Bone Mets Thread
Comments
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Skylotus - sorry to see you're dealing with more mets but I love your attitude.
Deanna - I have the get up to pee 2 to 4 times a night thing too that started with the diagnosis. But I got put into menopause and started Femera at the same time, so I'm not sure what caused it. But I rarely get more than 2 or 3 hours of uninterrupted sleep at a time and it worries me.
I don't have the hunching problem, but I'd think physical therapy would likely help.
Hugs to all,
Terre
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Dlb823, I, too, have the problem of bending when I walk. I have spinal mets and I can't seem to stand straight because of the pain. I do have physical therapy, but so far it really hasn't helped that problem. Even my Fentanyl patch doesn't take care of that spontaneous pain. I thought for a while it might be the Zometa infusions I receive monthly causing my worsening back pain, but I'm not too sure of that now. I had nine weeks of radiation back in 2008 for colon cancer, so I have had my lifetime supply and am ineligible for rads to my spine (which would take away the pain). Hope you find a solution.
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Sky, very sorry for the new diagnosis of the brain mets, that is my fear. Especially since I have a lesion on my spine, at the base of my neck. A very dear friend of mine (from here) was just recently diagnosed with brain mets. She has finished the WBR, and is doing quite well. Has some nausea and dry mouth with the TDM1 she is getting. But all in all, doing quite well. I will be meeting up with her in a couple weeks. No doubt there will be lots of hugs and tears.
Deanna, good luck on the posture. Mine has never been good, I think because I am tall. So I think I slouched to try and be shorter!
Nkuehl, bummer that you can't have radiation for your pain. I keep wondering when something is going to kick in for me, in regards to pain or even mets somewhere else. As I am not in any pain what so ever, feel perfectly normal. Like, how can this even be???
Suppose to get my injections this week, provided there is no hang up in getting my meds shipped to my doctor up where I live, so I don't have to make an 8 hour round trip drive to my onc's office!
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skylotus,
Sorry to hear about the progression but your attitude will help make things easier, even when they don't feel so easy. Thinking of you and wishing you an easy time with tx.
Caryn
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skylotus, I had quickly skimmed this thread to catch up on a couple of pages last night, and missed your update about the brain mets. I'm so sorry. I think that's something we all dread, but hopefully yours is small and caught very early and will respond to getting zapped quickly, and the additional zaps will greatly help with your pain.
nkuehl, sorry about your back pain and no rads situation. That's tough. Do they ever implant pain pumps for bone mets? A friend of mine has had one for years for a back injury, which is why I thought to ask if it might be a possibility in your situation. And by the way, you're the third woman I know who has had colon cancer followed by bc.
I had a CT on Friday (the first since my mets were dx'd 7 mos. ago). I may not hear anything for a few days, but I already am having to remind myself to breath today, and just about jumped out of my chair when the phone rang a few minutes ago, even though it wasn't my onc. Deanna
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Good morning all! I just skimmed through the comments, I have absolutely no concentration anymore & can't keep anyone's name straight, I will figure them out in time, till that time, I am sorry for both of you dealing with progression, horrible....
I haven't started to hunch yet, but I can feel myself sitting slumped on the couch some nights & I make myself sit up straight.
I'm not sleeping well at all, but I did a stupid thing & "googled" stage iv life expectancy. I was blissful in my ignorance & now all I do is lie awake thinking about how long (or short) of time I have.... what an idiot I am. Dee (GG)
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Deanna,
My scanxiety never occurs before or during the scan, it's the waiting for results that turns me into a ball of nerves. Hoping you get a great report!
