Bone Mets Thread
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Love the pics! Thanks for sharing, Kiwi, GG, Mikirae and Deanna.
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Meg - so sorry about your bone mets but glad you found us and welcome. I was dx one year ago stage 4 from the onset with multiple bone mets, and yes it's scary and overwhelming. But one year later, I'm doing very well, much better if fact, on hormone therapy. All mets are stable. Like Deanna says, don't endure pain if you have any. I juggle with pain meds as required and had rads on several bone mets for pain relief which greatly helped me. There is hope! What is your tx plan? Keep us posted. Hugs and prayers coming your way.
Linda
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Romansma, I'm seeing my MO tomorrow and will bring up question re bone resorption as per ZOMAR study. Linda
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Meg, I got my bone mets results just in May, so it's been very much front & centre. Like everyone else says, once you have a plan in place it's much easier to cope with. My meds were changed from Tamoxifen to Arimidex and my markers have steadily come down & it seems that my mets are healing. When I got the call we were terrified, now we live life more enjoyably than ever. Please read the thread "there is life after a Stage IV diagnosis" it literally saved my sanity. (hugs) Dee
Deanna, love the pic!!
Looks to be a beautiful day here, I'm going out to play in the garden! Christmas is wrapped up for me (sorry, pun intended)
Cheers, Dee
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Love the pictures everyone. They are quite beautiful. Happy Holidays to all.
Terri
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Thank you, all, for your words of encouragement. I think an anti-anxiety med is a really good idea. Glad to hear that I won't always be this scared and sad - it is hard to imagine it, but REALLY good to hear. I am so stuck inside my head right now - wish I could just climb out! No tx plan yet - still some tests pending - but I'm supposed to hear something by the end of the day. I'll keep you posted.
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hello ladies
I just got switched to faslodex. Doc said recent clinical data shows better OS with faslodex for first line mets treatment even better than the cdk4/6 trial. Have any of you had a good run on faslodex?Many thanks
Kelli
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Hi Meg, i so could understand your shock. This thing (i can't even say it's name all the time), took hold my daughter and the fear and anxiety is felt all around. I think it's good advice to maybe get anti-anxiety something, panic attacks and anxiety are very real, and it won't even allow for you to do the real thinking that you need. Best wishes.
Deanna, you know when i read what you wrote about not even waiting for the results to come in, i slept on in, and voila, i got to work this morning, i started making inquiries, and i spoke to our fam.physician, he is her doc also, and he said, sure DON't wait get moving. I love your directness, and thank you so much for the push. It's weird bcs she does specialize in BC, but the way she is scared now, that's how i feel, one would think she hasn't seen a/o in this state. She is emotionally attached, i know. But, really, she should be giving me names and stuff of ppl i should go to, this NYC, no small town. I think she should know who would be the right person to follow this. The biopsy went well, about 1hr, the person that did it, is an interventional radiologist, and they took it from the hip bone many cells, and they are sending it to various places to find out the genetic material...(something very close to that).Hope recovery won't be too bad, we'll see when the meds wear off. My daughter is in moderate(?)pain from her mets, and clanking along... We had a Chanukah get together with her sibs last night at our home, it was a lot of fun. Everyone played along real well. My children "the actors", who knew? Saw your beautiful scenery, what a view to wake up to!
We'll keep in touch, maybe i'll hear part of the pahtology report this friday. Have a great night.
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Hi Kelli I've been taking Faslodex plus letrozole (Femara) for almost two years now. No spots seen on PET for a while. There's a lady on these boards who has been taking Faslodex for four or five years.
There's a paper (from the New England Journal) which basically says that Fas + Femara was better than Femara alone as first line. It should be free to read at nejm.org. HOWEVER, there was a study which came out in the Journal of Clinical Oncology about the same time which said there is no advantage.
I've read both studies and think the JCO paper is not as good. What the curves in the NEJM paper do show is that if you are in the 50% of people who last a year on Faslodex, you have a 50% chance of lasting 3+ years. It seems that those to respond well respond for a long time.
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meg,
Here is the thread that GG27 referenced:
https://community.breastcancer.org/forum/8/topic/8...
