Bone Mets Thread
Comments
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MacyHen,
Will your insurance pay for a second opinion? Would that give you more peace of mind? I know its hard to do and more work and appts but you need to feel confident in your treatment plan. I'm sure there's a good reason for the Taxol. maybe ask for another office visit for more explanation. Ask them about allergic reactions to Taxol too. I hate to add to your concern but taxol put me in the ER after the first time, and then after the second treatment ER again with a hospital stay. I didn't get to finish my last 2 treatments. Between the ACT and the Taxol though my tumor was reduced in half....then we did the surgery. I was amazed. I know we are all different and all have different plans for our cancers. Just ask all the questions from them till you feel satisfied and confident. Its important that you believe in what they are doing with all your heart and soul.
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RangerMom, my insurance would cover a second opinion, but I think I am going to trust what my onc is Doing is the best for me at this time. My dd is a a RN and has been in on every thing. It's just not that clear to me, even though they explain it to me over and over again. This Bc is so foreign to me. I do a lot of reading on here and I get more information that I can understand from you guys. My first taxol chemo will be Monday near the hospital, because of the possible side effects and allergic reaction. Thanks for your advise and understanding.
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Folks,
I wrote last week so frustrated because of this debilitating back pain. I finally have good news and was spurred to write when I read that LizLemmon also experienced a Tamoxifen flare. A flare of the lytic lesions in L4/S1 really made things miserable for me. The pain, by this weekend, had once again become so unbearable that I just couldn't take it much longer.
My oncologist referred me to a specialist in pain management and, for the first time since October, the clouds have parted on my future. FINALLY! I learned that while the lytic lesions kick started this misery, the pain I am having right now is likely as result of the vertebral facets--now arthritic and bearing the weight that the damged bone can no longer do. I have lidocaine patches and Lyrica for the neuropathy--along with Oxycodone--and will likely have a nerve block once the MRI is done. Finally, a plan for pain! Between the narcotics, TFK, and Xgeva I'm turning into a Superfund site, but as suecolo mentioned: anti-hormonals are powerful drugs. The primary breast tumor, lung lesions, lymph nodes, and lytic lesions are all receeding as a result of Tamoxifen. And even though I call it Tamoxifuck (TFK for short) and I will NEVER forgive it for causing the most painful tumor flare ever, but I am grateful that it's working.
I have also followed Elisabeth's posts and am so sorry that mets has been confimed. Darned sorry to hear it.
Thanks, everyone, for your support during this painful time. It sure does mean a lot and it getting me through it all! You all have my support and love unconditionally and without measure!
Scorchy
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Oh Scorchy I'm so glad that you have some answers for your and a plan for the pain! Doing the dance here!.......yahooooo!
Love n hugs. Chrissy0 -
Scorchy, you made me laugh with the Superfund comment! Yep, that's exactly how I feel. It's a wonder our pee doesn't glow in the dark, huh?
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Great news, Scorchy! Also had a painful tumor flare from chemo which thankfully didn't last very long. Hope TFK beats back the mets to oblivion.
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So glad you have a pain plan Scorchy! Getting our pain under control definitely changes our outlook and ability to face every day.
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Scorchy,
My arthritis Dr gave me Lidocaine patches when my mid back became so painful back in March, Turned out it was bone mets. I am glad you found relief as some many seem to have DRs that treat the disease but don't want to hear about your pain let alone help you find relief.
Pain management has to be part of the protocol for any living with cancer.
Question...to anyone out there, My bone mets appear to be taking up residence in areas that I have had previous injury (bruised bone) or arthritis. Has anyone else seen this pattern?
Have a great pain free Friday,
Tish
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I was dx'd with Stage IV bone mets from the get go. Yesterday I went to the onc and he could feel the tumor. (a year ago it was negative on Mammo. and found only on MRI. Onc says it would do no good to take it out. Anyone experience something like this? I have 6 lesions on ribs and spine that they say are in regression. I will have another MRI in Jan. I do not care for my onc as I am just another number to him. I am one hour from Moffitt Cancer center and Shands in Gainsville, FL. I am thinking about MD Anderson in Houston. Any thoughts from anyone. You are so much more helpful than my onc. I guess the government is making some new rules and he had a pc and messed with it during my time with him. Three office girls assisting him and he is the one making my decisions. He just reads my records and doesn't answer any of my questions. 2013 I am out of there. Just don't know where to go. Barb in FL
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Barb312,
If your primary tumor is in the breast, have a look at at this: http://www.ncbi.nlm.nih.gov/pubmed/12407345
Excision of the primary tumor does lead to improved survival!