Caryn
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Dee, IGNORE any stats you find on-line because they're old and NOT specific to you or me. In other words, they're for a huge population of Stage IV patients, some with much different stats than you have, and many with other complicating health problems, and totally ignores how well those patients took care of themselves with nutrition, exercise, etc. On top of that, any stats that show 5, 10 or more years survival includes only those who had their tx 5, 10 or more years ago -- prior to the whole new wave of genomics and targeted therapies and the current generation of chemo and other drugs. Some stats even include Her2+ women prior to the advent of Herceptin. Any onc up on his or her stuff will tell you that, and if anyone's onc isn't a lot more positive than those stats, they should be seeking one who is. So please don't feel discouraged. Those stats are outright OUTDATED!!! (((Hugs))) Deanna
And PS... forgot to mention all the new research that's been coming out lately. Very hopeful!!! Check out the research forum within the Discussion Boards for some specific posts. It seems like there have been some pretty major breakthroughs recently, and I'd be happy to recap them if others haven't seen them.
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Thank you Deanna for your words of encouragement. I haven't seen the new research, I will go & look for those threads. When my onc gave me my stage iv diagnosis I told her I didn't want stats or anything, but then my curiosity got the better of me. I know that google is the worst place to go, but sometimes in the middle of the night I can't help myself....
I'll go look right now... thx, Dee
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Dee, here are a few recent articles I've pulled up for you that give me a lot of hope that we are on the horizon of some major breakthroughs! I've also heard it said that if your onc graduated from medical school more than 5 years ago, what he or she learned about cancer tx is already outdated, as are those stats you found. So we all need to be sure our oncs are up on the most recent research and innovations for bc.
http://medicalxpress.com/news/
2014-07-bizarre-cyclin-d- believed-cancer.html http://www.rdmag.com/news/
2014/04/physicist-creates-new- nanoparticle-cancer-therapy http://www.sciencedaily.com/
releases/2014/06/140605141507. htm 0 -
Thanks Deanna, I was having a hard time finding the articles. I haven't spoken to my onc about life expectancy, but I do know that she goes to all the major NA cancer conferences, so I think she's probably up to date. It was just me reading stuff I shouldn't have been reading. You have really helped me out today, Thank you. Dee
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Deanna, I just read your post about muscle wasting, weight loss, and your back starting to hunch. I have all of these same SE since dx. I am also on Anastrozole. My husband noticed it, too. I have always had good posture and I don't really know what is causing it. If you get answers, or help from a PT please share.Gentle Hugs, Birdlady
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Regarding the back hunching ... my mother had a hunched back for years (no bc); she had osteoporosis & compression fx throughout her spine. However, never had any pain. Don't know if this is any help at all, but my guess is it may have something to do with bone density. I was dx with osteopenia (comes before osteoporosis) long before bc & took Actonel for it. Now I have a spine full of mets, so I'm on Xgeva to hopefully ward off a fx. So far I don't have the hunch, but realize it can develop anytime. I also take calcium and Vit D.
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SyrMom, At the time of my dx I had a compression fracture of the spine. I also had to have hip surgery due to mets to the femur which was about to fracture. I, too, have spinal mets. I take Zometa infusions monthly to hopefully strengthen bones and prevent fx. I take lots of calcium and Vit D at the advice of my onco. I do have some back pain, but it is lower. Hopefully the hunch will not get worse. :-(0 -
birdlady222, well, there you go, interesting! It was so strange my mother never had any pain at all, yet her spine was full of compression fx (she not only had a hunch, but walked at nearly a 90 degree angle later in life). All women are at risk for bone density issues after menopause & the hormonals and chemos also increase that risk. I'm sure I've inherited it.
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SyrMom, I've kept a pretty good handle on my bone density. About 3 years ago I had gotten into the low osteopenic range, but with the help of a great naturopath, supplements (mentioned earlier, I think), and some weight training, it had gotten back up into the borderline normal range. And all was absolutely fine until my mets dx, the concurrent muscle atrophy and the aching in my upper back. But your Mother's situation is what I keep picturing and fearing if I don't get ahold of the problem and do something about it. It must have been very sad for her. Even the degree that I have it makes you feel so old!
Birdlady, I'm not happy to hear that you're having a similar problem, but your experience helps me to believe it's from the mets and/or Anastrazole, and hopefully not a sudden plunge into osteoporosis. I am absolutely going to ask my onc about an RX for P/T, pending the results of my recent CT.
