Bone Mets Thread
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Dee - great news ! Enjoy your extra time !
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Great news, Dee! Very happy for you.
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Dee that's great news, you made my day. We were all thinking of you. Enjoy your time away and celebrate!
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donutswife - someone will surely be along soon who can explain tumor markers better than me but here's what I know :
My mo said tumor markers are not a complete science. They respond differently to each person. He said the important thing is are they going up or down. He said some people with just 1 met might have count in the thousands and someone who has extensive mets might only have count like 100. Again the number is not so reliable only watching for dramatic swings up or down. He said if tumor markers change but scans show no change we wouldn't change treatment based solely on tumor markers. Hope this helps until someone else comes along. It is usually slower here on the weekend
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I am very happy for you Dee. You surely received great news worth celebrating. I would drink a Guinness to celebrate with you but my mommy won't let me drink while taking pain meds. Geeeeeeeeeeez!
Kiwi Terre I want to bypass winter and get right into spring and gardening. Pictures please.
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For Kiwi Terre. My goddaughter is using this for her tree and they are young and perfectly healthy.
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Such wonderful news, Dee! That should make your Christmas! Big hugs to you! Deanna
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Shutterbug - thank you very much for the link - it was very informative!
dlb - yay for no scan now and stable TM's!
Kiwi - to funny! Through the lights on top of the ornament box on top of the tree box and you are all set!
Dee - glad your tumor markers are done and enjoy your time away!
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Thanks all. For now in Miami heading to St. Lucia for a few days where I hope to forget what's coming! Nice to "meet" all of you.
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Oh geez thanks everyone for your best wishes, you made me tear up! We got home safe & sound on a very, very stormy & windy night. The ferry was just a rocking! We are both very happy that I am doing well, I think especially DH, who worries a lot but doesn't say too much, but is always right there for me. I'm still hoping for stable or NED but the onco won't say that yet.
Onco says no rads yet as I don't have enough pain yet. That's ok with me, I only take a tylenol once in a while & she doesn't want to radiate unless we need to. She thinks the back pain may have been a tumor flare as it got bad for a couple of weeks & now it feels like it's lessening. She also confirmed that probably my tummy issues were from magnesium, she says unless you are deficient you shouldn't be supplementing with it. (her words, not me telling anyone what to do)
Is everyone ready for Christmas? DH & I don't do much other than I usually cook something special for the 2 of us (not turkey unless we have company coming, which we don't this year) I bought him a little something to say thank you for all the crap he's had to put up with, with all my appts, but otherwise I'm ready.
Hope everyone is well! Cheers, Dee
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Wishing you a lovely trip nred.
Dune - thanks for the tree!
I did make my annual batch of fantasy fudge; I can find marshmallow creme here! Still don't have the tree up; maybe on Wednesday. glad you made it home safely Dee.
Don't have garden pictures yet, but our puhutukawa tree, which is also known as the New Zealand Christmas tree, is in bloom! I will get pics of it in the next couple of days.
Here's the card I sent to my clients - it's a shot from our back yard looking at the sun set over Kapiti Island.
Definitely a pretty place to live!
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Anyone monitoring bone tumor markers, specifically? I've been reading they can have prognostic value. I think there was a study just published. ZOMAR, I believe. Just wondering if this is worth mentioning to MO.
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KCM, wow, what a beautiful photo, you do live in a beautiful place! Maybe we should post a photo of a beautiful view from our own areas? Anyone else? I will, if you will!
Romansma, My onco checks TM's regularly because they are done at the same lab each & every time. While she doesn't take them as a definitive answer she says they show a trend. In the last 7 months mine have gone from 60 to 12, this along with CT scans & bone scans have given her a good picture of how my mets are reacting to the new drug. But a lot of onco's don't or won't use them. Cheers, Dee
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kiwi - pretty indeed !
Romansma - my mo checks tumor markers monthly when I get lab anyway for xgeva shot.
