Bone Mets Thread
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Whitney - if that pain has been going on for months, I would insist on investigating the area. It can be a number of things other than bone mets. I've had spots pop up on bone scan which turned out to be arthritis on CT scans. Pain is what led me to a stage V dx de novo. It was a dull aching, stabbing burning pain. But then again, I have pain in areas where there are no mets. I know this doesn't make it easier for you, but try not worry until you have testing. I hope you will not join us, but please keep us posted.
Suzy - I'm usually very open and honest about my condition. I know this doesn't work for everyone, but I find it easier that way. But you're right, people are not really aware of what stage V is. I do my best to communicate "stage V awareness". My very small contribution and sometimes people just don't want to understand at which point I just stop wasting my breath.
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Linda brings up a good point, since my dx of bone mets I've been convinced my left hip pain is from mets. I recently learned it's arthritis completely unrelated to cancer, which was good news. Even better news was I had a cortisone injection in my hip which completely resolved the pain.
Amy
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Hooray for arthritis (cancer sure skews thing😜). I had no pain from my bone met, but have terrible arthritis pain in both thumbs. I am just gratefull that it just my aging bones
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AmyQ ditto on cortisone shot in my case left knee. I knew that mbc rarely goes to lower extremities but I was concerned because I had hip replacement on my right hip and I relied on my left leg so when the knee started hurting I worried. Thank goodness is just arthritis.
Aurora
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Txmom my bones did that deep burn after I went on Ibrance and they were healing. It can be SE of healing as well.
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Hi dear friends,
While I was away helping my mother recover from surgery (she had two drains we called Thing 1 and Thing 2) my youngest daughter became engaged. So as they say, life goes on. I'm so happy for her and my future son-in-law. They've been together for 5 years but known each other for 12 so I say it's about time.
Btw, if you get the chance, take a train trip. I enjoyed it immensely. It's easier to enjoy with ones own private room and bathroom, which was a necessity since I'm neutropenic. I scrubbed down all the hard surfaces with Lysol wipes while wearing rubber gloves so felt the room was clean. I brought several movies along but never watched a single one. There was too much scenery to enjoy and even at night, going through little towns or big cities, there was always something to see.
If I were in my twenties and looking for a career, I'd consider working for Amtrak. They have numerous onboard service positions helping their guests get comfortable, making up beds, changing the sleeping room into a sitting room, serving food, etc. plus the opportunity to see the country. They have excellent benefits including health coverage, generous retirement and paid time off. I'm not sure if I'd have made it my long term career, but if I were young and single, it would appeal to me.
Back home and happy to be planning this wedding.
Amy
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Amy, Weddings are so much fun to plan!! Congrats!!! I am envious of you taking that trip! I don't like to do anything alone as I find lately my only relaxation is reading the boards and following politics! I need to stop and smell the roses sometime soon! I am up to the chin in grandchildren so I spend my time with them. That isn't exactly a walk in the park either as they are ages 6 5,4,4,3,2-
Can't wait to hear about the wedding!
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Amy, I am glad you were able to be there to help your mom recover from surgery. I have no doubt that she appreciated having you there. Your train trip sounds wonderful. I am going to talk to my DH about it. Maybe we will look into planning a train trip of our own some day. I, like Carol, don't usually travel alone. I think I would enjoy it, but now just isn't the right time for me. It is so exciting that your daughter is engaged. Has she set a date for the wedding? Does she live near you? I have 6 sons, but no daughters, so I wasn't involved in most of the wedding plans. You will have so much fun. Will you be with your daughter when she picks out a dress? Oh my goodness, I am so excited for you.
Carol, I didn't realize you had so many grandchildren, and they are all six or under. Wow. How many girls and how many boys? Are you lucky enough to see them all often? My grandsons are 14, 12, 11, 11, and 7, and my granddaughters are 10, 9, 1 1/2, and 4 months. Unfortunately, some of them do not live nearby, and I don't see them as often as I would like. Now that my DH is better and out of the hospital, we will be able to visit each other more frequently again. The older kids are involved in all sorts of activities. We have already been to several of their baseball games. We were dressed for the middle of winter. It has been cool and windy here.
Chelle, I looked online at the house you are selling. You did a really nice job staging your home. Have you accepted an offer? Have you stared making decisions about cabinets, flooring, countertops, and all those other fun things for your new home? Is everyone settled and comfortable in the apartment?
Suzy, I know how frustrating it can be when people don't really understand what it means to be stage IV. My brother-in-law just doesn't get it no matter how many times I try to explain. Now I just tell him I am feeling okay and have for tests and treatment regularly. I think he doesn't like to believe the truth. Oh well. Life goes on anyway.
Whitney, How did you make out when you saw your PCP? Do you have to have scans or was your PCP able to determine the reason for your pain? We all hope you don't have mets, but we are here if either way.
Bosco and Patty, I hope you are both recovering and feeling better.
Love and hugs to all of you.
