Bone Mets Thread
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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.
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Hi, Candy. So glad you’re back home. That must have been so scary once you got it figured out. I’m so glad your doc recommended you go to the ER and that you listened.We do try to poo-poo pain sometimes. If you hadn’t listened, you might not be here. I’m glad they were able to get you better and back home. Hugs.
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Candy are you feeling any better? I just prayed for you! ((((hugs))))
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Candy, glad you're home & happy you were properly treated and diagnosed!
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Thank you Nicole.
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wow Candy. Sounds like a close call. Glad you took care of it.
So often when I go to ER I feel like they think i m wasting their time.not being life threatening and all. Doesn't help that neighbor here is an E R doc on up north. This is his recreational property.
Gailmary
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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
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I had a sacral met radiated and the only people there were the therapists who stuck me on the table, etc. Also - I just had a tattoo placed, no mold or anything, although perhaps its different location/situation and they are trying to manage potential scatter in your instance due to the stomach problems? Same thing with the tattooing/trial run, it was the therapists and not the RO themselves in the room. In fact, I had no idea WHO my RO was until I met with her after five sessions and realised it was the same woman who showed up at the hospital one day with the MO.
Glute pain is totally likely from the sacral met - thinking back, first indication of that met for me was some glute pain on that side after a very long walk one day, and this was almost a year before diagnosis. I had a lot of referred pain around the top of the glute to the hip to where I was complaining about hip pain. And I was always in pigeon pose trying to stretch the affected glute, thinking it was tight for a reason.
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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.
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Moth Thank you, you and Sondra really eased my mind. Everything you described is where my pain is. I too had pain in what I thought was the hip for a year and half prior to diagnosis. CRAZY!! You sound exactly like me.
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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.
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Thanks Sadie!
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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.
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(((((Nicole)))))) hugs
Sorry you're having pain. I hope it's just a thing that's randomly happening & nothing to do with your treatment not working.
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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.
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Nicole, hugs from me. I just wanted you to know I’m thinking of you.
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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.
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Nicole-I hope that the Afinitor is working for you
I have a question about radiation- I just had a PET which showed the right hip only has some progression- from SUV of 3.6 four months ago to 5.5. all the other bone mets do not light up and no lung, liver or lymph node involvement still. I will talk to my MO in a few days and am wondering about an IR and some sort of rads since this seems to be a progression in one bone only. I am on Xeloda. I have heard of other people having had spot radiation, but, don't know much about it. I will cross post on the Xeloda thread also- thanks for any input. (I have no pain)
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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.
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Bev, glad you checked in, thinking of you
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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.
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new question re Zometa- how long are you staying on it? My MO Says I can stop it since bones are quiet and I have been on it almost four years.
Thoughts?
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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.
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Nkb,
Sorry. I guess I didn't explain myself. They found that my right hip was in bad shape due to it being eaten away by cancer and arthritis. Once they saw it, they threw me into bed. After some consideration, they determined that they needed to operate -- complete hip replacement on right, rod and pins on L. So I ended up in bed from April 10 until April 30.
Hope that explains it.
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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.
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BevJen, I hope you’re doing well. That sounds awful.
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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.
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BevJen- yikes! so I guess what you are saying that it may be more than just a few nasty cells when they look into it. I suppose they will do some X-rays and look further at my hip before they zap it. I hope that when you get rehabbed your hips are stable and pain free.
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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!
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Lynn,
No, I had successfully avoided them. While at Hopkins and out of it, one of the treating docs went crazy bc I wasn't on one of these, and started zometa.
So who the heck knows? However, the surgeon said it was a combo of arthritis and cancer that caused my issue with the femurs.
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