Bone Mets Thread
Comments
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Thanks, everyone. I wasn't aware of the thread about chemo. I'll check that out. I was just puzzled because I was sick and then okay and then sick. That seemed weird. I plan to give my oncologist a call tomorrow.
This is all so new to me. I've been healthy all my life, never had to take pills, never went to the hospital except for a slipped disk and childbirth. No surgeries, not ailments. Nada. Now I'm dealing with all kinds of stuff. I no longer know my body or what it's telling me.0 -
Carol we have pretty well all been there and done that.......you will come to terms with it all and get to know your body and what it's telling you once again.
Hang in there.
Love n hugs. Chrissy
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Is anyone who is treating at Hopkins aware of the new cMethDNA test for monitoring response to treatment that was just announced? I am wondering if they are going to do a "clinical" trial and if so how one might volunteer to be followed. I would not mind giving blood samples for this one. It sounds very exciting.
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Just got the results of my last PET/CT scan and the bone mets are stable, lung mets are gone, but liver is a disaster area. Glad bone mets are stable even though I am still in a lot of pain most of the time especially the 2 or 3 days after my Zometa treatment. I did discover that if I have them slow down the infusion to 1 and a half hours I do not have the days of extra pain. Yes, it takes longer but for me having less pain is worth the time. My onco has also switched me from Xeloda to start Abraxane on the 14th. The Xeloda was awful for SEs and I wound up in the hospital for 4 days then had to have 2 seperate blood transfusions. I have not heard of anyone having an easy time with Xeloda. My onco says he will not give it to anyone else unless they request is and it is a last resort.
Anyway, things are finally looking up for me for the first time this year. I just hope I am not allergic to the Abraxane like I have been for so many other drugs. My onco had some DNA testing done that has shown what I may have a reaction to and what may work. I am not sure if that will make a difference but heres hoping.
Hope everyone is having more pain free days than pain filled days. Thake care of yourselves and do the reseach on the durgs you doctor prescribes for you. It never hurts to be prepared for a discussion with your doctor about your treatment options.
Joy and blessings,
AJ
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AJ I'm so happy for you that your lung mets are gone and the bone mets are stable! Boo to the liver not following suit but hopefully the Abraxane does good things for that.
I know a few women personally who are on Xeloda and other than the hand/foot thing are doing very well with it. One has liver and brain mets and her last onc appointment which was only a few days ago everything is stable and has been for a year now. Each of us is so different in our reactions to the different meds and chemos that it really comes down to trying everything to find what works for us.
I am getting sorted for my second knee replacement scheduled for the 31st of this month and as of right now, everything is organised and it's just a matter of waiting for the day to roll around.
Nicky, I hope you are doing well........there have been a few enquiries about you on the Not stage IV but Questions thread just checking on how you are as you have been missed.
Hope everyone else is doing well.
Love n hugs. Chrissy
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AJ - glad for the good news! I had my zometa injections done over 3 hours and was still achy and yuck for a day or two after. Can't imagine how ick it would have been if it was faster! Sorry your liver is misbehaving and hoping the new meds kick the mets to the curb.
Chrissy - I'm almost jealous of your knee replacement, but I got a new antianflammatory and boy does it help!! I have very little arthritis pain and it doesn't upset my tummy as bad as ibupropen. Wishing you good luck with the knee surgery and a quick recovery.
Best of everything to all!
Terre
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sorry girls skimmed..didn't read everything . Amy and toe pain. I have left foot toe pain and cramping. Weird cramping. And pain changes from stabbing to achy to cramping.,they tried to give me zometa slower . Said that might help..not so much . I a sure it is some sort of neuropathy that comes and goes. I am just happy it is not there all,the time.
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Hi ChrissyB and KiwiCatMom! Chrissy I hope your surgery goes well with minimal pain. Kiwi, what anti inflammatory are they giving you? The only thing that works for me is ibuprofen, but it upsets my stomach so much that my Dr's don't want me to take it. The pain is unbearable at night.
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Got the results of my latest ct and bone scan. Bone mets are stable. But my mri shows that I have another compression fracture in my spine. Thankfully there isn't any spinal cord involvement. I already have two wedge-shaped compression fractures in my spine and several other fractures. Onc says nothing can be done for me, my bones are too weak/eaten away and just be aware of spinal cord compression. It's knocked me for six. I thought when I was stable and on zometa that my bones would be stronger. I didn't know that my vertebrae could still fracture so easily and unexpectedly. I'm scared now of losing mobility, becoming incontinent, all the things I dread.
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Susan3 - thanks for your response - that sounds a lot like what I have/had. It was after the Zometa and seems to be a comes and goes kind of thing too- it's doing fine now. I'm guessing it's a mild neuropathy too. It's good to hear from someone else with what seems to be the same thing though.
Aoibheann - So sorry to hear about the new compression in your spine. Sending thoughts and prayers your way and hoping that it doesn't get worse. I also hope you can find some peace from the worrying about it too.
Hugs, Amy
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Aoibheann, Zometa, along with all the other bisphosphinates, is good at strengthening your bones but can make them more brittle if you are using it for a long time. I don't know how long you have been using it but it is possible this could have been a factor in your new fracture. So sorry that you have another and can quite understand your fear. Those sort of results scare all of us as they rob us of our dignity.
Hopefully it won't come to that.
Love n hugs. Chrissy
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Aiobheann, so very sorry to hear about the disappointing news! I would fear the same. I hope your weekend is a good one.
