Bone Mets Thread
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Z
I hope you are back soon, you have mainly been my inspiration to move which has really helped me. It's your turn to start moving agin if only a little, I know it helps. My Tmwere 15 and echo was god just don't understand why my mo doesn't like to do scans? Hope you are better soon💕
Paula.
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Z~I am on it! I will text her a screen shot of your comments ! I spoke with her Wednesday and you're right she is in a dip. She's a sweet sweet woman. You can count on my prayers. We all struggle in our own way with this beast. Hugs to You As well Z, hoping you're healing from your bike incident. ~M~
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These "dips" that we all experience are horrid Gracie we are all here for you . With love and caring advice as best we can😊 Don't ever loose hope I know that's sometimes easier said than done. But the right words and information can totally make a huge difference on how we feel and hope I believe gives us strength to fight on. Big hug from Canada ( I don't know about the rest of you but I really wish I could physically hug all of you it's like an ache) who ever knew I could feel this way about people I have never met in person. Stay strong
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I need some advice, please. I found my recurrence by feeling a swollen supraclavicular lymph node. A biopsy confirmed it was a recurrence and a PET confirmed that it's throughout many lymph nodes and there's a met on my spine. My tumor markers, labs, mammogram, everything, shows normal except for that PET, so I'm not sure how to monitor the effectiveness of my treatment. Right now I'm on a targeted therapy, kisqali, along with exemestane and an injection of xgeva every 4 months. My lower right back has been hurting all week but today it's been unrelieved. This is new. Advil didn't help, so I took a Percocet, and it didn't help either. It hurts in the lower right side of my back bu my right leg feels "heavy" and uncomfortable, too. Could this really be cancer related? Such sudden and unrelenting pain?
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Sending prayers and hugs to Gracie and Patty and all of us who are struggling. Gentle hugs.
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Swess - how long since your last PET? How long have you been on kisquali? Where is the met on your spine. The more detail you put in your signature line, the more context we have to respond and the better the response you will get. I will say that the only diagnostic I really believe at this point is a scan and, for determining progression I want two scans some time apart.
Lots of things cause back pain, including stress. The only way to rule out cancer is a scan. The good news is that radiation can effectively treat bone mets.
>Z<
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Swess, I had something similar to that on my right side, too. It was nerve compression caused by the mets in my lumbar spine. I had rads to that area and it subsided. But it could be something else as Z suggested. The best way to confirm it with a scan. Everyone is different. Get it checked out if it doesn't subside on its own.
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I thought this would hit home with everyone. Sorry if I have cross posted. It was that heavy to me. Hugs ~M~0 -
Thanks Z and lita for responding. I only recently found the lymph node and had the scan, back in May. I've been on the kisqali for almost 5 weeks...3 on, 1 off, almost 1 full week back on. My spinal met was at L2. I'm just worried and don't know what to do. My next appt is on the 31.0
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Congratulations on 8 years, Linda! That's awesome. Thanks Z and Micmel for the word on Gracie; I've been wondering about her since she hasn't been on in a while. Thinking of her and sending positive energy. The same goes for you Patty. Waving hi. Hoping for good scan and treatment results for you all this next week and beyond. Hugs.
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I had breast. Cancer in 2008 chemo. Rad etc. My back was hurting so I ended up with an MRI if my spine and pelvis my onc and the radiologists made a huge mistake cause they thought the bone lesions were arthritic changes. One year later I moved out of town and my new primary didn't like the way the lesions looked. He sent me to an onc who agreed that the lesions didn't look good and he ordered a bone biopsy. I wouldn't just go by the MRI or the x-rays. I would get a bone biopsy. Sometimes the breast cancer can change from Her 2 neg to Her 2 + and vice versa. So you need to 1. Make sure it's cancer and 2. Stage it. I hope this helps. You sound anxious, knowing is better than not knowing. When you know it is you who have control. They are finding new immunity drugs every year. I recommend you read the best book I have found called Radical Remission by Tyler. I think it will be enormously helpful to you gaining that control. ( oh and I don't know the author personally or get anything out of recommending it). A friend in CA told me about it. Best wishes to you. Debora
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Finally UW-Madison is holding a study of why some woman live so long with MBC. What is different about them and the rest of us. So interesting I suck at tech stuff wanted to share here from my Facebook page and couldn't do it. Anyway some of these woman have live forty years with breast cancer. You hear me forty years😳.
