Bone Mets Thread
Comments
-
Candy, does your MO order periodic scans? Yes, even if the bone mets are 'stable', they can hurt. Sadiesservant, I think it is really hard to know if the mets on the spine are progressing unless there are new spots seen on the scans. Otherwise, most radiologists will say 'stable mets' for the spine tumors.
Candy, You may want to pursue radiation to the spine, which definitely brought pain relief for me. I take tylenol and tramadol extended release to control pain. Cannot tolerate opiods.
0 -
Hi! I joined this thread very briefly when I was first diagnosed but it was too much to take in at the time so I decided to jump on and get back in the conversation with my fellow warriors again! There are just so many times that I need to talk to people who actually get it but on the flip side, it's all just maddening that there are so many of us having to deal with all of this!
Here's a question I hope someone can answer...I had radiation to both femurs in December of 2018. Does anyone else experience extreme tightness in their legs following that? I used to do yoga and while I wasn't Gumby, I was fairly flexible. My legs are so tight it hurts to straighten them say at night when I have been sleeping on my side and go to turn over.
Last question...they now want to do radiation on one of my vertebrae because of a fracture. Has anyone had this and did you experience any side effects? I'm a little worried because I did not expect this with my legs at all. I realize the tightness is better than breaking a femur and same with my back...I know I'll need it because having it fracture would not be good but this time I'd rather hear from people that did it and how it affected them if at all.
Thanks so much and I look forward to getting to know you guys!
0 -
I’ve only had my hip radiated (for cancer and because I was at high risk for pathological fracture) and it is so tight now that I can’t sit cross legged and it’s hard to bend to pick things up, put on socks, etc. spending time in the pool helps me tremendously
0 -
jensgotthis I'm curious - my new spine doc has made a referral for me to utilize aquatherapy to work my spine (compression fractures). I'm on ibrance and I notice you are too. Oncologist said she thinks it's ok to use the public pool as long as neutrophils are over 1.0. This is giving me huge anxiety because I tend to run right about 1.0 - 1.3 Are you using your own pool?
I had radiation T11 and my back is definitely tighter there than other places in my spine. My hips are really super tight but more on the side where I have arthritis.
0 -
Fightinggirl - I had my left breast bone, mx scar radiated 2 years ago and it has just recently started to be tight - when I asked, I was told it is the radiation effects! hmphhhh, never ending it seems. I find that stretching and massaging the area with finger tips helps. Welcome back to this place where I wish none of us were
0 -
S3K5- We only do CT's, every 3 months. I have had 1 bone scan, but it was not very accurate due to the RA--showed uptake EVERYWHERE (spine, shoulders, elbows, wrists, hips, knees). I have had 1 PET at diagnosis and my insurance has denied another unless there are major changes in CT's. I do think the pain I am having in the spine is related to the cancer. Like I said it is specific areas I can point to and the pain is right on that spot and deep.
0 -
quick question
Had pet 8 weeks ago and all clear. NED Since December. Few days ago noticed my sternum is tender like a bruise. Can’t tell if it’s comjng from overlying muscle or the bone. How likely in your experience would a met cause that kind of pain so fast ? Since becoming NED and finishing treatments I’ve had a lot of ptsd andlack of trust in my body- and I can’t stop touching it (not helping I know ) I feel it so unlikely but at the same time not impossible. Finished rads one month ago but doesn’t seem to have hit the sternum at all
0 -
Thank you for responding! So it sounds like I will be dealing with the tightness and it is normal. I'm really bummed at having my back feel like legs do but what can ya' do...like I said before, I know it's better than my vertebrae collapsing on me.
B-A-P, how wonderful to get the sweet words of NED! I hope to someday as well! I pray that your pain is not anything related to cancer and goes away soon.
I hope you all have a great Saturday!
0 -
Is there anyone with METS in the Phoenix area by chance??
0 -
BAP- could be costochondritis- look it up and see if it fits.
I had bilateral chest and axilla radiation and have a lot of tightness in pectorals- done in 2012- I do lots of yoga and keep on working on the stretching- it is much better- but, at first felt like the muscles around there no longer were stretchy.
0 -
This is reassuring...I had my spine, sacrum and hips radiated, and what I'm experiencing is probably TIGHTNESS and not necessarily phantom pain from progression.
