Bone Mets Thread
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Oh, Amy, I'm so sorry about your daughter's miscarriage. These things are so difficult to understand. (((Hugs)))
PET/CTs are not the same as regular PET scans -- if that helps. I'm don't know much about PET/CTs -- just that they're considerably more sophisticated than a straight PET. My local onc has actually suggested PET/CT lieu of a CT + Bone Scan, but I stick with UCLA for imaging.
Long, long day -- mostly driving (riding). Thank you all for the good wishes. They were much appreciated. Will post more tomorrow, but wanted to express my concern for your daughter, you, and your family, Amy. You are in my prayers. Deanna
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I'll quickly cross-post what I just wrote on the Ibrance thread, with an apology to those seeing it twice...
So I had my 6 mos. scans yesterday, and wonder-of-wonders, I actually got an email from my UCLA onc last night, telling me all is good. This was quite a surprise, since I also found out yesterday when I went on-line while waiting for my CT, that my TMs had jumped more than 90 pts. last month! So I was truly expecting bad news. But my Bone Scan report actually said, "No scintigraphic evidence of osseous metastasis," and "No foci of abnormal uptake in the bone," -- an absolute miracle when I started out with and still technically have "diffuse and extensive" bone mets. Still waiting on complete CT scan results -- for some reason she'd only gotten the abdominal part, which was good, but holding my breath re. the chest one. And I should add that my bone scan six months ago had noted an area of increased uptake around my right collarbone, but this time the still-seen activity was noted as "degenerative changes."
I'm honestly in shock. Did not expect that this time!
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WOW Deanna, excellent news! YAY! It's the kind of shock we'll take any day!
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Wow Deanna great news! You're right miracle of miracles...perhaps the TM increase is a fluke.
Such a relief. Let's keep it that way.
Hugs
Amy
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Good news, Deanna! Definitely a time to be glad that your tm's were not accurate
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WOOHOO, Deanna. I am doing the happy dance for you. What a wonderful shock to experience! I hope your treatment continues to do its job for years and years. On more time, WOOHOO!
Lynne
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Deanna, Great bone scan results!! So encouraging to read!! Thanks for sharing this wonderful news with all of us!
Hugs, Carol
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Yahoo Deanna that's great news you are doing something right. You are doing so much beside the drugs you are taking so big pat on the back to you☺️. You made my day.
Wendy
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This is such terrific news Deanna! Very happy for you and holding you in my thoughts while you wait for the rest of your results
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Yay!! Deanna!! Wonderful.
My onc also said we would ignore rising TMs for now and scan on August 30. So, hoping for results like your!!!
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Thank you, everyone! Kaption, I hope your upcoming scans will also reveal great news!
Wendy, it's funny that you mentioned doing other things, which, as some of you know, I am very motivated about, especially getting stress out of my life. In fact, when my husband and I were sitting at UCLA yesterday, waiting for my CT, and I pulled up my CA27-29 results, my first thought was, "How can this be, with everything I do? Maybe those who says it doesn't matter are right." It was honestly one of the hardest things for me to wrap my head around -- not just that my mbc could be out of control again, but that everything I try so hard to do apparently hadn't made any difference. Then, what's even funnier is when my hubby told me late last night that there was an email for me from UCLA about my test results, I had just finished eating two bowls of coffee chocolate chip ice cream -- organic, of course, LOL -- but totally unlike me! But I was already rebelling -- starting to think that maybe eating right didn't make any difference, so why worry about it? I'm sharing this because it's interesting to me how our thought processes and even our core beliefs can be jerked around by what we're dealing with!
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Such good news Deanna!! Happy for you.
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Well put, Deanna. Those moments when we think all the things we try to do "right" don't matter are hard.
But, so very glad for the great news
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Kap- My TM's have never ever gone down only up in the 10 months since I have started treatment. I had stable scans in May- The truth is my last visit to my MO she didn't want to share them with me. She asked me first how I felt. I proudly said great. I was happy that I no longer relied on Advil as I have no pain. Then I asked her what my TM's were and she really didn't want to share them. I insisted and then that "I feel great" went to "I don't feel great" and everything I read says when treatment is working TM's go down. I think I know more than my Harvard Teaching MO ? Thank God my dear DH goes with me so I will share what DH wrote down and he texted to my daughters so they could reject my negative mood on TM's - hereis his text to my family
"Tumor markers are not indicative for many people and are not the best indicator or even a good indicator says the Doc , which is her area of research...
- Hugs, Carol
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So happy for your Deanna! Yay! cheers, dee
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Carol,
If it's any further comfort, many mo's (mine included) don't even do tumor markers.
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Thanks, Carol. Over my 2 1/2 years with mbc, my TMs trends (trends are what count) have fit what is happening. But, I know that it's always scans and pain that are most important.
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Yay Deanna! Very happy for your great scan
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Yay Deanna!!! I'm sooo happy for you!!
I can't wait for me to be there too!!!
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amy. So sorry. Prayers for you and your dd and family. How very hard
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deanna. Great news. !!!! Happy dance for you
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Yay Deanna!! Great report! As you know, TM can be effected by infection or inflammation anywhere in your body so not always the most reliable thing to go on. Hope the complete report is as good.
Love n hugs. Chrissy
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There are certainly treatments where tumor markers rise when the treatment works and tumors are shrinking. It took oncologists a long time to become comfortable with the flare reaction on letrozol, but now it is well understood. Ibrance is not well understood yet, but I have personally heard of a lot of rising tumor markers from people who are responding to Ibrance. Mine continue to rise as my tumors continue to shrink.
Yay for Deanna. I am doing intensive complementary treatment in addition to Ibrance/Letrozol. I wish I knew what was contributing to my response and what was not. I will never know.
>Z<
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Deanna such great news about your scan!!! Happy dance time!
Babd
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Even though TM's have never been an accurate portrayal of what's happening with me, my onc still checks. I think focus on all the good that came from your scan and to hell with TM's. And watching what you eat most likely is helpful, treat yourself too. You deserve it. How can an occasional bowl of indulgence send your MBC into orbit? It just can't, so "enjoy every sandwich"as one of our dear sisters has said.
Amy
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ok ladies I have a question. I've gone back and read through a lot of the posts , And am kind of freaking out a little bit ! I have a bone biopsy scheduled or not a bone biopsy but a CT guided needle biopsy on one of the mets in my spine about a week from now, and it's just kind of got me scared . Is it or is it not going to be painful and howdangerous is this I don't know anything about the radiologist and he's not even at my cancer center he's at a hospital.
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Gracie...I had that procedure done... I was awake....just a local along with a small sedative. It took longer to prep for the procedure than the actual procedure itself. About 25 minutes. It didn't really hurt...but more of an uncomfortable pressure. The area was a little sore for a few days too.
Hope that helps
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It does, Silviah, I hope mine is that easy.
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Gracie- I had it done as well. I didn't have any pain after but it depends on where they are doing it. My biopsy was done by fine needle with CT scan, they had me really sedated and the biopsy was taken from the back of my pelvic area (iliac) - and I had no pain there to begin with.
Hugs, Carol
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Mine is going to be one of the spine mets, somewhere in the T or L area, and I dont' have any idea which. Which is why I'm kind of worried about it. I mean, that's pretty close to my spinal cord! It is most likely a pretty easy thing and I'm probably worried about nothing.
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