Bone Mets Thread
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I am sorry if I am asking a question previously answered on this forum, but I have looked and couldn’t find anything. My initial tumor was 99% ER +, PR-, and HER2- (HER2 1+). This bone met is so far 78% ER+, PR-; but HER2 2+ equivocal. That FISH test was supposed to be back last week so we could look at treatments but they called Friday to cancel Monday appt cause it’s not in. Do bone Mets often come back different from the original cancer? I’m getting more nervous than I already was. The clinical trial MO had brought up assumes HER2-. (I do start radiation this week at least)
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Believe60, I’ve had a 1+ on one test and then had some genetic testing of some sort that showed 2+, equivocal. I believe it’s still considered negative, Her2 low. I haven’t had any treatment change because I’m still considered negative.
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rk2020thanks. So far since being dx with Mets to the bone in June 2020, I have been on Letrozole only. My markers are slowly climbing although my labs have been great. I am just wondering what your experience was/is with Faslodex Ibrance. Tolerability? Side effects? Length of effectiveness? I am looking at starting both soon. Thanks for any info you can give me.
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Not everything is cancer.
sadiesservant:
I was searching for posts regarding radiation to bone mets, (as my MO seems to be strongly against it and I'm considering searching for a new MO because of that), and found your post with the above statement at the end. I was diagnosed with Stage IV, bone only mets in May 2022, but also have fairly widespread arthritis. One of the things MBC has stolen is my ability to trust my body's signals. Every ache or pain puts me on high alert, which is stressful and tiring. I will now repeat your mantra as needed.
Thanks,
Eleanora
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sondraf:
Thanks so much for the link to NCI cancer centers. I am considering getting a second opinion on my most recent scans, as well as looking for a new MO as the current one has a bad attitude toward radiation for bone mets.
Eleanora
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Eleanora - definitely find an MO that you jive with better who is more up to date with recent advances. Radiotherapy is a key tool in the MBC toolbox, I wouldn't be upright today without it!
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Eleanora, radiation definitely helped my bone mets pain. I didn't have a lot. I had it to my spine and then to my hip/femur. I can't even remember how many sessions I had, but it may have been something like 5-10 sessions on the spine and then 3-5 on my femur.
By the way, if they use the word "palliative radiation" don't freak out like I did. It just means it is not "curative" but not that you're ready for hospice.
I concur with finding an MO who might be more up to date.
Believe60 my first cancer was ER+, PR+, HER2-. My mets were/are ER+, PR-, and HER2- (FISH).
Carol
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Eleanora, I am very much in the same situation with arthritis. Honestly when I decided to go to an orthopedic for help with a long standing shoulder problem, the x ray showed severe arthritis. Told me only cure was a shoulder replacement. But MRI to look at rotator cuff showed possible bone lesions. Had the full bone scan with iodine and that radiologist thought all spots were arthritis and injury. But MO wanted shoulder spot biopsied and sure enough it was a met. I do have shoulder pain but zero pain at other two spots (spine and hip). So are they Mets or other. She said doesn’t matter cause will get treatment. But shoulder getting 5 sessions of radiation to get rid of pain. Radiologist said I shouldn’t have to put up with “quality of life” issues with limited use of that arm.
Sunshine and sondrof, thank you for the info about radiation relieving bone pain. I can’t wait to get started cause it really hurts some days.
Take care everyone.
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gigil - my first line of treatment for MBC was Fulvestrant/Ibrance. I started Fulvestrant immediately- on the day I received my diagnosis - and waited until after a rod was placed in my femur to start Ibrance. Fulvestrant gave me some achy joints for a couple of months. Nothing terrible. My oily hair and skin dried up. My body had a tough time with Ibrance so I only last 14 days on the highest dose (125 mg). Then tried 100 mg and finally settled on 75 mg which is the lowest dose. Once I was stabilized on 75, I did ok but as the cycles wore on, fatigue set in. I had my first progression after 11 months. Treated the single spot with radiation and continued on I/F for a total of 17 months.
