Bone Mets Thread
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threetree- occasionally I see a local oncologist orthopedic doctor. He reviews my nuclear bone scans, looking for potential fractures or areas as risk of fractures.
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Dodgersgirl - Thank you very much for letting me know what you do, and how that relates to your bone mets. Were you referred by your regular oncologist or PCP, or did you decide to see the orthopedic oncologist on your own?
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dodgersgirl,
Thanks for mentioning that you have seen an oncology orthopedist to review your bone scans. This possibility has never been brought up by my MO. Early on I expressed concerns about the risk for bone fractures, especially spinal, since I worked out with weights. I asked for a referral to a specialist who could give some guidance on safe weight lifting. My MO refused. I'll try another approach given your experience.
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Threetree - I live in a smaller town and though we have a cancer center we don't have an orthopedic oncologist here. I had the same surgery that RK2020 had. Mine was back in 2019 when my mets were discovered and the whole thing happened fast because I was considered high risk for fracture. I never considered an ortho oncologist even existed. About a year later I had a suspicious spot on my shin show up on a bone scan. The ortho who did my hip/femur surgery brushed it off as a progression met and sent me back to my MO. I consulted with an ortho onc up in Portland who went over my bone scan and x-rays and concluded it was not a met which was a huge relief. The spot has gradually gone away over two years on bone scans. I don't routinely see the ortho onc to review my scans because I have been NEAD for almost two years but I would absolutely ask to use him in the future should I develop a progression to my bones or need additional surgery.
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Dear divinemrsm, weninwi- thank you very much for the information. My mum actually got the first B12 injection today as it was prescribed by her doctor. Hope it helps with her low energy/bad mood (a similar psychological effect mentioned by weninwi). Her most recent blood test results came today. It shows even lowered levels of WBC and haemoglobin. We will see her oncologist next week and let's see what he thinks. Something that worried us is her CA15-3 trend with this new result: when she started the treatment it went up even higher, which we were told was normal due to the start of the treatment. Then, it started decreasing drastically over the past 6 months from about 198 to 88. But today's result shows only a slight decrease to 84... Is it a bad sign? Does that mean she might be becoming resistant to the treatment? Her PET scan last month showed much improvement compared to six months ago, which was revealing for all of us... but today we all got very worried again... let's see what the oncologist says next week... thank you all for your support
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Emac877 - I'm in a large city, and I had never heard of an orthopedic oncologist, not that I would have had any reason to until all this. Additionally, I haven't really seen any comments over the years that I can remember, where anyone has talked about seeing any such doctor until now. I'm pretty surprised actually, since so many wind up with bone mets.
Wow, you had that same surgery that RK2020 had. That sounds pretty "big time" to me, and I'm just glad that both of you seem to have benefited from it and been relatively OK. Re your shin issue, I read some time ago that while you never know for sure, it is super, super rare for any breast cancer to spread below the knee - again, not that it couldn't or doesn't ever happen, but my understanding is that it would be a highly unusual thing if it did. Glad that whatever it is, it seems to be going away. I'm going to make a "note to self" to look out for more info about these orthopedic oncologists. It's helpful to hear all of the experiences that some of you have had.
Also - a big congratulations on being NEAD for close to two years! Crossing my fingers that I too could be so lucky. This is so scary!
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threetree, I hear that hip replacements are easier (whatever that means) than knee replacements. My dad is an ortho surgeon (hand specialist) and he actually did the rod-in-the-femur thing when he was in the Air Force. I pictured it being a hip to knee incision and a major surgery, but he said it's a fairly small incision near the hip and they put the rod it. The Ortho Onc that I saw was initially concerned about the stability of my femur but decided it's fine (enough) for now. I only saw her a couple of times and the visits were actually video visits. I liked her, and my dad seemed happy with her decision.
I know others who have actually had the rods placed can chime in, even though you're talking about a hip replacement, rather than a femur stabilization.
Any surgery is a big deal. I hope you get some answers soon.
Carol
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Threetree— I asked my MO who was watching for fractures after my bone mets diagnosis. He referred me to the oncology ortho doctor. He reviews bone scans, then I see him if something seems “off”.
