Bone Mets Thread
Comments
-
I'm scared...went overboard on exercise 2 months ago, helping in grandson's pe class, lifting kids on a rope, swinging them, lifting them down. Pain in lower, right ribs, dx as floating rib inflammation. Dr said 6-8 week recovery. None in sight..pain mostly at night for a while, now non-stop. I already had a bone scan planned for next week-4/1. Luckily, just saw the dentist & had a crown replaced, all other teeth fine. Am I over-reacting? Just seems w/not over exerting, it should be better, not worse. Silly ?... do bone mets feel like? Never felt mets filling up my liver so....
0 -
RonnieKay, my bone mets hurt, sometimes sharp and stabbing, other times more achey, and other times whole body pain like inflammation. Sure, bone mets introduce themselves as unexplained pain. For me it was like a broken arm. However, you may just be slow healing. It's great that you have a bone scan scheduled so soon. Then you will know.
0 -
SyrMom,
I also have the muscle spasms. Onc prescribed an extended release potassium that has really helped. I still get a few at night, mainly in my back muscles, but it is lots better than when I was trying to manage it with over-the-counter potassium supplements.
BTW, a bit of Ativan also seems to help. I take 1 mg if I have more than three bad spasms in ten minute period (very rare), and it relaxes the muscles.
0 -
Ronnie, as you know I've been going through something similar for the past 4 weeks. The pain is settling down some, mainly due to combination of titrating dose of steroids for inflammation, ibuprofen, and muscle relaxant (narcs did nothing for pain). Had a MRI total spine & bone scan - yes, new and progressed mets, no surprise considering 2 recent chemo failures, but I really feel pain isn't all from mets. I'm very "spasm" prone & it's made worse with chemo. So I watch my movements very carefully now and how I do stuff. Really not suppose to even vacuum, have temp help, not sure what I'll do going forward. Was offered some additional, mild radiation, but temporarily declined as I really need to work at keeping hemoglobin up for the chemo - the liver will kill me faster than the bone mets.
Hang in there - totally understand the fear - I was terrorized by this last incident & live alone, so it was real life altering.
0 -
I know you've had terrible spasms, SyrMom...sorry to hear you too, Blaine . Three in 10 min...shoot me now! I had cramps that came on fast & let up fairly quickly on Navelbine, but were somewhat painful & upsetting. I had to tell myself to relax & not panic. I can't even fathom how awful the spasms are & there's no doubt chemo-related. Thanks for the info all...dunesleeper, as most of us, I'm hyper aware of my body, what feels right, what doesn't. This carrying on is very different & I've had weird feelings in my legs. I keep hoping femara...but why 4 months after starting it? My TM's have been good & have been right-on w/the 3 dx. Does calcium count reflect bone mets? Dr Google said that. Mine are fine. I just hate feeling lkke a hypochondriac...but then I think that if something was growing & I let it slide, I'd jump off a cliff! The strength everyone musters is beyond belief. SyrMom...I'm right w/you thinking about keeping the liver doing it's job. Just hoping your next chemo does the job.
0 -
Ronnie - my leg pains with Femara didn't start until several months into the process. I was sure I had mets; had a bone scan - no mets. Then got a bunch of new pain. Bone scan - no mets. I told my MO my hip hurt in the back. He had me stand up with my back to him and he poked me with his finger and said "right there?" Yup! Right there! He said, "Femara". After a year, I got horrible finger pain. Then it got better. Comes and goes in different spots, but still stable according to blood work, CT scan, and bone scans. And I do feel like a neurotic hypocondriac.
0 -
Hi, Ronnie ~ Yes, a high calcium count can reflect bone mets because as bone breaks down, excess calcium is dumped into the blood. As far as your earlier post, it sounds like you really overdid it on the playground, and I'm hoping it's just whatever you did there taking a long time to resolve. In my case, one of the first things I experienced was severe aching in my lower back/hips that I initially chalked off to switching from wearing flipflops every day to boots. By the time my mets was discovered a couple of months later, I was describing the pain in my ribs and back as aching or burning pain that screamed for heat and/or pressing against a chair back for relief. But from what I've read, pain sensations can vary a lot depending on which nerves are involved, and even then the sensations can travel and not actually be coming from where you think it is. When I ended up in the ER shortly after I was re-dx'd, I'd had pain shooting up my leg for 3 mos., so that it was impossible to put my weight on it. As it turned out, I had fractures in my femur and pelvis -- not my lower leg at all.
