Bone Mets Thread
Comments
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I'm new to this site. It has given me a lot of encouragment. I was devistated when I found out I was Stage IV with a tumor to my lower lumber vertebra. I was diagnosed Stage IIB in November 2009. Had a double mastecomy in January 2010. Started chemo several months later due to many infections from surgery. I had my last chemo treatment in September 2010. I was taking Tamoxifen since Sept 2010. The OC had just moved me from every 3 months follow up to every 6 months when cancer came back. I had pain in my back shooting down my hip and left leg. I went to the ER and the doctor told me it was siatica, he never even took an Xray. About eight months later I noticed the pain was spreading to the right leg and hip. I mentioned it to my OC and she ordered tests to determine the cause. I learned from this incidence to not completely trust doctors and to be your own advocate. I just started chemo again. I am doing taxol once a week for 3 weeks then 1 week off. Then I recycle again. My OC said I would need an injection once a month (not sure which one she mentioned, will ask at next visit). So far it appears that I only have the one met at this time. My question is: I am going to a smaller cancer treatment facility at this time, but I have an appointment with the University of Chicago cancer facility for a second opinion. My son is pushing for me to go to UC since they have more experience dealing with this and more research opportunities. However, it is much more traveling time then my current OC. The difference is at least 4-5 hours there and back. I'm leaning toward UC but am scared I won't be well enough to travel there frequently. I'm also concerned that if I change OC, will I be burning my bridges if I can't continue to travel? Is anyone here having a similar problem?
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Aaoaao.......it sounds like you're being treated correctly, even aggressively. It never hurts to get a second opinion though. Your OC shouldn't have any problem with it. If he does, then I wouldn't hesitate to switch. Sorry you're joining us, but so glad you're finding encouragement here.
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Naniam,
I guess I never thought about regional preferences for certain drugs. I know that Aredia (Pamidronate) has been generic for a while, whereas Zometa (zoledronic acid) just went generic this past April. Both are very similar. Xgeva is a bit different and not currently available as a generic. The concerns about ONJ and femur fracture apply to all of the bisphosphonates ( which include things like Actonel, Boniva and Fossamax too).
Caryn0 -
aaoaao, your current oncologist should not have a problem with your going for a second opinion. In fact, he should encourage it, if for no other reason then you will feel better.
Many women here have a local oncologist who coordinates and carries out a treatment plan developed at a regional/national cancer center. They visit the big cancer center a couple of times a year but get treated near home.
Welcome to the group, glad you're finding help.
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Kiakaha I am not familiar with the procedure you descibe but it sounds like maybe they want to treat you with the intent of a cure. Some doctors do this when you only have one met and I think its worth a try and very hopeful! It is devastating to find out but many of us have many years of good quality of life and having only one met is a good sign. Welcome :-)
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Thanks Kaymic and Pajim for the advice. Hopefully I can coordinate my care with both facilities. My current OC is nice but she tends to be hard to communicate with. She doesn't really tell me anything unless I ask specifically. For example, she said I only had one met to my back after I had a bone scan, CTs and MRIs. But then later I ask if that meant I had no brain mets, my son wanted to know for sure, she told me they hadn't checked that. We assumed no other mets meant they checked everywhere. She said the MRIs only check what they ordered to check. My son told her I had frequent headaches to get her to order a brain MRI. I asked about my other organs and she said they were clear so far. I get confused by all the fine points that I don't know. My OC also seems to get a little snippy when we ask questions. Again she is a nice person but just not the warm and fuzzy type. She also kind of blamed me for not mentioning the headaches (my son exaggerated the headaches, I only get them due to allergies). She said "you have to tell me when you're having problems." Yet this is the same OC that didn't do anything for over a year when I told her I was having pain in my legs. She only order tests after I was in her office in such pain that I was actually in tears. I also don't know what is significant and what isn't. Should I tell her EVERYTHING I feel? After you get a Stage IV diagnosis, you worry that every ache or pain is cancer spreading. I guess I'm a little over whelmed by this mess.
