MIDDLE-AGED WOMEN 40-60ish
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Okay Jo, jump in at 2pm tomorrow. We can hold hands as the doc yanks the thing out.
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oops forgot to finish question duh!!! could it be due to the storm coming and change in weather...
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Hauntie, I had not heard about the DISH levels, so
5 years = Gold Level
10 Years = Platinum Level
What's 15 & 20? Titanium and diamond? Cause I'll go for 20 if it's diamond.
Go Big or Go Home.
Two questions for you...You don't have to get any nodes out on the PMX side, do you? Do you have lymphadema on your MX side or arm?
Marlegal, It was worth every cent of that Monopoly money!
chrisct, Good to hear from you. I have not heard of that blood test. Let us know what we are missing. I think the thyroid test is called TSH. Since your doc is checking quite a few things that could cause a low energy level, he probably won't mind if you ask for the TSH too.
Yes, I still have my weather avoidance, but being in a kind and benevolent mood (in the afterglow of the party weekend) I haven't gone balistic yet. The hurricane talk kind of segued in after the earthquake reports, so sneaky, sneaky.
KG2011, Your Mammosite rads went fast...for ME, at least. So, tomorrow and next week, tell us if fatigue hits. I wonder if it is much less than WB rads. Also, full description of how your skin looks and feels. Happy to hear it's smooth sailing for ya'.
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Tink, Do you have ANY swelling at all? The weather should not make a difference, but if you have some lymphadema swelling, maybe it could be more sensitive to barometric pressure???? Anyway, mention it to the next doc you see or call the BS or MedOnc, because if you are starting to have signs of LE, you might want to take some action (like PT & getting the compression sleeve) before it gets worse. LE is something you want to catch early so it does not worsen.
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Thanks El.. no swelling. I had revisional surgery last month so the swelling i have is mainly around the breast, but my arm and hand is ok.. i will call tomorrow.. thank you
Maria
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Your surgical swelling should resolve on it's own, so you should notice the swelling lessening over time. Some people get "truncal LE" in the chest/breast area, so if you stay puffy with no change it could be a sign of that. Just stay aware.0
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Hey everyone been a crappy day here. One of the Stage IV girls passed away last week and my pm got to be the one her sister picked to answer, so I got to report that horrible news. Even worse, she was so young and had a two year old son.
Had zometa this a.m. then went for pre-admit testing which took more than 3 hours. Geez, could they make it any longer. Needless to say I never made it to work (and I was so looking forward to going lol).
Hey E can I get some of that money -but I want the real thing?
Jan - don't you have to close for a state of emergency? Are you in the evacuation area? I hope you have somewhere to go. Pm me if you need assistance.
Marlegal I guess you won't be going to the shore this weekend.
Well, sorry to be such a downer today everyone but I know you all understand.
Everyone be safe.0 -
oh ok I have not heard of that.. wow still so much to learn thanks!
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Tink, There is a light massage stroke that the doc or a PT could show you for helping the lymphatic fluid to move. You could do that on yourself. I bet you could Google for directions, or there is probably even a You Tube video that shows you how. It's not a big deal, but I just can't really describe it.0
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Im sorry to hear the news Ressie. I will add her family as well as you to my prayers.
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KittyGirl - You got it - I will be there with bells on. It is NOT going to hurt. I just won't let that happen to you. Then when you are through, we are going to do a happy dance.
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re DISH status - DISH status originated on the Breast Cancer Maling List (bclist.org). It was created and composed by Musa Mayer, a former mental health counselor, who is an author and patient advocate. She was diagnosed in 1989 with Stage II breast cancer. She has written several books about breast cancer. I became familiar with her, shortly after I was diagnosed, when I read her book "Examining Myself: One Woman's Story of Breast Cancer Treatment and Recovery." I identified so strongly with her book, it was like it was written just for me. Imagine my thrill, when I joined the Breast Cancer Mailing List and there she was, a very frequent contributor.
