I am very interested in this!! I have bone Mets to my pelvis. Please keep us posted with your results. It sounds life changing. Thank you for your knowledge!
Thanks for this! I haven’t looked at the reports yet but eager also to hear what the docs say to you. Which specific bones are you having trouble with right now? Perhaps iliac, or acetabulum or pubis?
Here is what I learned from my appointment at MD Anderson Cancer Center yesterday:
I met with the head of breast oncology and an orthopedic oncologist.
They recommend the following:
1. Reduce IBrance dose to 75mg to reduce side effects. Research shows that for people experiencing difficult side effects, their body metabolizes the drug differently & there is no reduction in time of effectiveness on the lower dose drug. They don’t anticipate any difference moving me to the lower dose except reduction in side effects & improved quality of life.
2. Go back on the bone growth shots, Xgeva. I was on it for 2 years then taken off 3/2021 as that is the “old” standard of care. MDA says you can stay on it up to 5 years.
3. You can use your left arm for blood pressure & blood tests if you never got Lymphedema in that arm after the Masectomy. New standard of care.
4. You do not need mammograms on your remaining breast because you are getting PET/CT & MRI scans at least yearly. They are only warranted if you or your doctor find a lump in your breast. Glad that finally got settled.
5. To reduce bone pain Orthopedic oncologist recommended 2 weeks of radiation (first preference) and at my request an interventional Radiology consult to consider bone cement (this can be done on a telemedicine visit). I want to consider the pros & cons of each option. I will update you after that consult.
6. The original tumor 4/2019 in the left acetabular at the hip socket on the pelvic bone, has healed very well. That was weight bearing & why I could not walk without a cane/walker for the first year. The SBRT radiation I received in May 2019 was very effective. That was great to know.
7. My current fractures are on the left acetabular ring. They are not weight bearing. I have pain but I should not worry about walking & hurting anything.
Gee this is ALL very informative! Thank you so much for sharing all of this with us! So that’s great news for you to know you can at least walk without risking more damage.(and that your radiation helped a lot). I was on the 75 mg iBrance for close to 3 years (Happy to hear the lower dose didn’t shortchange me!) .
I had Xgeva for about 2 years monthly and from then in it’s been every 2 months .
Interesting their thoughts on using your surgery side for blood pressure and bloodwork. Personally I’m going to stay safe and keep using only my other arm. Not sure I trust their advice in that lol. That’s just me - I know too many who seemed to develop lymphedema easily (but from other causes).
My oncologist is not radiation happy but she does insist I still get a mammo every year on the remaining breast. Hmmm. Might need to look into this more/ challenge her on this again!
Very interesting notes you have here. Please keep us posted on the next details!
Sister/warrior You shared some great information in your post. I do pray the cementing procedure will have you walking ASAP completely pain free. I know you will be fine because DR/GOD is in charge 😀 🙏
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I do pray the cementing procedure will have you walking ASAP completely pain free. I know you will be fine because DR/GOD is in charge 😀 🙏
Hi! Lobular BC with bone mets....
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