Bone Mets Thread
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carpe diem. Welcome back.
Feeling stronger today. Just can't get it all together. Today staving focused on positive today see if that don't help pain and tiredness. The brain surely is a major controlling factor. Today I choosing happiness or be damned. Nice temp all though raining chit windows open , music on talking to my gals. Really nice. Now if I just find the energy to shower and dress. lol
Hello and hugs too all. Thank you ladies for keeping me sane
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ps. Love the pics. Wi derfyl to put names and thoughts to a face. Funny it's usually the same
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Patty hoping today finds you feeling a little bit better. Thinking of you all the time.
Carpe Diem I love seeing your pics of you and Terre! So glad you had a wonderful trip
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thanks.
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patty,
I know it's not quite the same, but after my lung collapse (which involved a long hospitalization and a month at home with a portable chest tube) I had a very tough time with energy levels and pain. I set very, teeny tiny goals for myself each day but modified them if I wasn't feeling well. If all I could do was brush my teeth and walk downstairs to sit on the sofa, then I congratulated myself and left it at that. I did try to get out of my pj's, but changed into nothing fancier than sweats or yoga pants. At least I got out of cooking Thankshiving dinner that year
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thanks
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Sorry to intrude but have a question about my scans. Who better than you lovely ladies?
My bone scan showed healing in two spots. Pelvis and lower back. I was never told about these spots before but they were confirmed on CT.
While it's wonderful they are healing, I'm confused. Are spots/holes always cancer? Doubt was an injury. What about osteo? I'm fair, small boned, not a big milk drinker but wouldn't it be more widespread?
I am just trying to process. MO thinks tamox working and not overly concerned.
Thanks.
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Hi Zills,
Are you saying that your mo believes you have healing bone mets that you never knew about? I am no expert, but it is possible that it is some previous injury even if you are not aware of having had one. If the spots are healing, I'm not sure if a biopsy is feasible or desireable. Ultimately, a biopsy does give a definitive answer, but if your mo never mentioned this before, I'd consider a second opinion. Take care
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Zills -- I'm with exbrnxgrl on this one. I couldn't trust an MO who didn't tell me about mets until they were healing. Great that they're healing, of course, but what else isn't he telling you? A new set of eyes might be helpful.
I have good news to share. I saw my MO today for my monthly visit and Xgeva injection, and my TM's are down to 22, having started at 99 in January. I am thrilled that trend continues downward, and he was also very pleased. I'm having no difficult SE's from the Aromasin and Exgeva, and I would like to stay on them as long as possible. I've read so much here about the negative SE's some have, and I'm not eager to change meds and risk those, so I'm happy this is working. I can now go on vacation knowing I'm doing as well on paper as I seem to be in everyday life. My sister moved to Florida last May, and we haven't seen each other since, so Rebecca and I are flying down next week to spend some time with her and soak up some sun. It's been raining a lot the past couple of days, and our backyard was quite flooded. I'm tired of Wisconsin weather right now and can't wait to get away from it for a while. The medical bills are piling up and we can't really afford to go, but I don't care. We need to go, and the bills will still be there when we get back, waiting patiently!\
Happy Friday to everyone, and maybe Saturday to you, Terre! I hope everyone is doing well and can enjoy the weekend. I hope you have sun and warmth wherever you are.
Sharon
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Sharon, cmon down the weather is great!
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Zill - I agree your doc should have told you, but indeed wonderful news!Sharon - Wow on your TMs! and glad you're feeling good. Eenjoy your vacation in Florida, the sun, the heat, the food, the drinks. We're expecting warm weather as of this week-end and really looking forward to it.
Myra - Lucky you to live in such a beautiful climate (and I can tell you appreciate it!)
Linda
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Terre and Carpe Diem, thanks for posting pictures! I agree that it helps so much to be able to put a face to a name. It looks like you guys had a great time!
Patty - you're in my thoughts and prayers - sending love and light your way. I hope you feel a little better, physically and emotionally, each day. I hope they can get things straightened out and get you feeling better soon! I think the others' suggestion of seeking out an opinion at a teaching hospital is a good one. Hang in there - we all love you lots and are with you in spirit!
Zills - when I was diagnosed with mets in 2013, they thought that two of the mets had been there on the 2009 scan, but much smaller and not really significant enough at that time to be identified as mets (could just tell in retrospect from the locations). Anyway, I know this isn't exactly the same, but I wonder if your mets that looked like they were healing weren't really clear as anything before, but showed up now as healing mets? Just a thought.
