Bone Mets Thread

KBL- I posted on the Ibrance and Mel's Living Room Threads. I have been in the hospital this week with a PE-- blood clot to the lung. I am home now.

I have my next MO appt May 17 to talk about possible next treatment plan--- small progression of liver mets on March scans. Liver biopsy done last week to see about mutations.

Candy are you feeling any better? I just prayed for you! ((((hugs))))

Thank you Nicole.

Well My husband and I met with the RO today and he feels it is now time to radiate my sacrum. He also feels that my Glute pain could be from the Sacrum as well. So they will do the molds this Thursday.

My RO mentioned he wont be there Thrusday but his colleague would be there but that he will be there for the actual Radiation, and that will be everyday for 10 days. So my question to you all is ....Is this like Y90 where its like getting mapped out this Thursday bc I feel upset and worried that hes not there for that??? I am going to cross post.

TIA for your replies

Nicole, for radiation treatments after the mapping is done, the whole treatment plan is designed by the RO and also by medical physicists who do all the calculation of the doses and the measurement of the angles for the machines etc. So I think all he's saying is that the day of the mapping he won't be there to look at the actual images - someone else will. But that's totally ok IMO because the mapping ct is just a small part of it. It's a whole team thing and the mapping is just one part & most of the treatment plan is done when you're not there. The mapping is really just a slow ct with no contrast to figure out where your body landmarks are and whether you need radiation tattoos.

I wouldn't worry about him not being there at all! My RO hasn't been present for the mapping of any of my rads.

Hi Nicole. Just chiming in. I had sacrum radiated... all I had for mapping was them marking me up with a felt marker. Trick was not washing them off! And my RO has never been present for mapping or treatments. I've never had any concerns or issues.

Im having such a bad day. My T3 and C7 are really acting up which of course leads me to believe the Affinitor is not working...not that I even thought it would....even if it did...I have never gotten more than 3 months of a med to work. I know I probably sound like I am feeling sorry for myself...I guess I am...but I am just upset...GOSH is it too much to just want something to work for more than 4 months...???? I mean I am on my 6th line of treatment in 2 years...statistics are right...at this rate I will be dead by 2022...which will be 3 years...I am already running out of treatments...

Sorry I just needed to vent.

Nicole...my RO was not present the day I was tattooed or molded for my sacrum either. That's completely normal.

Hugs for you Nicole.

dang, Nicole. So frustrating. Just sharing this, my doctor said there's like 20 different things to try so don't go giving up on us yet. He won't talk about options with me cause he doesn't want to jinx it. Really I think he thinks it's a waste if time to discuss options prematurely.

God Bless Nicole.

Nkb,

Just a word of caution. I had what looked like very small cells on my femur, and they put me into bed prior to my hip surgeries recently. Probably not something that you want to mess around with.

I am having rads but after the fact -- after a hip replacement on the R and a rod being put in on the L.

BevJen- I didn’t understand your post. You had rads to a met on your femurand ended up in bed and needing a hip replacement ?

Glad you are doing better now.

I was on pamidronate and MO stopped due to creatinine creeping up. He doesn’t feel I need to be on it anymore as apparently it stays in your system so I would think it’s fine.

Bev:

Are you on Xgeva or Zometa? I read somewhere that a rare side effect can be a femur fx. Hopefully you are doing well and will be discharged home soon.

Oh BevJen, that’s a long time to be in bed. I hope you are getting the physical therapy you need and that you are able to regain your strength quickly. Wishing you a speedy recovery.

Bev, that's so interesting to me about your hip replacement and the hip bone damage from the MBC. When one of my docs, an orthopedist, said that I needed a hip replacement about 2 years ago, (which others ultimately poo-pooed and said he was wrong...he is apparently frequently wrong), my other docs said that I did NOT and that it wouldn't work, anyway, as the damaged bone wouldn't properly repair itself after the replacement. I'm delighted to hear that yours take a very different approach. Very encouraging for future options. Good luck!