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Deanna and Birdlady..... I have the same problem. I am hunched all the time....when I look at myself walking by in a window it's like my shoulders are curved in. I definitely think it's the mets. I had spinal compressions in several places and actually lost over an inch in height. I did have one kyphoplasty (sp?) that helped with one of them, and I am really not in any pain, so I guess that is the good news. I get Xgeva shots every six weeks. I can't say that I have muscle wasting, and I have definitely gained most of the weight back that I lost during chemo. I have also thought about PT or even a brace to force my shoulders back into position and I have an appointment with the Spine Clinic that is part of the cancer center that I go to here in Denver to see what they may recommend. I am only 5' 3" and can't afford to hunch! I'll keep you posted and let you know how that appointment goes and if they give me any advice I can share. Deanna - hoping that the results of the CT scan are good, and thank you for sharing such encouraging articles. The words "life expectancy" have a whole new meaning for me now and literally make my heart stand still, so those are very hopeful.
Andrea
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Andi, I have also wondered if a brace would help. It just seems like it would feel really good to be forced into a more erect posture. When is your appt at the Spine Clinic? I'll be very interested to hear what they have to say.
A Stage IV friend posted the following article on her FB page tonight. I won't continue to post these here, but thought I'd just add this one because I think it illustrates what I mean about an abundance of important new findings. http://newswire.rockefeller.edu/2014/07/28/discov... Deanna
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Andi, Deanna, SyrMom, I never dreamed that the mets and meds might be the cause of this hunch. I am thankful to have you all to talk to. We can each talk to our doctors and possibly PT to try and stop progression. Maybe there are exercises or stretches that we can be doing.
As far as I know, there have been no other women in my family with this. I would be happy to wear a brace if it would help, and I agree with Deanna that it might feel good. Deanna, please keep posting these links, as they give current positive findings. I try to stay off unknown sites because like GG27, I read the wrong things and get myself upset.
Thank you, sisters! Please continue to post here and let us all know if you learn something that you can share with us.
Love and comfort to all today!,
Birdlady
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Ladies, one more I just got in my mailbox this a.m. that I have to share!
http://jonbarron.org/cancer-alternative-cancer-the...
I can't believe with so much positive news that we aren't headed for some major breakthroughs in tx & survival!!!
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Please keep posting the articles here. This is one of the only threads that I read with regularity. Like you I am hoping for a breakthrough. The University of British Columbia has a wonderful cancer research dept & they are apparently working on breast & colon cancer particularly.
I am hoping that the pamidronite infusions keep helping my bones stay strong. I had a bone density scan a couple of years ago & am hoping to have another one soon just to keep an eye on my bones. I am having a fair amount of back pain, I am hoping that is the anastrozole working it's magic on the tumors. Luckily I don't seem to have the hunching & other issues that all of you are having, but I believe you have been on AI's for much longer than me. Hoping for a pain free day for all. Dee
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my mum got diagnosed with bone mets this may...with a recurrence after 14 yrs...it has really come as shock as it was something that was forgotten...and she was perfectly alrite all these years after a mastectomy,chemo,radio and 5 yrs of tamoxfin as she was PR +ve...it has come as huge shock and I cannot even imagine how she must feel...
It started with mild back pain and after months of painkillers...she decided to go to oncologist.she had been getting her regular followups all these years but after the 10th year mark...she was said to be cancer free..she got a bone scan done and the whole scan lit up like Christmas tree..it was devastating...I went through a lot of forums and I found hope looking at all you brave women fighting it against all odds and thats the positivity that I gave my mum.
She was started with the hormonal therapy anastrazole...and zometa after 6 weeks and she has had improvemnt in her pain..and all praise to Allah she is working as a normal fulltime mum like before ..now that the insurance is sorted she will be getting the bone scan done soon...and we r all very anxious..about the test itself and its impact...would u please share ur experiences ? She has sclerotic lesions and her pet scan also showed bone only mets but the brain wasnt included in it.
