Stage 2 Sisters Club
Comments
-
Hi ladies, I just got back from a 'Girls Beach Vacation' with my sister, SIL, and two adult nieces.....very fun & relaxing. Especially cool that 'the girls' would be willing to take some of their vacation time to hang out with their moms & aunts! Thinking of you all & sending hugs where they are needed.
0 -
I also am on a 2 week beach vacation on LBI!! Hoping everyone here is doing well!!
0 -
The beach vacation explains your new avatar photo Ruth! :-) I was up on the Oregon coast, and had a bit of beach time myself, plus lovely, lovely weather....haven't been posting too much but continue to read and think of each of you.
Octogirl
0 -
Nice, relaxing photo of you Ruth. I am recovering from my right mx. Doing well but feeling rather quiet.
0 -
Quiet is good sometimes. Sending healing thoughts your way, Molly.
0 -
Molly - Sending gentle hugs. I agree that feeling quiet can be really good.
Ruth - cute pic. Reminds me I have to update my 8 year old FB photo and add one here.
ThinkingPositive and Octogirl - hello! Good to see you around.
Hugs, Nisa 💕0 -
I have to change my picture regularly or I forget how to do it......technology challenged!
0 -
Hi Ladies!
I have not been on these boards in a long while, just trying to get on with life!! But I miss all of you and think of you often.
I have recovered from chemo/rads well (last chemo Jan. 18, last rad March 7. Non-cancer breast removal happened on June 8 and couldn't be happier to be "even" again!
A month ago I had my IUD removed, which had kept me period-free for 4 years. So during chemo/rads, no period, so didnt actually know if chemo put me into menopause or not. Until a month ago i decided to have it out and my doctor said it's best if it gets taken out now to avoid any recurrence. Done. But now i have been spotting for the past 4 weeks and today, actually bleeding and having all those period-like symptoms. So now i am actually wondering if i am not post-menopausal. I am going to have bloodwork done tomorrow which will give us some answers. A question to you lovely ladies is have any of you experienced this? I also wonder if i am having periods again, my body is obviously producing estrogen again, and estrogen is NOT something i want in my body at all, as my cancer was highly estrogen positive. Am i on the right track in my thinking??? Or way off?
"HI" to NisaVilla, Hopeful, RuthBru, SpecialK, Molly50, and warm welcome to jenisis1975, Hopefloatsinyyc, pepper43!!!
0 -
I was already post menopausal so don't know. Hopefully somebody will come along with some thoughts. Hi to you!
0 -
Hello - just saying hi - I used to post here as Flannelette but am techno-challenged so somehow I've now ended up as Zucchini. Just saw Ruthbru - still here! playing those humour games! and I always found Special K to be very informative - are you a statistician or a scientist? I also had to check to see if Stagefree is OK.....I had quietly followed her posts for years, so uplifting, and now the mess in Turkiye...I'm long off arimidex, had a bone density scan a few weeks ago because that had sipped through the cracks - bone density fine..maybe cuz I'm good Ukrainian peasant stock? LOL I get my weight-lifting exercise just carrying around my extra natural padding. They've officially kicked me out of my cancer centre, now I'm cared for by a Nirse Practitioner, who I like better than any of my former doctors and she's so easy to be with, plus thorough. But I can get my yearly Mammo at the hospital with the cancer centre, which comforts me. Cheers and best wishes to all.
0 -
Hi zucchini/Flannelette! Great to hear from you again. Yes, I am still playing the games
. A cancer center is a very good place to be kicked out of! Congratulations!0 -
zucchini ... Are you Ukrainian
0 -
Thinking Positive - yes, mom came as a baby in 1907, dad fled about 1929 - raised on perogies and cabbage rolls - yum! oh and a bit of vodka
0 -
Zucchini....My husband is 100% Ukrainian. Both his parents came here in the 1950,s. Raised our kids Ukrainian. They speak read write went to Sat Ukie School, dance, and Plast. I love the food! Pirogies with cabbage are my favorite ang borscht!!
