Bone Mets Thread
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Gigi.... can you explain what you mean about the remodeling? do you mean that if a treatment is working your ALK PHOS can elevate as the bone heals?
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NicoleRod, from what I have read when the lytic lesions heal over, they form sclerotic lesions. It is considered healing but that bone thickening causes the bone to become more brittle. That is what I understand to be remodeling.
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Gigi,
Last September/October (2019) my ALK Phos was in the 150s and then down to the 140s, and then it continued to drop to normal range. Don't know if this proves anything, but I had a microwave ablation of a liver lesion in early July 2019, and then I started Ibrance in early August. So maybe it can "flare" when you start up treatment? But I really don't know.
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Hey Bev...from your lips to Gods ears...(ref: flare when start up treatment).... maybe that was my story
Gigi thanks for that explanation
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Nicolerod
I am curious to hear about your experience with cryoblation. I apologize if this is not the right forum or you previously discussed. I see on these boards other treatments besides chemo and hormone therapy. But whenever I inquire about them my oncologist says no. Any input is appreciated.
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Basically if you want anything done on your liver cryoblation, microwave ablation, Y90. TACE etc...just go consult with and IR...most MO's think you need a systemic treatment to work first and foremost and won't encourage IR.
Cryo was great and easy had it in Oct and they are still dead...cryo is great but the tumors must be in certain area's (not near the colon wall ) and they must be under 3cm. I had some pain after, I have a high tolerance for pain...so I didn't take any pain meds....its was relatively easy.
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Nicolerod
Good Information.
Thanks
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Hi All,
Reaching out those of you who have mets on the skull base to see if you have any symptoms and hoping that there is another explanation for what I am experiencing. In July I started having an increase in pain in my right hip, lumbar spine and neck - all areas of known mets. I also started experiencing constant low grade headaches which I chalked up to degenerative issues in my neck (as previously discussed on this thread, I had a car accident in my early 20s that caused some issues). Over the last few months the back/neck pain has continued and the headaches seemed to be getting worse. A few weeks ago I noticed that the back of my head on the right side was tender and aching all the time to the point that, at times, just the pressure of my head on my pillow made it hard to get to sleep. I also noticed that the right side of my tongue feels a bit odd - not exactly numb but I know it's there.
I just had a bone scan which came back stable but it's hard for me to hold much stock in that as bone scans have always significantly underestimated the burden of my disease and have never shown the skull base mets which have been confirmed by CT (and also showed on an MRI of my brachial plexus). My MO has ordered a brain MRI which we hope to get as soon as possible but in the meantime, the headaches have become much more intense and are really impacting my QOL.
There are reports of similar symptoms (occipital bone pain, neck pain and tongue issues) with mets on the occipital condyle which I have but on the left side, not the right. ??? If that is what's brewing treatment will be radiation so my MO has my RO queued up. (Of course, really hoping this is bone and not .... )
Nothing I can do but wait and see but would love to think there is another explanation for this rapid increase in symptoms. Anyone? These headaches are killing me!
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Sadie, no experience to offer, but I am sending you my very best for good results and relief, quickly.
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SS,
My recent MRI of my skeleton showed something on the occipital condyle and to the right of it. When the study was repeated as an MRI skull base protocol, it showed up as clear.
I tell you this bc I didn't even know there was an MRI skull base protocol, and that may be more enlightening for you than the MRI of the brain? I would just clarify with your doc.
I have no explanation for your symptoms, though. My radiation oncologist did tell me that if the second scan showed the same thing, we would radiate.
I'm hoping it's not anything significant, but if it is, it's good that your MO has the RO on standby. Prayers that that will take care of any disease in that area.
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sadie, I had something similar a few months back. I had horrible pain on the right side of my skull, day and night. MRI read nothing there. Finally my NP asked if I was taking pain pills. ( I have no pain pills for cancer) I said yes I was up to 4 tynol (sp)at a time it barely touched it She said you might be having rebound headaches. This sounds weird but, she said my brain likes the pills and knows when my headaches occur I take the meds. She said to switch between tynol and ibuprohhin (sp) and start decreasing the amount that I take until I take nothing. And it worked!!!!! Haven't had a headache in months!!!!!
