Calling all TNs
Comments
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Re: Neil Cavuto
Hi Everyone! Yesterday I saw my Onc - it's tradition that we do a holiday photo together, and we take him a card and some treats. We talked about the Neil Cavuto story. He said Neil's statement is absolutely medically incorrect. He was appalled at the information Neil had reported, and said he wish he had seen the story. I told him I was part of a TNBC community and that many women were responding directly to Neil, and he was delighted to hear that. He was concerned that the information in which Neil had been presented would negatively impact those who don't know the real facts, and he went on to tell me about the following. He told me about a particular event in which this one lady, whose Onc always used to say "see you in 2-3 months", this one time that doc did not say that because she was doing so well, that the Onc said "we'll see a little bit further down the road." She felt the doc had given up on her, so she gave up and passed a week later. He reassured me that Neil's words are absolutely incorrect, and don't apply to the majority of patients with TNBC, and that whatever her stats were that they were related only to her, and that Neil can't make a reckless statement like that and apply it to everyone, when it doesn't apply to everyone.
He went on to mention how the words that were shared following Annie's death could negatively impact others, from a hope/positive thinking viewpoint in addition to the statement not being true. I've forwarded him the article and my e-mail to Neil. I believe he is also contacting him. So in the process of keeping me healthy, we agreed to have my 100-year old checkup together, of which I responded to him that means he will be 105. So he's got his homework cut out for him, if he plans to keep up with me and live as long as I'm going to.
Ladies, if any of you are still feeling concerned by Neil's statement, please reach out to your Onc - a quick call to your Onc may soothe you and help you, if you are still concerned.
I also agree that we need to go higher than Neil. For all we know, he could just delete our e-mails, but I do think it's important that he says a number of e-mails coming in from our community. I will try to find out, and if any of you can also try to research who is higher up at Fox news that we can contact about this. Perhaps we need to report this to their competing news stations, for them to run the story and provide current information. Then maybe it would get more traction and we could possibly then get a call for a retraction.
If anyone's on Twitter, perhaps you can also form a reply into a short 140 character statement, with a link to one article that supports our views, and use a hashtag for momentum: #fixyourfactsNeilCavuto #CallforRetractionNeilCavuto or anything clever you think of.
Remember all the positive information that everyone has been posting here the past couple of days, and remember anything that your Onc has told you about your own particular case as well.
xoxo
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Hey Luv,
I've been an IBS type gal since high school. It's a good possibility that your bowels have not fully recovered yet! I can remember not eating all day at times for fear of my food just running right through me! I would only eat at home. Thankfully, one of my girlfriends had similar issues so if I went on overnight vacations and such it was comforting to be with her because we'd laugh about our sudden need to go back to the hotel room no matter what activity we were involved in and such.
My stomach is still not my friend, but it doesn't freak me out because for me, this is normal. What freaked me out was getting constipated after taking some of our meds! I don't think I'd ever been constipated in my life!
Over the years, I've found one thing that helped was not to overload my digestive system. I started kind of grazing throughout the day instead of eating large meals. It's not a perfect fix, but it makes a big difference!
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Inspiredby D= I do not know how to twitter however, Joan Lunden was dx with TNBC is August. I am sure she would LOVE what he had to say on national TV. Maybe someone can twitter her. She may know him or someone at Fox.0 -
Thanks for the info Rad! If I didn't have the bowel issues I'd be a lot better off. I've had a wonky digestive system for a long time but I used to be able to pinpoint the problem like certain foods. But lately it seems like things bother it that shouldn't. I know stress makes things worse. I'm just messed up after C Diff. It was just a double whammy for me. I'm terrified of things that never bothered me before. For example if I get something simple like a pimple on my arm or something I'm scared it's going to turn into an infection that requires antibiotics because antibiotics are what gave me C Diff! It sucks and it's so hard for me
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Just shot my e-mail off to Cavuto as well. I watch him often and never considered him an a$$ - now I do:
Mr. Cavuto:
I watch you often and have always been a fan, but to say I am shocked by your absolute ignorance and the horror you have instilled in so very many triple negative cancer gals is just beyond me. I am a triple negative breast cancer gal myself, coming up to my 6th year anniversary this February. While a cancer diagnose changes one's life forever, as I will always be looking over my shoulder for the rest of mine, please know that your comment that "recurrence is inevitable" is so tremendously incorrect and so monumentally harmful to those with this disease and those just diagnosed. It is true that triple negative cancer is the most difficult to treat, and when diagnosed after it has already reached Stage IV, yes, a great number of those cases do not respond to the many chemo treatments we must endure and do not often end well, but for your information, TNBC has a success rate of 70 to 80% and our chances of recurring go back down to normal when we reach 5 year survival - disease- free. While there are always exceptions to every rule and a rare few will recur to go on to Stage IV, and "inevitably" a premature death, most of us do not. You have done a grave disservice, while honoring your friend, to all of the many triple neg women that have, or are presently undergoing, the worst, most aggressive treatments of their lives. No one should ever have to endure the pain and suffering that we cancer gals have to go through in order to save our lives - but save our lives it does. My condolences to you and all those that loved Ms. Goodman as her life was cut much too short. Nothing can hurt her any longer - may she soar high and free.