Jennifer
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Hi ladies,
I have noticed on several posts that bone mets are often mistaken for arthritis or degenerative changes and vice versa and that many women are diagnosed without an actual biopsy. They don't seem to do PET scans at the cancer center that my mom goes to and we are in the process of trying to figure out if the lytic bone lesions found on her CT (and possibly bone scan?) are mets or something else. Still no appt. for a bone biopsy and it's been a month.
Can arthritis actually even cause lytic lesions or is this just wishful thinking on my part?
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CanadaGirl, I've never heard of arthritis causing lytic lesions but I'm happy to do some research for you although I think it maybe a useless search. I know that you want the best for your mom but sometimes we just have to accept.
Love n hugs. Chrissy0 -
Sure enough, TMs continue to go down. Not as fast as they went up, but the trend is going the right way.
But my back pain is getting worse. It's across the pelvic area (whatever those flat bones are called) on both side. When I get up in the morning I have to take 15 mg of methadone and wait an hour before I can think about moving around much. Even getting up for a cup of coffee is painful.
So the onc is scheduling me for an MRI to see if there are any fractures from the lesions. My question is whether an MRI shows lesions or not. The onc is happy with the TMs going down and feels that we have the cancer under control. But the pain has gotten worse and it doesn't feel like I'm getting better. Could it be the Femara? The other thing he did was give me a script for Voltaren Gel that I'm supposed to put on the pelvic area to supplement the methadone.
Any thoughts?
Barb312 -
If MD Anderson is an option then I think it would be a very good choice. When it comes to BC they seem to be a source of lots of good studies and information. Kind of like the difference between getting lunch from the shelf at a gas station store (your current onc) and being served at a four star restaurant.
Macyhen111 -
I'm also wondering how estrogen positive you are. Getting Taxol might be a good idea if you are not strongly positive. But after the Taxol then you could go on an AI. Personally, I didn't have any problem with allergic reactions to the Taxol. But I hated the steroids. Although the steroids got better as time went on. I also asked them to switch me from getting a Benadryl infusion to the oral pills. The infusion made my head swim and my anxiety level skyrocket.
Sorchy-
Glad you have a pain plan! I wish my onc had given me lidocaine patches instead of this Voltaren. I could use something to get the pain under control in the morning until the methadone kicks in.0 -
Hi everyone, I am new to this thread but no to BCO. I also have bones mets along with liver and lung mets. I have not read any of the posts except those on this page.
Barb312 - have you considered Duke Cancer Center in Durham, North Carolina. They also have a big cancer research center and provide state of the art compassionate care. This is from several of my friends that go there. They all loudly sing the praises of DCC. It might be worth checking out if you are not going to get your treatment in FL. I go to The Cancer Center of North Carolina in Cary, NC and I absolutely love my onco and all the staff there. They are always so helpful, caring and accomodate every need. They really try to make you feel like you are the most improtant patient they have.
Sorchy - Glad you have a plan for your pain management. I know how bad the pain can be as I have extensive bone mets. I use a fentanyl pain patch (50 mcg/hr) that I change every 48 hours.
Hope everyone has a great day with good news and a Merry Christmas. AJ
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God Bless those children and their families in Con. My God how horrible!!!
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Tish,
When I learned that I had bone mets in L4 and S1 I was hardly fazed. I was hit by a car some 30 years ago and had a herniated disk of L4-L5. Ever since that area was the weak spart in my body. When I came down with a cold, the lower back hurt. When I had pneumonia, the ower back hurt. If I had undue stress, lower back hurt again. When I learned that bone mets was in L4 I just figured--there's the weak spot! I even mentioned it to the suirgeon who showed me where it was.
Maybe it's coincidental, but I'd be interested in reading more replies to this too.
Thanks for the good wishes, everyone! Righ backatcha!
Scorch
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Thank you all, again. Such a wealth of generosity and information.
Scorchy, I follow and love your blog and am so happy that you have finally gotten some definitive pain relief.
My PCP today upped my frequency of hydrocodone and flexeril and I am relieved to be able to take them more in line with the pain rather than just at night.
Barb312, some of my care has been at MDA in Houston and have found the vast majority of the caring staff and its reputation makes the trip worthwhile. I did not have a great experience with my assigned MO there (only saw her once), and have chosen to have that part of my care done at our local cancer center...which is also a lot more convenient. That said, I wouldn't hesitate to see a MO there if I felt it necessary and would simply ask my patient care advocate for a new MO.
AnacortesGirl, a MRI should show mets lesions. After my bone scan showed the area, a MRI with contrast was ordered for my lumbar area which showed the mets very clearly, along with an hemangioma a few vertebrae down. The CT of the area seemed to do a good job of showing degenerative areas, as well.
Regarding a biopsy, my impression from my current MO was that he tries to avoid invasive procedures until/unless there is a need. With only one mets area and a highly positive ER/PR primary, his inclination is to not do one right now. For now, that's fine with me.