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eleanora, I’m glad my comment was helpful (to be honest, not sure what the context was as I have been a frequent poster). I understand not trusting your ability to interpret the signals from your body. This darn disease plays with our minds! I find my three week rule is helpful - I don’t stress unless I’ve had a symptom for three weeks - but it’s not foolproof. It’s weird but there have been times that I have felt relief when my suspicions about cancer progression have been confirmed. It’s nice to know I am not completely crazy! 🤪
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Hi ladies, my pet scan shows fibula bone fracture which was not there 1 month ago. It could be due to pathological fracture or open bone biopsy. I think its due to open bone biopsy. Anyone had a long bone fracture, iwhat treatment did you have?
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Yikes, anx789! Are you in a lot of pain? Are they going to put a rod into the bone?
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sunshine - I’m not in a lot of pain, luckily fibula doesn’t bear a lot of weight so I can walk but limping and I cannot go down the stairs. I will find out today on how he’s going to fix this. I lost my confidence in him, I will find a new ortho onco.
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I have a fracture that's been there since I was diagnosed as metastatic last year. It shows signs of healing but the fracture is still there, so the healing is slow. The doctor thinks it may be slow bc of the radiation.
I don't feel any specific pain there, just the general arthritic tightness and discomfort associated with radiation,early menopause, and the change of the bone due to cancer.
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thank you star, where is your fracture?ortho did not recommend any treatment for my fracture, it looks so bad on X-ray, he said it should heal by itself. Fracture is on the biopsy site.
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Mine is on the acetabellum..it's so small it doesn't show up on xray, just CT. Ortho doesn't seem concerned.
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Doing chemo again…MO recommended Abraxane and Zometa. Anybody got this combo?
MO said pet scan will be done every three months then six months. Isn’t that too much radiation exposure? Can I choose mri instead of petscan
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Three months is normal. The chances of any negative effect is way lower than the chance of our cancer spreading. Whether you can choose the scan depends on what scan your cancer is best visible on. Ask your oncologist!0
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anx789 - Im moving to four monthly whole body MRIs based on this study:
https://cancerimagingjournal.biomedcentral.com/art...
However, Im bone-only and had a messy lower back prior to cancer, so between the radiotherapy to the spine and the blown disk, itll be easier to keep tabs on what is and what isnt progression, not to mention my tumor markers apparently aren't that reliable. Ive also had three years of quarterly CT scans and late last year it may have missed a growing vertebrae lesion. Frankly Im thankful for not having to do a cannula anymore!
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That's a really interesting article. It does seem each MO has their own preference to do routine monitoring and which modality works best for each person. I'm 3 years in with MBC. In that time I've had 2 PET scans. My initial diagnosis and one a year and a half later after treatment. That MO retired and my new MO does quarterly CT scans since my last PET showed no active progression. Not sure if he'll do another PET at some point but the data on whole body MRI is interesting. I would imagine insurance plays a factor in a lot of this too.
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sondraf- Very interesting article. Thanks for sharing. I wish there had been a bigger number of participants in the FDG-PET/CT group.
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Sondraf thank you for posting this article. My last scan was WBMRI which I am now going to have twice yearly plus one ct. This is my choice with my Oncs blessing. I am 6 years in and wanted one less ct per year
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Thanks sondraf. I recently had whole spine MRI due to pain. It was a long test. I wonder how long it takes to do WBMRI?
Given that I’m ILC, I can see the benefit of WBMRI, but I doubt my insurance would pay for it. (Sigh)
Since I’m oligometastatic, I asked my MO if I could do annual testing (CT and bone scan) and he agreed. I’m sure that would change if my pain got worse. It’s a difficult balancing act. On the one hand, I want them to detect progression as soon as possible. On the other hand, I want to avoid having tests that require time away from work and just live my life. I don’t mean that I want to have my head in the sand, but I want to believe that I’m going to be one of the lucky ones to get 10 years or more
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cyathea, I get the part about not wanting to be overrun with medical testing, wanting to live life, and it doesn’t mean we want to bury our heads in the sand about mbc.