It can take some time to get to the point where you feel like you can have a good life again, but it's not impossible. Your life will never be the same as before bc, but it can be a good life never the less
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Thank you all who posted the beautiful pictures!!! I think I need to add British Columbia to my travel list (New Zealand already on it!).
Meg - As someone who is only 3 months in to my mets dx, I would also highly recommend anti-anxiety meds. I would also recommend writing things down, it helps sometimes to get things out of your head and on paper. Doesn't matter if what you write makes sense or not, at least it helps me, if I write it down then I don't worry nearly as much about it. I'm a big list maker
. It is quite a roller coaster of emotions, still for me, but it does help once you get a treatment plan in place, that took about 1 month for me. I still have a lot of research and learning to do, but realize I can't read everything at once, so am not fretting over that yet. Dee - thanks for the recommendation of that Life after Stage IV thread, its not one I saw, I will have to go read it now!
Patty, I would be curious what you or anyone else finds out about specific bone tumor markers. I have to ask my onc how often she will test my TM, right now it has only been done every 6 weeks. Seems many of you get them done monthly.
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Beautiful pic Deanna! Thanks for that - needed a smile today.
Sorry to be out of touch and rushed..came home last night and husband had bizarre blisters all over his foot. Long story short, took him to quick care then to emergency room and got home at 3 am. Then up and off to work at 6 am. He's still in hospital - blood infection and is on IV antibiotics. Hoping he might get out tomorrow, but more likely will be Christmas or after. So I'm tired and a bit stressed.
Ippuni - Tomorrow I will try to post some de-stress tips that worked for me. Everyone is right - it does get better with time. The fear is overwhelming and intense, but it becomes manageable.
Hugs to all..don't mean to skip over people, but...I'm tired!
Terre
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Terre sure hope hubby responds quickly to the IV anti B's so he can be home for Christmas.
Wishing everyone the best Christmas possible and Happy Hanuka to those who celebrate this holiday and welcome to all the new girls joining this thread.
Love n hugs. Chrissy
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Terri - hoping for a speedy recovery and home soon for your dh.
Meg - glad you joined the conversation. Yes anti anxiety meds work well. ESP late at night when everyone else is sleeping and your brain won't shut off. I have been on femara for 1 1/2 years for bone mets. Time and talking about it def helps. Hope these ladies gave you hope because they certainly did me.
Love all the pics of everyone's local places. Gotta think what I would post. Nothing as beautiful as those posted pics here.
Can't remember what everyone has going on and to lazy to take notes now. So hope everyone has a great pain free day
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Hello everyone,
Ippuni, welcome but sorry you have reason to be here. I am fairly new here too, as of September this year. Don't know what I would have done without the knowledge and support of these wonderful women. They are right, it does get easier but it takes time. Anti-anxiety meds are definitely a help, I used ativan in the beginning to get me through and it worked. Best of luck to you for a successful treatments plan!
Terre, you've got alot going on right now. It's no wonder youre tired and stressed. My prayers are with you and dh, I hope he has a speedy recovery and is home by Christmas. Please be sure to get some rest and take care of yourself. Keep us posted as to how he's doing.
I'm laying here in bed and need to get up but just feel so tired and so achy. I have to say the radiation after effects have not been pleasant for me. I'm having a major flare in my pain, especially my L5 and humerus. My legs have been so sore as well I feel like I'm 90. Sure hope this passes soon.
Loved all of your pics, wow some of you have breathtaking views!!!
Wishing you all a great day. Hugs, Annie
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I love all the pics that have been posted. Here is one of mine taken from Weehawken NJ looking east
Happy Holidays to all
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GG27- Wow! What a view! Lucky you. We've been to BC and it is so lovely.
dlb823- looks like all that rain turned to snow in the mountains! Snow pack=water the rest of the year. Beautiful picture. Lucky you too!
Kirstensmum- aromasin can cause joint pain. I don't think the joint pain is as bad as arimidex, but it is constant.
Meg- sorry about the bone mets. Read about all your options and then look at how long some folks have lived and things won't look as bleak!
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I've barely skimmed this morning's posts, but wanted to send a quick hug & prayers out to Terre & her hubby! Seems like when it rains in pours! As if either of you needed him to have this happen this week! So sorry!
