Bone Mets Thread
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Had my TMs taken today
CA15-3-went down again this month -from 46 to 32-back to the normal range!!! Yahoo!!!
CEA went down from 12.7 to 8.6
Will be having scans on 6/28 but based upon my TMs I'm optimistic
Babs
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Babs
Thanks for sharing GREAT news
Mary
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Dixiebell...thanks for your thoughts...will definitely get a second opinion...we live fairly close to Mayo Rochester ...Saw a ONC there when I was first diagnosed in 2011
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Great news, Babs!
Carol just noticed your new avatar photo in this round of reading. Nice photo and nice to "see" you.
Good evening to all.
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Fabulous news Babs! Fingers crossed for good scans, you'll have to remind us. cheers, dee
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Babs, WOOHOO for your TMs! That is great news.
Lynne
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Babs great news on TM!
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Hi Carol...love your new avatar!
Babs, Great news on TM's
Lynne, thinking of you as you have the kidney stone blasted. Let us know how it went.
Stilts, I saw an MO at Mayo for a second opinion and was glad I went.
Milaandra, What a dreadful time you've had. Hope you get some relief and resolution for that tooth.
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Great news Babs! So happy for you to have those numbers back in the normal range!
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Babs that super great always love the good news.💐🍾💐🍾
Carol so nice to see your beautiful face you look incredible.
Just got my copy of radical remission (yes I'm the eternal optimist) has anyone read it? Thoughts?
Wendy
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Wendy - I did read Radical Remission and thought it was great information! The diet aligned with everything else that is being published...of course it would be better if I could follow the diet with more discipline. I had been neglecting the metaphysical part of this illness (and life in general) and this book really helped me remember that managing and focusing positive thoughts has a powerful impact on quality of life and maybe health itself.
Share your thoughts when you get done! Would love to hear what you think.
Did other readers feel this book offered something helpful?
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I read Radical Remission a couple years ago when it first came out and loved it. One of the best books I've read since diagnosis. Highly recommend it. It is very inspirational in a practical way and gives great food for thought
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I also read the book. Loved it and have made many decisions based on several of these books. You would also love Crazy Sexy Cancer by Kris Carr stage 4 not breast but mets to many major organs and living with it for years
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I have it on my Kindle. Thanks for reminding me!!!
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Babs - Awesome news!
Carol - yes, I like your new avatar.
Dee, Talk about being stuck between the devil and the deep blue sea. What is your RO's input on results? I would give some serious thought re Ibrance if I were in your shoes. It may be your only chance to get it, especially that the pan-Canadian Oncology Drug Review is recommending that it not be approved in their initial recommendation. And you always have the possibility to go back on Arimidex later on. If the clinical trial MOs deem that there is no progression, would you still qualify for the trial? Is this a double blinded study? Do you know if you will get Ibrance or a placebo? What is the other drug used? If you join the trial and continue to be stable when the trial closes, will one or both meds be still available to you? That's my 2 cents worth of questions for now at least.
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Babs, that is such great news on your tumor markers. Doing a happy dance for you!
Wendy, I'm reading Radical Remission right now, I'm on Chapter 8 and I find it a very good read, so much to take from it. One of the chapters talks about a healing form of exercise called Qigong. I've been doing it daily since last December and it helps me tremendously! I'm incorporating several changes and noticing positive effects. Keep up the optimism!
Carol, you look fabulous, love your new avatar.
Hugs to all, Annie
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Congrats on the tumor markers Babs! Great news
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Annie,
How do you "do" Qi Gong? Is it a class or can I go on youtube and learn from home? I'd be very interested in that.
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Christina, How are you doing?
I ordered the QiGong DVD's from the instructor who teaches the class that Annie goes to. Go to www.georgepiccard.com and order The Village of Healing and Wellness. You get 2 DVD's. One is a follow along QiGong and the other is a 4 part instruction. The DVD's were created for Recovery for individuals with cancer. I do what poses I can. I've noticed that my breathing is much deeper and better. Annie is a pro at it and I'm sure she will tell you a lot more! I'm still learning!
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Lindalou- the link won't open.. I am interested in it too.
Christina- Big kisses and hugs.. xx oo
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Well, I just realized that I somehow lost this thread from my favorites on June 1, which has happened before when I've been on my phone. So quickly catching up on 2+ pages...
