Bone Mets Thread
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SNOOKY YESS!!!>> Reference pulsing...I think thats why when I stopped for a week and then just took it last night today my back felt less pain!! Im going to go up in dose next week to 30 mg then pulse with maybe 2 weeks on 1 off...
Devine...mine feels like achy but also burning
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Dear DivineMrsM (great name
Yes Definitely new so hence the odd ball questions
I was in excruciating pain in January. 10 rounds of rads later, no more pain but yes I get achy however it is constant. On a scale of 1-10 I told my MO it’s a 1. Not even worth a Tylenol 😊. Niobe issues moving about, prepping dinner, which I still need to do. I feel fine. Again looking for context, perspective and some inspiration as opposed to constantly worrying about what I can’t control
hope that makes sense. Happy Easter. 🐣 may the 🐰 be good to you
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Diagnosed 8/2017 - no fractures for me as yet, either. My Mets are to spine, rib, pelvis femur.
About bone scans - I am monitored with PET/CT , I only have bone mets. Surprised more of you are not getting PET scans, is it an insurance thing or ?
I read the criteria for approving “advanced imaging" in my insurance company 's provider literature and they actually say PET is the preferred modality for bone mets- and since it is PET CT doesn't it mean that it also would show everything that is shown on a normal CT scan too, fo other organs.?
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Olma- My insurance company will only ok a PET if they see progression on the CT. Was denied a PET once because CT at that time was stable. Also, I thought PET/CT is not a PET and CT combo, but where the PET is guided with a CT for visualization. So could not get a PET/CT and it be like a PET and CT. Maybe I am wrong.
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Nichole, Apparently the CDC, in 2016, stepped in with Guidelines on how much "F" could be on each patch. Some of the big companies stopped making it because they knew that such low doses per patch would not work. I was terrified of starting this because of all the negativity. But damn, I hurt so bad, so I decided to do it. When I was opening this new patch my sister pipes in with you know that's what killed Prince. ( well thanks alot Jackie) Research: almost all the deaths caused by "F" were from street drugs, they take the patch and lace it with other opioids, heroine etc to fetch a higher price So that calmed me down.
Mylan is the drug that most say is the best, 2nd best is Sandoz 3m and Apotex by Avena isn't fit to bring home.
My doc wrote my script for 25 and unfortunately Mylan doesn't make it that low a dose. So my Pharmacist got me Alvogen the one that didn't work for you. No one told me how to apply these. So here's what I do. Scrub area with soap and water. Dry well, The use a antispective guage. After you apply patch apply pressure for at least 30 seconds. Some will apply a Tegaderm adhesive film over it. Makes it waterproof and it won't come off.
There were a few that rated Alvogen as 2nd best. ( Alvogen just wasn't mentioned that often )Be prepared for it to not work as well on the third day most of the med is gone by then. And NEVER just stop cold turkey as withdrawalls are hell
OH, the lowest patch Mylan makes is 371/2 mcg. Insurance doesn't like to pay for it because its the most expensive.
To all others who recently talked to me on this thread, I will try to answer later on tonight. Getting real sleepy.
Oh Good news for me, 6th day after Havalens first treatment and only side effects are extreme fatigue
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Lots of CT scans but never had a PET
Wow!
You all make me feel better thank you!,
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I've been getting a PET/CT every three months for close to three years. It seems to be the most dependable for picking up bone mets for me. It's interesting that certain scans work better for some but not for others.
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Hi All, never had a PET. I think it’s a holdover from a few years ago as it’s only recently we have had access to a PET scanner locally. Before that, all the machines were in Vancouver (a ferry ride away) and more difficult to schedule. As a result, I think my MO has become comfortable with determining the best path forward based on CT and bone scans. I actually suspect that PET would also not be super effective as I have lazy (but determined) cancer which doesn’t pick up the tracer well hence the issue with bone scans.
Chathamlady, over four years with extensive bone mets and no breaks.