Praying Monday's bone scan is clear!!! (((Hugs))) Deanna
0 -
Ronnie, my problems with Femara didn't show up until almost 5 months after I started taking it after my first dx 9 years ago. Lots of different musculoskeletal aches and pains and an emotional component as well. Short temper, always edgy. I had been on tamoxifen for 3 years prior, and ended up going back to it. I have extensive osteoarthritis, and the Femara made it so much worse. Didn't realize it was the Femara until I found a website called askthepatient.com. It listed many drugs and patients could post their experiences. I had almost every single problem. I stopped taking it and felt much better within days. If I had to take it again, I would be more proactive in dealing with the SE's. It would be good if you could find out if that's the problem. It just eases the stress if you can understand why certain things are happening. Knowledge really is power! I hope you get an answer soon.
Have a good day, everyone!
Sharon
0 -
RonnieKay, I also had rib pain for the longest time but not constant. It may have had to do with Femara, I thought, because the ribs have a lot of joints and my other joints hurt, too. My scans never showed mets after the initial one. Good luck on your scans!
I just had a CT scan today because I seemed to have injured myself after a mammogram (too many contortions for a flat chested girl). The onc mentioned something about C6 cervical spine. I'm just hoping it's not progression nor some permanent nerve or spinal damage. I see him again tomorrow for the results. They decided at the last minute not to give me a contrast agent as I had an allergic reatcion the last time. I hope the pictures will still be good because I'm not getting into an MRI, too claustrophobic. I have to say prednisone, which I took as premed for the CT, has helped a lot with the pain.
Blainejennifer, thanks for the tips on the muscle spasms. I'll have to ask my onc for a prescription for Ativan as mine are long expired.
0 -
dune. Let her rip
Dlb. - holding your hand for scan anxiety
I am back in the hospital AGAIN. Same thing. Uncontrollable vomiting and diarrhea. Very dehydrated and weak. High white count. Infection disease dr coming by tomorrow for consult. So hoping to find the cause and fix it.
Hugs to all. Sorry to sleepy to take notes to respond to all
0 -
My goodness Patty, I am so sorry to hear this! Get well soon and try to keep those spirits up. I am wishing you the best I have to offer. Myra
0 -
Just what you don't need, Patty! An infection, yikes. Hope you get better soon and can head back home.
I forgot to ask about Ativan, but I was too distracted by the good news that my scans were clear. No tumors or spinal injury causing compression. Just muscle Inflammation from the strain of my contortions. In the meantime I still have to take cortisone and an NSAID.
Dune, yes, let her rip!
0 -
Hello to all,
Patty I'm so sorry to hear you're back in the hospital. Prayers and hugs going out to you. You must be exhausted from this and I'm praying the doctor can figure out what is causing this.
Deanna, sending positive thoughts for your upcoming scan.
Heidihill, praying your scan results show nothing serious at C6 and no progression.
I've been laying low the past few days. Letrozole is really doing a number on me as far as pain goes. The Meloxicam my onc prescribed is not helping. My family doc faxed me a new prescription for Celebrex, I hope it works. My tumor markers dropped one more point to 16 so I'm happy about that and my scan shows my mets are healing so if I could just get rid of all this pain in every joint of my body I'd be a much happier girl. I'm getting extreme muscle pain too. Well all of that on top of my MS, I'm not functioning very well at the moment.
Praying things get better for all of us. Hugs, Annie
0 -
Heidihill, yay great news! We were posting at the same time. I'm extremely happy for you! You amaze me and I'm just elated about your good news. Wow you've been at this a long time and you're always so encouraging!
Hugs, Annie
0 -
((((((Patty)))))) Keep us posted! And prayers that they get whatever is doing this to you figured out! Were you free of symptoms while you were home? Are there really good doctors at the hospital you're in??? It sounds like they may need some new thinking on your case, so I just hope and pray that will happen, even if means demanding they consult with outside experts or send you to a more major medical center, if necessary. Deanna
0 -
Annie, really hope the pain getsunder control soon. I take Celebrex, along with Oxy, and I can really tell the difference when I forget the Celebrex. It helps control all the inflammation which the opioids are not as good at.
Patty, oh my goodness. You poor girl. Whip those docs in shape and tell them to get you better! So sorry!
Heidihill, great news!
I'm 2 days into cycle 2 on Ibrance and Letrozole. It's not as easy as it seemed the first 2 weeks, but it's not awful either. Keeping blood counts up is the issue and fatigue and weakness come with it. Still, better than feeling nauseated every moment of the day in addition to tired and weak, right? Hopefully, will find out it's working in the next couple of months.
