Bone Mets Thread
Comments
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Z- in the past 5 years my TMs have always been spot on I'm afraid to say so I'm expecting progression again. But I do appreciate that my MO is proactive with me.
Have a great weekend all,
Babs
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Jinni welcome to the thread and at the same time sorry you have to be here. From what you told us I gather you only have one met to your sternum and from what I've read on these boards when it's only one met the radiation is used with the intention of killing it completely. Having said that there is still a possibility that it will recurr somehow here else but like the others have said there are tons of options for treatment for multiple mets.
The worst is when you just received the diagnosis and the first year. But little by little you start realizing you're no going to die today or tomorrow and anyway nobody knows when their time will come. So try to be positive and one day at a time.
You will be in my prayers.
Aurora
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Yippee Gracie that's great news!
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Jinni,
Our dx seems similar. I am also on femara/Ibrance and am doing well after one year. I had extensive mets but now they are resolved. I am sure you will learn along the way that everyone is different and all cancers behave differently, but I hope to encourage you along the way. Check out the Ibrance topic thread.
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Thank you all for being so supportive and amazing! This week has been much better and I will be undergoing 2 session of chemo Thursday and I'm ready. I hope all you ladies are doing well and I can't wait to talk more with y'all.
Jinny
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Hi!
I'm new here .
I've been diagnosed with stage IV three weeks ago .
i was doing well after a stage I diagnosis for 3 years UNTIL the last pet scan that showed bone mets .
I'm all lost , I think I had few bad advises the last few weeks , I changed my oncologist , the first one said i may only have 6 months , the other said " its five years mostly though we don't know for sure , nothing is sure " and i started radiotherapy . the doctor giving me radio said the fact that I have one lesion in bone means " and he used the C word "
I wish i know how much do i have , but no one seems to be honest or sure enough .
I cant sleep or eat well , I cant believe doctors anymore , they said my cancer wont spread and it did . i dont know how to adapt to this ! my daughter's wedding is soon and everything went disarray with my diagnosis . life suddenly turned upside down .
the words " bone mets " horrifies me , as i watched my uncle dying with it only a year ago . it was painful and he only lived 6 months after the bone mets diagnosis , only a year and a half after lung ca diagnosis .
I dont want to spread negative vibes , I know that each one of you is dealing with too much on your own , but I'm lost as I said and I'm not all wise at the moment .
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Star~ one thing I have learned with cancer is they honestly do not know. If you have just bone mets, many people can have them shrunk or targeted therapies. You are not going any where is six months. I was diagnosed stage four two weeks after a stage two diagnosis. It was also in my liver. They removed my breast, 13 nodes, and the spot in my liver. Then through all the harsh chemo and treatment, it settled in my pelvic area, that was Jan 16, some ladies have been around years and years. You just do not know and obviously the doctors don't know either. You're going to need to get on some treatment, I am currently taking ibrance and had a six month out from the start of ibrance scan, And I was considered very stable. So take a deep breath, and while I know you're scared we all are. What I can tell you is last week I jogged and walked 17 miles. Somedays I feel great. Medicine can control the pain and targeted therapies can limit further spreading. Hang in there. We all are in the shame shit stew!! One day at a time is the way i do it. This place is a book of knowledge and I can promise you one thing. It is better to know what's going on then to not. I don't agree with the six months at all. Stats mean nothing it's all individual. Not to mention those stats are way out of date. My onc told me many times. If you can limit the growth and keep it out of the soft tissue. You can live many many years. Fill out your profile and treatments so the ladies can comment and provide you with ideas and issues we all experienced or learned through our path into cancer. We are sending big hugs and please know you're not alone. Not in the least. I have begunbeen into my 7th month of ibrance and I am doing very well. Most of us are honestly. But we are all fighters together. We are sorry you're here for this reason, but the support here is endless. Praying always ~M~
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Starstuff. Ithers will be on here soon whi know more but I just wanted to tell you there are many treatment options to get you to ned for a long time. Get an incologist who tells you that a bone met can be dealt with. Especially if its not causing pain. I had a ct scan that showed multiple lesions in spine and pelvis. I am now in ibrance xgeva and faslodex. What treatment options have you started. Gentle hugs
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Texasj, like you I was dxd stage IV from the start, just 6 months ago at age 41. I finished my neoadjuvant chemo two weeks ago, it got tough towards the end but it's totally doable.