Musa's DISH status document was created in response to a woman's post on the bclist that she was 10 years from diagnosis and NED. It is VERY tongue in cheek. It stated with DISH - Platinum status and has been added to over the years to include every level of, for want of a better word, survivorship. Survivorship referring to years since diagnosis - NED or not. I asked a question on the listserve recently and someone kindly went back into the archives and sent me the entire document.
I posted a question, on the bclist, about whether people not on the list qualified for DISH status. I didn't get a response, but I'm assuming "sharing is caring" so I figure as long as I give credit where credit is due it should be ok. Here's a couple of examples of various levels of DISH status.
Elimar at 2 years post diagnosis you qualify for the following status -
"** For those who are two years post diagnosis, the SWAT level ("Still
worried all the time...") New SWAT's will receive a year's supply of
your choice of SSRI, one free meditation retreat or marriage renewal
weekend, and an attitude adjustment. One lucky winner in our special
"Peace of Mind" category will receive a complete set of bone, brain,
liver, lung and full body CT and MRI scans, including tumor markers and
other blood-work, plus a full-day session with your oncologist to answer
ALL your questions!"You also asked about DISH status beyond 10 years -
"DISH Club, CALM level, reserved for those who have lived 25 years or
more after diagnosis. This is our most exclusive, highly-prized honor,
reserved for the fortunate few.
Fees are waived for members of the elite CALM level (Club ancestor,
latent matriarch). In fact, the DISH Club will pay YOU to make an
occasional appearance at Club events to reassure other Club members, and
dispense pearls of wisdom. Other benefits include paid-up nursing home
insurance and your choice of a co-op in Miami Beach or Scottsdale,
Arizona, OR free bridgework and dental implants. Also includes a bonus
"Golden Years" discount program, good for the early-bird special at
thousands of participating fine dining establishments nationwide, and a
finely detailed needlepoint throw cushion with the words, "Crones rule!"You get the idea. The DISH list goes on and on.
The highest DISH status, DIAMOND, is reserved for those of our sisters who are stage IV.
For our "met-sisters, a special salute for
valor under fire. You are our heroes! You've been awarded our highest
DISH Club Diamond membership. Membership includes a two pound box of
fudge and a specially designed princess tiara. You are precious gems to
all of us, radiating light from your many facets, your beauty formed
under unimaginable pressures."The entire document is far to lengthy to post here, but if you PM me your email address, I'll send it to you.
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Reesie
{{{{{{{{hugs}}}}}}}
Sounds like a very bad day prayers for you and your friend and her young son.0 -
Reesie - I'm so sorry to hear of the passing of one of our breast cancer sisters. Any age is too young to be taken by this horrible disease, but when someone is so young and leaves a baby behind, it's all that much sadder and makes me all that much more angry.
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Hauntie, In that case I'll pass on the Diamond level (although the tiara sound fabulous!) Will shoot for CALM level, instead, but could use those dental benefits NOW. I can probably Google to see the entire thing, and have a laugh. Thanks!
Reesie, Sorry to hear about the Stage IV sister. The younger, all the more tragic.
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Kitty I will be thinking of you tomorrow. Tons of happy thoughts headed to you hon. Take the Vicodan and relax, okay? So glad you are almost done.
Tink....well, my tumor was in my right breast, so no discomfort on the left side. Okay...just slap me!
I am only on day 3 of rads, so really have no clue about weather/barometric changes could affect you. Today my underarm area is very sore. I have that "tight' feeling too. My breast is pretty pink and not painful, but uncomfortable. Hope that makes sense. I am using the calendula gel they gave me.
I hope I don't get a real bad burn over the next 30 treatments!
Be well and happy, and please be safe with impending storm.
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Elimar - you have to take it one step at a time re DISH
3 years - "HAHA level ("Hot as hell always.")"
4 years - "the CRUM level ("Can't remember... uh ...much")"
5 years is a biggy - "Gold level membership, for five year survivors, which includes many of the benefits of platinum membership, with the exception of the Serenity and Temperature Regulation features. Includes either a special pink ribbon lapel pin in Austrian crystal, or black T-Shirt, XXX size only, stenciled in pink puffy script with the words, "Five years ain't chopped liver."
