Bone Mets Thread
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Bigbhome - we haven't met, but I am intrigued with your story. Maybe traveling and trail riding is the therapy you need. I love that you are doing so well so far out from your diagnosis. Thanks for checking in. I wish you the best!
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Sunshine99, if I can remember how, I will post pics. The medical anomaly for me is that while I am riding my horse, I have no pain! No one knows why, but I don't, si instead of hiking (almost impossible) I can ride and enjoy how beautiful this country is!
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Bigbhome, what grade is your cancer?
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Bigbhome, it’s wonderful to see you back on the boards and even better to hear you enjoying life.
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Bigbhome- Glad you are enjoying life.
So many have commented that when off treatment they feel so much better. Wow. We need the treatment, but funny, not the haha kind either, that the treatment is what is making us feel icky, not necessarily the cancer. Hum....
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To All,
I picked up Ibrance today. Does anyone have any advice on taking it. I have looked for a thread on Ibrance. I just feel so week today.
I was great last night. Really very little leg pain.
Then my husbands back went out about midnight, he fell going up a step.
And then we were up until 5 am.
He can not walk at all. We have matching sets of crutches. So I am worried about taking it if I have bad side effects until my husband can get better. Your thoughts.
Also I probably should schedule my leg surgery.
Most of you are so wise and strong.
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Positive, there’s an excellent string on Ibrance called “ Ibrance (Palbociclib)”. There’s another fo
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Positive - I take my pill with a glass of milk to coat my stomach. Otherwise I’ll get a tummy ache from it.
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for Ibrance and Faslodex.
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Moth, my cancer is grade B.
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Rosie Red
Do yo get any side effects? And do you take at night or daytime
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Positive - I take it at night because I feel a little dizzy from it. Rather ride out that SE while I sleep. Otherwise I feel fine.
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I had bloodwork done yesterday and was waiting for the ok to start Verzenio. Just heard that my liver function seems off and they want to run more tests.
I'm scared.
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Bigbhome, thx. I've never heard of grade b so I dont know what that means. We usually get grades 1,2 or 3. No biggie, I was just trying to figure out if yours is very slow growing like a grade 1 ... glad you're doing well:)
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star2017, I’m so sorry you’re scared. I am sending you virtual hugs.
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Star, I know some of our drugs are hard on the liver. Do you think you (just) might need a break to allow for some recovery? Hang in there… sending you good vibes for a positive outcome
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I'm only on fulvestrant for now.
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Star 2017 - when they say the liver numbers are a little off, a lot of times the numbers are still within the normal range, but the oncologist wants the numbers to be exceptionally good. Hoping this is the case for you. Also, when they tell me this, I increase the foods that particularly help the liver like brussel sprouts, other cruciferous veg, beets, tumeric and lots of water.
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Thank you for the advice, GoKale. I'm going to be extra cautious with foods for the next few days.
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tried finding this but couldnt
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rose red and others,
I took my first Ibrance pill ast night. I did take with milk. I feel ok today. Does it take awhile to get SE.
To all that had Mets or tumor on femur thigh area ….I am still debating the surgery to put a pin in there.
Yesterday was a bad day back to some bad pain if I turned my leg the wrong way.
Today is a better day…so less pain.
To all of you that had the surgery WAS YOUR PAIN LESS AFTER SURGERY? a how long was rehabilitation.
I know some of you have replied. Seems I am afraid of all what is happening. That butt shot is next Monday.
Someone mentioned they felt better on treatment…is 5hat true for most. so far I haven’t taken pain pills only Motrin…I am the worst at taking pills.
I went for so long without any medical problems but boy am I catching up now.
I love hearing from all of you. I really hav3 no one to talk t
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Positive2strong here's a link to some info, heavy read but something to consider
"recent study showed that patients who underwent prophylactic fixation have improved post-operative outcomes than patients who underwent fixation after pathological fracture, including longer survival, and shorter hospital stay"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC52216....
My surgery was thoracic spine vertebrectomy and fusion with lots of hardware (not the leg) but after surgery and radiation I have much less pain, and of course much better at walking. Physical therapy has been a critical part of recovery. I was allowed to do normal things after 6 weeks which is a pretty good average after surgery and I've had several ugh 😩
Your case and your choices are of course unique to you, and I hope you get some relief from the pain and stress. I feel like I'm in an avalanche..