Starstuff, my onc wouldn't give me a timeline but they did say that some can live 20 years with bone mets. I have no pain, did my 1st 5k walk about a month ago and if it wasn't for my bald head, you'd never know. Things will get better once you have a plan in place. This is a great group and many of us are living very well.
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Starstuff, I also was never given a timeline. My onc told me that she has many stage 4 patients at the 10 year mark. Also told me to ignore the statistics, says they are very outdated and do not reflect the new treatments available. I am 26 months out and doing well. I have extensive widespread bone mets in almost every bone in my body and Ibrance/Femara/ Xgeva have taken me to NEAD, ( no evidence of active disease). Hang in there, you will learn more here then any doctor could ever tell you!
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Welcome, Jinny and Star! So glad you've both found BCO and this thread! The first thing I would encourage both of you to do is to find an oncologist and other doctors (e.g. rad onc or surgeon), if needed, who specialize in treating mbc. From comments in both of your posts, it sounds like that may not be the situation you have at the moment. Those who deal with a lot of mbc patients would never give you a survival timeline because they know that we are not statistics and that everything hinges on how well you respond to your meds and other txs. Anyone who gives you a timeline is limiting both your hope, as well as their own commitment to you. It may take some effort to find a true mbc expert, but that's who you need directing your care, even if you rely on local docs for some of your care. Jinny, without knowing where you are in TX, I would think MDAnderson would be your best bet for a second opinion, just to be sure you are on the right tx path. And Star, if you are in the US, here's a list of the top notch medical facilities that will have breast cancer experts, or can possibly direct you to someone in your area if they are too far for you to go for a second opinion. But you -- and we all -- deserve docs with more positive outlooks than it sounds like you have at the moment. Those who treat a lot of mbc, especially bone mets only, these days speak in terms of it being more of a chronic condition that hopefully can be controlled for many years -- again all depending on how you respond to tx. https://www.cancer.gov/research/nci-role/cancer-ce...
And Star, look up ogliometatasis, which is what it sounds like you have, and for which the prognosis is usually extremely good, with an excellent shot at getting NED (no evidence of disease). In fact, knowing you have only 1 lesion, I can't fathom what that doctor who suggested you might only have 6 months was thinking! I'm so sorry that happened to you. There's no excuse for giving a newly dx'd patient that kind of misinformation!
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Hi ladies, I believe last week I reported that my scans came back stable/healing for my bone met but now it seems they can't tell the difference between progression and healing on the scan. From what I've read, this is fairly common and that a change or uptake in the image should not be considered progression without evidence of new mets. Have any of had experience with this kind of scenario?
FYI, this was discussed in my pre-op for lumpectomy, now my options are surgery, no surgery or wait a few months, scan again and decide. The MO, BS and RO all agree equally that they have no preferred option but I'm leaning towards surgery.
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Illimae, for what it's worth, some lesions expand before they die off...at least that's what I've been told.
I would wait a few months and scan again as long as you're not having any pain.
Others will chime in with their experience as well.
Don't get too worked up over this. We all have ups and downs. While I was getting a second round of rads to a different part of my spine, the lymph nodes in my left armpit (side where BC originated) swelled up and were achy. I could actually see them when I raised my arm over my head.
Growth? Progression? I don't know, and I don't care at this point. I took my Xeloda like a good girl, and things have settled down in my armpit......for now.
Hugs.