Linda McMichael
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Luvmydob - My MO ordered a scan for me after I was done with my first treatments. I was going to go crazy if I didn't know I was clear and he said they only did scans if something wasn't right. So, between the two of us, we came up with "a constant pain in my right rib" to request the CT scan and we got it. I hope you find a way to get one to put your mind at ease.
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Thanks Cat! I'm about to get on a plane to go to TX for Christmas. So when I get back, I'm hoping to get some answers. If my Onc doesn't order a scan, I'll have to push my PCP to do one. She sees me every three weeks and I see her next Monday. I'd rather my Onc order one at the Cancer hospital where he is but he never wants to do one. While I do hope this all is from intense stress, it still seems real to me! I know they look at things from a doctor's perspective, but everything isn't textbook either!
Also to you ladies who've sent emails to the reporter from Fox, thanks, and keep us posted on any response you may receive. Hope everyone has a great day. Love all of you more than you know
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that was spot on Linda! Thanks from all of us. Thank you inspiredbydolce as well for allyiur great information shared with us
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Hi ladies! I have not posted before but have checked in from time to time. Unfortunately, the few times I checked in, I was reading about someone's recurrence (or worse), and because I work hard at staying positive every day, I didn't want to be reminded of those possibilities, so I have been absent. However, thankfully, I checked in again and have found this group to be a wonderfully positive, supportive group of ladies, so I plan on checking in regularly now, as no one "gets it" quite like you do. I have spent the last couple years dealing with treatment and reconstruction. I am closing in on my two year diagnosis anniversary and looking forward to the three and five year anniversaries. And Linda, what a wonderfully eloquent letter that was to Mr. Cavuto. You said it with both conviction and kindness. You ladies rock!
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Thank you Lisa and Zenful for your kind words. Was really shocked when I read his tribute to Annie Goodman, just never expected him to be so mindless with his words and just how much they would frighten and harm so many that would read them. One would like to think that a public figure with his stature at FOX News would have researched and would have known the facts before writing and speaking something that held no truth whatsoever. Just saying....
Want to send my very best wishes to all of my sisters on this site joyful and loved filled holidays.
Linda
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I think Neil Cavuto's words have been taken out of context. Apart from those two unfortunate words it was a very nice tribute to Annie Goodman. How do we know she didn't say those very words to him. Knowing the aggressiveness of the TNBC, if mine returned I would probably say at some stage it was inevitable really. I've learn't more about flaming recurrence on HERE than anywhere else so maybe we need to stop and think sometimes without getting words out of proportion.
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Good point, Cocker.
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My xmas vacation starts right now and I am pumped! I have so much wrapping to do these upcoming nights. The kids are freaking out, it's so sweet and innocent
Last Friday I got my 3d nipple tattoo, it was a strange experience but worth it - they look really good. It was a lot of driving for 1.5 hour tattoo. I drove from NC to MD. Expensive trip 250 hotel, 100 gas, 100 food and 800 for the tattoo. I took a friend I met when in chemo - it was my 1st infusion and her 3rd, she was so kind and welcoming, we've become close. Now we've always done dinners, lunches and such. I've come to realize she talks....A LOT. But it was fun
The crappy part was i got a letter in the mail that BCBS did not approve my in for out claim and that my employer doesn't have this on the plan. Bummer but so typical for me.Today when I left from my last surgery post op appt they asked if I wanted to pay my 1800 bill....whaaaat? So now I'm battling it out on that...tis the season. It was pre approved and i've met my OOP so not sure what the issue is.
Other than the typical crap always happening I've very happy today. I am hopeful that I can start to put this behind me heading into 2015.
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Hi Friends,
Just a quick pop in to tell you that I just caught the end of a segment on Dr. Oz, where they were discussing Turmeric tea. On the show, Dr. Weil showed us how he made it, and I went online just now to see if you can buy organic turmeric tea, and you can. Here is the link, and it has over 20 5-star reviews. I'm ordering it now and will report back. For today, I've added 3 big shakes of my turmeric spice bottle to my green tea. LOL Not sure how this experiment will work ... but Turmeric, I know several of you have posted that you are supplementing with it, and they said today it is one of the best things to fight inflammation with. You might also be able to get it from Amazon, but wanted to post this particular link since all the reviews were so good about it.