Love to all,
Amy
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I am days and pages behind. We're pretty much moved, but have no wifi at the new place yet, so I'm using my phone for internet. Will catch up next week when we have "real" internet at the house.
Hugs to all,
Terre
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Thanks for your alls input. Yes Amy I think that's what happened. You just explained it better. However he's retiring so I will be getting fresh eyes this summer.
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yes our closest teaching hospital is in little rock ar. Uams. Next trip there. Really want to find the cause to fix it. I got a lot if life to live. Cancer not growing but tooo darn sick too care. It's time for family time to feel well. To have energy to share love , laugh , hugs, memories. I refuse to be held down by whatever else is going on. I will find the solution . Period !!!! Thanks for the support. At some time time cancer meds will quit working snd we can talk quality of life then. But for now. I am pushing in finding this solution. . Thanks for your encouragement ladies. Sorry for the pity party then encouragement soeach and back again. Just being real.
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Patty, you have nothing to apologize for! I am so glad you want to go to Little Rock. I know it's hard to want to do anything when you are feeling do crappy, but I truly believe there is much hope you haven't tapped into yet!
(((Hugs)))
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Patty - I agree with Deanna - don't ever feel like you have to apologize! That's what this forum is all about - we are here for each other! This is the place you can share everything and folks will understand and care. I hope the hospital in Little Rock can get to the bottom of this so that you can enjoy quality time with your family and feel better! Keeping you in my thoughts and prayers - keep us posted.
Love and hugs,
Amy
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Last night both ds's spent the night at a friends. Kids free night. Dh and I took a drive thru the country at sunset with a sonic slush. Weather was perfect and it was great to get out of the house besides the dr or hospital. Came home and I. Feel asleep before ten. No great long romantic date night but felt great to sing with my honey. We so needed that !
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Aw Patty, I'm so happy to hear that. I don't post much on this thread because it moves too fast for me, but I have been reading everyone's posts and following what you have been going through. I hope you are feeling better permanently this time and that you can get some answers. So glad you and your DH had some free time alone. My DH and I do the same thing, long drives in the country, usually while I hang my camera out the window and yell "back up, back up! Now pull forward! No, too far...". Ah, what he puts up with. Anyway, such days are good for the soul, and I'm sure you needed it. Wishing you the best!
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Patty - Glad to hear you had a nice time with hd and hope for more!KWC/Terre - I'll bet you'll be happy to settle in your new place.
Dune - where are you? You feeling OK?
At last mild temperatures and sunny - it's beautiful today! Feel like sitting on my balcony with a good cup of coffee - but not warm enough yet. Bf will install the screen on my patio door today - feels like summer. I'm in a much better mood since my pain meds were increased on Friday - tolerable pain makes sooooo much difference!
Wishing you all a good Sunday! and hugs to all - Linda
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Hello to everyone,
Patty sounds like you and dh had a nice time last night, so happy for you!
Terre, missing you and hope you guys are settling nicely into your new home.
Linda, it's great to hear your new pain meds are helping and making your pain tolerable. I just tested myself by going for a nice long walk with dh, a gorgeous sunny day here, 61 degrees yay finally warmer weather. I feel a little tired but proud that I did it because our block is big and takes a half hour to get around. Maybe next week I can push myself to go farther. I'm just so happy to see and feel the sun.
Hugs to all, Annie
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Hi all,
Patty - glad you got a good evening. And yes, you have a LOT of life left to live and it shouldn't be in misery! Glad you're going to Little Rock.
I'm still pages behind and still no broadband at the house. This is so crazy. Technician is supposed to come today, so then hopefully I can get caught up again with this thread.
We're out of the former house (have in inspection in 4 hours and then we're 100% done), and have boxes and chaos galore in the new place. But it's so nice to at least be done with shifting and cleaning! I just have to find my clothes today. I found my floor length velvet skirt and wedding dress, but not my work clothes. Also found 2 bathrobes. So, it's evening wear for the office one way or the other unless I find the box with my clothes!
Annie - miss you too!
Sorry I'm not responding to everyone...
Hugs to all,
Terre
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Just a quick question...".saw my onc yesterday and again asked if I could lower the dose or frequency of Xgeva Tx....due to lots of exhaustion and bone pain. An update...my scans of bone have been inconclusive re a definitive dx of mets to the bones ....so why Xgeva...huh? I really feel sorry for the gals who are experiencing such limiting fatigue. We are planning to skip some doses for a while. Will check back.