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Illimae, yes, I had a similar experience of having my UCLA onc's PA calling me to tell me a recent scan showed progression and that I needed to see my onc ASAP. When I got there a few days later, my onc looks at me and says, "What's up?" -- clearly having no idea why I was there! So she had looked at the same report/scans, and even though the report suggested progression, knowing my hx (lower TMs, no pain since being on the med I was on at the time), she had interpreted the results as healing and the conclusion of progression just an "overly aggressive" radiologist. Not saying that's your situation, but I do think you and your onc need to look at all the other potential indicators of progression/stability to discern what's going on in your case.
I don't feel I know enough about your situation to venture an opinion about surgery, except to say that I am, in general, very cautious about surgery if you aren't very stable and 100% convinced it's safe to be off your meds for whatever time is required for complete healing. I think that's the only danger -- a healing complication that could make your time off meds more risky, especially if you are not stable or better.
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Illimae - in my case, progression was mistaken for inflammation.
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Thank you. So, as I suspected this is common and honestly, the radiologist and oncologist aren't certain either and often don't agree.
To clarify, I have no pain, the bone met was a complete surprise and will be treated with radiation to knock out any existing cancercells. Also, with chemo complete 2 weeks ago, I'm on maintence herceptin/Perjeta every 3 weeks, which wouldn't be interrupted by surgery. I wish there was more conclusive imaging for the status of bone mets.
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Hi, I was diagnosed with bone mets last August after years of back pain. My last scan showed "less activity", which is good, but I am still having a lot of pain. I had a 3-level kyphoplasty in February, to no avail. I have been to 2 pain clinics but they weren't much help. I am taking Gabapentin 2400 total per day, which just takes the edge off. It is a pain (LOL) because you have to remember to take it every 4 hours. Does anyone have any suggestions for dealing with pain from bone mets? Thank you for any guidance you can provide.
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Carol, I have a lot of back pain, too...from multiple compression fractures, mets, AND degenerative arthritis. So it's hard to say where the pain is really coming from. When I started getting numbness and pain in my right leg, we radiated, and some of that pain did eventually go away.
I've been curious about Kyphoplasty...but seeing what you've written is discouraging. Don't want to put myself thru that if it's not going to help.
Glad the gaba helps you. I'll look into that.
L
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Star, as you probably can tell by now, you will find a lot of positive support from this group. I was dxd with stage IV bc from the start one year ago, and my once extensive bone mets are now inactive. There are a lot of new treatments available to help you manage your disease and the accompanying mets. I want to encourage you to stay positive and don't be afraid to ask questions and take advantage of the great resources others have already told you about because we really do care!
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Thanks for your reply Lita. At least I'm not alone.
What meds do you take for pain?0 -
Hello everyone!
I am a daily lurker here, but very rarely post. I was diagnosed with ILC in March 2012, one bone met in my glenoid in Nov. 2014 and a second in my ilium this past March. I had CyberKnife radiation for both, and I'm doing quite well these days. Just living my life as normally as possible! I learn so much from y'all and feel like I "know" all of you, even though I probably haven't posted a word in 2 years. Shame on me, I know!
At my appointment this week, I was offered to be a part of the Srata study, and felt I had to share it here. Strata is doing tumor sequencing on metastatic patients at no cost to the patient. It seems very interesting to me that they will use cells from my original biopsy and my bone biopsy to do a genetic sequencing on my specific tumors. The purpose is to help the drug companies further developed targeted therapy, but they will also contact my oncologist as soon as any targeted drugs are available that match the genetic compilation of my tumors. I'm sure the primary benefit of the study is for the drug companies, but if it helps develop treatments to extend our lives- I am all in!!! I'm excited to see my results, even though I know it won't mean much to my uneducated mind. Just knowing there is a targeted, specific plan for progression makes me feel like I am doing more than spitting in the wind, you know?
