Any 40-ish survivors?
Comments
-
Got to add, I too love love love shoes ... and clothes!! I bought a pair of winter boots this week. You've got to get in early in the season for the best choice and range of sizes!
Kim, we are considering catholic school too. We have applied to a catholic girls school, but won't find out if we are accepted for a few months.0 -
Hi Everyone,
Kiwimum....I'm with you..part of me wants to just roll on with my little life ..and the other side of me wants to double check everything mine is much like yours..says the scans are not good for me...Lord knows I have been radiated/and chemo cocktailed too. So yes...I too am a mixed bag about it...He didn't even talk about Zometa cost..I will be asking more about this though. Good luck with Catholic school..our son began Catholic school when he was 3 so ...we thought about co-ed schools but most of his friends will go on to this school too. It is a big decision so I will be thinking of you. Have fun with those Girl Guides!! Lol OH and the Badges too...next you'll be sewing badges. Lol
0 -
Kiwimum, you are getting ready for winter? Is the pool still open? Not to mislead anyone, not wearing a bikini, just a 2 piece with alittle tummy showing, ok, maybe alot of tummy showing. When will you start the Zometa? I have heard you can be a bit achey and flu like after the infusions for a few days. I am waiting to hear if my insurance will approve, I am going to do it reagardless as well. Here it is also about $1000 per infusion, one every 6 months for 3 years. I dread going back into the chemo room to get it.
readingmama, only our group could understand your shower incident today.
Love you all, just thinking how much you remind me of my tight group of college friends, sharing different life experiences.
0 -
Why are you all taking zometa??
0 -
And shoes . . . oh yeah. My obsession is sandals. I guess it comes from growing up in florida. No joke, I own about 40 pairs of thong/flipflips. Not the cheapo plastic ones. . . nice ones that you can dress up or down. I wear them year round, weather permitting, which draws a lot of weird looks here in atlanta.
0 -
Hi Everyone,
Christine, I did not even know it was every 6 months..I thought it was oral. I will ask as well. I am pretty sure the only way insurance will cover is if I am on AI.
Lisa..I do not know enough about it really,but my understanding is studies have been done that show Zometa ( the bone loss drug) also has shown to reduce recurrence.
Please correct me if I have said this incorrectly.
Readingmama...seems there are so many things ONLY we would get!! Lol
0 -
I have already been sewing on badges and discovered I am useless at sewing! lol
One of the girls on the stand with us today had her sash covered in badges - that's a lot of sewing. A friend got so sick of sewing them on that she now just staples them. I found that hilarious and teasingly called her a "bad mom".
Yes we are getting ready for winter Christine. It's officially autumn (fall) here. The weather is cooling down and we still have the pool heat pump turned on. The girls are swimming less as the outside air temperature is colder. I think we may retire the pool for winter in a couple of weeks.
I too have heard that the possible SEs from Zometa are flu like symptoms for a couple of days afterwards. Yes, having an infusion again will bring back horrible memories.
Lisa, I am considering having Zometa because there are some early studies that show a decent decrease in recurrance rates in pre menopausal women having Zometa. My onc isn't convinced there is enough evidence yet but has said he's happy to administer it for me. Even if it has no effect on recurrance, it has long term benefit for bone density. Bone density decreases wtih age, especially with the onset of menopause (or early menopause in my case).
He expects me to life a long life and good bone density will help later in life.
0 -
Oops, missed your post Kim as I was typing.
I think the reasoning about it reducing recurrance is because mets more often than not start in the bones. Zometa does something that protects the bones and reduces the ability for it to a) take seed and then b) spread further.
I'm no doctor, this is just my personal understanding.
0 -
Is the zometa for er or pr positive cancers or does it work for all of us? I am going to have to ask about this. My onco has already shot down metformin, which annoys the hell out of me. Does it causes any hair loss or anything obvious like that?
0 -
I've asked about metformin too. My onc doesn't think studies are yet definitive, but that it's a really cheap drug, with relatively low SEs, so if I want it he will write me a script.
I see you are triple neg Lisa. I don't know the answer to you question about ER or PR+ cancers.
0 -
Hi All! You have worn me out trying to catch up on all the posts. You lost me with the Pom oil. lol Sorry it has taken so long to get back on. I couldn't post coherently till yesterday and then after I read my caring bridge again today, I realize I still wasn't all there.