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I was diagnosed back in April. In March, I fell in the shower and broke my right shoulder. I had horrible swelling for a while, then I decided to go to Urgent Care. They did a ton of imaging and found the bone mets. They didn't know for sure at the time, and I had no cancer diagnosis before. It was already in a lot of places in my skeleton. Mainly spine, pelvis, and ribs. I quickly had a mammogram and they biopsied my breasts. That's how they found out about the cancer. If I hadn't fallen and had some sort of symptom from the meds at the time, I wouldn't have known about it. They suspect a bone met in my right shoulder caused the break. I didn't have high calcium levels in my blood like I've read some people do. My alk phos has been high every time they've tested it since April. Recently found out it's progressed and is even more widespread. The good part of it is there are no signs of it in my spine, ribs, and pelvis now. Oh, and I went through radiation therapy. They targeted my spine, a hip, and my right shoulder. Had to stop it early because the mets in my ribs were inflamed and spasming, causing excruciating attacks. Had to get help just to get out of the radiation bed each time because of it. Didn't know they could cause a reaction like that. Dexamethasone has helped stop those attacks, but I'm slowly coming off of it. I don't know if they'll come back when I stop taking it. I've also broken a vertebrae and a few ribs since April. All related to the mets. I didn't do anything to make it happen. I'm on such good painkillers I barely felt any pain with those. In fact, I almost didn't believe I broke those bones after reading the findings. I feel almost like I'm made of glass. I also sometimes get cracking in my skull. It will just do it if I move my neck after keeping it still for a while. I have headaches as well. There are a lot in my skull
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Hi Anzu, I’m sorry you’re hear but it’s a good group and very supportive. I hear you on the cracking. I’ve been getting a lot of that in my neck. Under the circumstances it’s a bit freaky.
Thanks for weighing in Snooky. I’m pretty certain it’s not rebound though as I’m typically bloody awful about taking pain meds. I am usually in pretty rough shape in the morning so remember to take some meds but throughout the day, even with a lot of pain, I forget. Don’t know how many times I have gotten out on my walk with the dog Or gotten into bed and thought darn... So, despite not taking much in meds I find that they aren’t touching it most of the time, even at night.
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Interesting ideas about foods that might help. Free info this weekend only: https://squareone.chrisbeatcancer.com/encore-weeke...
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First time posting, I was dx w/ liver mets 3 weeks ago and had a nuclear bone scan yesterday. Woke up to a note and the test results from my oncologist which showed several ribs/spine/pelvis with mets. I start my 3rd round of chemo pills today and will see her next week to discuss starting Denosumab. I was just wrapping my head around this whole liver thing and was NOT expecting the bone mets. Any encouragement would help!!!
Anyone else here with both bone & liver mets?
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Pamela sorry for you diagnosis I was always led to believe with HER2- that when it metastasizes it goes Bone then Organ...so the Bone mets were likely there first...they don't always show on CT or CT bone scans..mine didn't.
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Pamela- Welcome. I too have bone and liver mets. I was diagnosed in 2017--diagnosed with bone and liver at the same time. I am from Illinois too--Southern part of the State. Just wanted to say Hi and if you have any questions, just let us know.
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Denosumab brand name Xgeva, given for the purpose of keeping bones strong & preventing fractures. I was on it for 2+ years, I stopped in January to get dental work done, I haven't re-started yet. Never really noticed side effects specifically from Xgeva, nurses always said to drink a lot of water the day after the shot.
There's a thread on here specifically for Xgeva. Usually given once per month, some MOs will do longer intervals after one year of monthly shots to minimize ill effects.
Risks - osteonecrosis of the jaw which can be, but not always is, related to dental work, hence my long hiatus to get my teeth fixed. Also, ironically, these bone strengtheners can cause fractures after being on them for long periods.
Xgeva is the same as Prolia which is given for non-cancer osteoporosis in a smaller does.
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Denosumab is easy easy easy - quick shot in the arm or stomach. Super long half life on it too - I was taken off it in March due to Covid and only restarted this month and it didn't seem as urgent as the others. Just stay on top of your dental check ups (make sure to have one before you start), keep your teeth clean, and drink water after injection day, but other than that there aren't any side effects. My MOs noted that not only would it help heal the fracture in my SI, but also helps to keep bone mets growing in the first place.
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Just wanted to share a paid survey opportunity for people with bone Mets. $50 Amazon gift card if you qualify. Easy and quick screener, then you get an email back to the also quick and easy survey.