Weninwi— prior to bone Mets diagnosis, it was discovered I had a compression fracture in my spine. So I went into the MBC concerned about fractures. That led me to asking who was monitoring my bones from that viewpoint
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Sunshine - I'm not actually having any procedure myself. Since I was told I had bone mets, I have been reading this thread and have been curious about the orthopedic oncology matter, as I had never heard of it before, and would like info in case something comes up for me in the future. Can't always rely on my oncologist exclusively. What you've said here has told me good things. When I saw that RK2020 and Emac had had that femur surgery, I did imagine something real big and serious. Your info from your father makes it sound like it's serious of course, but not as OMG as I would have thought. Thank you.
Dodgersgirl - I already have some fractures in my ribs apparently and of course they are watching my spine. I seem to think they did see a compression fracture, but I am not certain and haven't been in the mood to go back and read those scan results. Usually I can stomach it all, but with this new stage 4 thing, it's been a lot harder to go back and re-read the results. This is why it's good for me to know about these ortho oncs, because like you, I might be needing one. Sounds like a good thing that you have one reviewing your bone scans. I am going to consider looking into that. Really appreciate your post.
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I've been seeing an ortho onc ever since my bone met was suspected. Actually the radiologist who did the MRI suspected ewings sarcoma, which usually happens to teens. That led to a total breakdown on my part. Anyway, the ortho onc said they'd biopsy to confirm, but he said there was no reason to jump to that odd diagnosis, as it was most likely to be metastasis of the bc. He was right. It was a bc met.
The ortho onc is within the same hospital system (tho different hospital) as my medical oncologist.
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Im at a major European cancer hospital and research center and as far as I can tell, I would have to ship it up to Birmingham for an orthopedic oncologist, they dont have one on staff where I am at, and the ones in B'ham mostly do you know, primary bone cancer. Although surely it must all look the same (roughly) or behave in a similar fashion?
Regarding B12 - I was very low last fall due to having gastro issues with lansoprazole (of all things!). I had the six consecutive injections and perked up pretty quick. I think Im due a top up actually, supposed to be every three months.
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threetree after my long note to you awhile back, I was swiffering my floor and had a sudden pain in my left mid- rib. It feels muscular, but it can get pretty sore if I move a certain way, or after sleeping. I am due for a CT with contrast when I head back north from our Florida place. Can any of you tell me about your experiences with Zometa? I am going to have to start that soon. Does it make a big difference? Side note: in the cancer center where I go one of the docs is doing research on bone scaffolding. I wonder if that will be a way to strengthen badly damaged bone, I will have to look into it a bit more.
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Gigil,
After my MBC diagnosis with bone mets, I was started on Zometa every 3 months. My MO said it can help lessen bone pain. After 3 years my MO lengthened the interval to every 6 months because of the potential long term side effects of jaw bone necrosis and spontaneous femur fracture. Zometa has something like a 10 year half-life. The dose is based on weight and kidney function (creatinine levels), so I always get weighed and get a creatinine level before each dose. My dose was lowered slightly after about 2 years, and I'm not sure why, as my weight has been stable and my creatinine levels have always been within normal limits. It's an infusion given slowly over 30 minutes, at least at the cancer center where I go. I experienced generalized achiness after the first dose but no side effects for all following doses. It was recommended to me to have a dental exam before starting to rule out any problems such as periodontal disease, or the need for any surgical dental work, including root canals. Once you start Zometa dental surgeries must be avoided due to the possibility of jaw bone necrosis. Some women on this board have mentioned stopping Zometa for a while if dental surgery is needed. I see a periodontist every 3 months to make sure my teeth and gums stay healthy.
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rhreetree-Didn’t you get your results last week? How did it go? Please post an update.
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Rk2020 - How exceptionally thoughtful of you to remember about my situation like that! Thank you. The bone (T8) biopsy results confirmed metastatic breast cancer from the original tumor. It did "flip" a bit and now rather than being almost 100% ER/PR+ and HER-, it is now considered to be only 10% ER+, PR-, and HER "low" (+1). To me, this looks like for all practical purposes, it has become triple negative, but what do I know? Since it has been about 2 months since the CT and bone scan, they tell me I will have to repeat them now (!), so that they can get a baseline for when I start the drugs, which will be Fulvestrant and Verzenio. This time lag is ridiculous! I fully expect the new scans to show further spread over these past 2 months. I swear I can feel it. They say this is the "post"-Covid world, although we still have lots of Covid.