Speaking of rushed, I want to quickly share the ridiculous thing that I did yesterday. I'd glanced at my calendar first thing in the a.m. and headed off to an 11:00 a.m. dentist appt. Sat there for 1.5 hrs. on a day when I am totally stressed and rushed (no gift yet for DH or son, no cards out, no menus planned, no food shopping done... you get the picture) but wanted to squeeze this appt into 2014, so had made it anyway. Never called in (small office and I'm the only one in the waiting area, even chatting with receptionist a bit about our Thanksgivings). So at 12:40 I finally get up and ask her if I possibly had the wrong time. She looks at me strangely and asks, "Did you think you have an appt. today?" Duh!!! Why else would I be sitting in a dentist's office reading the last 3 issues of Departures magazines for an hour and half on 12/22???!! Anyway, it turns out my appt is at 10:00 today. My 11:00 appt is NEXT Monday. Oh my... talk about being so stressed that you don't know if you're coming or going, LOL! Anyway, I'm rushing now b'cuz I'm off to the dentist -- again -- but thought you all might get a laugh out of my silliness!
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KCM, hope hubby is on the mend soon & home before Christmas. Christmas in the hospital sucks!
Annie, Sorry that you're having tumor flares, they are terrible, hope they subside sooner than later.
Kirstensmum, When I was on aromasin I had terrible joint pain, so bad that I couldn't sit still for 1/2 hour before I was in extreme pain. I finally went back on Tamoxifen, but then I got mets, so now I'm on anastrozole & don't have any SE's. So it seems to be very individual.
NYCC, wow, that's quite the view. We've traveled alot through the US, but never made it as far as New Jersey, I had no idea it was that pretty.
Deanna, I have done the same thing, luckily after about 10 minutes of chatting the receptionist finally asked me why I was there? "Your appt isn't until tomorrow!!"
Hope everyone is getting all their holiday chores done without too much stress! Me? I'm going out to play in the garden, I have a huge pile of wood chips that need to be spread on all the paths. The tree guy dropped off a truck load of them for free! YIPPEE! Cheers, Dee
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Meg...I'm newly into METS since April 2014...I had a rough few mths...to find the right treatment plan...had rads/chemo in the beginning...chemo Xeloda had 3 rounds...14 days on 7 days off stopped in June....caused severe side affects "for me"...then IV Chemo Taxol just stopped Dec ..wasn't for me due to counts going up and tumor markers raised several marks up...but I started with over 250 and i'm down to 50....so now Faslodex....started last week...it's a roller coaster to find the treatment that will keep are chronic disease stable...I'm stable now...nothing new after PET scan in OCT....due for another scan in Jan....my OC is very good and listens and cares....about me...I still have days that i'm pissed and scared...but they are starting to get far and in between....I'm going through this alone...I have a young daughter ...with her husband...and my grandboys...but they haven't been very active in my journey...I have one friend...that calls daily and see's me...and of course Facebook folks...checking in....but it's not like having someone around all the time...I just had to surrender to that...and get on with it...I can't force folks to care about me...I just live day to day to my fullest...because it's my life....I only know that I'm going to be here and hope longer to see my grandboys become young men...they are 2 yrs....9mths...and a 8 mth old...that is my goal...so that is how I stay positive...and I can't wait for spring and summer...winter...it's a little harder to enjoy the outdoors...because it's cold...and right now...cold does't agree with my bones....
I hope all of you ladies enjoy your Christmas with family and friends...and rememeber we are here to do that at this point...God Bless Carla
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Hello ladies,Romansma - I asked my ONC today about your question re bone resorption markers. I'm afraid I don't have an answer for you. She said not used and not useful for bone mets.
My calcium level is slightly too high. She stopped calcium supplements about 5 months ago but still creeping up. I have my monthly bisphosphonate tomorrow and she wants to monitor the calcium beginning of January. Anybody else with high calcium levels?
To all you wonderful ladies, a very Merry Xmas!
Linda
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Just a quick note to say thanks for all the good thoughts everyone. Hubby may come home tomorrow. Seems to be responding to meds. Hasn't improved his mood, unfortunately, but hopefully he'll be a bit more jolly when he gets home.
Will try to catch up on reading tomorrow...or later tonight.