0 -
kimmer - hi! If you are on Tamoxifen it is allowing the circulating estrogen to do the beneficial things it does for premenopausal women while blocking the receptors on the breast cells. Having a cycle does not mean that Tamoxifen is not working, as the function is not to suppress estrogen, but rather to control access to the receptors. Docs have differing viewpoints on return of cycle, but I know others have had this happen. If you type the keywords into the search you will find posts.
flannelette/zucchini - hi! I am not Ukrainian, but was also raised on cabbage rolls! Also, than you for the compliment!
0 -
HiKimmer, nice to see you.
0 -
Kimmer - Hi. Nice to see you again. I was post-menopausal by one year so I have no experience like you. Hope you continue to do well!
Zucchini - Next name change should be Pirogies (or vodka, lol).
SpecialK - Did I tell you I get my first Prolia next week? Do you remember what was your Frax risk score before you went on it? Expensive shot my dear!
Who knows how precise is staging now that chemo/rads often comes before surgery? My 12.2cm surprise didn't even show on PET, MRI, or mammogram. Just curious.
Hugs, Nisa 💕0 -
NisaVilla.. Was thinking about Prolia shot. What made you decide? I am currently taking actonel. The cost is ridiculous and I think it's on my insurance list as a preferred drug. I think that's the one where they basically cover $0.00. I wonder if there is any way to get insurance company to cover it. I have a$3k deductible and the $3k coinsurance before insurance pays.
0 -
nisa - prior to my first Prolia, my FRAX was Major Osteoporotic of 20, Hip Fracture of 2.0, and I have had a significant double fracture prior to my breast cancer diagnosis and treatment of my talus (ankle bone that connects the foot to the two leg bones) which left me in a non-weight bearing cast for 12 weeks. My insurance covers my Prolia, all I pay is a $12 co-pay. This may also be because I cannot tolerate any oral bisphosphonates due to surgery in 1995 to rebuild my GI junction.
0 -
Specialk.. What is FRAX? Does some test give you those numbers? Also did your insurance cover the cost no matter what or was it because you could not tolerate the oral?
0 -
thinking - here is info for the FRAX score, it is a risk estimation for future fracture. Some DEXA reports also calculate the FRAX score for you. My DEXA scans are done in a military hospital and do not include the FRAX so it is calculated separately.
https://www.shef.ac.uk/FRAX/tool.aspx?country=9
My insurance covered the cost, and my inability to tolerate the oral meds was never tested after I was diagnosed with breast cancer, and I doubt that was factored in for insurance approval as I tried them briefly many years ago. I have been osteopenic, and had a number of DEXA scans, due to an early total hyst/ooph. My stable osteopenia was made worse after chemo and six months of Femara and I did not attempt oral bisphosphonates again at that time - I went straight to the Prolia. My insurance works differently than most patients, I have a zero deductible, zero co-insurance plan. Everything I do requires advance authorization, and if something is approved I just pay a nominal co-pay, the provider accepts whatever my insurance pays, and the balance is written off. Prior to Prolia, because they gave me the injection before they got approval, I was registered by my center in a program with the maker of Prolia so that if my insurance denied payment the dose administered to me would be replaced free of charge. That way I was protected from the expense, the facility would not be out any money or the drug. My insurance has covered two injections per year since 2012.
0 -
specialk. Thanks for the info. I am going to checkmy dexa report and see if there is anything noted like that. I would prefer the prolia. The actonel causes me to have the "runs" for a few days after I take. Rather annoying! Plus I read somewhere that it is recommended for breast cancer patients taking homonnal drugs.
0 -
thinking - I have a good friend who just had her first DEXA in a civilian commercial imaging center (she does not have breast cancer, was just seeking the DEXA based on age and menopausal status for a baseline) and her report did include her FRAX score. If you have had a DEXA, and have the report in hand, you should be able to compute your own FRAX using the calculator I provided above.
0 -
Thinking - I have been feeling vulnerable during hiking and walking. My FRAX score has been getting higher at every DEXA scan. And reading SpecialK's positive history with Prolia helped me decide. Moore's Cancer Center recommended Zometa infusions but I declined for now. Insurance approved Prolia without having me try other meds. Happy about that but will pay 20% of $2,000 per shot.