0 -
Yes, Heidihill, great news on your scan! (Sorry I missed you and others earlier, but I was so surprised and focused on Patty's news.)
Annie, hope the Celebrex works for you! And Romansma, I hope things get easier this cycle for you. So you don't take Ilbrance every day, just in cycles?
Not sure how it compares to Celebrex, but my joint aches (from Anastrazole at the moment) are hugely improved with the supplement curcumin. It's not an instant fix -- you may need to take it for a couple of weeks to get its benefits, and I think some brands (especially LifeExtension) are better than others. But I have much more joint pain very quickly now -- within a day -- if I don't take it. Anyway, just thought I'd throw that out there again if it helps anyone. I've also found in the past that taking my A/I at night causes fewer joint pain issues, but I don't sleep as well when I do. So I've gone back to taking mine late afternoon if remember, and have been sleeping much better -- except for some rib pain and scanxiety this week.
My CT is 11:20 tomorrow a.m. Any good ju-ju. as a friend of mine says, would be appreciated! Not expecting to hear anything until next week. If the phone rings sooner, well you all know will know the fear that comes with that...
Hope everyone else is doing well today! Deanna
0 -
Good vibes headed your way on the scan, Deanna! I agree on the curcumin, I used to take it. I just want to put a little warning out with it that you should make sure it's ok to take with whatever treatment you are on. I know it's not good with certain chemos. It has blood thinning components, so anyone on certain other drugs should talk to their doc, too.
0 -
Good luck on the CT Deanna! fingers crossed for good results
Patty, can't believe you're back there again. Hoping your Dr's can get rid of this infection.
Hope everyone else is doing ok. Cheers, Dee
0 -
Important point on curcumin's blood thinning capability, Romansma! Thanks for catching that!
0 -
Patti, so very sorry to hear you're back in the hospital - hope they can get to the bottom of this! Any mention of an Infection Control Specialist?
Congratulations, Heidihill - a happy dance for you.
0 -
yes they are sending an infectious diseases specialist by today for consult. Really hoping he can think outside the box and fix this problem.
Deanna - good vibes heading your way for ct
0 -
Deanna - good vibes to you on the scan.
Patty - NO!!! hate that you're still dealing with this! And sending good thoughts to your doctors that they sort this out.
Great news, Heidi!
Annie - I hurt like mad with Femara, but the Celebrex helps me a lot. and the side effects come and go. For a couple of months, my fingers were in agony - no good since I have to type a lot (writing reports, etc). And then my spine and ribs. Then my lower legs and feet. Then back to the hands. Just goofy. I have days like Sunday where I have virtually no pain except my arthritic knee. Then the next day I'll just ache all over. Hoping and praying that you get past the pain as it looks like it's working for you otherwise.
Romansma - hope things get better for you soon and that this drug combo kicks your cancer to the curb!
Hope everyone else is doing well. I'm hopefully meeting up with Carpe Diem and her husband next week. Quite exciting!
Hugs to all,
Terre
0 -
Thanks to all for sharing your bone expertise! I don't often share these kind of aches with many "outsiders" (meaning anyone not on bc.org)..as much as I want to, for a hug or an understanding "I'm sorry you're scared" comment...but it's usually more of the "it's nothing." I understand it's because they don't want it to be anything. You've been there, done that, so when I can look at this from your experiences...even though it may be different in some way, I'm relieved and know I can face whatever it is.
Heidi...the best news!!! I remember those contortions..hold on and turn your head and chest 180 degrees but keep your boob here! So glad your dr didn't hesitate to scan & it's clear!
Patty...so sorry you're going through such a rough time, for the second time! Have they said what type infection they suspect? You must have had every test in the book...e coli??? Hoping they can pinpoint it soon & you'll be able to eat & gain strength. Hugs!!!
KiwiCat..when I did femara before, my ankles hurt for 4 months & then the pain left. You're lucky your onc did scans for your pains. My vision has tanked so badly in the last year that I've been scared of brain mets...and haven't had a brain scan since 12/12 mets dx. Both oncs have said there'd be other symptoms. This scan was already set to see about bone density, thank goodness.
Sharon...I read the info on femara first time around & thought I knew it all this time. Ha! If these are femara gifts...I'd regift...hmmm, maybe not! Anyhoo...a bit of relief knowing it may be delayed reaction. The scan will definitely make it more tolerable...even though I know I'm not myself w/the pain. I've gained 10+ lbs since starting back up on it in Nov (22 mos of chemo & eating so well, I lost 36 lbs). I have to be so careful...it makes me ravenous (which is why I needed to lose 36 lbs!).