Divine, any pain I have had from bone mets that required treatment was constant, often much worse (or more noticeable) at night. I had a bout of severe sciatica, hip pain that made it increasingly difficult to walk (much better but it still bothers me with a significant ache at night with pain radiating into my groin) and severe persistent headaches from the skull/cervical mets. The other thing to watch for is nerve issues. I’ve experienced some numbness and tingling due to mets pressing on nerves. Thankfully, radiation has been very effective.
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My neurologist says that’s when I must see him - numbness or tingling. Could result in neurological damage. That’s where I was in January. Couldn’t walk. He was afraid it could have been permanent with loss of bladder and or bowel function Radiation and steroids reduced the swelling Now I need to be Uber cautious
Cat scans every 3 months.
The gift that keeps giving but at least I feel@ little better about rraksHappy Easter
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ChathamLady,I’ve had bone mets since 2013, although I went without treatment for six years because it was a missed diagnosis. Anyway, no treatment for extensive bone mets for six years and treatment for almost two, so a total of eight years. I have not had any fractures.
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I had fractures to 3 vertebrae when I was diagnosed de novo in October 2020 including nerve issues at my C7 caused by the fracture and met pressing on the nerve. I also have a few bone mets that haven’t fractured. Just another example of how we’re all individuals and our cancers are all unique
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I had a nuc bone scan at the beginning- don’t recall it was before or after ct scans- from what I saw in the report, the aim is to study joints, bone density as well as bone Mets. Had Second bone scan around a year after, it showed bone loss (being less than a year on hormone therapy) interesting it didn’t show those almost-new progressions! MRI does.
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I just want to say thanks again. I am new so I appreciate your patience. I just hear so much about fractures and bone pain. I’m paralyzed with fear about the future. Hearing your perspectives helps greatly am hoping it gets better
Stay well.
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Two questions. has your doctor ever mentioned bone disease? In late Fef every bone in my body started to hurt, kneews, ankles, hips,, spine wrists etc. I was on A/A which I blamed it on, told onc I wanted off. He said lets finish up the cycle and then scan. (1st scan on A/A showed shrinkage. Second scan showed progression so he took me off with wash out period. But the pain never went went away. That's when he said I have bone disease. I said you mean mets? He said no not just mets, your scan showed areas where they were not mets just grey areas where the bone is not healthy. Before all this happened I had the delta scan which showed extreme orthersisis . Is that what he's talking about?
And then there are apparently 2 different MRI'S? As I've related before when they treated my thoric compression T12 the radiologist ordered A MRI at his location the next day.
Months later when I needed a whole brain MRI scan I asked my Onc if I could go back there because I liked the way they did it better. My ONC said you can't go there they do diagnost MRI's that not whT WE want. I have to learn to speak up cause I didn't now what he was talking about. Do you gugs know?
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no mention of bone disease. Just Mets. And my bone density scans, at least the 4 years before this were all no evidence of any weakness or shrinkage so I think I started out string but good
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snooky, there are actually a number of different MRI techniques. For your spine, it might have been plain MRI and DW-MRI that you had. DW-MRI is supposed to be more sensitive for bone changes. DW stands for "'diffusion weighted" but I don't really understand the difference. It is complicated physics stuff.
for the brain, I know of regular MRI and also fMRI which is functional MRI. I think there are more. It's possible they wanted one of those & not the other?
I went down the rabbit hole of researching best imaging for bone mets when I first had a presumptive spine met on CT. After reading for several hours MY impression was that...it's complicated. lol
probably the new fluoride sodium PET scans are the most sensitive & specific but they're expensive, expose pt to more radiation, & not readily available.
For me, we're doing CT & nuclear bone scan together to monitor.
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Thanks for all the input on scans. I know my former MO said if PET was ever denied by insurance we would go with CT and nuclear bone scan. The nuclear bone scan I thought was pretty good at picking up bone Mets because it does see the metabolic activity of the cancer like a PET does.
Anyone know if that’s correct and also, to the people who are saying bone scan isn’t that helpful, are you getting a different type of bone scan?
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My cancer is definitely spreading in the spine...to the Lumbar...I feel pain there now...