Everybody whose has taken or is taking Faslodex and Verzenio: I will be starting these two drugs soon and would absolutely appreciate hearing about all of your experiences good and bad with these two drugs. They both have horrific side effects listed and I am absolutely dreading this, but feel that I have no alternative, but to just not do treatment and die sooner. I feel like I should at least give all this my best shot. That does not take away the fear and anxiety, however.
I am supposed to get a Fulvestrant injection next Wednesday for the first time. I am wondering how quickly any side effects that I might experience would kick in. I don't know if I should drive myself, or if I should ask my friend. Some of the side effects include things like weakness, dizziness, nausea, vomiting, diarrhea, etc. I hardly want to have any sort of accident and throw up in my friend's car, but with those kinds of side effects I don't think I should be driving myself either. I don't know if these side effects kick in right away or take some time. I also realize that not everyone gets them all or gets them severely, but again, a lot of them look really nasty, and obviously somebody gets these or they wouldn't be listed.
Re the Verzenio, I am also terrified to start that too. They are currently in the process of getting the prescription approved for me at no or low cost. They said the drug is $13,000 per month and that with my Medicare and supplement my co-pay would be $3,000 per month - ridiculous. They are putting in with Eli Lilly for some plan that would make it essentially free and they think it is highly likely to be approved. The oncologist was originally talking Ibrance and Fulvestrant, but I told her I had read on here how so many seemed to be doing pretty well for long periods of time with Verzenio and Fulvestrant and that it seemed to have stood out to me, so she said we could try that first. I was surprised that she was open, as she hates hearing about what I read on the internet, and discourages me from looking around online for info.
Again, I would just love to hear all of the Verzenio and Fulvestrant stories and experiences that you all might be able/willing to share. It helps me so much to hear all the first hand experiences from the wonderful people here. This is far better than anything any medical staff could tell me. Hugs to all of you!
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threetree - I spent 3 months on Verzenio/anastrozole after 19 cycles on Ibrance/Fulvestrant. I started Fulvestrant 16 days before starting Ibrance because I needed to have femur surgery before starting Ibrance. Other than a tender butt for a short duration, I did not have any noticeable side effects until sometime later when I noticed joint aches. That being said, they only lasted a few months. I had some diarrhea with Verzenio but it was the stomach cramps that were more difficult for me. To give me the quality of life I desired, we lowered the dose and then worked our way back up. I think it’s wise to get a baseline scan and if your doctor runs tumor markers, get a baseline for those too. I’m hoping that you are lucky enough to be able to live like the ladies in the commercials! It happens…so why not you
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Gigil - So sorry to hear about your rib pain. I hope all turns out well when you get the CT. That is the sort of thing I had started to experience last fall. The grocery store is only two blocks from me, so I've always thought it was in my best interest to just walk over there and carry things back. It's worked fine for years. Suddenly last fall I would occasionally get sharp pains in both front and back ribs while carrying the bags. The pain would seem to subside, and I didn't think too much about it. I began to notice the same thing when I would carry packages that were delivered up to my apartment - something that had not been a problem before. Since January, when they did finally discover the mets in my ribs, spine, and sternum, I have been experiencing a lot more of that kind of pain, and I too don't know just what is OK to do or not do. I can't tell what is muscular and what is the fracture and cancer spot issues. The doctors haven't been very helpful and say it could be either or. I'm always afraid of making things worse, but since I don't know what's what I have no idea how to deal with this.
I will probably have to start Zometa also. At my last oncology appointment we ran out of time and only discussed the Verzenio and Fulvestrant that I'll be taking, but she said it is on her list. I declined to go for the bisphosphonates a little over 3 years ago when I started Letrozole, but my osteoporosis did get a little worse, and now with these bone mets, I suppose I ought to give them a try - just dreading it.
I honestly hope your rib issue is just muscular. From what I've been reading (and I am no doctor, PT, or other expert here), it seems to me that any kind of injury to the back, whether it is muscles, nerves, or bones produces about the same kind of symptoms. I think it has to do with the intercostal nerves that apparently connect up to the spine around T8. If those nerves are affected for any reason, it seems to cause mid back pain that then spreads to the ribs. Again this is just my take from all the reading I've done about whether which pain is muscular, nerve, or bone related. Seems like multiple causes can create very similar symptoms. Fingers crossed that yours is indeed, muscular.
