Exactly a year to the day of my initial diagnosis of metastatic cancer, imaging found extensive bone mets in my femur and hip. It is the osteoblastic type. I'm set up for physical therapy to work with the soft tissue on my leg due to the pain and also radiation. Scheduled a PET scan to see if there is spread anywhere else. Anyone have any experience with bone mets like this? I read that this type is hard to treat. Chemo was suggested but I have no idea what kind. I currently take Ibrance and Fulvestrant. These have kept me NED for 9 months, but those days are behind me. Hope you all had a good Thanksgiving (in the US!). In the midst of all we are dealing with it's important to find those things you can be thankful for. Thanks.
UPDATE 12.4.20 - had PET scan, met with ortho surgeon and radiologist. Scan showed some progression in femur and hip bones, which MRI confirmed. No progression to organs thankfully. Oncologist is taking tissue from original biopsy from liver tumor to do molecular testing to see if I have PIC3CA mutation. If so, I will start piqray with faslodex (which I currently do)..If no mutation he will start me on affinator (again w faslodex). He feels these are better second lines of treatment now that there is more bone activity. Not sure of side effect of either but hoping not so much hair loss as Ibrance caused me. Thanks.
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ndastrogal
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Yes, I'm seeing a radiologist Monday for consultation. I've read there is an intravenous radiation they give for osteoblastic activity, a big dose at once. But a lot do the treatment cycle of 2 weeks daily or so.
Radiation seems to always be that intense way.. like everyday for one to 4 weeks to kill off everything. So see? There is something out there! I don’t want you hurting
Be very very careful!!!!!! I had bone mets in my right leg (now in my left femur too - oh no!!!!). I fell, still not sure how. It was a minor fall and my femur broke. Believe me when I say, you don't want that pain! I had previously had stereotactic targeted radiation to my right hip and femur which I believe did work. I think a newer lesion on that femur caused the break. I am trying to get that information verified. It was never clear to me. I was unaware of how precarious a situation I was in as I was overdue with scans and had not seen the latest results yet. I just had a scan the day before. I fell September 3 of this year. I had a rod put in my femur and then another rod put in my right tibia a month later to prevent another break of that cancerous bone. I have been using a walker and wheel chair for 3 months now and it is really awful to be such an invalid and not get the exercise needed to keep these bone mets at bay, I am hoping to walk again with the help of PT. I am usually an active person and love the outdoors. I started Fulvestrant last April, and Ibrance 3 weeks ago. I just started Xgeva yesterday. My Oncologist wants to switch me to Xeloda as I have mets in other bones and in liver and lungs but I would like to give Ibrance a little more time as radiation is no longer an option on Xeloda. Doesn't mix. My best advice is go after it with the radiation, keep an eye on it with scans and DON'T FALL. !!!!! Please let me know how whatever treatment you choose works because I would like to try new options before this completely destroys my bones. I am very open to new doctors and ideas from this forum. Good luck to you and thank you for posting.
Sorry you are having so much pain. Last year I was in so much pain; I could hardly walk. I had 10 radiation treatment to my pelvic area. The pain went away. The only problem is that it fried my intestines. It too a long time to get over the extreme irritable bowel syndrome. However, if radiation is done on your femur, it may work well. Best of luck.
Thank you so much for the info. Take care of yourself and good luck to you.
I don’t know what osteobalatic means but I had extensive mets in my left hip (both the ball and joint). That was actually how my cancer was diagnosed de novo. I initially had radiation to the hip for pain and a lot of physio to get the muscle built back up in my leg as I went 1 1/2 years with extensive pain and loss of mobility. The pain wasn’t subsiding and my hip was in bad enough shape that I had a complete hip replacent with cage (for support).
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