Bone Mets Thread
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@AJ I had severe hand/foot syndrome. It was like my feet had been burned. The peeling was quite extraordinary. Some days I found it hard to walk. The Voltaren worked a bit, I found that heavy creams - like Bag Balm and Udder Cream helped. I might have been an extreme case! That was my only side effect though. Good luck!
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@jen1 so sorry that you need to switch to another line of treatment, I can only imagine how you feel.
For me, I started my first line of treatment for MBC to the bones last year and I’m still on it - not chemo: Faslodex + Zoladex + Kisqali. I also did a lumbar decompression surgery right at the beginning, and I was taking xgeva for a while then the doctor phased it out gradually.
I’m also hormone +ve & HER2 -ve. Did your doctor mention targeted treatment instead of chemo?
As for radiation. When I met with a specialist he said that I will probably see a faster response with hormonal and targeted treatment than with radio. Given that I started right away: hormonal, surgery, targeted. He said radio takes a couple of months before showing effects, and given that my pain level was reduced significantly with the surgery, he said there is no need unless pain rises or medications didn’t work. I’m glad it did and I didn’t have to do an unnecessary additional treatment.
I do PET/CT every 4 months, and for the next one my oncologist added the bone density scan.
I wish everyone a kind year with pockets of rest, love and joy ♥️
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I know that this thread is for bones mets only, Although I will talk about markers ,But I think it's about the same topic.
It’s all about markers and How is it affected by treatment?I found out something was wrong when I had my blood and markers tested in June of last year.When the results of ca 15-3 jumped from the normal range to 45.
Although the oncologist Insisted that there was no reason to concern, I insisted on repeating the test, which came back with the same result.
The PET scan showed a lesion in one of the vertebrae, and a big one in the tibia,
After following the treatment for six months now, there was no significant change or big decrease in the markers.
The results were as follows:
Although the last PET scan showed decreased in uptake for the areas that still had bone lesion.
Now the oncologist says he's worried because the drop in the marker isn't what he expected, and he's decided to do a genetic mutation test to make sure.
As for me, I was depressed to hear this from the doctor, but I always hear that the markers are not always accurate or reliable,
I do not know what to do.
I hope to hear from someone who has had the same experience.
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Hi @norah2024, sorry to hear you have bone mets but I really hope treatment you are on will work and keep things at bay!
I am on the same medication combination as you since last February but unfortunately my oncologist is not sending me for regular tumor markers blood work, we only did 4 tests in the last year as he claims they might not be very accurate but I will ask if I can do it monthly as I believe in my case it showed as good indicator on what is happening.
my TM in Feb 2024 were 79, in June 2024 44 and on Nov 2024 178. I just had my scans and bone scan shows some progression. I am meeting my oncologist this Wednesday to see what he suggesting. We did reduce my ribociclib dose to 400 mg in October as my neutrophils were low so I am wondering if that is causing the progression.
I am not sure if hat might be a protocol in case like mine, if someone could chime in, that would be truly appreciated! I am also thinking to ask for some radiation, I’ve never done any as here in Canada they only do radiation for pain management, but I’ve heard it could help with bone liaisons and reduce the spread.
Also any chance you have the name of the genetic mutation test you will be doing and what exactly that might show?
Hoping and praying for the best news and outcome for all of us 🙏1 -
Hi @vik2ri,
thank you for your response. I hope your treatment is going well.
If the markers are providing accurate results for you, I highly encourage you to continue getting them done every month.
These are all the new tests that the doctor has ordered. They also took blood samples from me for another test, but I forgot to ask about it. The samples were collected using a kit box with two tubes. Usually, I take a photo of any sample or paperwork, but for some reason, I neglected to do so this time.
Regarding radiotherapy, I had five sessions for my tibia in September, and my leg has improved significantly since then. Before the treatment, I was unable to walk without a crutch.
I will be undergoing five additional sessions this month for my back, and I am hopeful thatthey will be as effective as they were for my tibia.
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Thank you radiation-cinderella, mallemis and AJ for your response. I hope I did not leave anyone out.
I am slightly reactive according to doctor to one gene mutation .But my oncologist said it was so low. I was just upset because she initially said we had lots of possibilities if Verzenio failed. And now she brought up chemo, But as of last Novembers pet scans everything shrinking except one spot on hip. Now I'm back to the 150 mg of Verzenio. I think with that gene mutation piqray is the medication. I will bring up to her some of the meds you all mentioned. I am still her 2 negative estrogen positive.
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Hello,
Has anyone experienced leg pain from Xgeva injection?
