TRIPLE POSITIVE GROUP
Comments
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I don't know WHY my computer always changes it to 'Follies', when I want to say 'Lollies' , contributing to the fact that I think that it is a subliminal message from my 'puter, telling me that they COULD cause tongue cancer. My Folly. See how bad I can get? Hug
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I went to crazytown long before my bc dx. The funny part was the illness I was convinced I had was heart problems (due to bizarre palpitations during menopause). Besides my regular doctors and trips to the ER, I also spent too much time visiting Dr. GOOGLE. So just as menopause came to an end and the awful palpitations stopped, I get bc, which I wasn't even concerned about. I think this has helped me to spend less time in crazytown now cause I figure I can't waste time worrying about every ache and pain. Its the stuff I can't feel that will sneak up and get me.
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I loved the life of ignorance pre diagnosis. It's really a shame that I don't think life will ever go back to normal in terms f fearing cancer all the time. But luckily I have a life to fear
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I bought a couple of lots in crazy town and built a mac mansion there back in 1990. I was convinced actual parts of my body didn't really belong there and were growths. Because I'm small I could feel all sorts of things under the skin which were actually body parts. I only visit my crazy town properties occasionally, but I did stay there for a while, earlier this year when I was diagnosed again. I think I left a suitcase there
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Elaine, I take Calcium twice a day too. In the morning it's in my multi vitamin and then 600 mgs (+D3) in the evening. My Dexa showed normal but she recommended the extra Calcium plus exercise to keep my bones strong. I'm pretty sure I don't get another Dexa for two years.
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Thanks, Mommato3! I've started taking it twice a day as well. I've also been taking my son to the pool every day. Hopefully, I won't progress.
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Runningcello this is not uncommon. I recommend you get some counseling. BTW are you on an AI or Tamoxifen. I know Exemestane has a SE of anxiety. Both Exemestane and Anastrozole have SE of depression. Not as common but this could be part of the issue.
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saw the PA of my MO and we had a nice chat about all the stuff left hanging with nurse. She told me I could have the opposite if hot flashes which I do, very normal she said. Also the swelling and rashes from the arimadex and hercepton, really got some good explanations which I think was very good for me and if they were only forthcoming I think we would all be better off. Have a great fourth
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I'm taking tamoxifen but I don't experience anxiety ... I think I just have a fear that it'll come back & I want to be proactive. Also, thank you all for your funny stories of visiting crazy town
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stephmoen, I am on Tamoxifen, although I am having a total hysterectomy in Sept then will switch to an AI. These meds are just for the hormone positive part of our cancer....Her2+ is just treated with the a herceptin and Perjeta!
Kathy
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I am leaning towards oopherectomy I just want to do everything possible and I am lucky enough to have 2 beautiful kids..I am now on Exeffor and Xanax it helps I have stopped the chronic googling obsessing and crying when I look at my children trying to live in the moment it's so hard but I know everything happens for a reason this has made me realize how precious everyday life truly is
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Runningcello I would still seek counseling. So many women are on anxiety meds from the start of diagnosis so they don't experience the "what ifs." Speaking of "what ifs" here are a few of my infamous speeches:
seat belt speech:
You don't assume you will get into a car accident every time you get in your car. You do put on your seat belt and drive carefully. Same with breast cancer. Eat right, maintain a healthy weight, exercise, and take your hormone therapy (if prescribed). No reason to think you are going to get mets until you actually have a symptom.shit happens speech:
Some people win the lottery and become millionaires too but do you really think that's going to happen to you? Shit happens. Sometimes good shit, sometimes bad shit, but most of the time shit doesn't happen. Don't assume shit is going to happen to you.What If
Remember the word "if" is in the middle of the word "life" for a reason. As long as you have life you will always have "what ifs". It's your MO's job to worry about those cancer "What Ifs"0 -
lago - you added a third speech, I had the seatbelt and shit happens ones memorized, but now a new what if speech - excellent! I like it!
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I also approve!
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Steph, I finally decided to do an ooph. It's scheduled for Sept 25th. Initially I didn't want to do anything drastic but there's no way I want to do Zoladex shots every 28 days for the next 5-10 years until I hit menopause. What would be the likelihood that they'll change their minds about OS + Tamox/AI?? My GYN had suggested removing everything. I decided that wasn't for me since all this is preventative. My luck, I'd hav all kinds of problems if I removed my uterus.