SpecialK - Score 17 and mild osteopenia prior to chemo and Arimidex. Broke my elbow 10 years ago during a tennis lesson (bad student, lol). Since that incident I took 2 bad falls going downstairs (not seeing dog resting, and high heels) and no fractures. Dog was saved. I used to joke I passed the DEXA scan without any imaging. Since the osteo diagnosis I feel vulnerable however. I am ready for Prolia next week. Are you using the Choice Program via the VA?
Hugs to all, Nisa 💕0 -
nisa - eeeks on the dog and high heel falls! I have had a couple of falls as well, without any injury other than some scrapes to me and my pride, lol! The bad ankle fracture was on my own concrete front steps when we lived in Virginia. I was talking to my neighbor and put my foot, in a flip flop, too far forward to the edge of the step and I actually slammed my toes straight down which flipped me forward to the ground. It was shocking - everyone in the ER kept asking me if I had been drinking - nope, just clumsy and inattentive - that's me! The capper was that I was on my way to look at the back of my car that my 17 year old neighbor (whose mom I was talking to) had hit - poor kid, he hit my car and I broke my ankle - he felt terrible but only the car was his fault! My Prolia is covered through Tricare Prime, I am not eligible for any VA programs, only my DH is. Nisa - can you get any patient assistance with your 20% from Amgen? Here is a link:
0 -
SpecialK - ouch! That is a lot a damage and a lot of bad luck. Hope you have no residual issues from that accident. I can see why the ER folk thought you had been drinking, lol. You are right, I thought Choice Program was for families but it is only for veterans. No more months long waits for VA appointments! Tricare Prime is likely the best plan around in my area. Although I like to complain/whine about the cost of medications in the US (same shot costs 1/4 price overseas), it would be immoral on my part to ask for assistance (and take away from someone who really needs it) as we have decent jobs and should pay the 20% and shut up, LOL. Hugs, Nisa 💕0
-
thanks for the info. I will do the calculation when I get home later. I would imagine I wouldn't get any assistance on the cost of prolia since I have insurance. But maybe it's worth a try since my indurace really doesn't discount the cost.
0 -
Kimmer, good to hear from you again. I've thought of you and wondered how you were doing post-chemo. Flannelette, nice to see you, too. Nisa, how are you doing?
I'll have to get a copy of my previous DEXAs - my former PCP didn't share copies. I'm due for another at the end of this month and it will be interesting to see what effect 22 months of Femara and one round of Zometa have had on my scores.
I hope everyone's having a fairly good summer, all things considered. It's hard to believe it's the end of July already...0 -
Can someone help me out here please??Not sure where to post this question. I was told by both my breast surgeon and oncologist that even thought there are a lot of family members that have passed away from cancer..none of them had breast cancer nor ovarian cancer. Therefore there is no need to recommend for me to be tested for BRAC1/BRAC2. . Is this true or should everyone get tested who develops breast cancer. Are there certain breast cancers that are more so positive for these genes? My daughter continues to be asked by her OB/GYN if her Mom has been tested yet. They think that I should be tested. Unfortunately we both go to different Hospital Networks. Her hospital network tests all who are diagnosed with bc for theBRCA1 /2 gene. Mine does not unless I fit the criteria. I was Stage 2A, DCIS/IDC, 11mm, 1 node positive. ER+ 98%, PR+ 68%, HER2 -, Grade 3 with KI-67 27%. Please help with what is protocol.
0 -
ThinkinPos, does your hospital have a genetic counciler? I was recommended to one immediately and she went thru my family history and odds of having certain genes and guided me thru the testing and insurance process and options. Her services are free, it is only the actual testing that costs anything. Also, she said everyone who has breast cancer (thru my insurance anyway) is covered. I just got my results back and am negative for everything (even though my maternal grandma died of bc at 42, my maternal aunt died of it and my mom had it, and on the other my paternal aunt had it at 28 and paternal grandma had it), and I can't tell you the relief it was to look my daughter in the eye and tell her she wasn't cursed! She just has to take better care of herself and break this damn family cycle. I say keep digging and call your insurance company if you have to. Knowledge is power and you deserve to know. You and your daughter. Because it can change her screening options if warranted
0
