Bone Mets Thread
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And to think that I almost went in and changed OP to the double. Thank God I stuck with my first choice. I went home following day. Pain minimal, not happy about the fluid bag but it comes out tomorrow,I hope. I know I was up and riding my bike five days after the surgery because I felt so good and energized. It was really evident at that moment just how much effect cancer had on me. Unfortunately,
krayzwolf0 -
Great news Krazywolf! I'm glad everything went well. :-D
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Wooohoooo, krayzwolf! That's a reason to celebrate!!
They used to check my blood for calcium regularly and it was fine. I guess eating cheese and drinking milk was enough for me (I was told it would be). I love cheese and am lucky not to be lactose intolerant. As for size, I was once told the PET could pick up a 4 mm lesion or bigger, so roughly 4 million cells minimum. There are newer machines since then, maybe even more sensitive.
Naniam, is it possible they want to radiate because they believe you are stable or even if you are stable? In my case I was NED when they began 28 zapping sessions.
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unfortunately,I felt so good that I rode for three days in a row. Bad decision. I guess I strained my muscle too much usage too soon. I hurt worse a week later than I did the days immediately after surgery. So I've been sure to relax last few days. Prayers, love and hope to you all. Let ya know what todayspost OP visit brings me next. Peace out
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Good Morning,
My medical case is going before a thoracic review panel today to determine whether I would be a candidate for a rib removal to try and get rid of the current hot spot. My question is have any of you ladies had a rib removed or know anyone who has?
krazywolf, glad to hear your surgery is over and negative margins and negative biopsy are wonderful words to hear!
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Do any of you know somebody who wasdiagnosed at stage four, with no mistake, and is now considered 'cured'? And all this bone talk is beginning to freak me out. I've got many of the same ailments and bone pains as many of you but they say its only a small spot in one place on my sternum. Which they say is not typical, as it usually spreads all thru out the bones and or organs. I do have several large areas that show on scans and mris, that light up tho not BRITE white they none the less do show. In told arthritis rapid and early, to my hips, pelvic, tailbone, lower spine, both shoulders and neck. Its it possible that it its Mets and not cancer or a combo of both? Our did going thru chemo open up the door to old age getting me early?
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Teacher 911, I have heard of it but do not know details. I do know the person seemed to get along normal and never complained of any problems because of it. Lost contact a few years ago and can't locate him, which I feel the worst is likely. But he was happy and lived a great life. He'd been battling a major mass in his lower lung which went to his ribs. I saw him five years after his treatments and surgery. Never skipped a beat. Good luck hun.
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Folks,
I've been reading some of your comments about rads to bone. I have lesions in L4 and S1. A brief flare as the result of Tamoxifen kick started an array of back problems--mainly caused by arthritis. Thing is, pain management actually helped me a great deal with the arthritis and all of that. But now the pain is super localized--right where that L4 lesion is.
My MO asked me about rads and suggested that I could see a radiation oncologist to address the pain with rads. My question is this: when an area like this is treated with rads (the cancer has pretty much gone through 3/4 of L4), if pain returns can it be treated again? And how often?
Of course these are questions I'll ask my pain management doc on Friday, but I thought I'd throw it out there and benefit from your collected wisdom as well.
Scorchy
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I am venturing onto this thread because I unfortunately was just diagnosed with mets to my femur. It is a small spot randomly found after I got an Xray of the hip for a kick boxing injury. I am shocked and devasted, as everyone thought my prognosis was so great. You women are an inspiration, and I am learning so much reading through this. I hope I have the strength to fight this to have many more years to be with my young children.
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Scorchy, I don't know the answer to your question for sure but am going to venture an opinion of probably not. The only exception I am aware of is if they don't give that area the full lifetime dose and that is only a question your radiation oncologist can answer. I am getting rads to my L1 starting the 19th and my RO is hoping to do 3 dose dense tx instead of the usual 10. I guess it's a relatively new option and, like you, my lesion has pretty much taken over the entire interior of the vertebrae. They did all the modeling yesterday, as well as taking new images for building a 3D model. I will ask him about further radiation options on this area but would be very interested in hearing what answer you get, too!
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Scorchy - Have you had an mri...checked for a fracture? My T9 was fractured due to the lesion. They decided on a Kyphoplasty and it seems to have strengthend area bc i am not having pain. They are now radiating my T9.
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Hi CJRT,
My bone met to the femur was discovered accidentally too. I was staged IIB after my bmx and during an unrelated PET two months later, a spot was seen. Biopsy confirmed the met. That was 16 months ago and I have been NED since then on Arimidex and Aredia after rads x15 to the area. I know this is hard to take in at first but there is lots of hope. Many of us lead (nearly) normal lives. Let me know if I can help.
Caryn0 -
Krazy, I think if they said it was arthritis you can be pretty sure it is just arthritis and not more cancer. My bone scan had both as well and the doc showed it to me and pointed out the mets and I was like omg what is all that other stuff everywhere! It was showing up but not as dark and obvious as the mets. Mostly on the shoulders and knees.