Hugs to all,
Terre
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Linda, my calcium levels have been creeping up, not too high yet, but my onco is now testing monthly instead of every 3 months. My levels are being tested on the 29th, a week before my pamidronate on the 2nd. But I don't know what she will do about yet. Cheers, Dee
edited to add KCM, fingers crossed that he is able to come home tomorrow.
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Thanks Dee - My calcium is monitored every month. Had my infusion not been tomorrow, she said she would have had the infusion done earlier. I think she may want them every 3 weeks instead of 4. This "chronic disease" is high maintenance...Linda
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Linda, High maintenance is right! I feel like I'm always on the ferry going to some appt! It gets old, very fast. Oh well, better than the alternative!
Fingers crossed that your levels get better. Cheers, Dee0 -
Hello to all!
Terre, praying dh is on the mend and will be home for Christmas. Please enjoy some nice restful time off.
Linda hope your infusion went well and that your calcium levels get to normal real soon.
Dee, I agree about the traveling to appts. getting old fast. I have quite along trek to get to mine to and find it very tiring. But you're right, better than the alternative.
Well wanting to wish you all a happy holiday season and Merry Christmas. Praying we all have a good New Year and hoping for successful treatments for everyone. I have a few more things to prepare for tonight's dinner so I better get busy. Here is our Christmas tree, a work in progress for a month. Slowly but surely is the only way I can do things. Hugs to all, Annie
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Your tree is beautiful Annie. We opened our presents this evening. My niece and her husband and children came this afternoon. That was the best part of course. Mom and I see what Santa left in our stockings in the morning. Merry Christmas to those who celebrate it!
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Annie, your tree looks lovely..I know what you mean by " pacing yourself"to get things done. It shows though, the love for those closest to us. Are those Christmas cookies thatI smell baking? A very wonderful Christmas and healthful blessings to all in the new year. Peg
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Deanna, hi, i sure hope you got to enjoy Christmas. It's so interesting, my daughter also had 1/16 nodes, also gr 3 and the type very similar to urs.
Deanna, i read what you wrote about a 2nd opinion and i so wanna thank you, because of what you wrote when i was just sayg that the situation is not gr8, you urged me to get moving, and not wait for the biopsy to get back. And, that night in bed, it came to me and i got the push to start making phone calls. And everyone of the ppl from the community or even doctors that i already spoke to, all said sure i should b doing the leg work and get a different look into things. Someone else, in a dif site, when the PET came back and there was mets all over the skeleton, incl skull, told me i should ask for a MRI of the brain to have a baseline. At first the onc was reluctant, but i was nervous,and i told my daughter to ask again, and you know what, there is a minute mass on her sphenoid area(somewhere behind the eye) that onc wants the rad guy to see it, but it will only b possible after the new yr. How do u like that? not so crazy mom huh?!
Deanna, we are in NY, so the biggest place here would be Sloan Kettering, which my daughter is gonna hate to go to, bcs u only see bald ppl etc... she never goes w her head uncovered, she can't take it. But, we'll deal w it, the question, is near NY could you think what the best option would be, i spoke to some docs already, and they seem very sorry, but they think she kinda was on e/t already, and she should go on some clinical trial. I was thinkg of a way to get s/o at MD ANDERSEN mayb to see us. But how do u get them to see u? How do u get any big places to see u, like yesterday.
Thanks so much for taking the time, and maybe you guys could give me an idea. At this point she knows we gotta go for a 2nd opinion, but i would not say how disheartened her onc was. We are tryg to keep things normal, it's very tough on the sibs also. It's really a matter of going to the place that could give us most hope at this time.
And thank you e/o for all your support. Hope everybody was able to have a break today!
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Hi Pajm, It is good that Faslodex is working well for you....two yrs and good scan report...really good. I started on Faslodex and Herceptin one year ago. Scans showed no progression..I am MBC mets to lung and bone. CA27/29 staying in the fifties each month. I am motivated to check with MO regarding including Letrozole since I have also seen encouraging results in my journals re that combination. Your post is so encouraging...would like to see those TMs lower. Have you seen a decline in your TMs with that regimen? Again thank you for your helpful post and many blessings to youas you start the new year. Peg
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