Bone Mets Thread
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I'm a little conerned about something I'm hopeing some of you have had. I think it's heartburn but like I've never felt in my life! I can't even drink water, my whole chest catches fire. My onc gave me prescription Nexium and that seems to help but just a tiny bit, all I've been able to eat in the last 4 days is a cup of mashed potatoes and slowly drink Ensure.
I've been in radiation now for 3 weeks, my spine, head, & hips, I assume that's what's caused this since I've never had heartburn in my life until now. Anybody else have this? Could it be something else? Most importantly, will this go away??
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Y’all, it’s my week off chemo and I can barely walk. Honestly, I’ve felt better since starting abraxane than I did while on Kisqali and aromasin. Decadron took care of the terrible muscle aches, and there have been no other side effects. Until now. I fell last Thursday, and knew to take it easy the next few days as I had an achey back. But come Sunday night I was awoken with severe lower joint pain... hips, knees, ankles. Advil took care of that on Monday. Then Monday night was worse. I ended up calling MO for pain meds at 0530 Tuesday morning. What a sweet relief it was when my mom brought that rx to me. Now my legs just don’t seem to be improving. I’m not exaggerating when I say at times I can barely walk. I’m in so much pain.I started chemo four weeks ago... could this really be a new side effect? I’m worried.
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Swess, I really don't know but I'm sorry you're in pain. I know, the pain from bone mets can be excrusiating
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Found out last month I have extensive mets in spine, legs, hip shoulders,sternum and more. over last two months the mets have taken away my mobility. There is so much nerve compression, I am truly afraid to turn left or right or lean forward. The met in neck causes my head to feel wobbly and dizzy. I struggle with everything I do, from getting to upright position off the sofa when I wake up. I can no longer walk up the stairs to my bed, something I did just few months ago. I guess my bone mets did not progress slowly. I had PET scan last September which showed a slight uptake on one spine bone. Needless to say I was shocked when mid March I got the report of extensive mets. now on Ibrance,xgeva,faslodex.
I seem to not be able to stop losing weight. my skin has become leathery and yes I look and feel like a 90 year old. There is pain in joints and muscles and many nerves. The nurse who came to my home for a blood test yesterday asked if my husband was my son. Has anyone come out of this situation and get better? or is the cancer already victorious? I have two children still in school and hate seeing them seeing me spiral down. is there really hope for better cause it sure doesn't feels like it. is it really true that bone mets won't bring one to the end? not a good day for me today.
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Peaches, Rads to that area can do a TERRIBLE number on you, I'm sorry to say.
Do the best you can with the Rx meds. My RO gave me a proton pump inhibitor. I know those are BAD, but if you only take them short term, they can help.
I'm sure other ladies will chime in as well.
Hugs, L
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Hope, don't let anyone tell you bone mets are "the good mets."
No, you probably won't die from them, but they can make your life a living hell. I have fecal/anal incontinence now because of bone mets' nerve compression in my lower back. I have to wear depends and plastic pants to deal with leakage, etc. Yep, that's my life. I'm only in my 50's, but I feel like a 90 year old woman. I had some radiation, but it only helped with the pain, not the damage that my nerves have already sustained. I have to wear a hip/thigh brace all the time now because the pain is pretty bad, and I want to maintain bone integrity and not break anything.
I'd contact your MO ASAP. I think some radiation is in order to at least bring you some more mobility and QOL. You're too young to be suffering like this.
Hugs to you,
L
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hi L, I got a bag of lady diapers too because sometimes just too much pain to go anywhere. makes me want to cry to hear about your pains and the living hell you refer to. I did see a radiologist and he said it will only help with pain. and since I have mobility issues and was starting new treatment, I thought I'd give ibrance combo a try and wait. now i wonder.
hugs back to you L
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BigPeaches, I had absolutely horrible heartburn when I had radiation to my neck area. I described it exactly as you did...felt like my chest was on fire every time I swallowed anything. Nothing I took helped much at all. I lost quite a bit of weight and have some residual scarring in my esophagus, but I am happy to report it does go away...slowly but surely. Hang in there. I was completely miserable so I feel your pain.