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Rk2020 - As always, thank you so much for the info in your post. It gives me some hope that I could wind up with minimal side effects from all of this. The oncologist took some baseline tumor markers with the scans in February. I don't know if she will want to update those before the drugs or not. Like you suggest, probably a good idea. What treatment are you on currently? Ahhhh, those ladies in the commercials - does anybody really live like that? All those parties, barbeques, sunny days, and nothing but happy laughing times with friends and family, and lots of happy music playing behind us... don't we all wish!
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Three tree
I can't comment on Verzenio, as I take Kisqali, but I have been on Fulvestrant for a year, and Xgeva for my bones for 7 months. I have had no problems with anything but Kisqali, and those have improved over the past several months after my dose was decreased. You may have a few months of adjustment, but I hope things go smoothly for you.
Eleanora
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Eleanora - Thanks so much. Sounds like any troubles for you have been fairly minimal. Kisqali is in the same class as Verzenio, so probably has some similar side effects. Others too have mentioned that after a few months, things smoothed out a bit, but that seems like a long time to wait.
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weninwi thank you for telling me what to expect with the Zometa. I realize we are all different, but yet the same. The idea of lessening bone pain sounds good also. I have finished all of my oral surgery now and am fully dentures. That in itself has been a challenge!
Threetree I shared your apprehension about Fulvesterant. I was so fearful of the loading dose schedule. I have now had six rounds of injections. I tolerate the injections very well. They sounded like they would be very painful, but the nurses are so careful to give them in just the right spots. I get them both at the same time. I always take a bit of a walk afterward. There is no immediate reaction. The medication is suspended in an oil solution to be absorbed slowly. I have noticed that I get some muscle spasm in my back a couple of days after my injections. They are relieved by Tylenol. The muscle spasm is nowhere near the injection site. I also get a hot flash or two in the evening. Very transient and not miserable at all. I drive myself to my medical center, which is 80 miles from my home. They are very bearable. I take Ibrance. I don’t feel many side effects there either. I actually feel stronger when on it. I have had my dose lowered because of its affect on my ANC and white count. If I go by how I feel, I wouldn’t even know it. I am very prone to side effects, so maybe I can reassure you a little. Not a touch of any GI disturbance. I might be slightly more fatigued at first, but nothing I can’t push through. As everyone says, any side effects get less with time. Here’s hoping your experience will be very tolerable. Have your friend along for company, moral support and a pleasant distraction. That always helps
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threetree,
I put a post for you on the Abemaciclib - Verzenio board with a summary of my experience on Verzenio.
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Gigil, i had a flu like symptoms for two days on my first Zometa shot six months ago. I still have to get my 2nd infusion when I'm ready.
Threetree, I'm taking Kisqali and faslodex, so far no side effect from faslodex, I'm getting the shot standing up and relaxing my leg, not sure if it's making a difference.
Quick question for you ladies, I was diagnosed of MBC 6 months ago and my MO hasn't ordered any follow PET scan since my met diagnosis. When I asked him about it few months ago, he said it too early. When you have progression, do you feel any symptoms? Any new pain or worsening pain? How can you tell if the medication is working?
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anx789 - Maybe a few details about your MBC would help me rationalize your doctor’s thinking. Is it still grade 3? Oligiometastatic? Bone only? Are you otherwise healthy? For reference, I got PET scans every 3 months for the first 2.5 years (I was bone only) and coincidentally as the cancer spread to my liver, I switched to Medicare and due to their requirement, my schedule changed to every 4 months. Now that I’ve been on clinical trials since Dec 1, the requirement of the trials are CT scan every 8 weeks which often winds up being every 7 weeks. I get my Zometa infusion every 3 months but some women get it monthly.
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WeninWi - Thanks so much. I've seen the post on the Verzenio thread. I'm going to give it my best shot, but obviously not looking forward to it. Supposed to get my first fulvestrant injection on Wednesday. My anxiety levels right now are just sky high. I'm sure this has spread more since they found this in the ER in late January, as I'm feeling noticeably worse. Can't believe the lag time. Not only am I dreading side effects, but I'm dreading the thought that these drugs don't always work for very long or at all for some people and I don't want that to happen. If I go through all of this, I'd sure like to have the fairly good run that so many of you seem to be getting.