I'm not sure at what level the 2 pound box of fudge first appears, but it is at the higher levels and therefore must be very delicious fudge.
I'll let you Google the rest.
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I'll take the diamond, leave the tiara, it might get blown off in the hurricane. Lol
It's been 15 yrs since dx, almost 1 w/stage IV.
Tink, my arm and other body parts that have 'ol Arthur do bother me occasionally when the pressure drops. Massage is great! I don't have any swelling though. You may want to check that out for sure.
Reesie - I am so sorry about your friend. I hate hearing it, it scares the crap out of me and I feel so bad for their families and friends.
Hair loss - since Femara I have been losing lots of hair. Did not with tamoxifen years ago. Chrissy told me to take Biotin, it hasn't been too long since I started it but I think I can see a difference. Definitely in my nails. Might be worth a try. I hated being bald.
Kitty - I was so chicken about my port removal I had them give me a twighlight drug. Never knew a thing! I'd been through enough! Why not. Good luck!
Everyone on the eastcoast, be safe. I think it's going to be a rough one. Filling up buckets of water so I can flush the toilet. Lol
Foxy0 -
Reesie.....I am so sorry about the loss of your friend. My heart hurts for you, her family, and all those who loved her. Many hugs to you.....
Foxy I have been taking Biotin for about 6 months and for the first time in years I have long nails. I clean a lot and don't wear gloves, so they are pretty strong. It doesn't happen overnight of course. My hair is still falling out though. That ponytail thing...has gotten much smaller.
Hauntie thanks for making me laugh this morning!!
Please take care everyone. I am thinking of you all. I keep all of you close to my heart every day.
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Reesie, I am so sorry for the loss of another angel to this horrible disease. ((((HUGS)))))
Hauntie-- will definitely google that article, what a hoot!!! Something to aim for, for sure!!
Kitty--I'll hop in your pocket too!! Never enough support when you're a little scared. . .
Paula- you are braver than me to quit the Ambien. Trying to balance the no sleep vs the fatigue. Right now the sleep outweighs the fatigue. Someday. . .
Chris- I admire you for keeping at your running!! It may take time but you'll be back to a new you that can run better than before!! I have my fingers crossed!!
Ok East Coast girls--please stay safe. We may have to have a hurricane party this weekend--hopefully you all will still have power so you can be a part of the fun!!
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Kitty... I would be happy to put on my best set of wings and fly on over to you!!!! hugs
Resse so sorry to hear about the loss of your stage iv sister... hugs!
El.. thanks I did find some on you tube and pulled out the exercise that the PT gave me and started doing them again. I also slept with my arm eleveated lat night and the tightness in the wrist is better, so here is hoping!
I loved reading all the different levels I am only 1 year out but SWAt seems to fit that too, worried all the time
Have a great day ladies off to run some last minute errands and get some school t stuff done for my DD.
bE SAFE!
Maria
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Kitty - I am packed and ready to go. Looks like you better wear something with big pockets - it could get crowded in there today.
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Marlegal, you only got $500??? I got $1,000 to not be funnier than elimar on this thread!!!
Tink, I have truncal LE so you do have to watch it. My wrists are okay, not swollen, I just have extra fluid around my scar line. Like little boobies, but on my back too!
Praying for all the sisters in the line of Irene. Really, does Irene think she can piss off a breast cancer lady???? We won't even BLINK!
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Reesie-Sorry you are feeling so down. Everyone one should be able to see their children grown. I work at a hospital in Cape May county and we have closed our office. I live in Atlantic Co. so we don't have to evacuate. I live about 15 miles inland so we should be okay. My daughter and her SO are probably going to come stay with us. They live in Sommers Point but she is a big chicken and I think she just wants to be with us which I don't mind at all. My other daughter who lives in Delaware was supposed to come over with her family tomorrow because my mother has never met her son but I don't think they should travel.