I feel like I may have gotten the link here but it doesn’t come up in the search so I am posting and my apologies if this is a duplicate post.
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hi everyone, so I will be starting my chemo regimen soon, just had to finish up my radiation. My MO is having me start with lupron, then letrozol the next day , I guess to shut down my overies. Then I will be taking Ibrance and Zometa every 3 months. Anyone taking all of this. Can I please have your thoughts. I’m scared to feel worse than I already do. Tha
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Sadiesservant - please let us know what you find. I'm so sorry, that sounds miserable. I wish I could come up with any other explanation but I am at a loss. It definitely sounds like nerve involvement and that your docs are rightly being cautious. I am also hoping these are symptoms of the occipital met and nothing further. The only thing I could think of in terms of pain relief for the headaches that you may not have tried is botox. I know it sounds weird and I laughed when my sister in law mentioned it. She suffers from chronic debilitating migraines and had a few botox injections at the top of her forehead on the hairline. It relieved the pain when nothing else she tried did. The theory is that it paralyizes the muscles and blocks the pain signal at the nerve ending before they reach the base of the neck. It's effective with tension headache and migraine headache type pain but in the case of mets I don't know. I wanted to mention it if it might be useful. Thinking of you and praying for good results of your MRI.
Hopfull2 - You are younger with this disease like I am. I was diagnosed with my initial cancer at 40 and MBC at 42. I haven't had your specific regimen but chemo put me into what my doctor called "chemopause". My cycles did not come back from chemo but I'm told some do. I now take the Verzenio and exemestane which are a CD4/CD6 inhibitor and an AI combo like the Ibrance and letrozole you will be taking. There is a thread "young with MBC" on here and specific threads for Ibrance and letrozole too. I follow one for Verzenio and it is super helpful to have feedback from folks taking your same regimen. I would say that the biggest thing I noticed from the exemestane and the whole gamut of hormone blocking in general was that cognitively I am not the same. I sometimes feel like I get a brain fogginess and my memory is not what it was at all. I just don't feel like I'm as sharp most of the time and I miss that. My hair did come back from chemo but on the AIs and CD4/CD6 it is more thin at the top which is not unheard of across the board with these medication classes. It can be styled to cover it though. Emotionally it was a little rough while my body adjusted to not having my normal hormonal flow and I was very easily teary or irritable for a while until my system adjusted. I'm so sorry you are going through this. I did find this community and that has been huge in terms of a support system and finding people who are sharing a similar path. Look up the Ibrance thread. I hear it's pretty active and I think the letrozole and zometa are pretty common with a lot of folks too. A lot of us post in multiple threads and so it becomes an extended network of support which is great. I have my family and friends but it's amazing to be able to talk to people who get it on your same level too. We are all here to support you, this journey can be a rough ride sometimes.
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Thanks Emac,
I did have the brain MRI last Monday and, thankfully, it came back clear. (It was an amazing process. There is a long wait list of MRIs where I live but my MO has clout so I was pushed to the front of the queue. I certainly understand why. He wanted head and neck so I was in the machine for an hour and a half!) The skull mets are still described and there does not appear to be any change. But... he feels strongly that, clinically, there are signs of subtle progression of the mets in my skull/cervical spine. He ordered a prescription of Decadron which was a huge fairly immediate help with the headaches so there is indication that there was swelling somewhere. As he noted, in that area even a millimetre of growth can press on nerves causing issues. He's now reaching out to my RO as he feels I'm a candidate for radiation - now waiting to have an appointment set with her. (Not sure what she will decide to radiate. I actually suspect the cervical spine - C1/C2 - are the likely culprits but we'll see.) So relieved that the headaches have eased as, by noon on a work day, my head was pounding. However, I am still struggling to work for sustained periods at the computer as it really messes with my neck, particularly up at the base of my skull so not "cured".
Ultimately I think there will be some positives that come out of this. I have been struggling for some time to find a pathway to reducing my hours. I enjoy work and love the freedom of not having to worry about money if I want to be a bit reckless but my job is intense (completely crazy right now) and I have not been able to create the kinds of boundaries I had hoped to. This is pushing me to make a formal request to go down to few, shorter days per week. I've already spoken to my boss and my MO, both of whom seem supportive so now it's just a matter of going through the "process". (I just have to ride out the current work related craziness!) Wish me luck.
