TRIPLE POSITIVE GROUP
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Goutlaw my Onc doesn't routinely scan early stage. My BS did order the initial scans for me before surgery. There were 3 spots on my liver that every one said were cysts but my onc wanted to be sure. I was scanned for 2 years till she was finally convinced they were just cysts (one went away). So I had all that radiation and cost when I didn't need it.
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Thank s goutlaw, twinmama, and lago! That makes me feel so much better. I was getting worried about my choice of BS just 2-3 weeks before the mx.
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NickyJ
Wasn't around these parts @ 430 am but are you okay?
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Nicky are you okay?
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Nicky are you okay?
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thanks ladies, I'm doing fine, pain woke me at 3.30am and I had to get up, staying in bed was even more uncomfortable. Today has been very long, I've taken lots of top up meds. Reckon I'll sleep tonight, even if it's just from exhaustion!
Nicky
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Nicky J
So very sad to hear you are in pain. Is it in your neck? The pain that the upcoming surgery might alleviate?
Will try to check in regularly. I check my email so if you PM me I will be available to chat sooner.
My thoughts are with you!
Xoxo
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Nicky wish there was something I could to elevate the pain. Hang in there
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thanks all, so much! My fentanyl patches have been doubled, and I do have other meds to take, it's just staying in one position (ie lying down!) for too long is just an impossibility. I'm lucky to have you all!
Nicky x
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Nicky are u more comfortable sitting up? or do u have to change positions for comfort. Just take what u need and help u'r self. I'm sorry.
Goutlaw, it's good u'r home and jst in time. Don't overdo u'r Holiday just relax and let others help u. Heal
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Camille, it's all the same if I'm standing, sitting or lying. Just need to keep changing position. But it could be worse! At least its in the top of my back. I can imagine that if it was in the lumbar region there's no way I could walk!
Nicky
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Nicky you need to just Hit the pillow (linky) to feel better
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Iago,
Lol! That's just how I feel!
Nicky
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Nicky: I hope you find some comfort with the pain and that it subsides soon.
I was in the Health Food Store this afternoon picking up probiotics and other items and there was a lady in the same aisle. We began chatting and seems she went through breast cancer and doesn't even know what type of bc she has only that she had a 1.3 tumor and decided against chemo and radiation which if she wasn't HER2, she probably wouldn't have needed chemo but perhaps radiation. She had heard so many horror tales about Herceptin and had a friend fried from radiation, so she decided against doing anything except removing the tumor. We chatted a bit more and she thinks (and I suppose a lot do) that since the tumor was removed she is free and clear. We talked a bit more about Herceptin and she didn't seem to understand the need for any of that...remember, the tumor is gone so she's clean. I mentioned that many cancers have a high reoccurrence rate and she needs to be followed. She sees no one now. Then I find out she has LE and is looking for a cure for it. I asked if she's getting LE massages and she had no clue about those and talked about a sleeve and again she knew nothing about a sleeve so I directed her to our local medical supply store for a fitting and gave her names of LE therapist - she was in total amazement. Either she's a wacko or her doctor is or she just doesn't listen. My poor hubby was captive for all of this and was such a good sport and I apologized to him later to which he replied "I hope you've been able to help someone". Aww.
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Nicky, Hope you feel better real soon.
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Nicky ~ Really hoping that you got some relief and some sleep last night. I also hope that surgery will be the answer for you.
Ang ~ WOW! I hope you helped that lady out for sure! I honestly hope it's her and not her doctors because if it's her doctors that means other people are getting some dodgy treatment as well!
Everyone else ~ Have a happy Christmas {if you celebrate} and just a happy week in general {if you don't, well, actually if you do as well, just have a happy week, haha!}.
I am going to attempt to not lurk the boards until maybe Friday when I have my Herceptin infusion ~ so if you see me on here, tell me to get the heck off!
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Yea Im glad the tumor is out was relieved! Just been resting& at night or when I dont have kids take Perocet! Its just mainly sore! I dont have a pain ball but I feel better with pillow under arm. Wrapped all my gifts for kids before my surgery! This is a long road& now since surgery all I want to do is sleep! Cant wait to go back to gym ! I really need to buy bike& treadmill for home. I try to eat right but hard when u crave it or see goodies lol
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ArleneA she sounds like the type that doesn't listen to her doctor at all. In her mind it was get the tumor out and I'm done.
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Nicky I hope u get relief somehow.
Arlene that was so nice of u--Good thing she didn't run into me, she'd know the same amount now as she knew then. U done good girl, and what a sweet DH just waiting.
I hope no one is over welmed with all the stuff for Christmas and can enjoy u'r family and friends.
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Thanks all of you - it means a lot to know you're thinking of me.
I'm doing ok. My fentanyl patches have been doubled in strength; and whereas this doesn't take the pain away completely, at least I can function! I have oxynorm to take too, but I try and keep that for when I have PT, for example.