Edited to add that the shipping is cheaper through Amazon, so if you decide to order it and you have an Amazon account, shipping was cheaper by $2.
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Beware of Dr Oz, he's been getting some heat for not being able to back his "medical claims".
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Exactly, LOL - Dr. Oz has made some outrageous claims before, I seem to remember some criticism about an apple juice claim. So, this information is from Dr. Weil about the turmeric. I found more info on the LiveStrong website and will post it here. http://www.livestrong.com/article/262079-how-to-us...
It says to make the tea, put one teaspoon in 4 cups of hot water. I think I had 1 teaspoon for 1 cup of green tea, so maybe I should back it off a bit. But reporting in, that the taste was not bad. I'm drinking it now. It also said you can add ginger, which is another anti-inflammatory. and when I was shopping for it online, I did see some "turmeric and ginger teas" out there. Anyways, for now, I'm drinking the green tea with turmeric in it. Will let you all know how the official tea tastes once I receive. I used to sprinkle it on my steamed veggies, but I've switched to a raw veggie diet and so I haven't had any turmeric in quite some time.
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JenJen - I just read about your tattoo. Did it hurt or do you not have sensation? Just the past few months I've started getting feeling back everywhere, from under my arms to parts of my chest. I guess it really does take some time for the body to completely heal. I remember my PS saying the tattoo would not hurt if I wanted it, as I didn't have sensation. I never got it, as my husband said I looked great, just like a mannequin, and I also did not get the nipples done either. lol I've seen the photos of women with the tattoo and they have all look phenomenal. Congrats on finally starting your vacation, and you will have to get together an assembly line to get your packages wrapped in time. We are not much further ahead than you either, and have just started this past weekend. I was supposed to be on vacation from the 15th on, but I decided to take on a few more clients before the New Year. My husband asked me what I wanted for Christmas and I couldn't think of one thing, I just told him my health. But I did manage to find a perfume that I wanted to try. I haven't used perfumes in over 3 years now, but I'm feeling a little braver and I want to spray some somewhere, hair, clothes, car ... something! lol
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just a heads up for those with diabetes or warned against blood thinners taking turmeric or curcumin-I quote
"Turmeric and curcumin supplements are considered safe when taken at the recommended doses. However, taking large amounts of turmeric for long periods of time may cause stomach upset and, in extreme cases, ulcers. People who have gallstones or obstruction of the bile passages should talk to their doctor before taking turmeric.
If you have diabetes, talk to your doctor before taking turmeric supplements. Turmeric may lower blood sugar levels, and when combined with medications for diabetes could cause hypoglycemia (low blood sugar).
Although it is safe to eat foods with turmeric, pregnant and breastfeeding women should not take turmeric supplements.
Because turmeric may act like a blood-thinner, you should stop taking it at least 2 weeks before surgery. Tell your doctor and surgeon that you have been taking turmeric."
Source: Turmeric | University of Maryland Medical Center
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Wishing all of you wonderful ladies a very Merry Christmas and a peaceful, happy, and more importantly healthy New Year. May cancer stay away from all of us.
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The information Shari shared is also mentioned within the link I supplied to the LiveStrong website. There is a "When to Avoid" and "Warnings" section on the linked page. LiveStrong is really good about stating benefits as well as risks on many topics on their site.
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Inspired - no feeling at all but it was weird having some other guy than my DH that close to my boob. I only did the 3D tattooing I never got the nipple made.
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Hi Everyopne .... logging on remotely to wish you all a Merry Christmas/Happy Holiday and best wishes in the New Year. We can prevail as strong healthy women in the New Year!
#TNBC Strong
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MERRY CHRISTMAS ALL MY TNBC BUDDIES!!!
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Teka, I love your cat (tree is pretty too!) How big is he? We also have a big cat. There is a stray we are trying to help and he looks like yours a bit. So cute!!!!
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Wishing everyone a Merry Christmas!!
((((((((((HUGS))))))))))!!!!
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thinking of all of you this Christmas Eve, and glad to know I have you all!!!
Merry Merry Christmas
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Merry Christmas filled with love, happiness and health to all of us!
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Merry Christmas everyone!
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Merry Christmas to All! May we have Happy & Healthy New Year too!!
Marsha
Day after Christmas is my 2 years.
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Merry Christmas everyone!! I've been reading but not much posting! I spent a great part of this year doing my reconstruction surgery. I am just 1 week out from my last surgery. I can say that my CT scan in November was all clear! So I remain NED! I want to wish everyone a happy and healthy new year!!!!!
Also, I have been taking 500mg Tumeric for awhile now and no problems!
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