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Caryn, when you had rads to the one met was that due to pain or were they going for a cure and that's why they radiated it? I was concerned at first that I was not getting rads, (4 spots) then I decided it was better not to in case I needed it later for pain, now I'm back to wondering again if I shouldn't get rads to those areas. Esp since I have looked into the place in Gainsville that is treating people with intent to cure when they have 10 or less lesions. I just noticed HeidiHill had rads to a met after being brought to NED. Yes it might be unrealistic but wth. This place and the doctor doing it just sounds so promising. I'm getting a little jealous of your rads girls!
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CJ, I know just how you feel! I was dx'd with spinal mets after 8 years of thinking I was DONE with cancer. It bites the big one. That was in july and I'm doing much better. You do get over that intial shock.
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exbrnxgrl - thank you so much! i might take you up on your offer to help me figure things out or know the questions to ask. your story makes me feel so much better.
HLB - Thank you so much for sharing your experience. i hate that others are going through it, but it is also comforting to know other people are handling it. hugs~
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I have certainly hesistated to get so much radiation this early in the game. Think most of us that had a lumpectomy and then 35 radiation treatments and this week met a prostate cancer patient that is currently getting 42. My stepdad had esophageal cancer and I do know they told him they had given him all that they could. Sure we all feel it depends on the stength of the treatments, not just the number.
I have lots of athritis and degenerative disc disease and on my scans they have been able to tell the difference. Have a cervical vertebra/disc and a lumbar one that is now filled with cancer.
I received the first 10 treatments to the left femur/hip because of pain. After the rod placement they wanted me to have the surgery to knock back the cancer in the femur/hip. My right one was not hurting but they felt that with the cancer there and any additional growth, my right femur/hip needed radiation to prevent/slow down the need for rod placement in that femur. Not sure why you would give radiation if you are NED or if we are stable, not having pain. That is really confusing to me. We are all seem to be hesistant to use the radiation treatments until we have pain.
Carynn, have heard that the kyphoplasty gives great relief and people resume normal activity. That certainly seems to be true in your case. Is the rest of your spine doing ok?
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Ok, what is going on? CRJT just posted but it is showing up under my name, just prior to the post that I DID make. Have seen the same thing in others post tonight. Is it here or is there something wrong with my computer; it is acting up also.
Anyone else having this problem???
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I see CJRTs post from 49 min ago, the your two posts. No probs here but I am using my phone. The reason I ask about rads is if it gives the cancer a better chance at not coming back. I'm just excited about this place in FL.
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Every other post is showing up blue on this thread. I've never seen that before so maybe something weird is going on.
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Yup something weird happening here too! The posts take up the whole width of the page and the names are all over the place. Maybe we need to let the Mods know.
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Then it is really true, my computer is possessed! I see Caryn picture/info but then the post isn't from her but says it is j1e1n1a and then Caryn post is next under someone elses's name. This computer has always had a mind of its own but nothing like this before. It is time to call it an evening for sure.
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I've let the Mods know that we have gremlins....lol. Hopefully it won't take long to get it back to normal.
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HLB- what place in Florida? Would love to look into it.
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Yes, the appearance of this page is definitely off kilter(using an iPad), hopefully I'm responding to the right people.
HLB,
I had no pain from the met to my femur. I'm not sure cure is the word I'd use with respect to why I got rads. I'd say we were going for the kill! My last two PET's show the spot to be necrotic so mission accomplished. While this little met was zapped, I believe there are cancer cells lurking somewhere in my body. My goal is to keep them at bay as long as possible.
Naniam,
Due to the wonky appearance of this thread, I think you got me confused with someone else. I have no problems my spine or any pain issues at all.
Caryn0 -
Wow, I just checked a few other threads and they look just fine. This seems to be the only one to have gone berserk.
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Hi, I'm new here. I was originally diagnosed with stage 3A IDC in March 2005. I sailed through treatment and felt great until my oopherectomy in June 2012. My oncologist changed me from tamoxifen to Aromasin, then Arimadex, then Femara. I felt awful on those drugs, as if I were going through chemo again. So I was put back on tamoxifen in November. I was diagnosed with multiple bone mets in December. I receive the Xgeva shot monthly. I'm frustrated because I went from being a very active person to laying on the couch most of the time. My hips and pelvis are causing me quite a bit of pain. I'm a busy wife and mother and I'm sad that this is happening. I'm just looking to connect with others dealing with similar issues.
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We've fixed the odd formatting, thanks for letting us know! If ever you see something like that funky misalignment, just send us a private message so we'll see your alert without delay.
• Your Mods
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Susan, I am TN with bone mets. I am 49 in March. I was wondering how old you are. You look so young and beautiful. I don't have hormonal drugs, I know that you have drug options. Are you married? I hope you have support. Hugs, Renae
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Susan, Sorry to welcome you to our group. You will find lots of support and great info with this group.
Are you still on tamoxifen or did you start something new once the mets were found? If your mets are really painful maybe you can get radiation? Mine hurt at night but are not too bad during the day. My drs have told me often that they can radiate when/if they become too ppainful. You might also try different pain meds.
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