Bone Mets Thread
Comments
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Woohoo Patty! Awesome news!
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Patty, that is so uplifting. I was worried about you with all of those trips to the hospital. What a huge decrease. Very happy for you.
Stefanie
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Patty, literally tears of relief and joy for you. Thanks so much for sharing. Hugs and a happy dance.
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Just popped in after not being here much lately, and I'm so sorry to hear about Charlene/Dune's passing. I am very big on recognizing how important it is to maintain a good sense of humor, and she surely had that. In spite of her pain and her fears, she never lost that spark that made us all smile. RIP dear Charlene. You are loved and will be missed. I take comfort in my belief she is now pain-free with a huge smile on her face in a place where cancer doesn't exist.
Happy New Year to all. I'm glad to read that some of you who have been struggling are doing better, and I hope those who aren't doing so well right now will get relief soon. May 2016 be a healthy one for us all!
Sharon
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Patty, Terrific news and I am so very happy for you!! 50% decrease in SUV is huge!! Yay Yay Yay
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Happy to hear good news Patty!
My Mom is back from surgery. No movement of her right elbow for 10 days. Potential discharge to a rehab facility in 2 days. I hope they are gentle to her bones. Also hope they can help her get to RT daily
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Hi Everyone, Patty super happy for you! You really needed some good news. Glad you are feeling better. Dee, so funny, um I struggle sometimes too so I stay away for a couple days and then come back. We went to Fredericksburg, TX for a couple days and I saw a sign that said "Cheers- an English saying" and it made me think of you. Terre you are crazy busy and I find that very wonderful.
This is a picture of our dog Gracie. She is a rescue.
and this is Cali our other rescue. Hope everyone has had a really great day today. XO Dana0 -
Patty--that's great news! But what's suv
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Niki - glad your mom is through her surgery ok and do hope they get her on the mend and pain free soon!
Hi Ellelou and Stefajoy! And Rachel and Sharon! Nice to see you!
txmom - looks like you survived the nasty storms. What beautiful dogs! I want them both.
Managed to unpack 6 boxes in my office-to-be....about 8 more to go. Of course, I've unpacked 6, but only put 5 boxes worth of stuff away. At least I don't have to turn sideways to walk through the room anymore.
Wishing everyone a good day!
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Dee, Welcome back. We always like hearing from you. Of course, we missed you during your "long" break. We did miss you, but we are happy that the break was a short one.
Patty, YAY for you PET results. That is terrific news.
Txmom, I love the pictures of your dogs. It looks like they are posing for the camera.
Niki, welcome to the bone mets thread. I hope your mother has a quick recovery.
Daughter, I also think that it is possible for your mom to be around for your wedding and children. Hopefully the pain she is currently experiencing will be short-lived.
The snow finally fell here in Boston, but it was quickly replaced by sleet then rain. It was very icy when I returned to the hotel from the hospital tonight. Luckily, most of my walk in indoors, following above-street bridges between hospital buildings.
Thanks for always being here.
Lynne
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Linda so glad your husband is doing better, as a retired icu nurse I understand how stressful those first few days are. Prayers for continued healing. Patty wonderful news, congratulations. Marilyn
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Hello to all,
Patty, woo hoo! You have made my night, so happy to hear your amazing scan results! That is a major decrease and I can only imagine how relieved you must be. Biggest hugs to you.
Dee, welcome back, you weren't gone long but you were missed. I'm happy to see you here and like you I find it hard to stay away for too long. Even if I do I can't stop thinking of everyone here.
Txmom, your dogs are beautiful, I wish I could hug them. I'm a cat owner but I love dogs too, I am the neighborhood dog walker and they all love me. I also take care of some of their dogs if they go away for a day or two.
Terre, one box at a time and before you know it you'll be all settled in. Take your time, it'll get done. I'd come help you if I lived closer, I love organizing.
Nursing a cold right now so been a little lazy today but I'm entitled. I've had weeks of non stop running around so it's time to relax.
Hugs to all, Annie
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I've been away for so long and happy to come back and "see your smiling faces".... so sad about Charlene/Dune, but happy to read that others have been getting good news. When don't pop into BCO for a long time and then I do, it's really like coming home....I miss it! Life has just been crazy - work ( Charles Schwab continues to challenge my chemo damaged brain cells)..... family drama (don't ask)... potential move to Indiana because of my husbands job (ugh...)... and just trying to keep up during the madness of the holidays. On a good note, I have continued to feel find and scans are all good... tumor markers stable... no pain most of the time, so a lot to be thankful for at this point. I've skimmed all of your updates and promise to be a better friend, cancer partner and voice of encouragement in 2016. I tell everyone how much I love BCO and how much I have learned from all of you..... WAY MORE THAN ANY OF MY DOCTORS HAVE TAUGHT ME!!!
xo
Andrea
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Andrea, nice to see you back here and thanks for sharing your good news! You've been very busy lately but we would love to have you join us here again. You're right about learning more here than any doctor can teach us.