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Sadiesservant - I'm glad you are getting relief. Decadron does amazing stuff! I'm glad you got pushed through. I hear you on work. I had to drop down to part time. Physically I just can't cut it any more. I can't afford to quit because I need my medical insurance so I'm looking to see what else I can do that better fits my fatigue and pain levels. Hopefully things settle down and you can get a break soon. I'm glad you have a supportive boss. That makes a huge difference!
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Sadiesservant,
I'm glad that you had your MRI and that it didn't show any brain mets. As you know, my docs were looking at the exact same area and declared that there was "nothing there." But of course, I still worry. The way you've described things, though, comports with what I discussed with my RO before my MRI with skull mets protocol -- she had said if there was something there, they would want to radiate it. That sounds like the route that you will likely be taking.
Glad that the decadron is helping with the headaches and hope you get further resolution in the near future.
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Hopful - that is a pretty common regimen for first line and there are a number of ladies here on it. I never had chemo so have nothing to compare it to, but once they got my dosage level right for the Ibrance and my pelvic met radiated, I started feeling better every month and now I feel, more or less, better than I have in at least three years. They will start you on the highest dose for Ibrance at 125 and will draw blood a few times to see how you are tolerating it. I was dropped down after the first month due to a side effect and low WBC (which wasn't THAT low so no idea what the decisionmaking was there). Since then I have remained at that dosage and it doesn't really give me much trouble - or nothing that some OTC med cant deal with. Ill admit that I probably had an easier than average trip into menopause with limited hot flashes and not much else, so YMMV on the hormone suppression.
Sadies - 1.5 hours in the can is a LONG time - and here I was complaining about my 45 minute spine scan! What a trooper and what a relief its not brain mets!
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Sadiesservant, so relieved your brain showed clear on the MRI. You and I have both been going through this bumpy patch with skull mets and headaches lately so I read your post with interest. My brain MRI last month was also clean, thank God. I have four skull mets, 2 of which are fairly large, with adjacent thickening in the dura which was chalked up to inflammatory response to the mets (as opposed to cancer spread into the dura). I am scheduled to have a comparison brain MRI in a couple weeks. Oh joy.
I had migraines from May through mid-September, a couple a week at first but then increasing to near-daily. They've abated for now. Not sure what caused what, but my dh bought a blue light blocker screen for my Mac and I haven't had a migraine since then. OTOH, it could be that I was just in the middle of a cluster that ran its course for the time being. Who knows. All I know is I am not taking this blocker screen off my Mac for anything!
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Hi Lulubee.
It's somewhat reassuring to know I am not the only one! Sometimes I feel like a hypochondriac. Of course, wish you could avoid these extra adventures. Have to admit that the brain MRI was a bit unsettling...
Waiting to see my RO next week. I think there is a need to hit the little buggers but don't know which ones she will shoot for. I'm doing well now but my headaches were daily for over two weeks which gets old really fast. By noon each day I had a total blinder. MO prescribed steroids which very quickly knocked it back - probably a sign there was brain swelling/irritation. Now, my biggest issue is the side effects of the steroid. Taste issues, some nausea and... the most problematic.. insomnia! I am getting by on about 3-5 hours of light sleep a night... the fog is starting to settle...
Thanks again for the support.
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Sadiesservant, I am so sorry. I just loathe steroids. I mean I'm glad it knocked back your awful blinding headaches but golly, at such a price. They mess me up like that, too. I hope you find some way to get some sleep. My college roomie used to say, "Sleep is the root of all happiness," and she had a point.
I'll be anxious to hear what your RO says so be sure to keep us all posted.
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I have a question for you all. At what point do you contact your MO when you are concerned about a new symptom? I have had mild lumbar pain before that comes and goes. It's usually stiff after a hard shift at work or if I've been working in the yard. It goes away with some heat and stretching. For about two weeks it's been progressively worse and more sharp. For about a week now it never goes away. I can't get rid of it with heat or meds. I can relieve it some by laying on my side but that's it. I see my MO monthly and my next appointment is this coming Tuesday, the 13th. I'm always debating do I put a message through the portal or am I being a hypochondriac? I have no sensation or strength deficits that would alarm me to a spinal cord threat, just persistent pain so I'm stuck having a debate in my head. I'd appreciate any thoughts you all have on the subject.
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