Lynne
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Carol and Lynne,
I started my own wedding planning business 10 years ago when my oldest daughter Jenny got engaged. I sold my business this year and was officially retired until my youngest, Stephanie became engaged. So...my first wedding was Jenny's and my last will be Stephanie's. I still have an unmarried son who will be out of luck - the brides parents will be responsible for planning, so I'll just enjoy the ride.
My daughter lives about 3 miles from me so all the planning will be close - in fact we paid the deposit for a December 10, 2016 wedding. It just so happens that the venue is catered by one of my favorite caterers and the venue is one of my all time favorite locations so everything is coming together nicely. In addition, the caterer/manager of the property gave me one heck of a discount because I refer so much business to them.
As a wedding planner I did not get involved in bridal gown shopping unless I was paid to. I really dislike shopping and the thought of shopping for someone else's dress sounds perfectly awful. I will however, enjoy shopping with my daughter...at least I hope so. Here's a tip for anyone who is or will go through this process, do not bring an entourage along gown shopping. Keep it to the bride and maybe the maid-of-honor, otherwise, too many opinions, too many hurt feelings. This can quickly overwhelm a bride.
Thanks for the good wishes.
Amy
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Amy, How lucky your daughter is to have a wedding planner for a mom! I look forward to hearing all about the wedding gown, your own dress, and all the plans over the next 8 months. After that you can post pictures for us. It is great that you have things started already. Try to remember to take time to rest and relax, too.
Lynne
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Thank you all for your responses to my earlier question. If you can bear with me a little longer, I have another question. In your experiences, how often do bone mets NOT show up on x-rays. I've read that it is common for them not to show up on x-rays, but I'm wondering how true that is. So I have to ask, how were your mets found/diagnosed? And did they show up on x-ray?
THANKS
Whitney
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Hi Whitney- x-Ray found my lytic lesion in my iliac. That is how I found out. You have to have a significant amount of bone loss for alytic lesion to show up on X-ray. I forgot the percentage number but lytic is like a moth eaten hole in your bone. That is the kind of bone cancer I have. Never had pain there.
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Wheria,
My bone met was discovered by accident during an unrelated PET scan. I had no pain. Not sure about x-rays. BTW, if you have mets, you do not have bone cancer. You still have breast cancer with mets to the bone
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Wheria, I found out through a bone scan. I also had a lytic lesion, 6 cm, it fractured my hip. It has since healed up, the bone regenerated and I have no pain.
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Caryn- I have lytic lesions that also are found with multiple myeloma. Lytic is the way the cancer mets present themselves. Mine is ILC breast cancer that spread to my bone. Very slow moving after 18 years. It was found accidentally after I had sciatica. MRI suggested I should have bone scan. Bone scan showed abnormal uptake in an area that was arthritis. RO suggested X-ray and that is when they saw a lytic lesion. Dana Farber does not use pet scans only CT scans and bone scans.
Edited to add: I asked why they do not use pet scans and the answer I got is that they rely on their equipment which is state of the art as pet scans can give false positives.
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Hi Whitney, I did have a chest x-ray that showed sclerotic changes in a vertebrae that was "suspicious" for metastatic disease. I also had a bone density test (dexa-scan) at around the same time that showed the same thing on my L4 vertebrae. My MO ordered bone scan and CT scan for more detailed information. That is how the rest of my mets were found. I would say that x-rays are not the best way to find bone mets.
Lynne
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Lynne, I have 2 grandsons and 4 granddaughters. Yes, we are blessed! Wow you had your own football team!! I have 3 daughters. I'm in Newburyport right now. Cold!! Damp!! Ugh!!
When lytic lesions show Sclertoic rims it means the bones are starting to heal. So I love when I read Sclertoic in my reports. You really have to have quite a bit of bone loss to see a lytic lesion on an X-ray.
Will spring return for us?
Carol
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Whiney, pain in my arm sent me to the doctor. X-ray was normal, MRI picked up that this pain was bone mets
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Whitney - My bone mets were mostly found by CT and bone scan, but some are very visible on x-rays.
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Whitney: I had back pain but nothing that showed up on X-ray. The radiologist did say something to the effect of "you have a lot of arthritis for someone so young" (38). That pain lasted two months then became completely debilitating. That's when I had (well, another two months and six PT session later later)an MRI that showed two fractures. The orthopedic surgeon did a bone biopsy while repairing my spine that showed triple positive breast cancer.
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Hi Whitney,
I had multiple lesions - spine, hips, ribs, etc....and X-Rays over and over because I THOUGHT I had a sports related injury..... and none of them showed the lesions. I think I was probably x-rayed 6 times in 4 months ( apparently I was in denial, and needed a new oncologist, because he KNEW I was having pain and didn't mention that just maybe my cancer had metastized) and I finally ordered myself an MRI..... and there there were - everywhere - including my liver.....