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I have also wondered why they don't check for brain mets when they check for every other organ. I have had full body bone scan and ct of the chest/abdomen/pelvis and I thought right away that the brain was left out. I didn't want to say anything because I don't want to think of that possibilty.
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Although brain mets are a possibility, they are most common in
ER/PR- but are usually only checked for when symptoms arise. The usual path of the mets is bone, liver, lungs which are the most common as well as other areas within the body to a lesser degree. Brain mets are not normally found at dx.Hope this helps to explain why you are not tested when all other scans are done.
Love n hugs. Chrissy
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I also wondered why I wasn't scanned for brain mets. I thought that maybe they only come after bones, liver, and lungs. HLB, I also didn't want to ask! 🙉
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Well just in case anyone is interested, I have come across some few and far between info about boswellia as an alternative treatment for brain mets, so I am taking it for prevention because I figure it can't hurt.
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Thanks for everyone's reply. I will be starting radiation in about 3 weeks for 25 treatments to my L1. Hoping I can keep side effects to a minimum. Thanks and Kia Kaha
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Hi Chrissy, I have been on Gabapentin (300mg. twice a day) making me a pretty happy lady mentally. A couple of weeks ago it seemed to turn on me and I got very depressed. My primary Dr. told me to get off of it by taking the dosage to one a day for a week and then stop. Tomorrow is my stop day. I will also go to my onc. tomorrow for my monthly checkup. I was put on it for neurothopy in my feet. It didn't help, but it was a Neuron and helped me mentally. My onc told me it also helps with pain. I am happy to be getting off of it. I ordered a natural supplement From Terry Naturally called Curamin extra strength with BCM-95. I will take it with me on my onc. visit tomorrow. My TJM is getting worse and I will also talk to him about doing Zometa every 3 months. My dentist is also staying on top of this. I have always been one of these people that does whatever the Dr. says. My primary also wanted a spine Xray last week which I did and it came back saying I had degenerative this and that. I guess he had to meet his Xray quota. Let me know what you think of this Curamin with BCM-95. Thanks, Barb
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Thanks for the info Chrissy. I didn't realize that brain mets were more common with ER-. I never really thought about it, but I usually don't get my brain scanned as part of the PetScan. If case anyone is interested, my onc, has prescribed Temodar for most of his BC patients. That is a drug used for brain mets, but he claims there is data which shows that it provides protection. No side effects really, but some insurance will not approve. Luckily I was able to get it. Don't know anything about Boswellia, but I am definitely going to check it out. Any sort of protetection can only be a positive.
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I am TN and usually participate in that forum. I have a question for everyone...how were your bone mets discovered? I have been having pain in my shins for about a week. Just wondering, is there a place the mets start? My rib is sore but has been ever since rads in 2011. No other symptoms except fatigue but that also has been on and off since rads. TX was lumpectomy and rads.....MO rx'd Chemo because of the aggressiveness of triple negative but I declined. Anything anyone wants to share would be appreciated. Thanks.
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My mets were found from the very beginning with bone scan and CT chest and pelvis. Originally mine was in T10 and some ribs, now most of spine, ribs, femur, mult. areas.
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Bc rarely metastasizes in bone below the knee. As or ribs, yes, it's quite common to have mets there, but if the soreness is unchanged since you had rads, I wouldn't be too concerned. My bone met was found incidental to a PET done for other reasons. No pain at all. Still, when in doubt, see your mo.
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My bone met was found when I had extreme pain shooting down my hip and leg which led to my OC ordering an Xray that confirmed I had a tumor on my lower lumbar disc. If you have any severe pain at all I would ask for a some type of scan to be certain the cancer hasn't spread. I say better safe than sorry. I suffered a year with the pain in my back and it delayed my treatment.
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I had back pain that would go all the way down my leg. I felt crippled i could not walk, lay or sit. Bone pain could get really painful.
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Barb312, I take Lyrica for the nueropathy and it really helps, has your doctor tried you on this?