She used to excersie regularly but has stopped now for fear of pathological fractures as most of her acetabulum was involved...that pain has resolved but she now has stiffness in the back as the only symptom...if u could guide me to the kind of workouts if any that u do?
I cannot even begin to tell you...how much these forums have helped me keep I together and not rely only on the statistics that the medical reports and researches are filled with...I hope we all continue this fight and u keep up the good work helping each other out of this trying time.
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hi ladies!!! I need prayers! I had my 6 month PET scan today. DX 12-18-13! Soooo this is first one since initial one . In January it was just in sternum, where I was having pain and surrounding lymph nodes. I had hysterectomy, rads and now 5 months of Aromasin!!! Prayers for no progression. Should get call tomorrow! I am a nervous wreck!
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Kate1974 - Keeping my fingers crossed for good news with your test results tomorrow!
However I have to ask why your dr is scanning you again so soon after radiation?
I had mets to my femur dx June? 2013 (after almost 6 months of scanning MRI, CT, PET x 2) , I had radiation in July (after BC was confirmed with CT guided biopsy) and switched from Tamoxifen to Arimidex after radiation was done.
I saw my MO in the fall (after rads and to start Arimidex), after Christmas (to check on how the Arimidex side effects were going), March (to switch me from generic to brand name Arimidex) and just yesterday for PET results and follow up.
My MO wanted me to wait 1 full year after rads to repeat the PET scan.
I got my results yesterday and no uptake ANYWHERE. It showed a lot of scarring at the original mets site but no uptake so I'm NED right now.
He wants me to repeat my blood work and see him again in 3 months.
If you don't get good results you might want to ask your MO to repeat the test again waiting a full year after your radiation.
Just a suggestion...
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Hi Marie!! Well that is a good question. My rads were in January then hyst then I started ht. I am not sure why only that he said he will do a PET scan every six months.
I am just following instructions. Do they not usually do one? Do u know what the radiated area looks like on the scan? I have often wondered. When I asked rad onc she said the way they know if rads killed tumor is by my pain levels (which it went completely away) and the pet scan. I am a dork, I just read the rest of your post, lol. Congrats on NED!!!!! that is awesome!!!!!!!
)) I am curious about my nodes! Hummmmm gosh I am happy to see someone NED! Happy, happy happy! Hugs!0 -
I never had any pain and if it wasn't for my elevated Tumor Markers (on blood work) they would not have been looking for anything.
I can't answer why your dr wants scans every 6 months and mine wanted to wait 1 year post rads...they each seem to have their own protocols. But I understand that the scan might not be accurate if there was still inflammation in the radiated area.
The area I had radiated showed up as scarring on my recent PET scan.
The PET shows uptake by tumors/lesions and my scan was all clear.
Good luck with your results tomorrow!!
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Prayers for you Kate1974! Good luck with your results!
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I've had scans 3 months from rads, but honestly, I think they were looking for something other than the radiated area. If something had shown up in the radiated area, I'm fairly sure they wouldn't have taken it too seriously.
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That makes sense Alexgram!
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I kind of fell off the radar as I ended up spending 4 days in the hospital and after receiving the two pints of blood and way to many antibiotics (it's their protocol until they rule certain things out) was released and I was unsure if the oncologist would go ahead with the chemo today. After the transfusion I felt 100% better and the yellow in my face and eyes has greatly improved. It's been such a bumpy ride to start I guess I was just not thinking I would hear good things - I was wrong: markers have been steadily going up and peaked at beginning of July - they have finally quit going up and are actually 50% what they were at the worst in January. Second is that my liver function has increased by 50% compared to it's worse. I just wanted to burst out in tears. So I was able to have my chemo today (which he thinks I'm going to be able to tolerate more because my blood work looks that good. Thank you to those who would not let me think nothing other than it was going to turn around and that the start was just a really rough one. The oncologist is still taking one week at a time and I'm great with that.
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