Annie. Great idea there. ...a little outdoor escape with hubbyand soda best medicine! PEG
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Hi Peg, you've been away for awhile and was just thinking of you and here you are. I can't answer your question regarding xgeva but my frequency of pamidronate infusions has been changed to every 2 months instead of monthly. This is partly due to my last scan showing bone mets healing and my onc said to reduce side effects as these drugs stay in our system for a very long time. Where are your mets Peg? I'm confused if they're not in the bone why you were given xgeva?
I'm off to the cancer centre today but not for myself, a friend and neighbor is having her final week of radiation. Triple negative breast cancer diagnosed last June. She's been through such a rough time. It's sad that 5 of my friends have had breast cancer, why is there so much of this?
Hugs to all, Annie
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feeling : blesssed and highly favored
annie - glad you and your dh got out for a walk at 61 brrrr. the sun does feel awesome on our face and skin huh? i bet your dh loved it also. what a good friend you are taking your friend today. wow they say 1 in 5 have bc but your circle of frineds have gotten the raw deal. are u living under a powerline? stats somewhere there is a group of 5 women who none have bc. wow wouldnt that be awesome keep on getting the sun on your face. :-)
lindaE - hoping your pain tolerance is better with the new med changes. nothing like sitting on the patio
dune - i bet you are out living it up but let us know...k?
kiwi terri - find any more clothes? hope unpacking is going smooth..
shutterbug. now i understand your name better. i read your stable report on another thread. woo hoo stable rocks! good for the soul indeed. lol yes me to ....forward, slowdown, turn here, stop no stop up there.l. lol stick around & jump in and post often. you have an encouraging attitude. love it
deanna - thinnking of you
hope - hey , got more pics of the vacay?
yesterday way overall good. weather was perfect we missed church cause dss not home in time i got a couple hour nap that made a huge difference. stomach was good although still on soft gi diet. pain overall better taking breakthru med only in the am and pm dss had a great day outside...dh got a few things done around the house but did NOT WORK YEA!!!!! i was both inside relaxing and walking around a little and hangin on the porch. had all meals with my family at the table with my help prepping and we did family movie night. all 4 of us snuggling on the couch. great time !!!! this is what i am looking forward to more of
hello to all hugs all arounnd
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Hi Annie, Thanks for the post......the onc and I talked about the reason for Xgeva and since imaging is inconclusive and the benefit out weighed any possible harm...it would be ok. My old bones have fought too many wars and leave lots of question...it is err on the side of. possible benefit for now. Changing Tx times for now. Annie...hope your Tx schedule works for you. Hope everyone's week is a good one. PEG
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Patty, so good to see that you are doing much better! DH and I just got back from 3 nights in Las Vegas for an auto racing event. It was nice to be away, mostly to get DH to relax for a few days, which I think he needs more than I do these days. We actually played hooky from the race activities one day and just hung out, which was a rare treat for us. But after 4 days of restaurant eating and a few Starbucks frappucinos (far from my usual ultra healthy diet!), my guiding word this week is DETOX!
I'm also grieving the loss of my beautiful cousin, Tracy, who passed away on Friday at age 52 -- six days after she married the love of her life in a hasty ceremony when it became apparent she probably wasn't going to make it to the big wedding they were planning for August. The lesson we all need to take from this is, and the reason I'm even mentioning it here is, don't postpone joy.
Peg, it seems like so often bone mets are dx'd (or rather assumed) based very much on our hx of bc. I wonder if getting your scans re-read at another medical institution might shed any additional light? And glad your onc's letting you back off on the Xgeva frequency.
Terre, glad the worst part of packing and moving are behind you, and I hope you've found your work clothes by now -- or maybe not. Perhpas no work clothes is the universe's way of telling you to take a breath and slow down a bit!
(((Hugs))) to all ~ Deanna
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deanna - wow 3 nights in vegas with your dh. i guess what happens in vegas stays in vegas. so so happy for you and your dh. we all need a break from this crazy reality way more than we get it for sure.
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Patty - You certainly deserve some good days. Those precious moments with our family are priceless. I'm feeling better but still need breakthrough Dilaudid.Deanna - glad you enjoyed your trip - it's always nice to get away. I'm so very sorry for the loss of your cousin. I agree - let's not postpone joy.
Another beautiful day, the warmest in 6 months! Here I come patio...
Linda
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Deanna, my condolences on the loss of your cousin. May G-d send you comfort.
Leah
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