Hi ladies
I found out about my bone mets after an X-ray for back pain showed a fractured T5
Just wondered if any of you had this and what treatment were you given for the pain
I have bone mets and nodules on pleura
Currently taking Ibrance letrazole and xgeva
Had a session of radiotherapy a few weeks ago but still in pain
Was offered a procedure called kyphoplasty but scared of small risk of paralysis..have enough to worry about without that!
Hi Barbteeth, I work at SHARE Cancer Support and we have support groups, both in-person and via telephone, for metastatic breast cancer patients. Maybe participating in one of them would be helpful. Here is a link for more information: sharecancersupport.org/meta... Hope that you are able to find some support and relief. Take care.
Hi, Barbteeth! I'm sorry to hear about the pain you're experiencing from your fractured T5. I hope you can find something to help you. I also have bone mets in my spine and one of my thoracic vertebrae is fractured or compressed. I have always wondered whether it is the result of the bone mets or from a car accident that happened much earlier in my life. Either way, I've been fortunate not to have any pain from it.
Hopefully, the Xgeva will help to keep your bones strong. I recently had to abandon it myself when I developed MRONJ, (medically-related osteonecrosis of the jaw, which is characterized by a gum lesion. The bisphosphonates in the Xgeva caused this.
I wish you all the best! Thank you for letting me know that there is a small risk of paralysis with kyphoplasty. I had not been aware of that.
Hi Barbteeth. So sorry to hear about your pain. I was diagnosed the same as you. Horrible back pain. Found out in emergency room I was being admitted because they saw something very serious. I pressured them to tell me. I was told I had many lesions that they thought was cancer. Mine was L1. I was given a brace that made all the difference the next day. That is when I found out I had breast cancer when my mammogram was clear 8 months prior. My oncologist did not want me to have radiation at that time. So the brace and pain meds until the fracture healed. Actually, that was almost two years ago and I am still on pain meds. I take Ibrance, Letrozole and had Xgeva every month, then every other month, now two times a year because of the necrosis of the jaw. Love, hugs and prayers. ❤️
My mammogram was clear 8 months before too...but then they found it I’m bones and Pap smear.
Currently on zolodex, xgeva, letrozole and Ibrance.
🤗
That's sure not an easy way to find out you have bone mets! My experience with bone mets in the spine has been very different than yours as I've had no fractures or pain, but I have had to have two back surgeries in an area that is metty for reasons unrelated to cancer. I do have a couple of suggestions for you. If you haven't seen a breast cancer specialist onc, I'd suggest doing that as soon as your can. Your own onc should be willing to make a referral and get an appt for you. The top cancer centers in the US are those called "Comprehensive Cancer Centers"--they are listed, by state, on the website of the National Cancer Institute and they have very specialized oncs who both see patients and do research and are on top of the latest research and thinking about treating us. If you haven't had an appointment with a neuro-surgeon about possible back procedures, that might relieve some of your anxiety about a back procedure. I have a bias about that, though, based on my own experience. My doctors sent me for physical therapy for my lower back pain and by the time I saw a neuro-surgeon, I had permanent damage to the sciatic nerve which means I have greatly reduced feeling down my legs and into my feet. So I am biased towards seeing a neurosurgeon early, though that doesn't mean I would automatically do what they suggest, but would want their opinion before making major decisions about what to do next. You might also like to know that I have been living with bone mets for over 14 years......I am tired, but still definitely able to enjoy alot of the things I have always enjoyed and I look healthy enough that people never guess that I am living with an advanced cancer. I have heard good things about acupuncture and medical marijuana for pain from bone mets.
Hello. I too after two years of being treated for lower back pain with massage therapy, chiropractor, physical therapy, acupuncture,etc suddenly had a fracture of my sacroiliac joint. An MRI discovered I had a tumor there and many others in my scalp, shoulders, spine and pelvic area. That was March 2016. I had about 16 radiation treatments and have been on Ibrance and letrozole since with monthly Xgeva injections. My severe pain went away after a few months. Now just take Tylenol occasionally if I overdo it. I have since retired and have been traveling some and enjoying life the best I can. Latest scan showed mild improvement so hope it continues to work for many years to come like PJ!
I have a scalp met with bone Mets. Haven’t met anyone else with scalp. Did treatment help the scalp? I have a scab from biopsy 3 months ago that won’t go away.
How about Prolia instead
Hi Barb, I'm in a similar situation but for the lumbar. I'm yet to start any treatment but offered the same meds for treatment. I'm on the fence about rads because I basically got myself out of pain. I teach Pilates so I'm lucky to know how to look after my body to help with the pain.
I feel for you with your decision. I'm sorry I know nothing about the procedure but the potentials are a concern. Ask questions like how often they do the procedure (at your hospital) What are the percentages of adverse events. Solid facts help.
Also how is your posture? T5 is a typical location where many of us slouch forward, esp if you read a lot, look down at your phone, or work in a computer with the monitor set too low. So, making adjustments to improve your chances to sit tall should definitely help at least some. I see in other posts others mentioning marijuana oil and other things that may help. The other thing to find out how is the integrity of the bone in relation to the nerve? Is it likely to get worse , or better with some time and give the treatment a chance to work.
And when you sleep lay flat on your back with an appropriately-sized pillow.
Wishing you well,
That's how I found out I had MBC to the spine. I fell when i was power walking. When I hit the concrete I figured I broke a rib. However, my T-7 was smashed. They had to rebuild it with two Kiva coils and concrete (kyphoplasty). It's an in-and-out procedure and it helped me a great deal. I would recommend it. benvenuemedical.com/product...
That's amazing they can mend it so quickly. Good to know! I have a partial compression fracture of L5 but I'm pain free if I just avoid a few types of movement. I do realize my spine is vulnerable though so I'm happy to hear of surgical success stories like yours! That is reassuring.
My husband had kyphoplasty a few years ago and would highly recommend it. His was not because of cancer issues, but falling off a ladder issues... It really worked for him and was quick.
Hi there- Last summer & fall I had increasing problems walking & pain in my back. To make a long story short last November admitted to hospital for emergency surgery for fractured femur. I also had a fractured T10. Though neuro-surgeon offered spinal fusion for multiple vertebrae... it was considered high risk surgery. We declined & a hard shell brace was ordered.
I wore that brace pretty much 24/7 for several months & continued w/ treatment (radiation to femur, Zometa, Ibrance & letrozole). By April I found I could lift 30 bottle flats of water WITHOUT back pain.
As the Ibrance commercials state... this MBC w/ bone mets is 'relentless' but I had good success w/ using the brace... for now!!!
I had the vertebrplasty, it helped a little bit. My back was already destroyed some much it wasn't a miracle help. I had so many crushed veretabrae. I had 10 radiation treatments that help strengthen those bones. I also had a complete spinal cord compression, they relieved that's how I found out about the the bc . I went to the dr 8 times with upper thoracic back pain.
Bone Mets Pan
Bone pain, trouble walking
Bone Mets Pain
Anyone had an increase in bone/joint pain after being on Ibrance and Letrozole for a few years? 