Welcome, Stilts. Glad you've found us. From my own experience, I second Carol's suggestion about getting your slides re-read. The difference in path readings can be surprising and often hinges on experience, which is why having a pathologist and team that specialize in mbc is important.
Ebru ~ Good to see you here! Hoping your scan results remain stable!!!
Milaandra, I'm so sorry about the jaw issue. As I may have said back a few pages, my UCLA onc is cutting me way back on my Xgeva dosing schedule due to what she now suspects might be an increased susceptibility to ONJ for those of us on Ibrance. You might recall I also saw a specialist @ UCLA prior to going on Xgeva, and I can give you her name if you want to possibly email her any questions if you can't get them answered where you are. I just hope and pray you will be in the 40% who experience healing -- and quickly!
WooHoo to Divine for 4.5 years on Arimidex, and Babs for those amazingly low TMs! Such great news!!!
Dee, I think I weighed in on your situation when you first posted it. I am also extremely positive about Ibrance, so if there's a possibility this will be your only shot at getting it, as Linda suggested, I'd go for it. I believe if Anastrozole hasn't technically failed you, you can go back to it or to another A/I in the future, which might be reassuring to you.
Carol, love the beautiful new avatar!
I think someone else posted a question about a discrepancy in scan reports -- don't see it now scrolling back -- but for what it's worth, this is also something I recently asked about at UCLA when something that had been mentioned in the past was not even mentioned on my most recent scan. And I was told that it happens all the time... that radiologists read literally hundreds of scans a day, often not comparing then to previous scans and quickly calling out everything they see, and that many times those areas are never seen nor mentioned again. So just one more way we learn to roll with the uncertainties, I guess.
So I just sent out the updated member list to everyone who had sent me their information. Thank you all! Don't hesitate to let me know if there are typos that need correcting. We'll be away for a few days (escaping our 117 predicted heat), but I'll take care of any needed corrections next week.
PS ~ I just realized the formatting -- spacing, bolding, caps, etc. -- on my original copy aren't transposing into BCO's PM format when cut & pasted, so it's all kind of run together. Sorry about that. I'll figure out how to preserve that so it's easier to read next time.
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Deanna- Thanks for the updated list. I know it is going to be hot where you are -- so be cool and have a wonderful weekend.
Edited to say: I know you really are already "COOL"
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Thanks for the update Deanna. Just got it.
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Yes Carol that's it! (I added an extra c in his last name in the first link.) Type in Recovery QiGong in search and you will see more info on it. The instruction that George does on the postures is very easy to follow. He illustrates them himself.
Thanks Deanna for the updated list.
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Deanna, thanks for the list and also for all of the kind words and support that you offer to others here. You always seem to find the words to say to inspire us, comfort us, and encourage us. You are much appreciated here!
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Lindalou, thank you for sharing the information with Cristina! Believe it or not I was at a friend's teaching her the Qigong.
Deanna, thank you for the updated list. We all appreciate you taking the time to put that together.
Crisitina, it is important to be doing authentic Qigong, the link that you were directed to will allow you to order the DVD for the 24 posture Qigong for individuals with cancer. You can follow it and do it in your own home. I practice Qigong daily as well as in a group where Sifu George Picard teaches it to cancer patients. I have seen it help many people and improve their quality of life. It has helped me tremendously. As a matter of fact I showed my oncologist last Friday and she couldn't believe how well I could move.
Hugs to all, Annie
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Lindalou I just ordered it!! Thank you!!
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Deanna, Thank you so much for the updated list. Bless you for taking care of that for all of us. 117 degrees? Ewwwwww. I would be a very grouchy woman since I do not like the heat. Enjoy your weekend.
Lynne
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Hi everyone and happy Friday.
I ha the surgery to zap my big old kidney stone. Yay! I have a stent in for the next week. So far, so good, and I am hoping I am one of the lucky ones who experiences no pain from it. I will be scheduled for a nuclear scan of some kind in the near future to check on a "pinched ureter". The urologist thinks it is nothing of significance, but she is being thorough. I will also need urology scans every six months from now on to check for new stones as well as to check for changes to my other (non-functioning) kidney. I will have to talk to uro and onc to see if we can combine scans. It's hard to believe that just a year ago I had never had anything wrong with me and had never come near any type of scanning device. My oh my how things have changed.
Two more days will mark one year since my bc dx. Look at me, I am still alive! Woohoo!
I will check in later once the anesthesia is completely out of my system.
Lynne
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