Bone Mets Thread
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Hi Shutterbug.....Thanks for your helpful information..it is wonderful to talk with someone who is "newly" in treatment for MBC/mets to the bone. Glad that you are doing so well. Peg
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Smellimd: After 4 years on Femera and Zometa, I had a few new bone mets & a lymph node showing up on scans.
Terri
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Hello to everyone,
Just popping in to say that I completed one week of radiation yesterday. Really feeling the effects of it. The nausea and tiredness is the worst and it seems to be giving me headaches as well. I had a Cyberknife treatment yesterday and it lasted just over 2 hours. I am so tired of lying still on that table, it makes my body ache. As long as it's killing those bone mets I will persevere.
I get a bit of a rest now until my next treatment on Monday afrernoon. They said I'll be tired for a month after I'm done.
Wishing you all a restful and pain free weekend.
Hugs, Annie
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Glad you get a few days off to rest, Annie. I am starting the CyberKnife treatment next week for the mets in my shoulder. I had the CT simulation done Thursday and I go for another MRI today. I swear I have been scanned at least once a week for the past month. I'm ready to get the treatment started so it will be done with!!
How many CyberKnife rads are you getting? They are only planning three for me, which really doesn't seem like much. Hope it works!!
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Oh Annie somehow it needs to be figured out...a better more supportive way to receive Cyberknife tx to allow more comfort. I feel for you....do you take a med prior to tx to help? Special prayers for a smoother time next week and victory in the outcome. Hugs, Peg
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I guess no one on this thread is on Xgeva ?
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mscal02- I've bern on Xgeva for 1 month. So far just some minor bone pain and nausea but that could be stress too. Best of luck to you.
Kelli
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mscal02, Not on Xgeva, so I can't help you with that, but I'm sure others will pop in. The weekends are a bit slower & it's getting to be that time of year when everyone is very busy. Glad that Kelli was able to give you her experience.
Annie, Can't believe you have to lay there for so long, I don't know that I could do it. But if it gives you relief & gets rid of those tumors, then it will be worth it. Rest up this weekend. Hope you feel better.
I had my sixth pamidronate infusion yesterday. I don't think they are going to get any better for me. I was so nauseated last night & woke up with a terrible headache & bone pain. It seems that's the way of it for me. It seems to take exactly 48 hours for it to pass, so I should be good by Sunday afternoon.
Hope for a good weekend for all here, Cheers, Dee
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Thanks for answering! The reason I'm asking is because I've been on it for 18 mos. and I'm wanting to see if anyone has been on it as long as I have and have had any complications with it?
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XELODA - I know some of you are on this chemo treatment. I started in Feb. of this year. First PET scan in May showed decreased activity of my several bone mets. I just had a second PET scan and am thrilled with the results. My several bone mets show no hypermetabolism. This is a first and I have been on many different meds. As in the past, my wonderful female oncologist said they are sleeping when I asked. I had thought chemo killed cancer cells. I guess only the radiation I have had in the past actually killed some cancer cells in the bone. My hormone meds seemed to work for two years and then on to a new med. The only treatment I could not handle was the Afinitor which got to my lungs. Xeloda is so much easier on my body.
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Annie, if I ever have to undergo Cyberknife treatment, I will request a muscle relaxer and sedative. If my muscles are relaxed I think it would make it a lot easier on my body. I'm so glad you have the weekend to rest. Be sure to rest. Next week happens next week.
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I'm on Xgeve, but I've only has one dose. Sorry, I'm of no help regarding long term side effects!
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Hi all,
Suecolo2 - that is VERY good news, so happy for you.
Annie - hope you rest well this week-end.
I think I have to vent a little. 2 weeks ago I had xrays and a bone scan. I asked my MO that if results were stable to refer me for additional rads for pain relief. I called my MO's office yesterday and there's only one nurse out of 3 (one is on sick leave and not replaced and the second took a few days off) who told me the referral for rads was done but that my MO also requested an urgent referral in ortho and she would not tell me why! because she's not allowed to give results. Well that got my head spinning. I appreciate my MO's initiative but not knowing why is driving me crazy. Anyway, the nurse said she'd leave a note to my MO to call me on Monday. It' going to be a long week-end.
Wishing all of you a good and pain free week-end.
Linda
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Linda. - shame on that nurse. Making you wait all weekend. Stay busy. Believing the referral was because there was no progression.
Don't remember who asked about exgeva, but I have been taking it for about a year I think. No side effects for me. Easy in easy out for a shot monthly.