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I've had the "what if" out there for a while. Guess I never posted it here. Glad you guys like it.
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Thanks for sharing the speeches, lago
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Dumb question about compression sleeves for flying.... Do you only need a sleeve if you've been diagnosed with lymphedema? Or, do you also need a sleeve if you're at risk for lymphedema? I had ALND on January 12, but have not developed lymphedema yet.
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Elaine - the sleeve and gauntlet for flying is for both - preventive for those at risk, and necessary for those diagnosed with LE. Don't wear a sleeve on a plane without hand protection too, otherwise you may force swelling down into your hand which can be hard to get rid of. A medical device company can measure and order for you - or if you are fairly average sized you can order off the internet. I found differences in manufacturers - initially I tried one brand and it was too tight - tried another brand in the same size and level of compression and it was much better. Have you seen a certified PT?
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Thanks for the info., Special K. I haven't seen a certified PT yet, but every time I visit MO and RO, they check for lymphedema. My breast care center has a certified PT, and they'd be happy to refer me to her if needed.
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Elaine - I would have a consult with the PT. Even if it is a one-time thing the PT can give you good info about preventive care, flying, etc. Mine was the one who indicated the compression level based on my situation, while the medical device company did the measuring for the sleeve. It might also be helpful to have the PT's baseline measurement of your arm so if you have future swelling you will know by how much.
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Yes, I think I will call the nurse navigator on Monday and see if I can schedule an appointment. RO's nurse did take a baseline measurement of my arm before radiation. Thanks!
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Elaine - the type of measurement that a LE certified PT does could be a bit different. I had measurements taken at 1cm intervals all the way up my arm - LE can occur at any point along the arm, and even just be specific to that spot. Is this how your baseline was done, or was it a more general measurement?
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Hmm... Good point! It was more like every 5 cm. I'll call the nurse navigator tomorrow. She's good about getting me appointments.
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Specialk, I want to go where you went- they sound very thorough in measuring your arm. Mine was more like Elaine Thereses', and I just always wondered if that was good enough. Also, when I had gone back to LE'ist, when she did remeasure my arm after a year r so, she said good news! Your arm has pretty much maintained! I didn't have the heart to tell her that I hardly ever wear my sleeve anymore, and pretty much treat it like the other. I do take good care of scratches. But, my other arm has lost muscle and is somewhat scrawnier than it used to be. So, I think i actually have more LE than she thinks, if she would actually measure my other good arm again, which she refuses. It is really obvious in the pictures that Ruthbru took of the ladies who got together in san diego a few weeks back. i mean, I know it, but there is proof.
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tomboy - I am seen by the PT department (all of their PT are LE certed) in the only NCI cancer center in FL, Moffitt. You might try seeing someone at an NCI center, if you are not already, mainly because their patient base is all cancer.
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ElaineTherese wearing a sleeve if you don't have LE is controversial but I do on my non LE arm. linky
My first 2 sleeves were measured by a medical device company. They felt awful. Once I developed LE I went to PT. Found out that I needed a long sleeve. Medical device person sold me what they had on the shelf instead of ordering me a long.
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I was fortunate that the medical device company I went to was linked to my PT. The PT, even though located at the cancer center, did not do fitting or selling of garments. The medical device company was very good and charged the same price for all products, I could exchange until I found the right stuff. I was diagnosed with LE during chemo so did not see a PT until I already had LE.
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Hi All, just hoping to get some encouraging feedback. My Mom is 3 1/2 years cancer survivor with triple positive IDC Stage 1. Last week she went for routine blood work with her PCP and her liver enzymes came back high. Her AST was 190 and ALT was 489. Her ALP was just over normal at 150. All of her other bloodwork was fine. Her PCP wanted her to go for a cat scan, but she had the results forwarded to her Oncologist and he recommended an ultrasound, which she had on Friday. We are now anxiously awaiting the results.
She is currently taking Arimidex, which she has been on since Feb. she was also on it over a year ago, but had switched to Aromisn. Plus she doubled up on her arthritic medication due to the joint pain caused by Arimidix. She also had an ultrasound of her liver done back in October and it only showed a fatty liver. Do you think it can just be all of this medication skewing her liver enzymes?
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