I think being open minded that you might live a long time with mbc is a great approach. Anything can happen, so why can’t it be good stuff? After I was diagnosed, the first book I read was Cancer Schmancer by Fran Drescher. I wasn’t a fan or anything and she had early stage uterine cancer, but it didn't matter to me. I just needed to read how someone dealt with having cancer. I opened the cover and inside was this quote: Hope is the thing with feathers - That perches in the soul - And sings the tune without the words - And never stops - at all -
It’s a poem by Emily Dickinson, but I’d never heard it before. At a time during which I was filled with fear, those words gave me something to cling to.
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I was told the WBMRI will take 45 min to an hour which is a bit longer than the whole spine I get occasionally, but I dont mind an MRI, I tend to fall asleep in the tube. I also have never had a PET for whatever reason, and Im not sure they are as in use here as in the US (hence the smaller group in that study) due to cost or limited equipment.
DivineMrsM - Ive adopted that mindset of why shouldn't something good come my way after all the bad, and that's helped a lot with coming to terms with actually living with MBC and keeping the anxiety at bay.
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I had a PET as my initial scan because thats what was ordered by the breast surgeons office, after my breast MRI detected what appeared to be a lung nodule. The PET revealed my bone mets, but no lung tumors.
After I started treatment, I continued with PET scans since 1.) that first one was my baseline and 2.) The provider handbook for my insurance said PET was actually preferred for bone only mets, even though they required a pre-authorization for it each time. Never got denied, even though they would put my doctors office through some red tape, I always got my approval. I want to stick with getting them since they dont just detect lesions but show the metabolic activity or lack thereof. Which really gives insight into progression…once you've had bone mets they will always see lesions, but whether they are active or not is how I know my treatment is working. I think nuclear bone scan works similarly though. If I couldnt have PET, I would hope to get nuclear bone scans
As for concerns about radiation, once I was stable, the MO said I could scan every 6 months which I am comfortable with. And she was not. too concerned about the radiation exposure, anyway.
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I've been having Pet scans since I was confirmed metastatic. I'm in the US. Before that I'd only had bone scans and x-rays and CTs.
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Hi all,
I want to apologize first -- I just can't seem to sustain regular engagement here, so I feel bad showing up with my questions but not answering others' questions or offering support in return. I wish I had the energy to do that.
So, thank you, thank you to all the kind souls out there.I'm wondering if anyone else experiences little jabs of pain in their bone met(s) following a Zometa infusion? My bone met in the left sacrum has been hanging out for about a year. Had radiation about 5 months ago. Latest scans don't show that the bone met shrank at all. Went off Ibrance due to neutropenia, but will start Kisqali shortly (in addition to Letrozole).
As always, I deeply appreciate hearing about other people's experiences. Thanks again.
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lgp1111, you're always welcome here!
I didn't have any pain after my first Zometa infusion - just pretty bad nausea overnight. Felt achy and had a bit of a fever the next day. The second infusion was easier and now I don't have any SEs to speak of.
I also had and continue to have neutropenia related to the Ibrance. I had my dose lowered from 125 to 100 and have been OK on that. Still low neutrophils, but not enough to delay taking the Ibrance.
I see that your original cancer was ER+, PR+, and HER2-. Now you're ER+, PR-, and HER2-. My PR switched, too. I don't know why and I never think to ask. Has anyone commented on that change?
(((hugs)))
Carol
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divinemrsm, I love Emily Dickinson’s poetry. Thanks for reminding me of that one.
lgp1111, I’m glad you stopped by, but don’t feel bad about not posting often. Energy levels are at a premium with MBC, so we understand. I hope your pain isn’t too bad
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