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Dee welcome back. I was already missing you so much. As you said it's with us every second of the day, even if I try to live every moment, it's just there!!
Deanna had such a good laugh. Thank you.
Linda you started this dog mania, how adorable!!!!
I was gonna address each one of you re: the gorgeous doggies, BUT it's everyone!! I am so jealous I might just run out and ask my neighbor to take a picture of her 2 dogs and tens of cats from the neighborhood that she feeds!!! They then come to sit in my porch, and then make me feel all guilty. Love you guys,it's so realxing looking at these pictures, honestly, they are a beauty!!
Annie, you NEED a break!! Hope you feel better soon!
Terre getting all these animals in the same room! And they seem so happy.
Patty this is just GREAT!!! Nice way to start the new year! Something to look forward to.
Auroaya would you use one of these small walkers at home(there are small triangle walkers)...so glad for you that you are done with THAT!
Lynne your book is the story of life, girl. Boy, they really messed up, we were away in a dif country ages ago, when my hubby was given Heparin bcs they were scared about his heart, and they said he'd have to stay there for wks bcs of that. But when I called our doc back home, he told us to run out of there real quick. Positive thoughts that it should be a short dialysis thingy. XOXO
Mary sweetie, it's such a good feeling if we know something and be able to make someone's life a bit easier, it's a blessing.
Stefanie congrats for you! Great
Noni, you know when my daughter was dx w mets, she had gone to Onco and top surgeon and told them she was having pain on her shoulder (also clavicula), they said it's nothing! She was so young, one would think these ppl are in tune with these things, I told her to go to an Ortho, he ordered an X-ray, then had a heart attack (bcs she did not tell him she was being treated for BC), and he sees all these stuff, and the rest is History, the same day she got a PET, and life changed again!. But really???!! These docs should know better.
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The markers WENT UP!!! plenty, like 30 points, all 3 markers went up. Onco himself is not sure if it's the tx or what...unfortunately, besides all the things she's got used to, Dani has some pain that was not there before, she is been nursing it, scans are scheduled for next wk. Very disappointing.
Deanna you mentioned something about tumor flare, you think it's possible that it's not all the mets? Did anybody has such experience, in her case, whenever it was up, things were not going well. It has been very unstable, but the last one was a bit better, and we thought we could keep the momentum. I know we will know something prob by tuesd nt or wed, but I am trying to think if there is something I should be asking the Onco. They just emailed me the results, no calls, I think they are scared to face me. AGH!, so either I call and ask "something", or just wait for next week? Yep, this girl does not get a break! I did not tell them, not the hubby and not her, they did not ask but I could tell from her mood she knows. She is feeling down enough for me to know something is up.
Take care everyone!
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Momallthetime--as my grandmother used to say, damn damn and double damn (that was huge cursing for her..and for me too in this context). Unfair stinking disease. Praying for tumour flare. I'd say if you have questions, call and ask. Dani does indeed need a break and some good news.
Andrea - welcome back! And glad you're back with good news.
Lynne -hope your DH is continuing to improve.
And to everyone here (posting and lurking)...sending hugs.
Terre
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(((MomATT))) -- I think we all share your frustration!!!! Can you remind us what med(s) Dani is on? If Ibrance, TMs frequently do tend to go up, sometimes for several months, before they go down.
I just read an article a day or two ago that might be pertinent to Dani's situation -- about the need for serial biopsies, as well as genetic/dna testing, when someone is exhibiting drug resistance. It was an article by a top, Harvard and Stanford trained naturopathic oncologist I follow, and he named a specific test he recommends. I don't know if it would add anything to what is already known about Dani's bc, but here's what he (Brian Lawenda) said.
"Each person's cancer is not just a single entity, it is comprised of innumerable genetically distinct cancer variants. To make matters more complex, spontaneous mutations develop all the time, in almost every cancer, and cancer treatments, themselves, (chemotherapy, biological therapies and radiation therapy) can induce additional genetic changes. If a cancer becomes resistant to a treatment, a rebiopsy (particularly, of a metastatic site) might be a good idea, as therapies that may have lost effectiveness earlier in the course of the disease may become effective again or different therapies may now be indicated. As I've mentioned often on the IOE, this is an appropriate setting for the use of functional anticancer drug assays (i.e. EVA-PCD.)"
And here's the article he was commenting on: http://www.medpagetoday.com/HematologyOncology/Lun...
Also, is Dani possibly on any opiates? Here's another BCO thread with some articles that suggest opiates (which include things like codeine!) might be counterproductive to fighting mbc. https://community.breastcancer.org/forum/73/topics...