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Hello! I don't post much but I read your posts and get a lot of valuable information. Feels wonderful to know I am not alone as being Stage lV in a small town can be a lonely place. Thank you ladies for being an inspiration! I've posted a view of Vernon's Kalamalka Lake. I wish you all well - Karen
PS - Dee you would have seen this view many times.
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I get my tumor markers checked every month. When my markers began to rise my MO changed my treatment from Faslodex to Xeloda. I'll be starting my 3rd cycle of it tomorrow. I'll be able to see if they are going downward, hopefully, next month. Some doctors don't use them.0 -
I meet again with the new oncologist on 12/26, and I'll find out how or if she monitors tumor markers. The old one ordered labs to be done about a week, before I was scheduled to see her, which has been around 6-8 weeks since Stage IV.
Kiwi Terre, that's a gorgeous view. I don't have a particularly pretty view from my yard. It's just a typical suburb. If I see something I'll share it, though.
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Beautiful view Mikarae - your part of the world is indeed stunning. I spent many childhood summers in Vancouver and Victoria and around Washington/Oregon. My grandma was a school teacher so I spent my summers travelling with her.
My MO checks my tumour markers but they've never changed. They didn't do baseline ones when I was first diagnosed, so he can't tell if they're just stable or if they don't work for me (they don't work for everyone - some people just have them never change regardless of what's going on with the cancer). I know for some, however, they can be indicative, particularly if there are large changes. If nothing else, a large change may signal a second look with some sort of scan.
Hugs to all,
Terre
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Mikarae, Not sure I've seen that "exact" view, but yes, I've been up there many times. Actually we're going to go to the OK twice this year, though in the spring I think we will stay in Oosoyos & then just go up as far as Summerland to visit with dad.
Here's a couple of shots from where I live. Not at my actual house....
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WOW!!!! Stunning, GG!
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Beautiful pics of where some of you live. Truly stunning. I will not entertain you with shots of downtown San Jose, but am planning a trip to Capitola (coastal) in the next week or so should get some good pics. Happily, it's only about 45 minutes away.
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Mikirae, Beautiful view of a gorgeous place. Have a wonderful restful Christmas. Hugs, Peg
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Hey everyone. Romansma, you know my daughter only got RAD in the begining, and then once again. They were so cautious in not doing too much of it but now i'm not so sure if maybe that coulda have halted it back a bit? who knows, but she's got all over pretty much like you I'd say. Hope you could enjoy Christmas.
Pattypepper, you are so sweet, thanks for your support.
Deanna - maybe you could chime in; does it matter where and who is doing the bone biopsy? I did some homework and found out today the main guy i would have like to do, is not in the country presently, so s/o on his team, supposedly as competent will perform the biopsy. And i was told i should not delay it, with the holidays and all, as is, they said is gonna take longer and then...You see, the onc thought mayb she was being straightforward with me, i don't know, i know she cares much for my daughter. My daughter, was at our home today, dropped off the little ones so she could go tom w her hubby, and she could not even look at me, that's how scared she was, she hates it that i have to deal with that, that i have to hear this horror (she told me that once), and there is absolutely no conversation about this whole thing. I know, that i'm scared, and she is scared in multiples. I tell you guys, it's unconscionable.
Terre - I appreciate your venting also, you see guys, it's bcs it all started with such a nightmare, she was 25 when diagnosed, and this person was accessible and had a very good name, so i (we) thought it was gonna be a perfect fit. How she is gonna tell my daughter to go someplace else, i can't even imagine. And my thinking process is to get the results of the biopsy and then act, bcs otherwise i'd be delayg this whole thing. I'm just upset that she waited so long to talk to her about this option.
Shutterbug73- love the site info you sent, thx so much.
And i was thinking in being there to hear i don't know what, and stay with my sil, but she prefers i stay with the girls, otherwise i'd have someone else watch them. If they do come out and say somtg in the middle of the procedure, i hope my sil will understand, he is very good, but i don't know, i just may go anyway, and she doesn't have to know i was there. Something, to think about.
