Calling all TNs
Comments
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Got the answer already, only lab in the US.
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Karen - I continue to do the Budwig diet - one update, I have 3 huge pimples on my face. I am not sure what is causing it, the oil or the ground flax. Now I have to find a balance, maybe use just the one at a time and figure out the amount too. Just to let you know.....
minxie - Oh dear! I am so sorry what you went through today but I completely understand and can relate to your feelings. There is just no way around it, except to hear the news, whatever it is going to be. I am also waiting to hear my mom's result today. I am sitting here at work, but my whole body just goes into a warm sweaty like feeling, huge amount of anxiety as soon as I think about it being positive. My sister wrote me an email with the header "mom's results" which was a reply to an old email. I swear I almost died, trying to open the email. I wish that the people of the world would have been spared from these types of illnesses, but unfortunately, we have to become really very strong and face it. What else can we do? I honestly feel that yours is going to be benign, maybe the area is just irritated by hormones or something. Good Luck, my dear. I am praying for benign results for you and my mom.
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Minxie:
Mounains of love and prayers going out to you. What you went through was what we all fear so dearly. Try to stay as strong as possible -breath - and know that you are getting hundreds of good vibes that this will NOT be cancer.
Teka: sucks so much that you have to wait. Don't these so called freaking "professionals" know what waiting and waiting some more does to us mentally.
Inmate: beautiful picture - you are truly amazing, but the mother and grand-mother in me wants to know WHERE IS YOUR JACKET????????
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Minxie - I am so sorry you are going through this. It hurts my heart to think of you so upset. I hope you get the results soon and that it's just scar tissue. Big hugs!
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Inmate- great picture!
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Minxie - OMG what a terrible feeling, I'm glad you had someone with you. Sending healing thoughts and prayers.
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Teka...so sorry, hang in there..hugs.
Minxie...God, it is all of our nightmares. Hoping it is just scar tissue. Please hang on to the words that th surgeon said regarding it is likely scar tisue. Hell, this is awful. I am so sorry. Hugs and more hugs.
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(((((((Minxie))))))))
Inmate - awesome pic!
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Lovelyface, although I didn't try the Budwig Protocol, I think you are on to something with regard to low estrogen or messed up hormone levels. I suspect that with regard to triple negative bc in particular, there is a chronic low estrogen or an extreme see / saw-ing estrogen cycle that contributes to the perfect storm of low vitamin D, inflammation, inflammatory 4 estrogen metabolites, perhaps even too much testosterone or androgenic metabolites. Reducing inflammation is one of the ways Budwig promotes health, but, in my opinion it is not strong enough to do the whole job. You might want to consider reading something that I trumpet a lot about on these boards: the Edge CAM at no surrender to breast cancer.
http://www.nosurrenderbreastcancersurvivorforum.org/post/UPDATED-EDGECAM!-AUGUST-2011-5424968?trail=20#1
It is a thoroughly vetted and researched supplemental protocol that you can incorporate with Budwig. I love to share this info and even my skeptical doctors are supportive of it, even bordering on boosters of the recommendations. I have done broad research, saw several integrative specialists, several oncs, one of them my bil, all of whom told me I would likely not survive without chemo and rads.
My goal was to improve my health, pass on chemo and rads (I sort of had no choice,but I was stage 1) and never look back.0 -
Teka...so with you ...I just have never understood why we that have had BC have to wait 5 min for results....it is utter bull***.....the med profession needs to cater to us bc ladies and let us know what is going on dang it.....
Minxie...gah..I hear you and feel for you...we all do..the waiting sucks..no doubt about it....
I have a mammo on Monday and I'm already planning on being obnoxious...I've whined b-4 about this...and I plan to whine even more...it just isn't right
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Thining of you sisters waiting on results. This is by FAR the worst part for me. I am thinking good thoughts and sending lots of white light. xoxo
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Hi Ladies.
Thinking of all of you that are waiting and waiting for result. That really sux. Just not good enough to have to wait. Don't they know what it does to us.
LRM1216 - had to laugh at your post. Its the nurturing part of us that wants to keep everyone warm and happy but you are right, where was the coat. Inmate was obviously too happy to feel the cold.
OBXK - why are you so tired all of a sudden. Have you been doing too much? Are you feeling well? Panicking a bit at your post although I see your appetite is ok as your chicken is cooking.
Finally I have come to terms with this bloody Taxol. Still don't want it, but I guess as you ladies did it, I too will have to brave it. If only I could stop my tummy from jumping around.
Have a good day ladies. Get up to everything that tickles your fancy (that means do whatever you want to do). Love and hugs to all and those waiting for results. Annie.
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Inmate - the best thing that happened to me today was seeing that smile on your face
Minxie - My heart goes out to you. I'm so sorry you are going through this....the waiting is such torture. I'm sending good thoughts your way...