First, I missed you girls soooo much! Thank you for all the well wishes. I am doing very well, but the anesthesia and narcs played with my head waaaay too much. I was able to start advil today and am feeling much, much better. I LOVE my results so far. I actually have boobs. Frakenboobs, but boobs non the less. My DH is actually excited over them again.. It feels good to have them move again when I walk. I can do without the zipper from hip to hip, but it was well worth it.
Christine- I know you talked about a tummy tuck before. Don't do it!!! Just kidding. Don't know why anyone would willingly do it. Have fun on your trip. I think you are taking one, I've missed a lot. I too can't wait till the day we can meet somewhere with Kim.
Readingmama- wish I could say I would be excited about the blood, but that is one thing I do not miss, but here is hoping you get yours back soon!
Achpurple and anyone else that way- glad you are safe. What a scare. I was a little out of it when it was all going on. Had to ask my mom repetitively if what I was seeing or thinking was really happening.
Okay, I will quit now. It is probably still really scattered. Sorry if I missed anyone! Talk to you all soon.
0 -
Lisa, I just found all my cancer paperwork from my chemo education. I was going to enter a clinical trial and I found that paper work too....here's what is says....the drug is Denosumab (of course not approved yet), "you are being asked to take part in the research study because you have early stage breast cancer and are at high risk of disease recurrence in other parts of the body....we are testing the drug, a protein, that might stop your cancer from spreading to your bones...." I ended up not qualifying for the study, they said the CT showed my tumor was smaller than they thought- they thought about a 7 from physical exam....
I remember them telling me it was a vitamin D and calcium mix...certainly that is too simple....but I'm horrified that the multi vitamin I'm taking is lower in calcium than I thought!!!!!!!!!!!!!!!!!!!!!!!! I'm getting a new supplement next week with the D and calcium.
If you all really want metformin....go to your regular docs and ask for a sugar test, they can go them from finger pricks now with cholesterol....they keep lowering the threshold for diabetes, they now want sugars at 100, just a few years ago it was 140....I'm at 120 and thought I was doing good. I don't want the drugs... cause I don't think I can stomach another dx....but this might be good for me.
By the way, our health ins is renewing at work. I'm the one that handles all that. My rads totaled out to 25,000 paid out by insurance.....ouch.
0 -
lisa, kiwimom is correct, zometa is being used to prevent bone mets in pre-menopausal BC patients, however only has FDA approval for bone mets (in other types of cancer too). It has only been studied in ER and PR positive cancers. Twp of my local 40 year old friends are getting Zometa, one at Duke and the other at Chapel Hill. Both early stage BC.
Kmur, it is available orally, but this is a lower dose and used for osteoporosis, and I do not believe this has shown the same benifits.
I also asked about the metoformin, my onc is completely against using this for cancer reoccurance prevention. He is not onboard with any of these studies. Just figures, it is dirt cheap and may help with weight loss.
mamachick, so glad to hear you are doing well! We all have been cheering for you.
0 -
I think they use metformin here to protect your kidneys in pre-diabetic patients too.
The only drug my mom has used that successfully made her lose weight - other than chemo....is Byeta - a diabetes drug being study as a weight loss drug.
All this talk about weightloss is making me hungry.....lol.
0 -
mamachick - yeah!!!! So glad to see you posting and glad you are doing well. That is exactly the first coherent thought I had, is why would women actually pay to get a tummy tuck!!! But the pain didn't last long...
All this talk of zometa is making me wonder about it too, I quickly looked it up, but it doesn't talk about BC. Christine, thanks for your explanation. It doesn't sound like I would be eligible either since I am ER/PR-, like Lisa. But I am in chemopause, so do have the bone density issue? I will have to ask. Of course that is why I want my period to return, for the bone protection, I am certainly not planning on any more kids. I will stick to Vit D and Calcium for now, but will look into this more.
And the otherone, Metoformin, have not heard of that either...
Kiwimum, I get not doing the scans, does your onc say why no blood work, just curious...
0 -
Oh also, KiwiMum, I have a 'bad mom" story I was just telling at work today. My ds is getting his 1st communion this year, and his communion retreat is tomorrow. He had to make a felt manner that will hang on the end of the church pew for his communion in April. We are given the banner felt and some ribbon, with instructions to sew the ribbon on to the top of the banner and if we want to sew with buttons to make it stonger.
