tests are scheduled and wear big pockets. I'm jumping in for moral support. ((hugs))
Kay
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thanks Kay, it means a lot. My DH is trying to be strong but I see it's really hard on him- he can't fix this one. I'm having all my tests today which is good as I live 2 hours from hospital. DH is going with me. Having to have an apt. to go over results reminds me too much of my first one at dx. She has usually called me to tell me other tests so this adds to the worry. Sorry have to put a couple hours of work in before I go. Trying to smile.
Shari-da*# it's cloudy here
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Shari, holding your hand and praying for you right now. Last Spring my rib was hurting from coughing and I thought I may have cracked a rib and my Onc told me that IF they did a bone scan and the rib was in fact cracked that it would be positive and more tests would be ordered, and it would freak me out so I didn't have one. So maybe it's still arthritis or something like that.
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Okay, Shari, I'm in your pocket...I'm hoping it's a big one because I'm sure others will be jumping in as soon as they see your post. I'm so glad you are having the tests done today. I hate that your MO wants to meet with you in person to go over the results. The 10th is a looong time to wait. It's up to you, but maybe it might be worth it to you to call her office tomorrow. I'm expect she will have all the test results by then. No matter what happens, you WILL BE OKAY. We are here to support you every step of the way. (((Hugs)))
I just want to add that having cancer turned me a believer of Ativan for those super dark times. Maybe this is the time to pull out your stash (if you have one), or anything thing else that works for you. There's no rule that says we have to deal with the extra scary stuff without help!
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Shari,
I'm jumping in your pocket also.
Marsha
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Shari, All great advice from Simple. I'm on a road trip with DH so not able to make a longer post, but had to let you know that you are in my prayers. Sending huge hugs your way!!
Breast cancer husband, you rock!
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slv= Call you MO office and ask to speak to her or him. Tell them on the phone how much anxiety you have and the MO should call you back and at least tell you what is going on. I tell them at all the test that I am really anxious and then I start to bug them. Each time the thech has given me my results. However, I think that is a violation and they cannot give out results. Even call the office and speak to the chemo nurse. Soemone should tell you what is going on. The fear of the unknown is the worse. I am will you today holding your hand. Good luck.0 -
thank you everyone, it means so much to me to have your support and to be able to freely express my fears. I know everyone here gets it. As we all know, it's hard to really open up and express to our loved ones because we try and protect them from the really dark stuff. My DH keeps saying things like 'don't think about it-keep your mind busy-you can beat it-your strong ' he doesn't want to understand that you can't cure mets. That being TN limits tx for mets. I've thought about phoning her, but I think that being face to face will allow better communication and I know if it's not good, the nurse navigator will be there to advocate and be supportive for me. I can wait till the 11th, it's just not going to be fun but will allow me to think of any questions.
Ok, enough gloom. Time to start my grateful journal again and I think I'm going to see if we can afford me going to yoga twice a week.
I'm going to wear really big pockets, maybe something like this.....(sorry about size and quality!)
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Sounds promising! Let's pray it's the silver bullet! http://www.firstcoastnews.com/story/news/health/2015/02/02/triple-negative-breast-cancer-vaccine/22748819/
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Shari - I'm glad that you have those big pockets because I jumped in, too!
This terrible fear that we get whenever we have a pain is awful! ('cancer-itis') TRY to not let your imagination run away with you. Drs usually prefer face to face visits (more income, maybe??)
Sending hugs and BE WELL WISHES!
BC Husband, - THANK YOU!!
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Shari, even those pant pockets aren't big enough for all of us that are in there. We need some space to breathe! LOL!!! I wish they could tell you something now because we are all waiting and I for one am not patient!!! I'm still holding your hand, hugging you, and praying. XOXOXO!!!
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shari I am jumping in your pockets, too! The waiting is the worst. And these imaging tests all have their faults, and every little "light" has to be "explored." Can't researchers speed this process up??
I am waiting to call about my MRI results. I am at work trying to stay focused and busy. Ha!
I am sending you prayers and hugs. And May all these images turn out to be Fine.
Arlene
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Shari, I'm jumping in that big pocket! I'm so sorry you have such a long wait to find out what's going on. I'll be thinking of you.
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Did anyone catch the name of that receptor they mentioned discovering in the article on the vaccine? Are they saying they discovered that 80% of TN tumors have a folate receptor? So in my extremely limited understanding of that...does that mean we should probably be avoiding folate? Just as those who are estrogen positive avoid estrogen? I could be way off, but I'm curious.
Also, anyone know how to get into this trial? I'm sure they're only taking those fresh out of treatment, but I'm curious what eligibility will be.
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Hi ladies, lots of excitement about the new vaccine. Does anyone know if bc tumors must be present to receive the vaccine? Can those who are NED status receive it/benefit from it? T thought I read where it was for TNBC where tumors are present. But, I do not always know what I am reading. Inspiredbydolce...where are you!
Also, I saw this on another thread, I signed this petition to urge Komen to declare more openly where their funds go, and to spend more on research. Research is giving us hope with this new vaccine! Read the link if you are interested in signing.
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