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Endora - I see you are new here, welcome! I have to say I 100% disagree with your MO. Not because I am a doctor but for the points you mention, no one really knows. Based on your post I am assuming you are bone only mets? Is that right? Statistically, even with widespread mets people have been living with metastatic breast cancer for years. The medications out now weren't even available a few years ago and I feel very strongly that some of the new technology, including MRNA will open up new avenues in the future. Is it an easy life with bone mets, no. Not by a long shot. There are several of us here who have had very painful surgeries to stabilize met eaten bones. I can tell you I was told that mets to bone only is about the best prognosis you can get with metastatic breast cancer. I was diagnosed in 2019 with a huge met to the femur, femoral neck and spots on my pelvis and several in my spine. My MO said "statistically" 10-15 years maybe less maybe more. There are a couple of folks here 15+ years out from diagnoses. I am on Verzenio and Faslodex and my last PET scan showed no evidence of disease. I'm probably more of a "prove it" kind of person when I get prognoses from doctors. I tend to look at possibilities rather than pitfalls so I would tell you don't give up hope.
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MKrestel,
Thanks, I opened up the link, my ipad is having a hard time with the pages moving them
So just read some of it. I will try again. I am 70 years old and the Dr made it sound simple a n hour to 1 1/2 hr surgery
When you had your surgeries were you on your cancer meds like Ibrance etc
Hope you are doing better
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Positive2strong sorry it's a really long article. I was just trying to show it might be better to stabilize the bone before it breaks. Ask your doc. My surgery was an emergency because the tumor completely filled a backbone, was squishing my spinal cord and about to collapse. I had no idea I had mets and was not on anything except tamoxifen.
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The thing is, when dealing with any illness the worst thing that can happen outside of direct pain from the tumor is loss of mobility. You need to be able to be up and walking and moving so your body can function correctly and avoid blood clots or pneumonia. Its partly why patients are encouraged to walk soon after surgery and PT is so important. When I was in hospital for my sacral met (diagnostics rather than surgery) a South Asian lady in her mid 80s was also on the ward, recovering from thyroid surgery. She was tiny, was never awake and every time I would hobble past her bed she seemed to be shrinking further and further down the bed and flatter and flatter. Two days later she collapsed in the bathroom and all of a sudden doctors were talking about pneumonia had settled in her lungs, in addition to an impacted bowel (yeah, there is NO privacy in British hospitals). At no point in those two prior days had a nurse or anyone come by to get her up and moving, or encouraged her family to help her to be up and moving.
If you stabilize the bone now with a short surgery it will allow you to be up and mobile with confidence and to regain strength and exercise, which is really important for dealing with (potential) treatment side effects. A short surgery like that shouldn't be a big deal with the Ibrance - I had my ovaries out (similar surgical time) on my off week and was just fine. A broken femur, however, will be much more painful and take longer to heal in a cast. Best to head that off at the pass if possible!
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Hello everyone...I'm just checking in, its so nice to see you long timers here. I've been doing just fine, they say all my cancer is still there it just hasn't been doing anything . When people ask I tell them its all sleeping. If its anything like me, it will stay asleep for a very long time lol.
Bigbhome, illimea, and divine miss m its especially nice to see you...my memory just keeps getting worse but I do remember you. There is just to much to read but I'm so glad I clicked on this thread and saw all of you.
Sending everyone here all my prayers and love...Nancy
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ok so new to this thread. I was diagnosed with BC in 2015 and went through all the treatments and have been on Letrozole since. I never had to many side effects from it so was told I would be on it for 10 years. Well end of June I tripped fell into a door and broke my humerus bone in my right arm. After initial X-rays they suspected a pathological fracture and I needed more tests. I was in really good shaped and felt really good. Initial bloodwork did not indicate anything was off. Had Ct with contrast and the in depth bone scans. Everything was clear except a focal uptick in this one bone. My oncologist wanted a biopsy to be sure and low and behold it was ILC. I am beyond shaken as to what happens next with treatments. With only one met will I stay on just a AL just something different. How soon will other spots show up. All unknown answers that go through my mind. I have an appointment on 8/9 to follow up with my oncologist. In the meantime I have had surgery to put a rod through the bone this week and in 2 weeks will start 10 rounds of radiation
Thanks for listening and I will go in and update my treatments soo
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Hi Duzy - sounds like they caught the mets early and that will work in your favor. A treatment plan will go to work on the bone mets and that will help you in the long run. It's very upsetting, but I felt a little better once I had a plan in place. It's also great that you are in top physical condition; strong bones will help slow down the cancer.
Take care!
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Nan! OMG NAN!!!! This made my day, so happy to see you and hear you’re well.
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