Well, this week was super busy and I am not a sewer, so I just stapled the ribbon on! I figured it only has to last for about 2 hours then it doesn't matter if it comes apart.
I also started pinning, instead of sewing, by dd's Girl Scout patches on, esp. when she was in the last year of a level and I knew she would get a new vest/sash the next year.
0 -
YAY..mamachick...so good to read your words...we have all been thinking of you and as the others said just really good to know you are on the mend and happy!!
I will have to google metformin....I do not know this one. My understanding with the Zometa..is even for us girls who are in chemopause..our bone density is not lost as quickly as being post menopause + AI..I think it is the AI that very qiuckly impact bone density so the Zometa counters this??? Does that sound right?? One weird SE I read about Zometa is jaw bone issues?? So weird if it is to make bones stronger. Thanks Meegan..I did not know the infusion was stronger..that makes sense though. My ONC also is not sold on the benefits and he also says no to baby asprin though..He says NO alot!! Lol
0 -
Sorry that was Christine that said the dosage part ..And I forgot to say ...that is so funny about stapling the badges..OH gosh....Just so you can be the greatest MUM ever kiwimum..I think at the hobby store you can get this iron on adhesive to put on the back of those little badges and all the other mums will think you are a sewing goddess!! Lol
0 -
Lot of laughs about the stapling instead of sewing badges and banners. When my boys have needed to have patches put on uniforms (hocky and soccer), I have asked my MIL, makes her feel useful.
I had my first bone density 2 weeks ago, I already have some osteopenia. Osteopenia is early stage osteoporosis. I have very low vit D (13 at diagnosis) and have been taking 50,000iu every 4-5 days along with the calcium. Low vit D increases chances of osteoporosis, hope you all have had this checked, and keep getting it checked! I am also working hard with weights and weight bearing exercise trying to keep bone strength.
The jaw problem is osteonecrosis of the jaw. I spoke with my dentst and oncologist about this. Unless you have poor dental health, gum issues, etc, you are at very low risk for this. They did tell me that tooth extraction is avoided at all costs during zometa treatment.
ok, enough cancer talk.
Up and getting things done early this morning. Need to do some shopping for spring stuff for the boys, they hate looking for clothes. I just don't get it. My oldest son is making his Confirmation after Easter and I dread shopping for this. He is somewhere between boy and mens sizes, wish me luck. My oldest is doing a 30 hour famine retreat at the church today starting at noon, they will get clear juices. I get hungry just thinking about it. I am going to take him for a big lunch before I drop him off. Glad I did not volunteer for this one.
Hope you all have a wonderful Saturday!
0 -
OH GOSH Christine...I wish you luck shopping....I am with you my friend My son does not want to shop for clothing however if I come home with stipes,checks,yellow,buttondown,jeans,weird dress pants..it is just frowned upon...Lol Boys crack me up...yet he is all good with not brushing teeth, etc. I wonder when this changes?? I guess the addotion of really caring about girls maybe.
0 -
P.S My son is going through Confirmation too. they will wear white ( graduation gowns) ...I know his plan will be to wear shorts under!! Lol
You all have a good Sat/Sun.
0 -
My DD did confirmation in February - middle of the week - so no family other than immediate can get here for it (everyone else is 3 hours away). Girls wear a dress or a skirt and blouse and boys wear a suit - all pretty simple colors, nothing flamboyant. Our service was at 7:00 on a Tuesday night and was over just shy of 9:00 (which is bedtime at our house during the week) and after we go down to the cafeteria for cake and punch. If you want to have pictures with the bishop, you have to wait FOREVER in line to take turns on the alter, so we have never done that - just makes it way too late for kids getting in bed.
0 -
Wow, it is fun to actually be able to read al your posts clearly. My arms are a little short to sit too far away from the laptop. Got the new glasses yesterday and getting used to them. Did I mention sometimes the Tamox drives me crazy.