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Thank you ladies for your kind thoughts. Chrissy, I've been on Zometa since Sept.'12, every month til Sept. '13 and every three months to date. I hate this disease, the goalposts keep moving. I wish I knew what to do to help myself.
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Aiobheann,
I don't know of it would make any difference, but what about xgeva instead of zometa? So sorry you are going through this now. You are so right - the goal posts are constantly moving (dammit!)
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aiobheann,
Sorry that the Zometa is so hard on you. I had 16 Aredia infusions. The first two gave me flu like symptoms and then things got better. They did worsen once when the infusion was given too quickly. Perhaps, as mompsych suggests, a change might help.
Caryn
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Thank you for the suggestion. I'll certainly ask my onc about whether changing bisphosphonates might improve my bones. I feel like an accident waiting to happen at the moment.
Another thing that kind of freaks me is that both the bone and ct scan showed the bone mets were stable yet didn't pick up the compression fracture. I mentioned increasing pain and they were just going to up my pain meds., thinking I'd built up my tolerance, and it was sheer luck that the onc decided to send me for an mri.
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To my knowledge, I don't have bone mets, only mets in my liver. Currently, I'm on Kadcyla, which seems to be knocking back the liver tumors. My question is about pain I have in my lower back when I walk around for very long. The pain stops the second I sit down. I'm wondering if it's probably caused by the Kacyla, or could it possible be bone mets. My understanding is that mets wouldn't stop hurting immediately when I sit down, but I don't really know for sure.
I'd appreciate any information to help me understand what's happening. I can barely go shopping because the pain gets very bad very quickly. I take Tramadol and Aleve...don't want to use narcotics for this.
Thank, Trish
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I have bone Mets in remission in my right hip bone. I also get bad back pain after walking or being on my feet it also goes awAy as soon as I sit down. I don't have Mets to my back its osteoarthritis. Maybe ask your Dr if that could possibly be causing your pain. I recently started taking Naproxen which is helping a lot.
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Macy, thank you for your reply. I guess that could be a possibility. I'll definitely check with my dr. I've also been taking Naproxen/Aleve, and it seems to help a little. Maybe I need to take it more consistently.
All the best to you.
Trish
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I use fentyl patches for pain & oxycodone for break thru, working for past 9 months
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Trish03,I take prescription strenght Naproxen. I started taking it last week on a suggestion by someone on fb. It really helps a lot. I had tried the Aleve and like you it worked a little, but the prescription is much better. Hope you find something that works for you.
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Macy, thank you so much for the suggestion. I'll contact my PCP for a prescription. It's definitely worth a try.
All the best to you.
Hugs, Trish
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You are so welcome Trish, I sure hope you get some relief. BTW That is a gorgeous picture of You.
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I just went from Zometa to Xgeva. I had a bad reaction to the Zometa last infusion. I did not remember to ask her to slow it down and that may be why. My bone mets keep spreading, and my tumor markers keep rising, but lung tumors are stable. I now have bone mets on my skull too. Anyone else go from Zometa to Xgeva?
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skylotus, yes, I went from zometa to xgeva; no issues, really. Xgeva is suppose to offer a little better protection against fractures according to studies and it's an injection instead of an infusion.
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skylotus,
I'm sorry to hear about your progression. But, it doesn't matter if you're on Zometa or Xgeva or any bone strengthener, they don't stop progression of bc. They are just bone strengtheners. Take good care of yourself.
Caryn
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Macyhen - glad the Nuproxen is helping! It's changed my life. I can walk with very little pain.
Trish - I don't know if this is even close to relevant, but I have the same problem with my back. I do have bone mets in one of my vertebrae, but they're inactive. But it hurts at the top of my hip bones in my back. Then my lower back starts to hurt, etc. As soon as I sit down, I'm ok. The Nuproxen helps a bit, but still happens. When I told my oncologist, he had me stand up and he put his hand on my back and pressed a bit. Hurt like mad! He said, "yup, that's the spot!" Apparently it's a common spot to have pain in when you're on Femera or other drugs that cause bone pain as a side effect. And I have arthritis, but not in that area. I'd definitely ask your onc about it and see if they can figure out the cause.
Hugs to all,
Terre0 -
Terre was that you that suggested the Naproxen? If it was Thank You so much. I am having less pain and am able to move around so much better. It helps with the horrible body and joint pain that I get at night. I am now able to get out of bed with minimal stiffness. It works so much better then the oxycontin and Tramadol I was taking. And it's much easier on my stomach then the Ibuprofen. I hope it continues to help me.
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Like several of you recently, I have a good bit of pain even though I have no mets in my spine. They have seen arthritis though. I think much/most of my pain is due to my Arimidex. It's kept my mets under control for over three years so I think of it as my friend. It's just a friend with a really objectionable SE. I also get Zometta slowly once a month. After dealing with the pain like a "brave little soldier" for a while I finally accepted pain medication (Oxyconton & Oxycodone). I don't know why I was so reluctant. I felt naughty, like I was giving in. Anyway I now consider them my friends too! They make it possible for me to move around almost painf free & I can do most of what I've always done. Yes, I take a nap most days and go to bed a little earlier but they make it possible for me to live my life!
So Trish, I think it is possible that your pain is a SE rather than new cancer activity. It can be maddening that the thing that is causing me the most pain is also the thing that is keeping my cancer under control. ARRRRGH!
Aiobbheann & Amy I hope that you find the right combination of treatments and drugs to control your SE. I too have used antidepressants with good results. Some days, though, it's just all too much. For me what helps most on those days is a really good cry. Maybe it releases endorphins or something but it sure does help.
Wishing you all good days & restful nights!
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