. What did I expect..I mean I am off all meds for almost 4 months now....0 -
Olma, in my case I think the problem is that my cancer is slower growing so it doesn’t pick up the radioactive tracer. I have my suspicions that PET would be equally meh. But CT? Shows bone mets everywhere.
Nicole, so sorry to hear you have more pain. Hopefully you can resolve the issue with your stomach and get back on treatment soon!
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Hello, I have been meeting several of you over on the DeNovo thread....but have some questions, and maybe experience also relevant to this one.
The question is how patients think about the bone pain/weakIening supposedly related to letrozole in relation to the weakening we already get with bone mets. I've noticed several folk here are on letrozole. Just took my first letrozole tablet tonight and have done a bit of reading about people's experience with it. With three fractures already in my spine, and some rib fractures too, I'm wondering what recommends this particular therapy? I will be getting Zometa as well to strengthen bones, and I realize not everyone experiences every possible SE of letrozole. But it's just kind of weird to take a drug that often causes pains and weaknesses I already have.
As for the kyphoplasty question....this was suggested to me when it was assumed my fractures were caused by osteoporosis. I was somewhat concerned by the possibility that that stronger, rigid, cement filled vertebrae would cause fractures in the weaker ones around them. I did not want more fractures. Now that the diagnosis is cancer, I guess it's on the table in the future, but none of the orthopedic folks I've talked to want to do it now. They think the cancer should be treated first, and gotten under control. FWIW that's been my experience.
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prairiesea, good to see you here asking questions. I, unfortunately, can't help with the kyphoplasty question.
As far as Letrozole, the only thing I've noticed is my feet hurt when I stand up for just a few seconds and my knees are stiff. I haven't had too many problems with it. If your pain gets worse while taking it, I would definitely let the doc know.
I also have a question for everyone here. I mentioned on my de novo thread that I have had intermittent left side rib pain over the last few months, usually feeling a little worse when I'd lay down at night. It wasn't every night. Well, in the last week I've been having horrendous spasms behind my left rib and they move around to the front as well. I'm very tender to the touch. My doc called in a muscle relaxer for me, and I was just going to take them at night. The pain went away for a few days, but it's back with a vengeance. I took a muscle relaxer last night and could not get to sleep. The spasms didn't stop.I've never been diagnosed with rib mets, nothing has even mentioned my ribs since I was diagnosed. I can't tell where the pain is coming from, whether it's my ribs or something else. Just curious if anyone here has had left side rib spasms. I called my doc again this morning and told them I don't want to panic but want them to know and asked what I should do if they get worse. I'm trying to hold off seeing them until my appointment on Monday. I'm having a hard time breathing, but I think it's because I'm holding my breath because of the pain. I'm one of those people whoalways has an excuse for why I feel pain. I just don't want to try to ignore it.
They told me to take the muscle relaxer every eight hours to try to get the pain under control. Ugh. I just took one.
Edit to add doc called back and is going to order a thoracic MRI. I have not had one ever of my thoracic. I think this is a good plan.
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Prairiesea, I have muscle/point pain from the letrozole. It tends to move around a bit - almost always in my hips and thighs, sometimes worse and sometimes less, but occasionally in my hands or knees. I am on pamidronate to strengthen the bones and hopefully prevent further fractures. The letrozole has SEs but it’s taken to lower the estrogen in my system which the little bc beasts currently need to grow.
KBL, I haven’t experienced left-side rib pain; however, leading up to my diagnosis, my sore middle back (thoracic) and then sore neck (cervical) turned into mild back muscle spasms and then extensively painful back muscle spasms (a 12 out of 10 on the pain scale). The muscle spasms were always at night when I was lying in bed and they left me breathless and unable to move. I was prescribed Flexeril at the ER when my DH and I could barely get me out of bed one morning and that really helped ... my muscles would try to spasm but they just couldn’t do it. I still had the back pain but I no longer had the intense muscle spasm pain. When I was finally diagnosed, I had 3 vertebral fractures and I feel the muscle spasms were related to those fractures, but that’s just my opinion.
