Bone Mets Thread
Comments
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Syrmom, I understood the same as you, just wanted to make it clearer.
Deyla, hope the MRI goes well. I can't believe you are managing to work and look after your children. I can't work much at all, and have trouble looking after my 5-yr old. You are amazing!0 -
Has anyone had facial numbness from cervical spine mets?
I was taking a steroid last week that resulted in facial numbness, swelling, and a rash. I stopped taking the steroid, and the swelling and rash have gone, but I am still very numb from my chin to under my left ear. I am wondering if somehow the cervical spine mets are impinging on a nerve. I plan to ask my onc this week but wanted to know if any of you have had this issue before. I have had numbness and tingling in my legs from the lumbar spine mets, but this is the first time I've had facial issues. Fortunately, I can still swallow, there is no paralysis (no sagging of one side of my face, etc.) so I don't think it's related to a stroke or anything else. I'm just frustrated that one more issue has come up, sigh.
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Raro, I know that you can also get neuropathy on your face, so maybe it is this? (Especially if you are on a taxane)
Something else I thought of - last month a friend of mine (who doesn't have cancer) had a similar issue. She lost all feeling in her tongue and one cheek and one side of her jaw. She did a zillion tests (MRI, ct, and more), and in the end after everything was ruled out, she was told it was the result of a virus, and it would get better by itself. So just to say that maybe it isn't cancer related at all.0 -
Thanks, Latte, I hadn't considered all that. I'm not on any treatment right now (HATE being "between" treatments) but finished up a year of aromasin/afinitor. The fact that it happened so suddenly makes me wonder if it's something besides the cancer. The numbness in my legs was more gradual.
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Well ladies mri didn't happen today because whoever scheduled it screwed up because my doc wants it with contrast and they don't do contrast on sundays. I have to reschedule tomorrow. Hope everyone has a good night.
Deyla0 -
Oh Dayla how frustrating! I'm sure that is for your own safety though and getting it tomorrow is not long to wait.
Love n hugs. Chrissy0 -
Hello all, just diagnosed with mets to the spine. Obviously not happy about it, but I've heard that bone mets are a little "better" than other mets. I'm hoping that's true...
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Hi Beth and welcome. Throw in any and all questions that are plaguing you at the moment and hopefully we can come up with some answers or suggestions for you.
Love n hugs. Chrissy0 -
Ok, thank you, I do have some questions. For the past year I've been getting treatments at my local cancer center. They pass a lot of stuff off, tell me I'll be fine, pat me on the back and send me on my way. Now that I have mets I find myself feeling very angry towards them. I called the cancer treatment centers of america and I'm trying to get I there. In just curious, what is the standard treatment for bone mets? A friend of mine said to get the cyber knife, my local doctors are pushing radiation asap, before a biopsy...even though they still need a biopsy. They tried to schedule me for tomorrow, I told them I couldn't. I want to wait to hear back from the cancer treatment center in philly first.
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Beth with your being Her2+ you will be put on Herceptin if you are not on it already and if you are, they will probably add another drug, sorry my mind has gone blank on the name of it, to make the Herceptin more effective. To start Herceptin is usually given with a chemo but I am assuming you had that first up so they may put you on a combination AI/Herceptin/ other drug......sorry. I'll see if I can find the name of it for you.
As for rads, they do work well in alleviating pain and killing those little suckers but I would go through with a biopsy first to make sure that you are still ER/PR+Her2-. Once that is done then you can decide on the rads or not at this stage as they can only be used once in the same spot.......ie, the vertibrae that has the cancer can only be zapped once but the rest of your spine can still be done should the cancer show up there at some future time.
Treatment for stage IV differs in that it usually doesn't aim for cure but control so the docs usually start with the gentlest meds first leaving the heavy chemos for much later. They always keep in mind that you need not only quantity of life but quality as well.
Hope I haven't confused you further.
Love n hugs. Chrissy0 -
Beth, just remembered the name of that other drug, it's Everolimus........I think I got the spelling right.
