Bone Mets Thread
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Shanagirl, it could also be a fracture, which of course none of us want, but definitely get it checked out. When my vertebrae fractured, it was painful.
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I would like to know from those of you who were on Verzenio for bone Mets when you had progression what was the next medication you were put on.
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@threetree Like you if I sit to long i get the stiffness and sharp pain. This seems so different for me these last 2 weeks. I cannot put any weight on my right hip at all to lift that leg one over the other up the stairs it’s just so painful. I cannot put any now only go on sep at a time. My husband is so optimistic and thinks tat once I have the surgery in my cervical bone in my neck the hip issue will resolve itself. I hope so… I want to talk more with the neurosurgeon I met with this week. I was so overwhelmed at the thought of this surgery, I didn’t ask all the questions. I wanted to ask him. I feel like a totally depressed mess lately. I’m now reading everything I can about the surgery and having more questions about issues I thought were sided effects from treatment, are in reality cervical spine stenosis issues. I’m so confused. And the scary thing is that this surgery is done in. The front of my neck through the throat, next to the cararted artery. This. Terrifies me because I’ve had cough and swallowing issues all this time and could. Also be related to the cervical nerved in my neck affecting my esophagus. I’m going to have to talk about all of this with my oncologist who’s all for the surgery. I’m sorry everyone for being so negative. I’ll stop in later today and hopefully be more upbeat. Saying hi to @tougholdcrow @jen1 @vik2ri @norah2024 @exbrnxgrl @malleemiss251 @sunnidays @dulcea @radiation_cinderella @rstogether I only know a few of you ladies from @micmel thread and I’ve been scrolling thru here but not focusing on everyone’s posts. I’ read along later so I can get to know everyone a little better. Have a peaceful and comfortable Sunday.🩵🩷🌷
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@shanagirl, I am thinking of you. It can all get so very scary and it can be good to share your concerns with people - it sometimes helps you to decide what to do. It is not being negative - it is just using us as sounding boards. Know that the pictures you post of the paintings you do bring so much pleasure. The best advice I can give is to take one step at a time and it is perfectly ok to ask questions of medical professionals. You need to be comfortable with the decisions you are being asked to make.🌻
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@shanagirl it sounds like they are taking good care of you. I agree with @malleemiss251 and her suggestion to take it one day at a time. Yes, do your research and ask all the questions you can. What is the recovery on something like that? Have you talked to your MO about what part of your body should have priority? Those cervical symptoms sound important! And you are NOT being negative! We have all felt like this along this stupid journey. We are here for you. I will be thinking of you and sending strength.
@jen1 I was on verzenio for 6 months or so until progression. I have bone and liver mets. I was moved on to Truqap since I had the pik3ca mutation. That did nothing for me and I had progression right away. Well, I did have a lot of diarrhea on it. They also concluded that I was endocrine resistant (so stopped fulvestrant). Then they switched me to Xeloda which is an oral chemotherapy. I will say that of all the meds I have been on, this has been the easiest by far. I have some fatigue but it's very manageable as time goes on. I am still working as well. For me, the next step is Enhertu since I am Her2-(low). After that, unless I go on a clinical trial, it will be one of the IV chemo-therapies.
There is a link to an Interactive Decision Support Tool on this website if you search those words. It has been pretty accurate for me. Good luck!
Take care everyone!
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@shanagirl I'm so sorry to hear about this pain and uncertainty. The surgery seems really daunting, and I hope you get all of your questions answered and receive some reassurance. And I hope you can grab some beauty in this life when you can.