Tink- Did you get ahold of the MO Let me know what they say. I haven't had any lymphadema problems yet but they did recommend I order a compression sleeve to wear on airplanes etc.
Everyone stay safe.
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Thanks Barb what do you do for you LE? Thats right Barbe we aint afraid of Irene!!!!..
.. We are as ready as we are going to get here. We are officially inder a Tropical Storm warning where i am.jANIN.Funny i had to call them anyway waiting to hear back. I dont know why i didnt notice this sooner but the script for my tamoxifen is wrong!!!! it should be 10mg twice a day and its 10mg once a day. Rx said thats how it was written and thats wrong so left a message about both things!.. oye!
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Foxy - We'll attach a couple of ribbons to your tiara so you can tie it under your chin to keep it from blowing off. Don't forget DISH - Diamond level also comes with a 2 pound box of fudge, which considering what you have to go through to qualify for it, must be some pretty damn good fudge.
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So sorry about the loss of your friend, Reesie.
Thinking of you today, Kitty.
Tink - oye is right. So scary when they get Rx's wrong.
I need all those things you get at the SWAT level.
Thanks for the well wishes. I managed to remember not to eat and to go get my bloodwork done. Now to see what is wrong with me. The HMG-PEA panel has a lot of routine blood tests - cholesterol, etc. and included a T4 test for thyroid. Will be interesting to see what the numbers are. I also have to go for an echocardiogram. Dr. did an ekg in the office and saw an abnormality so she's sending me for an echo. I had hoped with all the running I've done over the years, my heart would be strong. I'm going to be sad to find out I have heart problems now. I didn't have adriamycin or herceptin, so I didn't think chemo would have damaged my heart, but the Dr. muttered, "Oh, you did have cytoxan..." as she looked at my chart. Hmmm. Hope she can find an answer for me though. I'm so tired all the time.
(((((((Middies))))))))
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Thanks everyone for your support! Jo, Claire, Tink, Janis - I'll wear my big pocket house dress so you can all come with. Any one else can fit in the other pocket. Went this morning for #9 and the nurse gave me this warning; "the doctor will twist it a little and that might sting, then he'll pull it out and you could feel more stinging" GREAT! How sensitive is that to someone who's already scared! Jo - I think we should carry her over to the Bonfire and slow roast her and see if it "stings"! I've had two nurses during this and she is the one I did not like. A real ditz, the kind that blonde jokes were talking about. I did ask if there was something else they could do to make me more comfortable and the Doc said the Vicodin should work. Gulping one down an hour before we leave.
Stay safe everyone on the eastcoast! Reesie - I'll keep you and our departed sister in my thoughts. Hauntie - loved the DISH lish! Foxy - keep the water clear and running, nothing worse than a gooey film around the rim from things sitting in there. YUCK! Take care and I'll see you at 2pm. Kitty
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All the east coast ladies pls hang on tight and stay safe.
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janis & rads gals, your rads side will get tighter. When I had the SNB, the stitched area and underneath scarring made me a little tight. I started stretching even before the stitches were out. By a month's time I felt about normal in the arm/armpit area. Then, having 6+ weeks of rads left me tighter than before! (I call it "micro-scarring" from the rads and everything the rads zaps gets a little of it.) So, back to stretching almost every day. But guess what? It is only now, after two years, that I am feeling that my treatment side is as loose in the tissues and muscle as my untreated side. It really took that long for me. Don't give up the stretching ladies.
Barbe, Good thing I wrote in the clause that I get $100 back every time you are funnier. I've gotten half back already and should get the rest back before long. Keep making me laugh, all the way to the bank.
Hauntie, LOL. Five years isn't what it's cracked up to be, when the DX is a slow-growing ER+/PR+ B/C that can recur twice that far out. So what is the big 5-Year milestone then? I like the DISH definition. It's no 2 lbs. of yummy fudge, but it "ain't chopped liver."
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