Andrea
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Whitney, I had arm pain which was xrayed & was told it there was nothing there. Had a bone scan a month later & it along with all it's buddies was on the scan. I too complained about the pain in my arm, went to a chiropractor for a year for it, also had back pain. No one told me that pain could be bone mets. Mine were found when I went to my original surgeon for a completely different problem. cheers, dee
hello to everyone else too!
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Whitney: are you asking because you saw your doctor for your spine pain and s/he ordered an X-ray? If so, our stories have probably freaked you out. I had to push for months for an MRI and had no previous history. I was diagnosed de novo. Ask your doctor about other imaging options that would give you a more definitive answer. Thinking of you and please continue to reach out.
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Hi, all! I have been really busy with my sister visiting the past 3 days. Up early this morning to get her to the airport -- she's headed to an oncology meeting in SF -- and she promised to attend all the breast-related sessions and give me a full report, which I'll of course share here.
Until I get caught up here, I'll just jump in to say, congrats to your daughter, Amy! I, too, can't wait to follow her wedding planning journey with you in photos!
And Whitney, I'm in the group that had multiple x-rays for excruciating rib pain and was reassured 3x by Urgent Care docs that it was not mets. It was a CT (ordered by my onc after my CA27-29 came back unexpectedly high) that showed diffuse and extensive lytic lesions. Without knowing your situation, I don't think these experience should necessarily alarm you, but certainly they should encourage you to keep pushing for additional testing and specific explanations if you have pain that doesn't resolve, and especially if it continues to worsen.
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Thank you all fro your responses to my question! I am really grateful. Bluefrog, I was aware before going to see my PCP that x-rays don't always show bone mets, so I went in all fired up, ready to insist on (actually my doc is pretty good about doing tests when I feel I need them) an MRI, or CT, or something beyond x-rays. But before I could even embark on the subject, he said, "Now I'm going to do x-rays today, but regardless of what they show, we're going to want to do more scanning, because sometimes bone mets don't show up on x-rays." So that was great. I did get the results of the x-rays, and nothing was there. Next step MRI next week.
Thank you all again, and I promise I will let you know how things turn out.
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Hmm, still no cat pictures from Terre. She must be very busy. I don't have any cute pictures like hers, but I do have this one of mygrandchildren's cat washing their dog's face. It's a daily ritual that the dog loves. His sister can't be bothered and walks away if the cat tries to wash her face.
Terre, As you can see, we really need your photos.
Lynne
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Hi Lynne,
Cute pic anyway! I got an email from Terre last week, below is a quote. She's just really busy, I was worried about her & missed her KI pics as well. How's your DH doing? and you, of course?? cheers, dee
from Terre...
"I actually have a week off work and am painting the dining room. Had planned on doing two rooms but have been doing car rescue and napping. Have 5 kits at the moment - they go to Kitten Inn tonight. Plus have 2 lots to collect today and another one tomorrow. Lots of driving!
How are you? I promise to check in soon...just don't have the computer set up due to painting and kitten chaos."
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Hi Dee, It's good to hear from you. Thank you for posting the update about Terre. She is a very busy woman. I would never be able to keep up with her. My DH is doing very, very well. Thank you for asking. He is eating everything is sight, trying to gain back 20 of the 50 pounds that he lost. I wish I could eat like that. I am also doing well. I am getting to know my urologist a little better than I would like to. Actually, she is quite nice. We just need to figure things out so I can stop seeing her. How are you feeling? I have been concerned about you.
Deanna, it must have been nice to spend time with your sister and sad to see her leave. I appreciate all the information you pass on to us from your sister. I like to have as many facts as I can. It might not always change things, but being armed with knowledge is a good thing.
Have a good night, everyone.
Lynne
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Hi everyone! I've been away from the thread for the past week because I've been preparing for my daughter's first communion, her last Brownie meeting and softball practices. Being busy is helping with my anxiety. I started radiation on my left upper femur and hip. Met with my new RO, who was amazing. I was at the office for my initial visit for almost 5 hours. Very in depth exam by the nurse and RO. Reviewed my bone scan and CT with me side by side, and began my mapping. I have completed 5 of the 10 treatments already. I'm having some aches in that area, but I'm choosing to believe it's the cancer dying!
I still have pain in my right side, which prompted this whole new adventure, but nothing is showing on the CT. RO thinks it may be a nerve affected by my T8 lesion. I will be radiating that next. I started round 2 of Ibrance and got my Xgeva shot last week. So far, blood counts are ok. I'm waiting for my last TM results. I was a little upset because my mapping CT showed sclerotic lesions on T3 and L5 that weren't there from my March scan. I guess I thought Ibrance and Letrazole would stop it in its tracks. Trying not to worry too much about that.
Glad to read some positive posts, and sad to see newbies like me joining so often. Hoping everyone has a great night!
Deb
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Hi to all
I am still in a fog but thinking of you all. I am behind in reading but will go back to catch up.
Thinking of you all and sending peace
Mary
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