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inmate love your picture!
minxie thinking of you ((hugs))
No results yet, hopefully tomorrow for me.
For all you ladies going through test and waiting. ((hugs))
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LOVELY FACE AND PAINTING - I am the one who started the Budwig Diet...I have been on it now for over a month. I loved the results I was getting..more energy, increased WBC and just feeling normal. Now, for the past few days, I have been having mouth/gum issues and general nausea. I am not sure how long one is supposed to stay on Budwig Protocal but I am going to lay off for a couple of days and see what happens. Maybe I now have too much estrogen from my daily regimen. I will miss my breakfast as I have acquired such a taste for it.....adding Manuka Honey, blueberries, strawberries and the Brazil nuts make for a tasty and filling meal. Please keep posting your good results, I do think everyone can benefit..not sure about those ladies still in treatment, they should check with MO first.
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Teka, it sucks that you have to wait. How dare they? I agree with Titan - plan on being obnoxious. I fired my primary care doc yesterday and told the girl everything I felt. My ins. requires me to start with a new doc 1st of a new month. I am without a primary care doc this month, as I was so angry and fired him, told the receptionist, I will never see him again. How dare he play with my health, I had a life threatening disease and he is not watching me as he should. Teka, it truly is a nightmare waiting for the results.
I waited almost all day for my mom's results. GOOD NEWS EVERYONE! My 82 year old mother's lesion is benign. My sister who is not very medically inclined, said the nurse told her that it is just "old age fibrosis tissue". Not sure how that tranlates to whether it is calcifications or what, but I have asked to see the report. THIS IS ONE OF THE BEST THINGS THAT HAS EVER HAPPENED TO ME IN MY ENTIRE LIFE, AS WATCHING MY MOM GO THROUGH BC AT AGE 82 WOULD HAVE BEEN THE WORST THING EVER.
MsBliss - I can't wait to finish writing this post and go check out the link you have sent me. Thank you so much, as I have been trying to discuss this subject for a long time. I have said it to so many doctors already that I believe TN is caused by very low estrogen or that it spikes up and down.
Wrenwood - You know I just feel that to stop taking the budwig diet all of a sudden is not good. Flaxseed is definitely estrogenic, that is why I have got pimples. I can feel the difference in my body, with and without estrogen. We don't want our hormones to be spiking up and down.Stopping suddently will probably have an effect.
I learned this from My Onc. who had told me when I was taking aridimex - that studies suggest that when women take aridimex intermittently that the percentage of recurrence is higher in those women. I would suggest reduce the amounts of Flax oil and cottage cheese to find a balance. Somewhere I had read that there is no harm in taking flaxseed oil and to keep taking the correct amount which makes you feel energetic, for up to 5 years. They are all actually food items and not drugs. But I am trying to find the correct amount to take daily, and trying to find how many times a day I can take it without the horrible acne side effect. I am getting a lot of pain in my arms, and 3 pimples on my face. There is no pain in my breasts, so i feel that this is not acting like real estrogen but it is in some fashion. Tomorrow I will get the results of my recent estrogen, progesterone and testerone blood tests. It will be interesting to see what my blood levels were the day I took the test.
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Ladies I switched jobs so I have been extra busy lately. Just dropping to say I miss you guys.
Ruth-best news I heard all WEEK...
Lovelyface- thinking of you.
HUGS to everyone.
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OK, Gemzar sucks. I had my 1st infusion yesterday. I was feeling good for about 4.5 or 5 he's after the infusion, then........... Chills, 103.5 fever and ER here we come. I am now in the hospital. Potassium,and calcium are low, slightly anemic and waiting for blood cultures to see what happens next.
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Met with my psych this morning. I guess the fit I had yesterday was an anxiety attack. They're giving me Klonopin. I have not been able to eat much and feel like hell. Sigh, why am I such a wimp? Why can't I be strong like everyone else?
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Hey everyone - does your website look different or is it just me? The feed on mine looks totally different and it wouldn't show me your pictures till I logged, something that I didn't have to do before unless I wanted to post.
Inmate - thank you for posting that picture, you look beautiful and full of joy!
KS- any news yet? Sending good thoughts.
Teak - so sorry that your still waiting on results, that is just plain horrible.
Lovelyface - Congrats on the wonderful news about your Mom
Beccad - praying for wisdom for your ER docs and hoping you're feeling better.
Minxie - so sorry for all the fear you're facing right now. You are not a wimp! I think we are all entitled to have what I call the "screaming meemeeies" at times in our journey battling the beast. Please don't be so hard on yourself. *hug*
Titan - sorry to hear about your friends. Even if it's over the phone., I know you be a great help to them. I also wanted to touch on something you said. As much as I'm often displeased with DF, I have to give them big credit for not making me wait endlessly for results. When I have my mammo in July, I will have an appt with my BS 2 hours after to get the results. We also can go on-line and get out test results as soon as they're posted.