My bone mets were found when they did a PET Scan for I thought I had cancer in my lungs, which it was but also in spine, right hip, femur and medullary canal of femur, left ribs. I was shocked that it was in all those bones. But I believe in my treatment and so far I they are finally not growing and tumor markers are down for the first time in six months. I can't have radiation but chemo and Faslodex has helped greatly.
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I just had bone progression in the rib area. I am in so much pain I was on faslodex and femera which failed me. I start a/a combo in a few days.
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My first pain was in the shin. I asked my PCP if it might be bone mets and he said they don't usually occur below the knee. But...I found out several months later that I had a large lesion near my SI joint. The sciatic nerve runs along there, and the irritation to the nerve can cause pain all down your leg, including your shin. Don't wait until the pain is severe to get it checked. I waited for about a year, because I didn't think the pain was bad enough to be bone mets. By the time it was discovered (with an X-ray and then pet scan) my hip was ready to fracture. I had to have a hip replacement, part of my femur replaced with bone cement, a rod down into my femur, a metal plate around my femur, and radiation to the hip, femur, and SI joint.
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Spinal met found after tumor marker doubled. Pet/CT scan found met to T 4. Moved me into stage 4.
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I did get rads 25 x to t3,t4,t5 to take care of met and set up margins on cancer.
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Hi. I have extensive bone mets, but no other organs effected as of my resent scan. I am on the Veliparib/Temodar clinical trial. The Temodar dose is 260 mg (wt based) and I am experiencing terrible nausea, and dizziness. Is this unusual? Pear lady, Is this the same dosage your onc prescribed?
My pain just keeps increasing, esp in my pelvis where my largest tumors reside. I am hoping that this means the drugs are working, but I am only guessing. Any one experienced anything similar?0 -
Barb the Curamin with BCM95 is a combination of the Curcumin and boswellia and a couple f other things tha help with the bodies response so all in all it seems t be a good thing. Try it and see how you get on but don't forget, it can take a couple of weeks to get the full benefit from natural medicine.
Lyrica is usually given for epilepsy but has been found to help with the pain of neuropathy and is often prescribed for that. Ask your MO about it.
Wrenwood, as has been stated earlier, bone mets are rarely found below the knee but pain from your back can be referred to the shin. Even if there is no mets to the shin, the pain should be reported to your doc before it gets too bad so if he/she feels that it needs investigating then that can be done in a timely manner.
My mets were found due to excruciating pain.
Love n hugs all. Chrissy0 -
Chrissy,
In the States, Lyrica is heavily advertised as a medication for fibromyalgia, but it is an anti-seizure drug.
Caryn
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Very interesting about the temodar being protective! The article I read about boswellia was that a patient had brain mets and had rads which did not help, so she took B 800 mg 3 times a day. I forget how long but the brain mets resolved. It was at Dana Farber. There was also an article about it being used for glioma multiforme, a primary brain cancer.
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HLB I defintely plan on trying the boswellia in addition to continuing the Temodar. Thank you for the information. How much do you take? I don't think we can ever have too much protection. Interesting that it works for glioblastoma multiform. I knew someone with that and it is very difficult to treat.
Vivian, my dosage is much lower. I didn't realize that there was a clinical trial involving Temodar. I am taking 50mg and have no side effects from it. I take that along with the Afinitor/Aromisin and TDM1. But thankfully I do not have brain mets and Temodar is just being given for protection. My onc seems to think that it also helps other things besides brain mets. Maybe he is basing that on the clinical trial? I am going to ask next time I go. I hope that your pain gets better. I am fortunate in that I really don't have any pain. My thoughts and prayers go out to all.
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Pearl I take 600 because that's what's in one pill but I should probably take more.
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They found my bone mets through a bone scan. My oncologist and my radiation oncologist couldn't believe I had no pain. My radiation oncologist said my spine could collapse and she did some radiation on me. Since then, the mets have spread and I do experience pain, mostly in my back, but sometimes in my left shoulder and arm and my ribs. They have controlled the pain pretty well so far, but it scares me. I've heard it can get pretty bad.
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