Love n hugs. Chrissy0 -
Beth I am triple positive also and when my bone mets were originally diagnosed I was put on Herceptin and Arimidex. That is an aromatase inhibitor which is typically given after Tamoxifen fails. If you are ER/PR+ you will definitely be given a hormonal along with herceptin. That was all that I had and was very effective for a few years. I didn't have any pain so I never had radiation, but from speaking with some women in my oncs practice they have said that when they started the treatments similar to mine, their pain resolved itself. I guess it depends how much pain you are dealing with and where it is. Also as far as a biopsy, I did have one in 2010, but my original diagnosis was in 1997. My onc wanted to be sure that the tumor was still ER/PR+ which it still was. He claims that the Her2nu statuss is less likely to change, but that the ER/PR can.
Prayers and positive energy!
Monica
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Beth, my mets are to the hip, femur, and ilium. Radiation helped a lot with the pain, although it took awhile. The bone has to heal, which causes some pain.
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Hi Beth,
Even for bone mets, you'll see quite a variety of treatments. I have one met to my upper femur. I did haves biopsy to confirm that it was a met of my bc. I had no pain or any symptoms at all but had radiation. The intent was to render that 2 cm spot inactive, necrotic or dead. Rads did that quite well. No cyber knife, just targeted rads. Very few women on this forum, at least those who post, have gone to Cancer Treatment Centers of America. I think there is someone on the stage IV forums who did, but her name escapes me at the moment. Wishing you the best.
Caryn0 -
My oncologist said she will work with any other medical facility if I wanted a second opinion but not Cancer Treatment Centers of America. I did not ask her why. She was happy when I said I wanted to go to MD Anderson for a second opinion. She has a good rapport with another oncologist there and she discussed my treatment with her.
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Suecolo, really? Someone else said they wouldn't go there either. I wonder what the deal is. I spoke with them on the phone and they seemed very knowledgeable. I also know of someone that went there for brain cancer and they loved the place. I have a friend who's a health care lobbyist and a 5 yr survivor and she's met the president of their board and liked them.
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Well, I don't mean to cast stones but... If they don't find your insurance adequate, they ask for a great deal of money up front. This is a big turn off for many. I also know of two instances where they felt that they could not be "successful" with certain cancer situations and would not even see the patients at all, i.e. they seemed to be screening for those whose situations would only have good outcomes. The feeling was that cases with a poor prognosis would bring their % of successes down. However, there is someone on this forum who was very happy with her care there.
Caryn0 -
The girl who went to CTCA is Iwillwinthisbattle. I called them but they didn't take my insurance. I am also pretty sure that they are the ones who do not want to work with anyone else. They want to be in charge of all of your treatment. I do think its worth looking into because I like the fact that they use comlimentary treatments. I think they also have some treatments that other facilities don't have.
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This story appeared last March. Again, no bashing intended, and those who have been treated there seem very happy but if what this article reports is true, it makes me squirm a bit (well, more than a bit).
http://www.reuters.com/article/2013/03/06/us-usa-cancer-ctca-idUSBRE9250L820130306
HLB,
What tx do they offer that other facilities don't?0 -
Well, the guy mustve called while I was out, but he told my mom to tell me it was good news so I'm assuming I've been "accepted" there. I'm going to give them a try, and if I don't like them I'll move on.
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Cancer Treatment Centers of America is a purely profit making business. It's "statistics" are manipulated. They use a very small number of patients and pull "certain" patients to trend. Because they are a private, non government funded business, they don't have to report data to any regulating organization regarding saftey, results, costs/expenses, etc.
They also often, according to some people who have gone there, order additional tests and procedures if you have the right insurance. Also if your insurance runs out or the max is met they will drop you faster than you can turn around. They will treat you only as long as they can profit off of you.