I’ve been feeling tightness and pain in left leg and my doctor is convinced it’s Xgeva causing it. So I am wondering if anyone has experience this?
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vlk2rl-I haven't.
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Can I ask what people are doing for pain management.
I have been stable 4 years. I do have pain from a hip met it is not all the time but it's painful when it flairs up.I haven't had radiation because the protocol is if you are stable for several years they do not give radiation. I was using a mild codeine medication the issue was that I was waking in the early morning with the pain getting up taking the medication and going back to bed so the pain was interfering with my sleep somewhat.
The oncologist prescribed a butrance patch which is a stronger opioid medication it made me a bit foggy and had a sort of flat feeling, it did deal with the met pain and the pain from arthritis in my knee but I didn't like the foggy feeling.
I decided to come off it and go back to the codeine and take the codeine before bedtime and so far I haven't woken up with pain the codeine is not as good at fully controlling arthritis in the knee which is interfering with going to the gym and walking although this week seems to be better.
I also developed an ulcer on my leg when I stopped the butrance the ulcer cleared up, some opioid medication can interfere with healing
I did discuss this with my local doctor who was happy to support me in this and said I could always go back on the burance patch anytime I wanted I haven't said anything to the oncology team.
I was wondering what others are doing for pain management.
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Hi, and sorry to read about your situation. Are we to assume that over the counter things are of no help at this point for you? I've been doing this for about 2 years now and so far any pain that I have from anything can be managed with prn Tylenol. I just hate to take anything and am glad that so far just resting, PT, waiting it out and/or an occasional Tylenol will help, but I have a feeling that down the road that won't be the case. Others here do other things I know, so most likely some of them will come along with their solutions. Best of luck to you!
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Hi @sunnidays, I have been remarkably lucky with pain so far (touch wood), paracetamol and a lot of opiates do not work for me, something to do with a likely gene mutation/pain receptors. The one over the counter pain reliever that works for me is aspirin - and I am not supposed to use it with kisqali. At the moment if I get aches from the gym I use heat and icing.
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I'm sure I will work it out I do think there should be a much more nuanced approach to pain management.
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@sunnidays I have been prescribed tramadol for the days that I can't deal with the pain. I don't have any side effects from it if I use it for a few days in a row either, but I may just be used to it at this point. I am not sure if this is stronger than codiene, but it definitely helps me when the OTC doesn't. Sometimes I have to take both an OTC and tramadol too and that works great. I am not addicted to it as I usually don't take it regularly, but only when the OTC isn't working and I never take more than one a day. I think when you have MBC, pain should be managed with whatever works. Keep asking for help.
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Hi everyone,my doctor as switched me from Zometa to Prolia. Is anyone on that. Please let me know
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Tamoxifen vs letrozole??
Does anyone have any advice on difference between tamoxifen vs letrozole? I saw some articles stating that letrozole might be better?0 -
@vik2ri
When I was first diagnosed with breast cancer, my doctor told me that letrozole was the best option for postmenopausal women. However, speaking from my own experience, I took this medication for three and a half years, only for the cancer to return in my bones. I can’t speak to tamoxifen, as this is just my personal situation0 -
I am sorry that you metastasized.
In terms of any of these drugs, none are 100% effective. They are not a cure. Anyone on tamoxifen or letrozole can experience progression. Take care2 -
@norah2024 , thank you for your response Norah! That’s what I have been finding on internet as well (letrozole is better and more effective than tamoxifen) but wanted to see if any of you lovely ladies have come across other experiences/ recommendations.
I have bone Mets since Feb 2024 and liver met since Oct 2024, I was on Ribociclib, Falsodex and Xgeva but now my doctor is suggesting Xeloda, but I asked if there are some other options and he just put me on Tamoxifen (only) and Xgeva for bones. He said this might work for short period of time. We are also waiting for foundation one results and hopefully that sheds some light.
I know some people have tried Verzenio after Ribociclib didn’t work so I am not sure if that’s something to consider??
My oncologist is very unapproachable and doesn’t like questioning, but this is my life and I want to explore every option possible!1 -
Hi @vik2ri , I hope you can find an oncologist who gives you space to ask all the questions you have and discuss with you your plan.
I was on tamoxafin when I had stage 2 BC in 2020 but I wasn't able to deal with the side effects, specifically ones relation to mental and sexual health. I stopped it after almost 2 years (I was prescribed 5 years). After 1.5 years of being off tamoxafin I got bone mets and I'm on Ribociclib + zoladex + faslodex + occasional xgeva. I'm still on this combo, which worked after 3 months, and I seem to tolerate it more than tamoxafin.