I am sure we are all saddened and horrified at the news from Connecticut. For me, it creates a time of reflection and perspective.
Sending love, Light, and warm hugs to all.0 -
Hi All, I wanted to add to more confusion regarding bone biopsies. I had one of my T7 via guided CT and it came back with no cancer cells. However, 6 mos latter the bone scan showed a new lesion on my T9 and right hip. So bone biopsies are not the end all are not always accurate I am living proof.
Good news, my CT scan this Friday showed no evidence of lung mets. However, becuse of the above, I'm still doubtful since my lungs are not back to normal after getting over pneumonia. I guess I need to just "claim it" as my sister says and think positive.
The famailies of and children are in my prayers for God's loving light to surround and heal.
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Also, one more thing for Canadagirl - I also have rheumatoid arthritis and the bone scan shows definitely the arthritic areas versus the cancer areas. I forget how they describe it but it (cancer) must light up different. And yes, sclerotic lesions on the spine can be from old spinal injury too. The bone scan will be definitive, I'm sure.
Welcome Elimiso - you are 2 and a half years I see from your dx. You are an incredbly strong woman and I'm sure been through hell and back. What is working for you, what keeps you strong. Can you share with us newbies your words of wisdom.
Chrissy B - you are amazing!
thanks!
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Thanks RangerMom. I am wondering if anything is ever known for certain because the onc wants the bone biopsy to confirm mets even though he's got the CT and bone scan results. I almost wish they'd just get her back on Femara and offer rads or a bone strengthener or whatever it is that will help with the shoulder pain while they try to get this figured out. It's hard for her to keep her spirits up with all this uncertainty as it is let alone dealing with pain at the same time.
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Canadagirl, my bone and CT scans showed my 2 lytic lesions in my spine (bone mets) and my osteoarthritis which was described as "facet arthrosis" in my reports. My MO chose to confirm the mets and more importantly the pathology with a bone biopsy (just took sample from one lesion). The biopsy confirmed the bone mets and showed a slightly changed pathology (triple positive originally to ER+, PR- and HER2+). Later he told me that it was obvious on the scan that this was mets, but that he wanted to confirm the pathology because sometimes it changes and that can affect your treatment options.
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Canadagirl, my bone and CT scans showed my 2 lytic lesions in my spine (bone mets) and my osteoarthritis which was described as "facet arthrosis" in my reports. My MO chose to confirm the mets and more importantly the pathology with a bone biopsy (just took sample from one lesion). The biopsy confirmed the bone mets and showed a slightly changed pathology (triple positive originally to ER+, PR- and HER2+). Later he told me that it was obvious on the scan that this was mets, but that he wanted to confirm the pathology because sometimes it changes and that can affect your treatment options.
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Thank you for sharing Swimmon3. Her onc has seen her xrays, CT, ultrasound, lymph node biopsy and bone scan and still wants to do the bone biopsy "to figure out what caused the lesions on the bones" (his words). I figured the biopsy would just be to confirm the type of cancer/pathology and rule out a new cancer as myeloma and lymphoma were also possibilities according to the CT report, but he still seems uncertain as to whether or not it is mets even after all of that.
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I finished my first round of chemo, Yahoo I am so happy to now begin my fight with this horrible disease. So far no side effects at all. Hope it stays that way throughout my treatments.
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Macy's, what chemo are you doing? So glad that you are SE free and I hope it stays that way too. Doesn't it make you feel better when you finally feel like you are doing something to kick cancer to the curb.
Love n hugs. Chrissy0 -
Hi Chrissy, I am doing Taxol. I feel so happy to finally began this battle with this awful disease, even if I get some bad side effects its ok Cus I know the chemo is helping me win this fight. I am a Survivor and I Will Beat This Cancer Crap !!!! Nothing but love and respect for you and all the Survivors on this board...
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Sorry Macy, if I had looked at your bio line I would have known that..........sometimes I wonder about myself......lol.
Watch for some neuropathy in your hands and feet as well as hair loss. These seem to be the worst of the SE but there is a drug called Lyrica that can be given to help the neuropathy..........the bad of that is you have to get it before they will give the drug. Hope it doesn't show up for you..
Love n hugs. Chrissy0 -
Yay Macy!
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The first one was the worst for me. Worried about everything. Taxol was also my first chemo. Glad you got it behind you and it went well!
Are these weekly? Or every 3 weeks?0 -
They are weekly ana, but my next one wont be until 12/31/12 due to the holidays. Still feeling pretty good no bad se 's yet. Still praying and believing that they won't,get to bad. I have plenty of scarves and I will pick up a wig when I get to Calif. Slept really good last night, taking zofran and phenegan around the clock, oh yeah and my trusted friend clonipin.
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