From what you'd told us, I liked Dani's new onc's approach, so fingers crossed he's on the right track and there will be some positive news after Dani's scans. Deanna
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Patty! YAYAYAYAY! That is just huge news.
About tumor flare -- YES, it's a real thing. My take is that cancer hates to die and it does not leave quietly! When I started Xeloda over two years ago, I was a hot mess with TM's graphing up like never before. Well, I thought that first cycle of X would do me in. I was doubled over gasping for breath at times from horrific gut cramps and bone pain. Thought for sure it wasn't working, but lo and behold, my markers took a big nosedive a couple of weeks later. Never again have I had those show-stopping pains like I had with that first cycle... so yes, I think all that pain was from tumor flare. My TM's kept dropping over the next couple of months until they got down in the normal range. The cycles still bother me with the usual SE's (deep fatigue, skin troubles, insomnia, some achiness, and so on), but only occasionally do I feel any actual pain. After that tumor flare experience, though, I try to think positively about the random pain flares and what they might mean.
Since it seems to be dog days here, I guess I need to dig around for a pic of my sweet Westie!
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Totally off topic, but this is really funny. This is a story from Otaki, a little town (about 3500 people) where we used to live (we bought a house in the big (22,000 people) city up the road from Otaki). It's been picked up world wide, so Watson the naughty sheep is now world famous. I know his owner.
https://www.facebook.com/NYDailyNews/posts/1015317...
If you don't have Facebook, this link may be better
http://www.stuff.co.nz/oddstuff/75485191/security-...
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Thanks everyone for the warm welcome back after my "long" break from BCO. I couldn't stand not knowing how everyone was & realized that I can't take a break from Cancer it is just the new normal.
Mom, I don't have any experience with Ibrance, but I think others have posted that markers have risen before settling down again.
Dana, the pics of your dogs are just wonderful! Cali has the most wonderful eyes, they just draw me in. I love dogs & cats but don't want to be tied down with one while I'm able to travel. Once we have that out of our system, then we may get another pet. But I love seeing all the pics of them. Please everyone keep posting them.
I have my infusion on New Years eve, sucks to be feeling flu-ish then, but last one of the year, so YAY! It was beautiful & sunny on Christmas Day, so DH & I took a trip around the island, with the heater blasting! Drove home after dinner at friends with the top down under the light of the full moon, it was magical (chilly but magical) Take care everyone!! Cheers, Dee
This is about a 5 minute drive from our house. We still can't believe this is so close to us. It's been 9 years since we moved here & we're still delighted every time. That is Entrance Island in the background. The picture below is looking towards Nanaimo.
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Wow...thanks for the photos, Dee! Just stunning! I do remember the days of the top down and heater on. Glad you're carrying on the tradition of my youth!
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Dee, makes me want to get my convertible out and take a spin, but with the 9 inches of snow we got it probably wouldn't be wise. Love your photos, and I'm waving back to your dh!!
Ellen, SUV stands for Standard Uptake Value and is used for determining activity in PET imaging. It can be used to measure response of cancers to treatment. Having said that, sometime inflammatory or infectious processes will also have high SUV. It's another measure for your doctor to 'see' what's going on.
Good Wednesday to everyone. Lovin the dog photos. Dog therapy for me!
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Good morning to all,
Momallthetime, I think Deanna has given you some very good advice. I'm still praying that the rise in tm's is the treatment working. Biggest hugs to you and Dani.
Terre, that video cracked me up, omg not so funny for the owner of the car but it reminds me of Chloe looking in the mirror and thinking there's another cat and arching her back up ready to fight. The alpacas in the background watching were hilarious, thanks for the laughs!
Dee, wow what a breathtaking view! I need to get out that way, can't believe I live in Canada and have never been.
Wishing everyone a pain free day, hugs to all of you, Annie
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hugs
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Beautiful photos, Dee! And thanks for the reminder to put the top down more often -- whether literally, or figuratively. I too often probably choose the more familiar way of doing things, and need encouragement to make bolder choices. Your photos will be a reminder to me this new year to take the more adventurous route and put the top down, even if it's freezing!
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It's too cold for top down. Besides no one wants to see me shirtless. Lol jk.
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here is my fur babies
She is the oldest. She has breast cancer
Maggie's is ds1's baby. She follows him everywhere. So cold we had to out her onsie on her.
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Ds2. 10 years old
Ds1. 13 years old 0 -
For some reason, I can't post a pic. I'm clicking on the pic widget above the reply box, but from there it won't let me click through to add a photo... I just keep getting the spinning rainbow parasol of death. LOL. I guess you'll have to just imagine my adorable Westie. Unless someone can tell me what I might be doing wrong!
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