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Oh My Goodness thank you all for your insights and Reassurance that I am in good care. I do have enormous faith in my neurosurgeons in the group I’ve gone to for several years. My neurosurgeon wants to do an ACDF SURGERY - - - ANTERIOR CERVICAL DISCECTOMY AND FUSION
I SPENT THE DAY RESEARCHING IT AND IT’S TH ONE SURGERY THAT SCARES ME THE MOST BECAUSE IT’S DONE IN THE FRONT THROUGH MY ESOPHAGUS TO THE CERVICAL SPINE BONE IN MY NECK. From everything I’ve been reading I’m beginning to realize that my recent coughing and swallowing issues the last few months are likely related to the cervical stenosis. All this time I assumed it was my asthma and treatment SE’s swallowing or possibly left over from the stroke I had back in 2005🤔then I read this article. https://caringmedical.com/prolotherapy-news/swallowing-difficulty-dysphagia-cervical-instability/
The more I read the more insecure I get because I am afraid that because of my age it won’t be a same day procedure at the surgi center but at RWJ Monmouth Medical and a 48 hour stay because they want to keep me because of my age, which is making me feel extra sad because I will be turning 76 this week😢and extra down and moody from my treatment injections 2 weeks ago. I am thinking it’s not a fracture but moderate to severe foraminal cervical stenosis according to my MRI’s, @sf-cakes 🌷
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@shanagirl Hi sweet gal. I'm so darn sorry you are dealing with the pain and such a difficult decision. Do you have a 2nd opinion lined up? I know you have a good relationship with your doctors, but I believe a second opinion would make sense. . Don't let a number (age) get in your way of enjoying your life. I'm not walking in your shoes, so my opinion may hold little relevance. With MS, I try to stay away from surgeries if possible, due to risk of a major flare that I may not recover from. Can you get an opinion from an ENT doctor to help you factor that into your decision?? The weather is sure beating alot of us up with our ongoing pain, too. I'll keep you in my thoughts and prayers.
Laurel
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@shanagirl As Bette Davis once said, getting old ain't for sissies. When are they scheduling the surgery? I hope you can enjoy your birthday.
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@irishlove Thank you sweetheart, Laurel🌷the thought of 2nd opinion didn’t occur to me because the two doctor teams I deal with are from 2 different practices and hospitals. the first was my Onclogist who viewed my scan and called me t speak to a Neuosurgeon he works with. this was a few years ago. At the time I chose not to see someone he recommended because it’s a long drive up there. instead I met with the neurosurgeon in the orthopedic group whom I’ve been seeing since 2012 and have done knee replacements and I know & trust,. I spoke with the neurosurgeon and he agreed , looking at my Cervical spine MRI that surgery was a logica option. At that time ti told him I would refer to treat it more conservatively rather than surgically. I was then referred to my. Neurological Pain Management Dr, who’s been treating me with Epidural injections every 4 to 6 months, which have carried me thru till now. My last Epidural he emphatically told me the injections are no longer safe for my condition and could have negative effects to continue and wanted me to consider a surgery with an overnight stay…apparently my diagnosis includes Myelopathy, and my Oncology team at the John Theurer Center at Hackensack University Medical Center is encouraging me to trust my Neuro team who practiesurgical procedures at Jersey Shore University Medical Center and also RWJ Monmouth Medical Center Center. I just feel I’m wasting time and puttting myself and DH through more Dr. visits that are just inconvenient and not necessary. You ar right Laurel, age is a number and no more, I keep telling my family I plan on being around til my nineties like my grandmother was. So I’m pretty young compared to that, and I’ve survived and bounced back from every health disaster I ever faced. I think just my mood is the result of the sudden new pain issues and all followed by my treatment s of Falsodex & Xgeva injections, and how I. Always emotionally withdraw as a SE from them.
@tougholdcrow Yes love those Bette Davis words of wisdom. I loved watching her movies with my mother, and that son Bette Davis Eyes🥰So with that advice I’m going to be like her and “Bitch Slap” this Cervical Stenosis Bitch, annoying enough to bug me when I’m already Bitch Slapping Bone Mets. Thank you so much.☺️
Barbara
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The tips from all of you about the Faslodex shots have worked great!
Am starting Xgeva shots tomorrow. Understand that you can get the injection in either your thigh, belly or arm. Any suggestions as to which area has less side effects? Anything I should do before or after the injection to prevent/limit side effects?
Know this is kind of last minute, but an email I sent last Friday with my questions has not been answered so far.
Thank you.
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@going2beatthis I get mine in my belly. They alternate which side every time. I have never had any side effects from Xgeva-hope you will not either.
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@chicagoan - thank you.
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GoingtoBeatThis - As you know, I get Zometa and not Xgeva, so have no personal experience, but I seem to think that many on here mention how they get it in their arm. Hopefully some of them will see this and have some advice for you.
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@threetree - thank you.
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Alright, back on the bone mets train! Many of you have read my of recent progression news but I feel self conscious about a thread devoted to myself, so I’ll hop back here , as well as Ibrance thread, but put any major news in the other thread if needed. Seriously, no more drama, just looking to complete one Ibrance cycle 🔄! So as of now back on Ibrance and Arimidex (Faslodex was too much for me). Pelvic rads have been very difficult but I’m almost a week out from end of tx and am seeing slight improvement. Pain in sacrum/pelvic bones seems to be improving. It is just so darned uncomfortable and weird feeling!