Hope you all have a gr8 night, i'll ck in the morning (the little ones r gonna wanna use my laptop to watch cartoons, i'll have to fight them for it) Love to all,
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I have my tumor markers done too, but I'm curious about specifically bone resorption markers. There are some new studies showing they may be important prognostic values.
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Thankyou to the ladies who replied, sorry I didn't Thankyou sooner but have had a really bad case of gastro. I am currently on aromasin, have been for 2 months so maybe that's causing the joint pain.
I would like to wish everyone a very merry Christmas and a prosperous new year. I don't write on here very often but do read everyone's posts. 😊
Jennie
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I'm loving the photos everyone is sharing. This is a view from my neighborhood on a winter morning.
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Help! I think I'm literally sick to my stomach with worry. Bone scan and CT a week ago show bone mets to pelvis, sacrum, lower spine, upper spine, skull and probably femurs. I need to hear that there is hope - I'm not feeling any right now. All encouragement welcome. How did you cope with the overwhelming fear after your stage IV diagnosis?
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impuniti,
So sorry that you have to join us. The beginning is a terrible shock. Have you got a tx plan in place yet? Once this happens, it seems that having that path to follow makes it easier. I am in my 4th year and living a fairly normal life after rads to my met and AI's only.. Take it one day at a time, learn what you can about your condition (but try not to go to the worst case scenarios) and make sure that you are very comfortable with your onc as this is going to be a long term relationship. Take care.
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Romansma, thanks for clarifying. I'm not familiar with specific bone tumor markers, but it sounds like very promising information. What does your onc say about it? Let me know if you want me to email my UCLA onc about them. I'd be very curious myself. Do you have a link you might be able to share with us?
Jennie, if your scan was clear in September, your joint pain could well be from the Aromasin, especially if the shot is helping. Not sure it would do that if it was bone mets causing it.
Momallthetime, I have a huge bias against doctors who don't know what they don't know. Any doctor can say he/she specializes in something (e.g. breast cancer), but the real question is, how many women with breast cancer do they actually treat each year? Or in this case, how many bone biopsies does he/she actually do? Those are the questions you need to ask for any procedure. And, yes, the negative comment her onc made probably seemed worse taken out of the context of the whole conversation. Hopefully, she explained to you exactly what she meant when she said it -- not just a kind of hopeless lament, which is what it sounded like out of context. Is your daughter's bone biopsy is today? If so, I'm glad she's getting it done. It'll be one more good thing to have for a second opinion, if she decides to go that route.
Meg, I am so sorry about your mets dx. And, yes, what you're going through is totally normal. It's shocking and surreal to be told that you have mets. But getting on the right meds will make a world of difference. Last year at this time, I was one very sick girl, but what a difference a year has made. And yes, it's also a huge emotional rollercoaster at first. The best advice I can give you is to know that you won't always be feeling as afraid and sad as you must be feeling right now, and that the meds (possibly an aromatese inhibitor if you are ER+) will do absolute wonders for your situation. Also be sure that you have an onc who is truly up on the latest research -- one who is in the group of bc oncs who view bone mets almost as a chronic condition with which we can live for many years -- NOT one who is all doom and gloom about it. And lastly, if you are in pain, don't be afraid of pain meds, but also know that all pain meds don't work the same for everyone. Don't be afraid to advocate for yourself until you get on something that eases any pain you might be having, because it's impossible to think the least bit clearly if you are in pain, which can also improve greatly as they start to tx your mets. Big (((HUGS))) to you, and glad you've found us! Deanna
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Meg, maybe ask your doctor for some anti-anxiety meds. They can help, as many here will attest. I watched endless sitcoms to keep my mind off the fear. The anti-anxiety med will do something similar. There is still hope, we can live much longer these days because of better drugs. It's been 7 years for me since diagnosis of stage 4 and there are many others here who have let the years roll by as well. You will feel better once you have a treatment plan in place.
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