I'm very fortunate to live near two NCI hospitals (Duke and UNC; I'm a UNC patient) , and I wanted to share this study in case any of you lovely ladies could benefit from it. They are accepting 100,000 patients at no cost. I remember seeing the bill for my oncotype test my first cancer go-round in 2012, so it was exciting to me to see this development. Hope it can help someone, as y'all have helped me more than you can possibly know.
http://www.strataoncology.com/#main
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Carol2007,
I take medical marijuana - vaping for "break thru" pain and edibles for the deep bone and nerve pain. Oxycodone and hydrocodone don't even touch the pain...and then there are all the side effects and withdrawal from opioids. Thank God I love in a LEGAL state. No withdrawal from MMJ and no constipation. I use the stuff that has high cbd's so you don't feel "high".
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Awesome information Dianne, I pray you find that targeted trial is just what you and all of us will need!! What a nice thing to take part in. Good luck and keep us posted please!!??....I saw my pallative care doctor today and she is amazing. My favorite doctor by far, she said she specifically wanted me to know that there are several patients in her practice that have had bones mets only for two decades and it's becoming more and more possible. She said one of them alone has had it in her bones since 1984, when cancer treatments weren't as good as they are now. She said if you have limited bones mets and no soft tissue involvement, that you have an excellent chance of survival, especially if you have a not so aggressive cancer, she said usually if your doing well on a treatment, and you're feelings stronger and or better , then you have a good match. She said there are many upcoming things they are looking at, she told me relax, I am not going anywhere anytime soon, and these days, unless it's unfortunately all over your body, they are treating it completely like a chronic condition. The battle lies in finding the best match for your side affects, which is why I see her, they have so many ideas and tricks up their sleeves. She has helped so much. I haven't felt this good since diagnosis!! Hugs everyone and I Hope all scans are good! And love to hear good news. ~M~
Carol~ when I have really bad days from bone pain. I use 5% lidocaine patches that I get from my pallative care doctor. They help me a lot I alternate them every 12 hours on and then at least 4 to six off. To rest the skin area. It has worked great and my insurance covered them, I have also been taking a very small doseage of methadone. Like 1 mg, I don't even know I am taking it it's such a low dose because I worry about being too dependent on something. But it really does seem to help in combination of other things, like the patch. I never knew that could help with pain, until the doctor told me and also. I have zero side effects from it. Just a thought about what helps me. I do not live in a state that has dispensaries set up yet because It has just been legalized, so in time I willalso be vaping because that is one of the types allowed. I hope you find something to help you soon!!Hugs~M~
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Star - just wanted to let you know, I was diagnosed 5yrs ago with extensive bone mets. The first order of business was to radiate the 3 largest tumors causing pain. Then I started Faslodax and Xgeva. Worked great for 3years. Now on Letrozole and Ibrance and its been 2 years. I fully expect to be here for a good many more years. You need to find an onc that you like and trust. You are going to be partners in this together for many years! No one knows how long you have. We are all unique!
M - Audio glad you got a good palliative dr. I love mine also! So darn helpful and knowledgeable!
Hugs and prayers everyone
C
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Star - just wanted to let you know, I was diagnosed 5yrs ago with extensive bone mets. The first order of business was to radiate the 3 largest tumors causing pain. Then I started Faslodax and Xgeva. Worked great for 3years. Now on Letrozole and Ibrance and its been 2 years. I fully expect to be here for a good many more years. You need to find an onc that you like and trust. You are going to be partners in this together for many years! No one knows how long you have. We are all unique!
M - Audio glad you got a good palliative dr. I love mine also! So darn helpful and knowledgeable!
Hugs and prayers everyone
C
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Lita you surprised me your hats aren't the only cool thing about you. MJ has been a huge help to me as well , I don't think I would be sleeping if I didn't have RSO and I don't have any pain (knock on wood) and I have mets basically everywhere. One warning for everyone though.... was my birthday Saturday my daughter actually came home to surprise me . We went out for lunch on Saturday and I had taken a small bite of my edible gummy. I guess it was a little too much or I hadn't drank or eaten enough but we had lunch and after lunch I became very very high and then I passed out. This has never happened to me before in my life I was out for enough time to have an ambulance called and my husband had managed to wake me up. I had fallen off my chair banged my head on the way down . Very embarrassing of course the restaurant was full.