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Got my Xgeva shot yesterday. Opted for the arm this time since I am having my Faslodex shots next week. So far no side effects! 🤞 Found out that my mo has scheduled me to get my Xgeva every 3 months.
Also found out yesterday that radiation to the mets in my cervical spine is starting today. Really like that my new center is so proactive.
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@going2beatthis I’mglad you had your shots. They’ve worked for me so far keeping me stable with the Verzenio.I had my scans on Monday and got the results back already on My Chart while driving home. All Normal and stable, no change, organs clear.😊
@threetree Hey there girl,thank you. for the kind words on the other thread. My oncologist had me on Zometa infusions in 2009 when I was first diagnosed with Stage IIIA. I think I only was on it for a year….All those years after I was NED, which I believed I had beaten the cancer and was cancer free. He always had me come back for follow-ups and labs and my Cancer Antigen CA/27-29 was constantly low at 25 or 26. ….for years, every 6 month visit. Then I got the call from him one evening that those tumor. markers had jumped from 25 to 84. He wanted me in for scans asap that week, and the. bone mets showed up everywhere. Spine thoracic & lumbar ribs, sternum, Illia, hip & tail & seatbones. i was shocked 😳 I thought all those years I had beaten it and was cancer free. Nope. the cancer cells must have hidden out somewhere in my bones, like a dandelion puff, hides out in a l lawn, and suddenly shows up throughout the clean lawn. that’s How I. view cancer now. It’s insidious and cells can hide anywhere dormantly and suddenly show up as traveling primary cells in your. blood. 🩸 Thank goodness my Onc had me do. 6 month lab follow-ups those 13 years. When those scans showed bone mets he put me on the Verzenio daily chemo pill, Fasoldex injections and the Xgeva injection, which is a Monoclonal antibody, whatever that is. But. so far it’s worked for me. He says. “You are. a miracle” .he watches me like a hawk. He sent me last year or so for an ultrasound Mammogram of my right “good breast” and they found calcifications and LCIS, which he says is not considered cancer. (Lobular Carcinoma In Situ) but I have to go back every six months for “surveillance “ mammograms. Cancer is the Neverending Story. Ya know it’s funny because I breastfed all my children into the second year exept for our first, who weaned at 7 months, but my other babies wanted to nurse into toddlerhood in the beginning of the 2nd year. I always felt secure in the belief that because I always was faithful going for yearly mammograms and had nursed my children when I was younger in my 20’s & 30’s and went for yearly mammograms in my 40’s and 50’s, I always believed I will never get breast cancer. I was safe because of nursing and mammograms. Bullshit. Not so. All that and the precautions of eating healthy, juicing, lots of fruits and veggies, exercising, running, equestrian riding, walking 3 miles a day, and caring for a big family and gardening I was a size 4 -6 my whole adult life, until I got sick with a hemorrhagic stoke, then breast cancer, 2 knee replacements I was no longer active enough. to stay a size 4-6, because of the steroids with the stroke, and no longer running and riding and fast walking I no longer wear XSmall. clothes any more but XLarge and very sedentary because Stage IV bone mets, and severe arthritis, makes it so hard to walk the dogs even….Life. never. stays the same but I’m always trying to stay reasonably positive life is still good. God is Good.
have a beautiful day my friends.🩵🌷
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Shana girl,
Just read your post. I am always struck by the fact that so many are lead to believe that if early stage breast cancer is treated and you maintain a healthy lifestyle you are cured. While this is true of the majority who receive early tx, it is usually a shock to those who recur. There is no cure for breast cancer, only an absence of recurrence.
I had 13 years of progression free mbc with a single bone met that had been radiated but like you, they’ve now exploded. Breast cancer is so complex and very, very frustrating. Take care
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shanagirl - glad to hear that you are stable and organs are clear. 🙌
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@shanagirl That's a moving story and reminds me that life can escape all our predictions. At my age (67), many of my friends are starting to suffer from this or that illness, and we're all shocked that yes, aging, with all of its ups and downs, has finally come to us. Wasn't that something that happened to everyone else? I guess it can either defeat us, or make us wiser.
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Shana - You are sure right about cancer being the "never ending story"! Thanks so much for sharing your history with this. It puts more things about you in perspective for me. You have been through more than I can fathom and you've done it so well! Amazing.
