Bone Mets Thread
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BevJen, on the other hand, I had an RO say on a CT report back in Dec. he thought he saw something new in my liver. We initially doubted the CT scan, so had an MRI that was inconclusive, but then came the PET/CT. My MO and I had wishful thinking that I hadn't progressed, but thank goodness the first RO sounded the alarm. Having said that, I am so glad you got good news! Woo Hoo!
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Wonderful news, BevJen!!!!
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happy for your news BevJen
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Hopefull2...so sorry for the skull lesion and your vision issues. Praying for a speedy recovery for you.
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BevJen...wonderful news! So happy for you!
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Just circling back around to report on my actual scan report from my MRI/Skull that I had written about here a bit ago. I had reported that I had gotten the all clear from that scan (which was last week) from the ordering doctor. The reason that I'm revisiting this is because the Skull MRI resulted from an MRI of my complete skeleton that had over a 2 page report that was almost indecipherable, except for the fact that the reading radiologist said that she thought that my C1 area might have mets. That was enough for my RO to order the skull protocol.
So this second report was short and sweet. In contrast to the first report, this one said: "No definite bony lesions are detected to suggest metastatic disease within the C1 vertebra or occipital condyle." It also said: "No other abnormal areas of signal in the brain." Short and sweet.
This reading radiologist, though, did report that I had had bilateral cataract surgery, a fact that I had forgotten to include when they went through the list of MRI questions pre-test. So I know he looked at my scan pretty thoroughly.
Again, I wonder why there can be such discrepancy in reading scans. My skeletal MRI was read by a radiologist who looked to have much less experience than the reader on the skull MRI; but we don't get to pick what radiologist reads our reports, do we? And, as I previously stated, I defy anyone to try and find a radiologist who has read your scans and written the report -- they cannot be contacted or talked to -- at least that's been my consistent experience.
In any event, again, I'm happy that this particular report was so clearly written and so positive.
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bevJen, that’s great news and agree it’s so frustrating that we don’t get to speak to the people who read our scans and produce our reports, and how much they sometimes differ.
But, very glad it has been cleared up.
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Great news, BevJen!
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BevJen great news news but sorry you had to “work” so hard to get it
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BevJen...wonderful news!
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BevJen , great to hear the good news. I hope your journey is filled with such news!
My PET/CT report from last week's scan shows improvement in my bone mets. The SUV numbers are lower than before I started on this treatment plan 6 weeks ago (Piqray). Initially the tumor markers had jumped which led to a PET scan. With all other chemo regimens, the best response I ever had was 'stable' but this is the first treatment wherein the tumor activity is actually lower in the bone mets. I am so glad this targeted treatment is working !
I will continue on Piqray for 6 more weeks and then do another MRI. I am hoping this drug will work equally well on my liver mets too.
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S3K5 - that’s an awesome response from Piqray especially given the short time you’ve been on it! I’m cheering for you that this trend will continue and be equally as effective on your liver mets.
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S3K5...that's great news!
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Well, S---. Was waiting for report on my MRI of liver/abdomen from last Friday -- preliminary report just came through and even though this study is focused on the liver/abdomen, they have consistently reported on the bones falling within the field. So, on the bones front, this is what the report said in part:
interval progression from 5/27/2020 MRI, with interval increased size and number of metastatic lesions. For example a 2.4 cm enhancing T11 vertebral body metastasis and 2.5 cm S1 vertebral lesion are increased from 1.2 cm and 1.3 cm [on May MRI study].
Also says there is a new 1 cm+ lesion in the liver.
Really upset. I'm guessing one more month on Ibrance, then switch to Piqray.
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Prayers Bev Jen new treatments will take care of it. Healing hugs eve
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BevJen- I posted a response to you on the Liver Met Thread, but I read now of the bone AND liver progression. So sorry. I hope Piqray can halt the progression and with minimal side effects. Hugs.
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Thanks, folks. Still waiting for the meeting with my IR, and the final report from the MRI. Also will have to have a CT to compare with my May CT, where all bone mets looked like they were sclerotic/healing. This is an interesting disease, to say the least. Of course, I don't know about others, but I can feel absolutely fine one day (like today) and then when I get disappointing news, I start to feel like I'm going to drop dead tomorrow, and everything starts to ache and bother me. Mind over matter, I guess.
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BevJen, I’m so sorry. I’m thinking of you.
Virtual hugs!
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I'm going to ask this question here first, and if no one has had that happen, I'll post in the genetic testing thread.