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Wendy....I may be part of the study. I am in the process of speaking to Dr. Burkard this week. My sister had mets and lived 10 years. My mom died of breast cancer as well but was never diagnosed with mets although that was so many years ago and not much was done back then. My mom and sister have their DNA banked and I'm willing to allow UW some access. ANYTHING I can do to further his research I will. I'm so anxious to speak with him. I had my second opinion at UW-Madison.
Struggling with nausea, and pain but trying to work out a strict pain med schedule. Went to a wedding yesterday and the bride gave me a rose during the ceremony because she knew what I was going through. I have some amazing supportive people in my corner and then all of you here. I'm so lucky. Only 7 more rad sessions! Yikes the burning effects of rads are already here.
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Very interesting UW study, I'm sure we'll all be checking on that one for any info to better our odds. Thanks Lindalou for your participation
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I read about the UW Madison study today on FB, too, Wendy: http://bit.ly/2uVUYwm; very encouraging. As I read it, I wondered if you might be a candidate, Linda. That would be awesome if you can join. Keep us posted.
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Read the article...Oh, if this could be all of us...with a half-way decent quality of life, of course.
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Hi everyone, I haven't checked in for a while and cannot believe how much I have missed. I will try to catch up.DH and I are in Myrtle Beach, SC for a week. We both love the ocean, and it is nice to be able to actually go into the water without having our feet go numb from the cold water we have up in New Hampshire and Maine.
I only have a minute, but I want to give you a big WOOHOO to you, Lindalou! Eight years? How wonderful to hear that. I hope you have another 8 years, then another 8 and another 8. I think it could be incredibly informative and beneficial for UW to include your family's DNA in their research study. Having the DNA from all three of you - you, your mother, and your sister could open up new avenues of knowledge needed to solve the puzzle of MBC. I hope that you get pain relief from the rads without many SEs.
I wish happy pain free days to all.
Hugs from, Lynne
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I'm here. Z and Mel, thanks for your concern. Thanks to everybody else. I just have to figure out why I'm fighting because I just don't feel like I have a life and feel like I'm just sitting in this house waiting to die. That's as frank as I can be. I have no life. So why fight
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Gracie~ for your family honey. Because you're amazing. I'm not going to say it's easy, by any means but you have a lot of people that care about you. You're very strong, although I understand the feeling of hopelessness because I have my days of those as well. But that's where you and Diana come in. We understand, we are living through the same fears and feelings, but just in different ways and different places. I am keeping you very close in prayer. Everyday ~M~
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Big hugs Mel!!! You are such a good person! You know, my kids will be ok. If something happened to me, yes they would grieve, but we all lose our parents and life goes on. But love ya for that!
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Gracie -
I have a tremendous amount of respect for people who are ready to check out, but I am very very concerned about people who get to that decision after the sudden onset of pain. Observing the effects of pain, I think it is the closest thing to the Devil himself. Pain will make you see everything differently ... your relationships, your purpose. Without pain, we can see our purpose and the meaning of things in the simplest things ... a smile or a flower and we can feel the love of our family no matter how far away. With pain ... the people we love can be right by our side working tirelessly for our well-being and the pain will make us question their intentions.
There are a lot of women here on this forum who would like to see you keep going and who would like to hear from you good or bad. I am very concerned, but thrilled to hear things are a bit better this weekend.
So glad you checked in.