I'm battling with my insurance company today, and I think I may win. My nurse manager said she believes that the Utah lab may not be able to balance bill me because of Mass law, but she liked my grounds even better. My insurance policy states "the allowed amount is the amount Unicare determines to be within the range of payments most often made to similar providers for the same service". Well then, the Utah lab is the ONLY lab in the US that can do the BRACA testing (the test is patented) so there is no similar provider that can give the same service, so in my opinion they have no way to say they can compare services and set an arbitrary fee amount. The best way to fight any insurance company, is to use their exact rules and hoist them "onto their own petard" as the old expression goes! Wish me luck!0 -
Good Morning Ladies
I don't think I like this new format. Hard to get around and pictures are not all there. Annie
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Good luck Teka, will be thinking of you and hoping it will all be for nothing. Last one I had the gal was very "gentle" and didn't reposition me either, as they always seem to keep on doing and I needed to get a few extra pics redone too. Fortunately for me, I get my results from my BS right away, so I just had to get undressed again and go back in to the mammo area - but my were fine. Your's will be too!
Linda
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Cocker Sp...
I hate this new format. Hoping taht I'm not just an old dog that doesn't like new tricks, and that others feel the same way. It isn't easy on the eyes at all, and even though the format placements are the same order as before, I just find it totally awkward.
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Okay something has changed. Not sure if I will get use to this.
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Hi ladies, may I join you? I'm 42 dx Oct 2010, AC/Taxol 6 rounds every 21 days started in Nov 2010 finished Valentine's day 2011. Lumpectomy in March 2011 since I had "ample" tissue as my BS so kindly said....then radiation 35 treatments including boosts. After treatment was over I saw a nutritionist in the MO office and went to a vegan diet for 8 months, almost a raw diet....no added sugars, no preservatives, etc. I think I was overloading on carbs, potatoes, beans, etc since I didn't loose a pound! So I added fish back in for no carb/protein combo. I felt like being TN I had to "create" my own medicine.....
I still have pain in the radiated area. I started with nuerapothy during chemo, especially the hands, and am on gabapentin. I find I don't handle stress the same, I still can, but in smaller chunks....I find myself starting to feel overwhelmed at work, home, etc. and have to focus on managing it, didn't have to do that before BC.
I have one DD in college, and one DH who is wonderful, but I think he stills sees me as a chemo patient, like I might break....
I need help understanding the TN portion of this BC, I'm so confused and looking forward to learning from you all.
The new format is strange, but why couldn't they put the spelling check as an auto feature??? That would have been helpful. lol.
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The look seems cleaner, but less functional. What's the sense in wasting a huge column of space along the left side - and why is the type so small as I create a post? (maybe I will get used to it - kinda peeved they sprang it on us!)
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Sometimes I wish all of our doctors and their help had to walk in our shoes for a couple of weeks - maybe then they'd understand just how callous and abrasive they can come off when all we ask for is a little understanding of the fear and trepidation we are feeling at the time. While I love my BS and I love my onc - they both have PA's that should be selling hotdogs from a cart on a corner in NYC at high noon. Sorry, Teka, I really am, that you have had to go through this. We're here for you.
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Teka hang in there.
Lovelyface..wonderful news about your mom.
Just learned my high school buddy who is a doctor has triple negative breast cancer-she is in Tennesee and she said they told her it was small enough not to need chemo...what could this be? In situ. I mean she is a doctor so she must know what she is talking about but strange to me.
Cool and rainy in Rhode Island. Picked some lilacs for the table. Will have Rhode Island dinner of sauted kale (that overwintered in my garden) and onions to which you add clams jsut until they open and add cooked chorizo steaming all in beer. A good cool evening dinner.
Most of you know I am a painter. This week I got into 2 more galleries who will represent me. Feel that this is nice news and makes me think of that instead of my upcoming mammo. May 26th is my cancerversary.
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Annie - I have no idea, why I have the periods of fatigue. Just my new normal, I guess. Bloodwork has been okay.
Lovelyface - great news!
Welcome Sangina! My husband is the same way - I'm spoiled rotten, as a result
Hugs to all of you in waiting hell!0 -
Hi everyone! Thinking of those of you who are waiting for results.
((((((((beccad))))))) hope you start feeling better soon.
I agree with Luah, the left column is a waste of space. I'm wondering if they are moving to something that works better for Smart Phones?
The best thing I did today was attend a gardening session and book signing by a local TV gardening celebrity called "Frankie Flowers." It was packed and I bought his book and had it signed. Even though I'm not into gardening, I attended because I wanted to plant something nice in my garden in memory of LauraJane (...and Suze and MBJ).
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