The shoes, been too cold and snowy to wear out. But have walked around the house with them on a few days. Can't have pretty shoes and not wear them! I got a pair of black patent and suede leather platform pumps(first pair) with a slightly crazy heel and silver stitching. Planning on looking hot at the black tie gala on the arm of my handsome hubby in his tux. Also a pair of navy sling backs and a beautiful pair of coral, braided, leather slides. All high end and very comfy - I do love a sale. No more time for cheap or uncomfortable shoes! We should all go out and buy new shoes and a new outfit for sping (or winter) as the case may be.
Mamachick - glad to hear you are on the mend.
I was the ultimate bad mom - with 3 girls in Guiding and even though I was a leader myself and can sew I often resorted to liquistich when short on time. Loved when my older daughters' Guide leader decided when a lot of girls did not have stuff sewn on that they would do a sewing session at a meeting. Gave them credit toward some program requirement and taught them how to do it themselves.
Off to look at universities this week and spend a little girl time with youngest. Also may look for a prom dress while on the road.
0 -
Love reading your posts, girls! Liked your "nuns with rulers" story, Gina - that gave me a good laugh!
Stacey, glad you're home and on the mend, sounds like you had a pretty rough time.
Kiwi - you seem like a super-mum to me! I used to love Guides too as a girl. We used to go out selling raffle tickets, collecting for jumble sales or whatever on our own in those days, no grown-ups! It was particularly foolish when I thought about it the other day (after you'd mentioned selling around the houses in your post) as there was a terrible serial killer around at the time, called The Yorkshire Ripper, killing people only a few miles away from where we lived! Can't imagine such lax attitides nowadays. Love a bit of old music too myself, though, weirdly, was a Beatles fan for most of the 80s. Loved Erasure , Kate Bush and stuff like that too.
Saw gp yesterday about my sleep problems. I can't have melatonin as I'm both too old and too young - have to be either under 18 or over 55 to have it legally prescribed! I'm taking my son in next week to he can get it and hopefully, if his sleep improves, it will have a knock-on effect with mine. Fingers crossed!
Better get dinner on, love to you all,
Sarah x
0 -
Sarah - can you order melatonin from the US? No px required here. I order mine from the GNC website.
0 -
Jane, never heard of liquidstich - that is what I need. And Kim, in Daisies, which is Kindergarden, they were iron on, which was great since I used to iron every week, but once she started Brownies in 1st grade, no more iron on.
Christine, wow 50,000 iu of Vit D is a lot! I am taking 2,000 iu + what ever is in my mulit and calcium, etc. I am also glad they check for this. And the Y strength training program should help, I just have to keep it up, only 2 more weeks in the free program.
Did your onc send you for the bone density test? I asked mine about it, but she said it was too close to chemo and the only thing they would recommend now is diet and exercise, so she does not recommend it yet (but does check Vit D levels).
0 -
Hello ladies.
Just checking in and trying to catch up on all the posts. Am grateful I did not have daughters as I would likely tried to superglue the badges on.....lol
So glad to see Mamachick is doing it well & bgirl got her shoes. Bet you'll look fabulous when you step out!
Just fyi, I may be MIA for a few days sometime in the next week or two as my grandmother is not doing well. She has stopped eating or taking fluids so we know it is only a matter of time now. I only hope she can go with peace, love & dignity. Will check in and continue to post when I can.
Hugs to you all............
0 -
Love to you and your grandma, odie.
Sarah xx
0 -
Sorry to read this Odie..thinking of you and your family and your Grandmother too. Take care of yourself.
Sarah...you think we would be arrested if I mailed you some melatonin? Lol..that would be the last thing we need. I can just see the news " Breast Cancer girls Traffic Drugs" Lol...as Lisa said we can get them here at the local drugstore.... I hope you can get this resolved...but I am with you ....for me though ..I wake about 4 times every night..I have not slept through the night in years I mean not once! I miss sleep.
Have a good night /morning
0 -
Odie - my thoughts are with you and your family.
Sarah - I tried melatonin but it made me nauseous. I talked with my acupuncturist about it and he gave me Neurexan by Heel? It is a homeopathic pill to help folks sleep. My MO had no issue with me trying it. And it worked for me. I can now sleep threw the night about 80% of the time. If I do wake up though I am able to fall right back asleep. My understanding is that Neurexan is available worldwide. Check with your doctor though if you want to try it because you don't want to try anything, even "natural" stuff if it might interfer with any other meds you are taking.
0