>Z<
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Gracie -
I have a tremendous amount of respect for people who are ready to check out, but I am very very concerned about people who get to that decision after the sudden onset of pain. Observing the effects of pain, I think it is the closest thing to the Devil himself. Pain will make you see everything differently ... your relationships, your purpose. Without pain, we can see our purpose and the meaning of things in the simplest things ... a smile or a flower and we can feel the love of our family no matter how far away. With pain ... the people we love can be right by our side working tirelessly for our well-being and the pain will make us question their intentions.
There are a lot of women here on this forum who would like to see you keep going and who would like to hear from you good or bad. I am very concerned, but thrilled to hear things are a bit better this weekend.
So glad you checked in.
>Z<
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Gracie, do you live in a "green" state? Opioids do absolutely NOTHING for my deep bone pain and my nerve pain.
I take high CBD strain MMJ that is very low in THC so it doesn't make me high. It helps with pain, anxiety and insomnia. And if my Zofran doesn't kick my nausea back, I vape a small amount of cherry pie strain or blackberry kush strain.
As Z has said, quality of life and pain control are EVERYTHING.
Non green states can get access to marinol, which is legal, synthetic cannabis, and it works for some.
Keeping you in prayer.
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Gracie, I'm sorry to hear that you're not feeling it lately, especially being stable last month unless I missed an update (so sorry if I did). I hope very much that you are simply in a funk at the moment and will soon take pleasure in the things you enjoy.
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Gracie I'm so glad you checked in. Nothing is permanent what you're feeling now will change also. I'm sorry if you're in pain but I have to agree with Zita I have no pain and I have mets pretty much everywhere CBD has taken my pain totally away for now anyway. The THC helps me with anxiety and appetite and I laugh a lot😊. Please never give up for yourself and all those moments that may come.
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'Gracie you've been there for others. You could get through this and then see things clearer. Zar your post was beautiful. Lita has been through so much pain, she knows it.
Lindalou, having a great team I think it's def half the battle. It means they care, and are on top of things. Glad you are being taken care of. How helpful it is for everyone for you to be part of the study! No BRCA, PALB…in the family? If so, then what gives?
Anita it's so special of you to offer your help. It's extremely frustrating being able to do something on Monday and then Tuesday is not even a considetation. That's the way I see it with Dani. Well, someone needs to do the books…
Jen hold on to stable scans. How is your summer with your little one, so glad you had your vacay!
Kaption just saw that you have progression, where is it at? The bones? So many at the liver thread are starting on Abraxane, seems to be a thing.
Paula what do you mean she does not like to do scans?When was the last time you had it done?
Swess you definitely have to know if it's not a compression, you leg feeling heavy could be a sign of a nerve pressing on It, and sometimes this need to be dealt asap. Check it out.
Lynne good for you to be able to take a break!
Wendy wow I see the change in you, you have come a long way, now you are helping others. You are so strong. Good for you.
LindaE how are you coming along with your pain? So glad your sister is with you!!
Waiting very very anxiously for Dani's scan results tomorrow!
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Good Luck Dani- wow, scans already!! She really deserves a break- holding our breath here
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Gracie, I think your thoughts have all been our thoughts at various times. Please know that we care and are here for you.
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Gracie. We all get into a funk sometimes. Lita and Wendy's advise could help. I hope you look into what they said
Momall. So hoping danis scabs show either stability or better yet improvement!!!
Linda being part of that study is exciting. It could really help so many!
Lynne so glad you got a vacation. We all need that sometimes!
Babs
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Gracie,
You've been on my mind all night. You often have no idea the impact you have on others' lives. We, with this sometimes isolating disease, need to remember to get outside- look at this amazing Earth and embrace the essence of life.
I've had the very thoughts you are having. What's the point? I'm not contributing. But, you don't know. There are probably others who look to you for strength, wisdom, spunk, and kindness.
Please consider asking your MO for a counselor and maybe medication. Hugs and prayers!
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