Deanna...I do have some aching in my hip, on the same sore rib side, but it feels more like a weakness & there's not the stabbing pain, thank goodness. Good lord, I can't imagine the broken bone pain. I remember reading you'd had the breaks...and looking at your picture, I thought, "She should not be in pain!" Such a lovely picture. You're so right that nerves can make it difficult to pinpoint the pain. When the gp dx floating rib inflammation, he had me do all sorts of bends/stretches & nothing ached then. Then he used the tuning fork, hit the spot & I nearly cried...hurt so bad. I was satisfied w/the dx (especially after the pe activities!)...but expected it to heal. Ugh. I've always taken femara at night, hoping to minimize aches, but realized after sleeping so much better on chemo, that it interrupts my sleep. I'm bad at remembering to take my calcium at dinner, since they said not to take it w/femara at bed, so I know I'd forget femara! Please tell me if your sleep is better taking it earlier.
Annie..woohoo for dropping TM's! Is it your 2729? I love low numbers & each time they tell me it's in the normal range, I say I like LOW normal. Bc & MS...I would say you're functioning quite well, sister! I may be asking more about Celebrex!
Romansma...Ibrance is taking over for xeloda? Hope it's the one that works wonders w/out harsh ses! Thinking of you!
0 -
Thanks RonnieKay. You mentioned vision problems..I feel like I'm going blind sometimes. Femara side effect? Any info appreciated. I was worried about brain and liver mets because of headaches, vision and dizzy issues, and nasty liver pain. However, all clear, so probably just side effects.
Hugs to all,
Terre
0 -
Terre, I can't wait to read about your meeting with carpe diem. That is just so cool! I don't suppose anybody here lives in Austria so I could have a meetup in May. No? OK. Next vacation!
I have been feeling much better since the radiation to the bones in the pelvic area. That plus the coming of Spring has me wanting to get out and play a lot. I met some ladies and walked in the gym of a local senior center. Then we went to Panera's for lunch. That was yesterday. Today I ran around like a lunatic, pretending to be a transformer, killing bad guy transformers and rescuing good guy transformers. I got all drippy, so I guess that counts as exercise. I bought tickets to the Cirque de Soleil in July. I'm checking out concerts at Pier Six. Fogherty is there in June. I will go to any that strike my fancy.
Mom's calling me for dinner, so I must go. I'll tell you about whatever mischief I get into tomorrow.
Patty. I just don't know what to say, but I got ya, here, in my heart.
0 -
Such good news, Dune! Hooray!
0 -
Terre, I can totally relate to what you're saying about the pain with Femara and right now it's making me hurt in places I've never had pain. I suddenly have knee problems, ankle problems, my hands are so stiff I'm constantly dropping things. Even my feet hurt and I feel like I'm 95. Honestly I hope the Celebrex is better than the Meloxicam. Does it upset your stomach at all? Thanks for your input, I feel a little less crazy especially when you described how the pain changes.
RonnieKay, thanks for your kind words and I'm praying you feel better very soon and get to the bottom of your pain. The tumor markers that work for me are the CA125 also a marker for ovarian cancer. The others for me all show in the normal range. I started out at 125 and climbed to 137. After 3 months on letrozole they dropped to 68. I was ecstatic. They've continued to drop and now last month's were 16. My pamidronate infusions have been changed to every 2 months now to reduce the chance of side effects. Apparently it stays in your system for a long time. I've also gained weight on letrozole, and struggling to get it off.
Dunesleeper, I'm so happy to read your post and knowing you're feeling better and getting out and about. You're pretty awesome, keep it up! I try to get into a little mischief everyday too, it's alot of fun!
Patty, can't stop thinking about you. Hope you're feeling better this evening. ((((Hugs)))) and prayers for an answer to what is causing this.
Hugs to all, Annie
0 -
Annie - the Celebrex isn't as bad on my tummy as a lot of the other anti-inflammatory drugs were. I take two prescription strength Prilosec equivalent pills a day - morning and night. And if I have really spicy food, I pop a Pepto Bismol caplet (I get them brought to me from the US - it's what I always ask for when someone comes to NZ...that and Nyquil). I also have the equivalent of Tums if it gets really bad. That said, I don't really have problems with it; no more than normal for me. Hope it helps! It does make you feel like you're losing your mind or having mets all over...
Patty - hope you're feeling better and they've figured it out and you're on the mend!
Hugs to all,
Terre
0 -
Annie, I've never had tummy problems with Celebrex and I've been on it for a while now. Hope it helps.
0