Swess, I am so sorry you are in such pain. I'm not sure I agree with the RO, though. I had a pretty big tumor in my hip, painful and definitely affecting my mobility. I had it radiated and not only is the pain MUCH better, I can move much better also. Pain related? Who knows but I haven't been able to cross my legs for years and I can now. It's my new party trick and I make everyone watch, including my MO. My RO told me the bone begins to heal after being radiated. Whatever you decide to do I hope it helps the pain ease up...and quickly. Do you think you may have injured something when falling? Maybe worth getting that checked out.
Lita, I've been hanging around here for almost a year now and following your story. You are one tough lady and I admire you greatly. I believe we are about the same age and my heart breaks for all the crap you have and are going through. Just wanted you to know there are many, many people thinking of you and pulling for you even if we don't always speak up.
Hugs to all....E
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Bigpeaches that sucks but at least as u said u have a plan in place. I went to the Onc yesterday and he is 95% sure it has started in my bone marrow so I have been put on 2 drugs Everolimus and Exemmestane, I hope they don't knock my white cells around too much as I do work part time and are involved with the public within a state government . I am not happy about it all but I did get 18 months from Letrozole which is good considering I had extensive bone mets. The Onc said I may have to leave work but I am not ready to hang my hat up yet as I love working but at least I have a flexible arrangement .
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Lita,
I fear that I struck a nerve when I asked my question about bone mets several days ago. I sure hope you don’t think I was being insensitive. I am fairly new to all of this stuff and look to this group for answers that I can’t seem to cover with my oncologist. I also have extensive bone mets, and I am no stranger to pain from them. My apologies if I offended you.
Laurie
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Booboo1....no offense taken at all ;o).
L
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Lita - Just dropping in to let you know I am huge fan and I think of you.
hugs everyone. Bone mets not my biggest problem at the moment, but i am reading.
>Z<
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I’m very sorry to hear about friends hear having pain. Please ask your team for help.it’s not possible for all but if you have access to a warmed pool I think might help with mobility and some pain relief. It’s a vicious cycle for me at times: i hurt so I don’t move much, but the less I move the more I hurt.0
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just popping in to check on everyone. Seeing so many new faces.
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hi, just clerking in hoes it gowi
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Well I'm glad I'm not alone on the heartburn, I've lost about 10 pounds in a week because I can't even swallow water without it hurting. I hope this goes away soon.
Hope, the whole "bone mets are good mets" makes me want to scream (not at you lol) Maybe it's more treatable? But the pain from it can be overwhelming. My sister in law has lung mets, not to discount her at all, I sure don't mean to do that, but she is in zero pain from it. Mets in any shape or form, just sucks and each instance has it's own bag of crap that comes with it.
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Hello Ladies. Popping in with news.. I didn't manage the 2nd round of Ibrance @ 75mg as my counts were too low on day 10, so that's 3 aborted tries at 125, 100 and 75 and one successful one at 75. I've been on 4 weekly Faslodex and Xgeva with every 12 weeks Zoladex. I stopped on the Sunday and got a fever the next day..must have been brewing something.. I ended up in isolation in the hospital for 4 days on antibiotics and then 2x neupogen to bring up the white counts as they fell quite low (ANC 0.2).. I felt fine though! I had my diagnosis in Dec, extensive bone mets - too many to count... had 10 x radiation to my hip as that's where the pain was - radiation fixed that :-) I had a PET scan this week and my oncologist and everyone that has looked at the scan are amazed - about 90% of my bone mets have cleared up - just disappeared. I can't say that I have done anything different - everything in moderation but I do drink alkaline water most of the time.. So I wanted to share this with you as I know I like to read good news and positive outcomes. Long may it continue! My onco suggests Ibrance on one week off the next to see how my white counts cope... sending positive vibes to you all xx
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Fantastic news JoT!!!
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Heigh ho Heigh ho it’s off to rads I go, to save my life with a cyberknife, heigh ho heigh hi heigh ho....
Have a nice day everyone.
Sunset.
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lol, I love the song!
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hahaha...singing along Sunset... love your song!!
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Snow White and the Seven Dwarves is my favorite Disney movie.