I haven't tried letrozole.
Best of luck.
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@exbrnxgrl
absolutely right—there’s no medicine that offers a 100% guarantee, and what works for one person may not be suitable for another. I’d also like to mention that, in my case, my tumor was larger than 5 cm, and I had unclear margins after my mastectomy. My chance of cancer recurrence was 33%, which could be one of the reasons why the cancer came back, and not letrazole itself.0 -
I’m so sorry you’re going through all of this. For me, having an oncologist like that would be incredibly disturbing.
Here’s some additional information that may be helpful:
After 3.5 years, I was diagnosed with bone metastases that was in July 2024.
In August, my oncologist started me on a combination of Kisqali, Faslodex, and Xgeva.
However, the progress has been slow, and my most recent PET-CT still showed progression, although with less SUV uptake compared to the last scan
You may also refer to my reply to @exbrnxgrl , as it might be also helpful,
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Thanks @norah2024 ! Appreciate all your comments and feedback!
I have been doing lots of researching and tapping into anything I can to see what options are out there.
The only option he gave me is chemo (Xeloda) and I would like to see if there is anything else I can try prior to starting chemo. I am wondering if I should try Verzenio since Kisqali is not working anymore and he took me off of it. He is not very open for any suggestions/discussions but I simply need to ask.
I am also waiting for FoundationOne test results and hope it will shed some light 🙏1 -
@jen1 Hi, I’m on Xgeva also. it’s a Monoclonal antibody and i think it’s worked well for my bone mets that showed up in 2021. Ugh that was tough after suddenly unexpectedly becoming Stage IV after going for 13 years thinking my state IIIA was gone. Insidious little cells must have hidden out somewhere in my bones since 2009 and Suddenly made themselves known in a tumor marker CA27.29 blood test. Little buggers e-commerce traveling tumor cells that show up on that test…..
Good morning everyone Happy Spring!🌷🌱🥰🌿🌸
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@vik2ri Can you switch oncologists? I did after a misdiagnosis. I am now at a top cancer center with an oncologist who heads a research team. I figure when I do inevitably get progression, she will know all the options. But I know many people have difficulty accessing such institutions because of distance, etc.
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Hi @tougholdcrow, I wish I could switch oncologist, but unfortunately here in Calgary (Canada) medical system has gone downhill and people wait up to 6 months to get assigned to an oncologist. I am afraid if I request this, I will be without any doctor for a while and right now I am in between the treatments, don’t know if I should start Xeloda or hopefully Foundation One gives us some info and suggested treatment.
I am kind of stuck, but I really wish I could get the new doctor. On top of all the stress we are dealing with, this stress with Dr. is so unnecessary and shouldn’t be happening1 -
Yeah, that is really too bad. Well, I'd keep advocating for yourself. It's your body. I'm glad you're getting some testing so that you have some ammunition (so to speak).
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I have had bone mets and being treated since 2021 when diagnosed and confirmed. I’ve been dealing with the usual aches and pains from arthritis and the usual bone pain side effects from treatment. My mets are in. My thoraacic spine, ribs, lumbar, sacral, Ilya, tail bone, sternum. I’ve been stable since 2021 diagnosis even though my original primary tumor was stage IIIA since 2009. I did 6 month follow-ups and labs with my Oncologist at the John Cancer center and now since bone mets, I see him once a month for treatment & labs and regular scans confirming stable no progression to organs,…….. so now, I have a question for everyone her with bone mets. Does a sudden New very painful sharp pain in my hip and low spine a signal for more bone met. Progression ?
I can’t even walk up the stairs without severe sharp pain in my right side deep into my upper thigh bone joint. Eve walking has suddenly become very painful. I went to bed early last night after massaging Diclofenac Sodium Topical Gel, and a heating pad. That always takes care of it, but today, it’s still bad. Should I be worrying that the rare new bone mets, has anyone deal with this before?
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Shana - There is a possibility that it could be a badly pulled muscle or something like osteoarthritis. It would require a check with the dr and probably a scan to confirm, though. I've even had sore muscles and arthritis show up on scans and the spots light up like progression does. Progression would be only one of a few things it could be. Fingers crossed and sending good wishes that you will be feeling better soon, and that it's a relatively minor thing.
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I was thinking with @threetree that it might be a strain of the piriformis, a tangle muscle nerve situation deep in the hip. I was actually having some sharp nerve pain in that area myself last night after having some deep tissue massage, and if I sit too long, like on a long car ride, I can be hobbling around for a while. But you will want to follow up with the doc, of course.
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