Gigil - My friend is going to come with me. I told her what you'd said about how much she would add "company, moral support, and pleasant distraction" and you were spot on. That's how it's been for the other appointments she's come along for. One of the ER social workers told me that they always recommend that someone take a friend, spouse, etc. Since I have no spouse (darn!) my friend is there for me. She's an old childhood friend from the neighborhood and one of her sisters was best friends with my best friends sister, so we all knew each other and each others' families seemingly forever. We've all stayed in touch, and last weekend this local friend of mine and her 2 sisters and myself all drove down to another town about 2 hours from here to see one of the other old friends (my old best friend's sister) for the day. Hadn't done anything like that in years and years. It was real good for all of us to be together like that for an afternoon. They too all told me how glad they were that one of them is coming to my appointments with me. They said it would be good for both of us (my friend and me), and I have to say, I'd never thought about it being good for her, thought it was a chore, but maybe it is good for her too.
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rk, who pays for your scans when you're on Medicare? Which plan do you have? I just signed up for Part A only, as I'm still on DH's insurance. The cost when I go on Part B and whatever else is going to be through the roof, I'm afraid.
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sunshine, many get a Medicare supplement to help cover medical expenses. Mine, which is I think AARP United Health, begins next month and will cost me $122 a month. Part B will cost me $164 a month. My deductible for the year is something like $236. After that, I will not have to pay more for medical care for the year. Totalled, it add up to just a little over $4,000 yearly which I think is very reasonable.
The only problem I may incur is with prescriptions. I have a part D supplement which costs about $20 a month, and with it I won’t pay much monthly for the prescriptions I’m currently on. But I cannot say if I go on to something else like one of the newer mbc meds which are pricey, how that will get covered. Will cross that bridge if I end up taking that route. Altho I think in a year or two, there will be a cap on what we have to pay for prescriptions (per Medicare reform) which can’t happen fast enough if you ask me.
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sunshine - I'm on part A & B but kept my husband's insurance for drug coverage and as my supplemental. His insurance required me to take A & B. It's not cheap and actually my total insurance nut went up slightly when I went on Medicare. But to answer your question because I have part A & B, Medicare pays my scans. When my husband finally qualifies for Medicare, we will see a big reduction in our monthly insurance nut.
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Sunshine - I have Traditional Medicare A and B. My part B is around 165.00 now I think. Like Divine, I also have an AARP/United Healthcare supplement and I pay about $166.00 a month for that. Part D for drugs is now 36.50 a month - also an AARP plan. What I have is very similar to what Divine has. I think the prices vary depending on location. I am going to be starting Verzenio, so might have to bump up to the higher cost Part D plan (around $100.00 a month). To date all I've had to pay for is Letrozole and the premium actually costs me more per year than the Letrozole, but had to sign up for Part D to avoid having to pay the "lifetime penalty" for not doing so. Just said good-bye to Letrozle and will be saying hello to fulvestrant and Verzenio real soon, so this fall I'll need to look at probably changing my Part D to the costlier premium. Medicare and the supplement take care of my scans and I haven't had any co-pays to date.
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threetree: Verzenio and Faslodex were the first treatments I received when I first got diagnosed with mets in 2021. The doctor gave me the Faslodex injections immediately upon diagnosis, calling the infusion center to get me in. I actually was in so much shock that when I walked into the infusion center and they called me in for my shots, I burst into tears. I think it was a sort of PTSD or something. I was back in the same infusion center where I had rung the bell after completing chemo three years earlier, and it felt so unreal and cruel that I had to be back there. I really didn't expect to break down like that.
Anyway, the Faslodex itself didn't cause any side effects for me, nothing obvious. Maybe my joints were a little more achy the first couple days, but I'm really not sure if they were. The injections themselves were no fun, but I got through them.
I was on the highest dose of Verzenio for about a month, but the stomach side effects were bad enough that they reduced the dose (immodium helped but the MO felt I shouldn't regularly take it if reducing the dose helped instead). I stayed on that combo for several months, but one new met site developed on the bone, and the doctors decided to move me off of Faslodex and Verzenio. The doctor said that sometimes BRCA2 patients don't respond as well to Verzenio, so perhaps that's why. She also said it's possible that it would be more effective to try later, if needed.
Best wishes to you.
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