Sleeping Beauty #2, Pocahontas #3, Lady and the Tramp #4, Cinderella #5
L
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Hello,
My name is Ryan. I posted almost a year ago on behalf of my mom. She was diagnosed with lobular breast cancer, doctors believed it was stage 3, put her on a clinical trial, then found out a few months ago that it spread to her bones. Very shocking blow to her and our entire family but we are taking it one step at a time.
She currently takes Anastrozole and feels no side effects but we are aware it causes osteoporosis. She feels great right now but her oncologist is recommending she start taking Zometa to strengthen the bones, but the one major side effect is dissolving of the jaw, which they assured us is rare, but still sounds very scary. My mom does NOT want to take it for that reason alone, but if she doesn't take it she may risk eventual fractures and bone pain.
Has anyone taken Zometa and if so have you experienced any side effects or problems with your jaw?
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Hi Ryan.
I've been on Zometa for a year now and have had no problems at all. I was told the same thing and was hesitant, but so far so good!
Best of luck to your Mom. She's lucky to have you!
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Hi Ryan,
I've been on Somers for a year. I've had no problems. The first treatment is a little rough (feel like you have the flu the day after). If she takes a Claratin the day before, the day of and the day after that doesn't happen. The oncology nurse have me that tip. The infusion takes 15 to 20 minutes.
Hope that helps.
Mary
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On Zometa for 2 years now. No problems. You can also take Benadryl if you want a cheaper alternative.
L
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Oh girls....I haven't been on for a week and I've just read the last two pages of posts with my heart breaking but still determined to remain optimistic for all of us.
Lita...you're such an inspiration for me with your down to earth attitude to all your challenges.
I can't remember all the names but today, reading the posts, I can see so many of us are having a real struggle to keep our spirits up but we are all managing to do so in our own ways.
I often muse to myself "if only people knew what this is really like as they go about their day, imagining that all we need to do is pop a pill or two and lie in bed amusing ourselves or sleeping. If only they knew the reality - the struggle to feel that there's a point to life, how to make our lives meaningful still and to feel that there's a good reason for us to go on, but we have to keep putting one foot in front of the other for the sake of our loved ones and not only that but try to keep a smile on our faces so that they don't feel downhearted etc etc etc". I'm not being bitter, I don't feel any bitterness at all. I just wish people had the slightest idea of the pain, lack of dignity, debility, disability caused by mets to the bones. Since i started writing my blog, I've had people say to me they had no idea of the magnitude of what Stage IV entails. I don't blame people for not knowing. I had no idea of what I was heading into when I read my first report that declared in red font "metastatic breast cancer". I was diagnosed de novo. Not the slightest clue that the easiest part was the bilateral mastectomy!
Patty Peppermint...it was good to see your name crop up.
To the newbies and Ryan I send love and hope.
I get my scan results on Wednesday. Bit worried about an area on my sternum that's very painful. The mets to my spine, hips, femur, neck, shoulders and sternum have been stable in all my previous scans so I'm hoping it's nerve regeneration.
Hugs to everyone
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hi Ryan - I’ve been on Zometa for 4 years with no issues. Osteonecrosis of the Jaw (ONJ) is “rare” but still areal possibility. There are some wonderful women here who have had ONJ so hoping they will chime in to allay some of your mom’s fears.
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Hi Ryan, I have a mild case of ONJ. We found it when I had a tooth pulled and it would not heal. Eventually, small pieces of bone started to flake off and pushed through the skin. Finally, the skin closed over the bone. Every now and then a tiny piece of bone pops through. I just go to my dentist and they pull the piece out. All is well then. My oncologist will not put me back on Zometa. If I had to do it all over again, I would take Zometa until jaw issues present itself. My bone mets are doing ok, but I was able to get a couple of years dosage on board until the onj showed up. Sometimes the fear of the unknown is worse than dealing with the issue. I know you and your Mom will discuss all issues and will be able to make a decision she is happy with. She is lucky she has someone like you to find out information for her. Your love shines through.
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Ryan, your mom should have any major dental work (root canal, or anything below the gum line) and a good cleaning before she starts the Zometa.
Bisophosphonateslist Zometa can help slow progression of the cancer in addition to being strengthenig the bones.
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