L
0 -
I’m going to have my sacrum pubic bone and femur radiated. I have question. Does this type of radiation affect your bladder and rectum. I forgot to ask radiol,ogist. Next appointment next week. Did any of you have other side effects ? I’m having a biopsy to check Her status. I have new pain in the areas that show progression after 18 months stable. I feel like I’m starting all over.0
-
moomala, I can hardly believe it but I’ve been using the local YMCA pool. I just don’t go the same day my port was accessed. So far, so good. Aqua therapy is incredible. I have nearly full range of motion in water and am working on getting to that out of water. Wish I would have done PT after my rads
0 -
thanks nkb - I am a kinesiologist by trade and Physio assistant. The pain isn’t over the cartilage, but very central. Im very bony in my chest so I can pin point easily. I’m sure it’s nothing. I’ve been reading that sternum Mets are not quite as common as other places and I did have a clean scan 8 weeks ago. I have a distrust in my body and felt like I would wouldnt be srprised if I developed a new Met this fast that caused pain . Sigh. Certainly the journey. Feeling like Ned is something we all strive for and then after getting that status you’re afraid to lose it.
My pecs are tight so will continue to stretch . I’m going to try and not touch it and cause aggravation. If it persists I’ll have to ask for an X-ray .
0 -
jensgotthis - the rehab facility where I'll be doing the aqua therapy is right across from my YMCA. I have not been to the Y in about six months because of my back issues (that turned out to be osteoporosis and mets related fractures) I'm told I can do the aqua therapy and then on the off days take it across the street to the pool at the Y. And I can do stationary biking but no outdoor biking for me at this point.
0 -
Radiation to my sacrum actually HELPED my bowel and bladder incontinence, as well as the pain in that area.
I only have bowel incontinence now if my diarrhea (from chemo) is REALLY bad and I just can't get to the loo and pull my pants down in time. I know, sorry, TMI.
L
0 -
Thank you Lita. That info really helped. Definitely not TMI. I have been having some spasm and leak a little already and running as fast as I can to the bathroom so maybe rads will help. Never thought it could be mets.
Thanks again
Mair
0 -
Wow, no posts since June 24th? I think this is the first time I've come to this thread and have not had to catch up on pages of posts!
Hope you all are out enjoying summer, family and friends. Happy 4th to those who celebrate!
0 -
Bliss - Yes this thread has been slower than normal. Maybe everyone is out enjoying life. We can hope.
How are you doing?
Gumdoctor
0 -
Dear friends, I’m sad to share that Deanna Baldwin has gained her wings today. She was an active poster on this thread and especially in the If you’re not Stage 4 but have questions thread. She helped so many people wade through this. Such a light to so many
0 -
So sorry to hear of the news about Deanna. What was her screen name?
0 -
I am sorry to hear this news. I hope she was able to transition peacefully and without suffering 💛
0 -
I am so sorry to hear of her passing. RIP Deanna.
0 -
I was heartbroken to hear about Deanna today. She was one of my first "friends" on BCO and has been a huge support system over the last several years. She was always so kind and took the time to share so much valuable information and advice - both on this thread and the FB group she helped to start. She will be incredibly missed. I am so sad.
0 -
Jensgotthis, Thank you for letting us know about Deanna. She was the person who pointed me to the Bone Mets thread when I first posted to BCO 4 years ago. This thread was a lifeline to me back then, and Deanna and so many others helped me through some difficult times. She will be missed by the many people whose hearts she touched. She was a special person.
Candy, Deanna’s screen name was dlb823.
Hugs and prayers from, Lynne
0 -
Lynne, Deanna was really so special and I love how you articulated it. When I first came to BCO, she was so supportive. We shared a bit about UCLA. I know she had been having a lot of trouble keeping her counts up and with fluid accumulation. It was still a shock to see the message from her DH
0 -
Hi All
I wanted to find out with regards to having Mets on the vertebrae,does that put one at risk in developing Leptomeningeal Disease?
I’m thinking since the tumor is on the bone and that’s also quite close to the spinal cord membranes?Or does it just remain in the bone ?
Please assist,I’m still trying to wrap my head around my recent Stage 4 diagnosis and there’s been a lot of information that I’ve been reading
0 -
Oh! I, too, am heartbroken to learn the news of Deanna’s passing! Her screen name was dlb823, which I always read as Dee El Bee eight-twenty three. Yes, she was truly a beloved member here and she will sorely be missed. May she rest in peace. My deepest condolences to her family and loved ones.
0 -
Jensgotthis - I did not know Deanna. I did look at some of her last posts. There seemed to be little indication of the end drawing near. Perhaps this was one of those sudden unexpected complications.
The void each one leaves as they pass is so...
Cannot find the words in this moment...
Gumdoctor
0 -
very sorry to hear about Deanna, and yes,surprising, as her posts seemed optimistic after surviving five years
0