At least my knee is much better, so I can walk! I'm looking forward to seeing the surgeon, though, and getting this sorted!
Nicky
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Nicky! So sorry to
hear about your tumor counts. Maybe if they put you on
perjeta soon they won’t ever have to get to the other stuff. That’s what I hope for you anyway. Have you talked to your onc about lupron? On another note, how the heck did you get
LE? And what does it feel like? Now that I’m a hypochondriac, I notice weird
things, like sometimes when I am out walking the dogs for awhile, I’ll feel
this sensation in my left arm (non cancer side) almost like I’m having blood
drawn. It’s kind of hard to
describe.Re your cervical issues – are those injury related? I don’t know if this is relevant in any way,
but MO said that chemo has an anti inflammatory effect, so that sometimes
people who have arthritis notice an absence of arthritis pain while they are
undergoing chemo. One of the few
positive SEs, along with, say, having built in mosquito repellant. (That was my experience!) Anyway when you’re done with chemo it can
have a rebound effect.Twinmama, my MO
said that there is some evidence that tamoxifen may slightly reduce the
effectiveness of rads. So I waited until
a little after I was finished. I was also
very highly ER/PR.Leanne, even if it’s tiring keep up the exercising thing, at
whatever level you can handle. I exercised
and was really careful about what I ate most of the way through, and I wasn’t
having major SEs so I was a bit less vigilant going into round 5, which was by
far the worst for me. Once I was a bit
recovered I got back on track going into #6 and it wasn’t as bad. Granted I was also thrilled to be done so
there was probably a bit of a placebo effect in there.Lago, do you have LE in the side where they only took out 4
nodes?Arlene, when I was in treatment I went to a support group
and a woman there didn’t know much about her diagnosis. A doctor recommended a double MX and she didn’t
know why. She had a “friend” who was a naturopath
who said that all she needed was at the health food store. (Not if you want to live, I thought.)
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Cypher,
At DX in July 2012, I had mets to C1 and C5-6, among others. In December 2012, an MRI showed a herniated disc at 5-6, so in January I had radiotherapy on both areas for pain. This helped a bit, but I was still using fentanyl patches. I've just had another MRI, again because the pain had increased. It showed that between C1 and C7 there's now 3 herniated discs. C2 is also so fragile it doesn't show on the MRI- it's just a black hole! It looks like the bones above and below are just floating. My onco says its signs of compression, hence the need for surgery to strengthen it.
As for LE, that started in November last year, suddenly. I became aware of it because my watch strap broke; my arm swelled so much it snapped the links! 2 days later my leg swelled too. Since then, I've had PT 2 a week. I think Iago is right though. I must have some sort of pre-disposition to it, although I never swelled up before.
I'm planning to ask about Lupron when I see my onco. Staying on herceptin for the moment too
Nicky
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Nicky - hugs to you! Hope you get everything worked out so you can be pain free!
So, apparently my worry last week was my subconscious trying to tell me something useful for once. I went to the ER this weekend with severe lower back pain and what I thought was a kidney infection. Found out I have complex cysts on both ovaries (2.0-4.6 cm size range), and there was "free fluid" on the right so they think one had just ruptured causing the pain I was having.
Chatted with my midwife, since I'd just had my annual a week and a half ago. She said we "probably" would have noticed them then (most likely I would have felt pain during the exam) if they'd been that big then.
I have an appointment with a PA at my MOs office Friday (my MO is out of town for the holidays).
Any advice / experiences?
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cypher I have LE in the left arm where 10 nodes where removed. I have had BP taken in the right arm (manual only, The machines get too tight) because in my leg it's so high that you'd think I was about to have a stroke when it's really normal. I have also had blood draw from that arm once so far but again I will not let them use a tourniquet. I'm lucky I have good veins. If I need an IV I've always made them go through my foot. I'm being as careful as I can with the other arm.
Just note that my mom and her uncle have/had LE in their legs. It wasn't caused by any surgery or trauma. I have another friend that has it in her legs. Again she has a family history too.
I knew I was getting LE in my left arm because it started to feel heavy. The swelling was subtle but my onc diagnosed me with a photo I sent her… or lets say she agreed with my that I got LE.
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hello ladies
just stopping in to wish you all a very Merry Christmas, or Happy Holidays if you don't celebrate
I don't hang out on this thread much since I know there are so many great ladies who stick around to help the newbies but I think of you gals often
I am grateful for this site and all the support I have received from it
tomorrow is my birthday (yes xmas day) and I am grateful to be celebrating it with my family and count all my blessings
hugs to all
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Rozem u are a Christmas baby--how bittersweet, u'r BD is so overshadowed but u share it with the BEST. Happy Birthday Rozem. And I certainly wish everyone a very Happy Holiday Season bringing better health, peace of mind and true happiness for all of u Ladies.
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Rozem Happy Birthday
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happy birthday Rozem!
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Happy Birthday Rozem and a Very Merry and Blessed Christmas to all.
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