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Hi everyone. I too share the story of being diagnosed IIa in 2011 and undergoing a lumpectomy and full ,course of radiation, thought I was done with bc. Surprise! 9 years later I have extensive bone Mets. They got clear margins on the lumpectomy and no lymph node involvement and yet those cells hung out in what some believe to be the micro-circulating system only to spread around and do their damage years later. I didn’t see a regular oncologist after my initial treatment, that is how sure i was that I was done with bc. Surprise! lifting a heavy piece of furniture that I was constructing resulted in a broken rib and my finding out I was stage IV. I did Letrozole for a year or so, and then went to Ibrance and Faslodex! Man, those shots were fun. When I found out I had the ESR1 mutation, I went in to Orserdu. I am not sold on that med on its own. I think it needs a partner drug. That lasted 8 months. I am currently on the last of 10 radiation treatments to my left femur, and then on to Xeloda! What a long ride some of us have had. I have been using a rollator but the pain in my left leg is improving! My skin is holding up well. Has anyone had any experience with Xeloda? Shana best of luck with your surgery. It is amazing what they can do to help us Stage IV girls, and hopefully more advances to come. At least spring is here and should make life a bit easier and brighter for all of us.
I
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@gigil Welcome to this site, which does me a lot of good, comforts me when doubt sets in and gives me the strength to face up to this disease.
I've had a similar experience with a small breast tumor operated on by lumpectomy in 2016, radiotherapy and Letrozol.... and I told myself I was done with it. 7 years later, pain in my ribs and shortness of breath prompted me to go to the emergency room, where I was diagnosed with stage 4 with rib fractures and a flare-up of bone metastases. After various treatments, targeted therapy and chemo iv, I've been on Xeloda for 4 months. After adjusting the dosage and adapting my body, it has become a very bearable treatment, one that causes me very few side effects compared with other therapies. There's a very good thread on Xeloda (go to the search bar), where you'll find lots of good advice on how to follow this treatment better. Good luck to you and don't hesitate to ask your questions, the ladies on this forum are very empathetic and will give you serious answers.
Translated with DeepL.com (free version)
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Hello soldanella and everyone. I have been on and off this thread for almost four years now. I will check the Xeloda thread soon. I just finished a course of ten session of radiation for a lesion in my femur. Now I am to wait to start the Xeloda for a week. Thanks, GiGi
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Hi all, just wanted to share this YouTube video on Bone Mets from Living Beyond Breast Cancer. I’m only halfway through and already gleaned so much good current information, very simply explained with a hopeful outlook.
He described so far different types of imaging, pain management, radiation and kyphoplasty treatments, ONJ and bone strengthening drugs, hormone profiles related to bone Mets and more.
Hope this helps someone
https://youtu.be/EeSJE9M8iJ4?si=M8-E3avqqAFfkTCX3 -
@olma61 - Thank you for posting the link. His presentation was very interesting.
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Hello everyone, I just wanted to hop on and give you all a quick update. I am on Prolia now instead of Zometa. Verzenio has been reduced to 100 mg twice a day.. We went back up to 150mg twice a day but started having again lung inflammation. Still on flasodex. Just completed rads to pelvis for pain. Tumor markers dropped after rads but are creeping up again. After my next scan in June I think my oncologist is going to switch me to Xeloda. Other than the lung inflamation on the higher dose of Verzenio I have done ok. I have not experienced the extreme runs that many on the Verzenio have had. I am hoping I can stay on Verzenio a little longer. Nervous about this upcoming scan because I am having pain in my rib area.
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@jen1 THanks for the update. Sorry to hear about continuing problems, but hopefully they'll have you on the right drug dosage or right drugs soon.
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I’m not on Verzenio, but I’m currently taking Kisqali.Before 2weeks,After experiencing sudden back pain, and a continuous rise in the tumor marker CA 15-3 throughout the nine months of treatment, my doctor advised me to get an MRI.
The results showed a tumor in the T9 vertebra, and the cancer had not fully cleared from the vertebra L4 that was discovered nine months ago.
My doctor’s plan is as follows:
- Undergo radiotherapy for the new T9 lesion to reduce pain and control the tumor.
- Since I’ve already done genetic testing, we are now waiting for the results.
- If mutations are found, we’ll target them with specific medications.
- If no mutations are found, a full-body PET-CT scan will be done to check whether the cancer has progressed elsewhere.
If other tumors are found, the doctor plans to switch to Enhertu treatment and stop the CDK4/6 inhibitor.
I’ve been anxious and stressed since then, waiting for the genetic test results.
I truly hope I can stay on my current treatment protocol.
Wishing you a speedy recovery.
I hope this information is helpful to you and answers your question.
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