I had blood drawn last year and had genetic testing for a number of different genes. All came back negative. I then had a bone biopsy last month, and I've been asking to be tested for the PIK3CA gene. Unfortunately, after three different specimens were sent, they didn't have enough to test. I got a report back that had a bunch of different things on it, but it had that the AR, MLH1, MSH2, MHS6, PMS2, and PTEN were positive. Why would it say negative on one result and positive on another? One of them is wrong. Now I'm totally confused again.
Edited to add I did ask in the genetic forum as well.
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Cross posting from Ibrance thread ...
Hello everyone. Penny's husband here. I know her last post was a couple of months ago, after she was hospitalized with super high liver enzymes for what was believed to be drug induced liver injury. The thinking that the time was that was due to a new supplement she had taken, or perhaps even a long-delayed reaction to Ibrance.
I'm very, very, very sad to say that she passed away or August 20th. After being a picture of health through the end of June (42 cycles of Ibrance and NEAD for three years!) she declined very quickly. Scans of her liver up until the very end actually remained clear. It wasn't until the end of July that a biopsy showed that it was actually a BC metastasis rather than DILI. It was the super rare and invisiible "infiltrative" metastasis (she said someone here had posted a warning about it?) that quickly took over and caused her liver to fail. Attempts at treatment near the end failed as it turned out that her cancer had mutated to a very aggressive triple negative.
I wanted to let you all know because, while not the most frequent poster over the years, she found incredible love and support here. She found the courage and humor seen here to be an inspiration. She often told me about funny stories that were exchanged here. She considered you all to be dear riends.
We are of coruse heartbroken at how quickly her success story turned into a bizarre decline. I do hope you all keep the faith, and hold onto hope, and support each other on this journey with love and kindness.
Warmest regards,
Harry
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I'm so so very sorry Harry on the loss of your beloved Penny. My thoughts and prayers go out to you and your family.
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Oh, Harry...I'm heartbroken. Though we surely never met, I felt as though I knew Penny. I was on the Ibrance string with her for two years. She was warm, funny, kind, empathetic, thoughtful, and supportive.... always. What a terrible loss for your family and for us. I can't tell you how sorry I am to hear this news. Endless thanks to you for your kindness and thoughtfulness in letting us know. And hugs to all of you. I'm just glad that it was quick for her.
xoxoxox
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Wonderful news Joyner! Thrilled for you!
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Lynn, I remember your name! At one point she told me you were her "twin" on the Board. And you are the one who sailed to NYC and were on the Hudson near my office? A, I right?
She made good friends here -- it shows the love that is possible in this world even when people don't meet to person.
I wish you and all her dear friends here love and peace on this journey.
Harry
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Harry, that was me! We brought a boat home to Virginia from Wisconsin, and I had a journal, which was posted on the ibrance string. Penny was always enthusiastic and asking questions and laughing with me! And yes, we were near your office at Liberty Landing Marina. I will miss Penny!
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I tracked down the radiologist once who read my first abnormal mammogram to ask him a question. He contacted my physician who told me basically not to contact the radiologist again, and that he would be handling my case. Radiologists don’t have to have bedside manner, I guess.
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Dear Penny’s Husband, I’m so sorry for your loss, for the loss of Penny. I’m sure the way the disease quickly took over after several years of a good response to treatment has to be like a kick in the gut. It’s good to know that Penny found friendship and a measure of comfort on this forum; despite being diagnosed with mbc, those of us with it are fortunate to have bco.org as a valuable source of support. My thoughts are with you at this time.
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Question: I started Letrozole two months ago. My CA 27-29 was 171 at that time. My recheck this week shows it has decreased to 98. Calcium is normal but now my Alk Phos is elevated for the first time. Has anyone had that happen? I am wondering the significance. Thanks, GiGi
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Gigi,
Great story about the radiologist contact. I swear, I have been able to contact (and actually talk to) all other types of docs, including pathologists. It's amazing to me that the radiologists are so sheltered. I wish someone could explain it to me. Ha ha about the bedside manner comment....
Re: letrozole, etc. -- if your tumor markers are accurate for you, that's a nice drop. ALP can go up or down for lots of reasons. Mine was above normal for a few months last year, and then just dropped back to normal range and has been there. My MO was not worried when it went up because it wasn't that high to her. How much out of range is it? I started the year at 102, then 95, then 105, then back in the 90s and now I'm at 94. So it might just be a blip.
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BevJen, my AlkPhos went from 78 To 178 in 3 months. I read somewhere that can happen when bone is remodeling. I have been taking Letrozole about two months now. Skeletal pain is much better. CA marker is lower and so is calcium, Here’s hoping.
PS. I think radiologists go into that specialty to avoid people. 😊
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