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Hi KBL. I have quite a few rib mets, particularly on the right side, and have had some pain when things were brewing but it tends to be an ache. I've never had muscle spasms. I agree with Ilowen, it sounds to me like it might be related to your spine rather than the ribs. Hope the MRI provides some answers!
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Hi, KBL,
I, too, have some rib mets. I'd agree with Sadiesservant -- really not many issues with them. However, with my latest back and spine stuff, I have had, for the first time in my life, spasms. And they ain't pretty. But I think they are related to the back/spine stuff.
My internist prescribed cyclobenzaprine for the spasms, and told me only to take it at night because it can make you really sleepy. That's what I've been doing, and it's definitely helped with the spasms.
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Thank you all for responding. I’ve never had a thoracic MRI. I thought I knew my mets were through my whole spine but I guess not.
It’s too funny. I’m used to always having to wait for things, so I’m sitting here thinking, well, I’ll probably get in for the MRI in a few weeks, I’ll just have to deal. The doc’s office called me this afternoon and said they tried to get me in today but had no luck and will try tomorrow. I said, Really? She said, oh, yes. We need to see what’s going on with you. I’m taking the muscle relaxer every eight hours now, but so far no luck. I keep having to take deep breaths. The pain is awful. I’ve been very lucky throughout this crap to have manageable pain with maybe an NSAID. I refuse any pain meds. Not doing it. If anything comes of this, I’d rather get a medical marijuana card and use that for pain management. I’ll keep you posted. I’m also just wondering since the mets are in my stomach if they’re getting worse and it’s causing the pain. I’m hoping that’s not the case.
Thank you again for the great info. It’s so comforting having people who understand.
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KBL,
Because of my back pain (with which I am still dealing -- both me and with my cancer center) -- I was prescribed tramadol. I said I wouldn't use them either. But then I think I basically od'd on ibuprofen -- I was taking so much that it messed up my liver numbers. So I decided to alternate between NSAIDs and the tramadol. But my pain has gotten worse and they haven't really figure out what to do with me yet, so today they called in a prescription for dilaudin (sp?) which is a level up. I'm going to try it because my pain is so bad. We'll see how it goes.
Just telling you because they do seem to work a bit better for me than NSAIDs.
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KBL, I had to laugh about the wait for scans. It's one of the things that makes me slightly uncomfortable. While there are wait lists for virtually every scan here, I zoom to the front of the line if my MO orders it. Nice but there is small amount of guilt.
As to pain meds, don't shun them completely. There are meds that don't make you loopy. I take a small amount of tramacet (low dose tramadol and acetaminophen) to keep things under control. It helps a lot. You don't want to live with pain..
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BevJen, I’m so sorry you’re in so much pain. I don’t look forward to the day where it’s so bad I can’t function. I’ve been so fortunate. I hope you have a solution soon. I know you’ve been talking about what might be next.
Sadiesservant, thank you. We do try to be so strong, and when we can’t be as strong as we want, it’s hard. I’ll talk to doc about your treatment. She did ask last week if I wanted Tramadol. I said not yet. It was hard enough for me to ask for the muscle relaxer.
I have never gotten to jump the line before. I didn’t even know that was a thing. We’ll see if it happens.
I watch my grandson periodically, and I don’t want to take pain meds when I do that. I dread the day I have to say I can’t do it any longer. Ugh. My husband is usually here with me. I think I’m going to have to stop watching him by myself. I can’t pick him up anymore.
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Well, some progress in my situation. Tomorrow, I have an appointment with a rheumatologist who specializes in side effects of immunotherapy, one of which is inflammatory arthritis. Hopefully she can enlighten my MO and me about if what's going on with me is caused by that. Also tomorrow, the spine tumor board is meeting to review my case of my back. They will pull in a radiation oncologist, a neurosurgeon, and an interventional radiologist and maybe a few others. Their job is to review my records and my most recent scans and to come up with a solution. So we'll see what that is.
My MO also changed my pain medication to dilaudid until we have a plan here.
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That’s great, BevJen. I hope that team can help you. I don’t think I have a tumor board at my center. I hope everything aligns and they come up with a plan.
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