I know this because I researched their organization after they told my son that since I didn't have the right insurance they basically didin't care what happened to me. Those were their exact words. I found others who were rejected just as cruelly by them. One guy even took his wife to them, they had the right insurance, they picked them up at the airport in a limo. They agreed to treat her. However, she became very ill prior to treatment and was hospitalized for a month. When she got better her husband inquired about when they could start treatment. He was told she wouldn't. They didn't want to treat her anymore. He told them she would die without their help. He was told "you just need to accept that". She did die a short time later. The belief for the reason for the change of heart had to do with her chance of a poor outcome. They didn't want her to possibly screw up their numbers. They also tend to accept patients with possible better outcomes then cases that appear hopeless.
I'm sorry for the long post but I felt the need to tell what I found out and why I think they're a disgusting money hungry organization..they're not a hospital that's for sure.
If others still want to go to them, that is their choice (after all it is a personal decision). I just think people should make sure they know the whole story rather than what the commercials state. After all that is marketing and they pay a lot for it. The major cancer facilities don't need to advertise because they actually have real numbers to back their results. Those numbers are analyzed by outside regulated organizations unlike CCTA whose numbers are put together within their company. They did have an outside person analyze their statistics but he was paid by CCTA and thus not exactly unbiased. But even he admitted that the statistical samples were small.
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The other treatments they offer are nutrition therapy, massage, accupunture, basically anything that they can bill insurance for. I'm sure they billed the insurance for the limo probably under the guise of medical transportation. I'm sorry but I don't trust anyone who refuses to divulge their data to outside sources..what are they afraid of. Also they tend to be possessive of any advances in cancer (if they even make any since they don't give out any particulars), so they don't want to help cure or advance cancer discoveries because they don't want anyone else using their methods. Other universities share their data for the common good. I really believe that people should look to their closest major university hospitals for advance cancer treatment or second opinions. They also are on top of clinical trials when the need for them becomes necessary unlike CCTA.
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Ok, so after reading even more about them I've decided not to go. I spoke with someone from Abramson Cancer Center/University of Penn. and they were extremely helpful. They are going to get me in as soon as they can and they will be using the cyber knife to zap this thing.
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Just read a little of your posting and don't have much time right now, but my radiation oncologist in South Florida speaks very highly of UPenn. Best of luck!
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Hi ladies. Mri is set for Thursday. I had chemo, I'm on Ixempra right now, Monday and Neulasta shot today. Boy do I hate that shot it makes my bones hurt even more! Hope everyone is well.
Deyla0 -
I have heard that altho CTCA have a lot of staff for the complimentary treatments-they have very few board certified oncologists or oncological radiologists. Both very important and certainly worth asking about for any treatment facility.
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Does anyone know why an MRI would show "possibile" spots /lesions but they do not show up on PET scan?
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I have that and was told the "spots" too small to show up on Pet Scan; so they continue to watch them.
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My MO won't talk about timelines and 5 year survival statistics. He says everyone is different. He also is very optimistic and says that with Breast Cancer there is always a plan B. For now - I am just on Xgeva and Femara and my markers went down last month. They drew blood on Friday so I am anxiously waiting to see if they dropped further or not. Plan A is to stay the course until the markers start to go up. I also think my MO is not a big fan of scans for monitoring. He seems to go more by how you feel and when there is pain - he wants to get to the bottom of that. He is very quality of life oriented. When I was having trouble walking (which thankfully is resolving - turned out had a small break non displaced in my pubic bone and that in addition to what they think was initial tumor flare response to starting treatment seems to have been responsible for most of pain. I still have some but it is SO much better that I feel like it doesn't count. Sort of like that story where the rabbi tells the man who complains about his house being too noisy to go out and get one animal after another and bring them into his house. Then he has the man get rid of all of them and go back to the original situation which is no quieter but the man is happy....).
I realize this is kind of rambling and really - I am meaning to write to support those who are concerned about this 5 years and you are dead prediction - as my MO doesn't seem to think that way.....
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20130502,
I am glad you are doing well. I am too, on Arimidex and Aredia. Funny thing about scans, if I hadn't had one (for reasons unrelated to bc), I wouldn't have known about my bone met at all. I felt fine, no symptoms. I had rads to the met and it is now necrotic. It comforts me to know it was found before it created problems. Just goes to show you that we see everything through the lens of our own experiences.0