So turns out Taxol lowersblood pressure so does MJ something to remember don't want that to happen again. I have been doing edibles for two years from the same supplier nothing like this has ever happened. MJ is said to help chemo work better but I will be careful from now on. 😉
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Wendy, that's indeed scary. I'll keep that in mind because I also take blood pressure pills.
I'm currently making my own edibles with cannabis infused butter and olive oil that I make myself from dispensary bud. This way, I have full control over the dosage. I have to be very careful with the Grandaddy Purple (GDP) strain because you really can't taste it at all in brownies or cookies. A little goes a very long way. It's an indica strain so it doesn't make you paranoid like sativa strains do.
I remember the very first time I tested the GDP oil, I drizzled a little of it over some steamed asparagus one night, just a teaspoon. Couldn't taste it at all, so I put ANOTHER teaspoon on. Big mistake. Thank God I was at home and didn't have to go anywhere. 😛 It lasted for hours.
It really does help with sleeping and full-body relaxation/reduction of pain.
L
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I can also attest to the fact that x lowers blood pressure. I've cut my dose in half after some scary dizzy spells and recorded low blood pressure. Doing fine in that area now.
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I had my first fight with breast cancer in 1998 - lumpectomy and tamoxifen, then again in 2013 - full masectomy with diep flap, now in my bones!! I am going back on femara but can't decide on the bone medicine. I have clodronate disodium but not sure if I can wait to eat two hours after I get up. I could do xgeva, palbociclib, or zoledronic acid(zometa). Very concerned with side effects as I have to work under a hard schedule for the next three months. No choice , no work, no money and frankly I need my work to keep me happy. Any thoughts?
Here I go again. So sick and tired of dealing with this damn thing
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Dianne, Thank you for the link and the information. It is wonderful that you will participate in the trial. I am anxious to hear about your experience and results. It sounds like a step in the right direction.
Wraithg, Welcome to the bone mets thread. I am sorry that you have reason to join us. This is a wonderful thread with great, supportive, knowledgeable people here to help. Palbociclib,aka Ibrance, is a targeted therapy rather than a bone medicine. It is taken along with either Femera or Faslodex and has been shown to increase the progression-free survival time for many women. Its main side effect is lowered blood counts, and many of us have had to move to a lower dose if the counts drop too much. It sounds like you have taken Femera in the past, so you are already familiar with those side effects, mainly achy joints. The only other SE that I have heard of from several people taking that combo is some fatigue. Everyone is different. I am taking Faslodex and Ibrance and am on my ninth cycle of Ibrance. I feel really good and have had minimal SEs. I did have to drop from 125 mg of Ibrance to 100 mg after my first cycle due to very low blood counts, but I am doing well. As far as the choice of Xgeva or Zometa, both work, but I think most people on this thread would recommend Xgeva to you. I take Zometa and had no problems.
I hope you don't mind some good news. If you are not up to it, please just skip the rest of my post. I cannot contain my feelings. I am dancing for joy. I was hoping for stability, and I would have been happy with that. My bone scan shows improvement -IMPROVEMENT! There is healing going on in this old body of mine. No new lesions, no fractures and, I have to say it again, IMPROVEMENT over my last two bone scans, and my bone mets were everywhere! My CT scan also shows improvement in bone mets, and it also shows that my 3 liver mets that were 2.1, 1.2 and 1.2 cm last year are now down to one indeterminate 11 mm hypodensity. My breast tumor doesn't show up at all with only amorphous soft tissue showing on chest wall. Kidneys are still messy, but that is not cancer-related. I am happy and relieved. So here I am, 2 years and counting. Thank you for listening to me.
Hugs to all, Lynne
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