Annie - hope you are resting up this weekend.
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Linda, that is terrible of that nurse! She should not have said anything if she couldn't tell you more.
I am on Xgiva, but only have 2 treatments so far. No SE also. I also take calcium. I LOVE the chewable vitamins!! I was having trouble taking the pills and one of the chemo nurses suggested the chewables.
Patty - Vent away! I have similar feelings also. I read 2-3 years also, but am hoping for 8 with more to come. My emotions are still swinging all over the place as its all so new. One minute we are talking about traveling, quiting my job, etc. and the next minute we are talking about keeping things stable for the kids and keeping positive thoughts (plus denial). I agree that we are just more aware of our limited time than most people and need to adjust priorities.
Romansma, sorry about your progression, sending you healing thoughts for luck with your new plan and minimal SE.
Cheers,
Meegan
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Thank you Patty and Readingmama. My sister just called and will be visiting me tomorrow so I will be cooking and having good company. Will not talk about this urgent ortho thing - I know she stresses too much about me. Will let her know in due course.Linda
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Wow...Had a beautiful 60 degrees here in Boise Idaho....Got to get out since Tuesday...when I had chemo...sunny...I had a melt down yesterday...went to clinic thought I had a Counseling session but it wasn't until Jan 5...I tell you this Chemo...plays with my mind...Chemo Brain...so I talked with my SW...and she sat and listen me ramble for about 30 min...I am struggling and fighting with my thoughts...some days good some days...horrific.... with a roller coaster of thoughts...I just can't believe I'm here again fighting for my life...just don't get it....Well Tuesday I'll find out about any treatment changes...so my bone METS can be NED...goal of my OC...at least....It's so hard to plan...something maybe yrs from now with my grandboys...that is all that matters to me...is those boys...to know there grandma...and I can hang out with them as young men...Oh well...Going to watch our College Broncos win the championship...for Idaho...big nite in Idaho...I really want to say I love you all...I know some of you reach out..and that means alot....I just wish I had you all here in my house tonite...love Carla
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Hey Linda. Just a thought. Maybe the ortho thing has to be done before the rads.
Carla, what a great idea! We'll have to figure out a way to do it virtually I guess.
I sure am having a lot of pain lately. I'll try to be more grateful for the fact that I can still do a lot of things and my oncologist is so generous with the pain meds.
We'll be decorating the Christmas tree tomorrow.
Oh. I'm also grateful for my birds. I just looked over at them engaged in their shenanigans, and it made me smile.
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Hello to all, I thank you for your well wishes and encouraging words.
Having a pretty restful weekend so far and boy I need it. My sister came this afternoon and did my laundry and some groceries for me. She even did a little cleaning, God bless her, I don't know what I'd do without her.
DianneNC, it ends up being five treatments to each of my mets. They're doing 2 areas one day, 2 the next for a total of 10 days. Good luck with your treatment, I'm praying for Cyberknife to destroy those mets!
Momonana6, I don't take any meds prior to treatment but I could if I wanted to. Last treatment they elevated my feet and put a pillow under my ankles which made it a little more comfortable. Aside from that there's not alot they can do, the hardest part is the pain in my lower back as I'm laying flat on that table for so long. Last week was the hardest because I had 3 Cyberknife treatments and they are the longest, 2 hours and 15 minutes.
Suecolo2, so happy for your good news! Hoping this treatment gives you positive results for a very long time.
LindaE54, can't believe that nurse dropped that bomb and is letting you stew over the weekend, shame on her. Please don't let your mind get carried away, when I received a call from my radiologist saying he wanted to see me again my mind was reeling with crazy scenarios. Thankfully the women on these boards were right and he wanted to propose a new treatment. Enjoy your sister's company and I'm sending positive thoughts!
Carla, I totally understand how you're feeling and the struggle with your thoughts. I've had some hard days as of late too but am trying to stay upbeat. It's great your MO is planning to get you to NED. I pray they are successful and you are able to stay that way and get many years with your grandboys! Wish I could give you a hug, stay strong!
Hoping everyone is having a restful and pain free weekend.
Hugs to all, Annie
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Hi all,
Annie - you're half way there! Congrats! I've not had cyberknife, but I can empathise with the fatigue. So glad you have some help. Can they put a pillow under your knees? It helps my lower back when I have longish procedures where I have to lie on my back.
Dune - sorry you're sore. No fun.
Carla - my manager said to me "wow...this disease sounds like a total mind f--k". She's right - it is. Sorry your counseling appointment isn't until January. It did help me quite a bit (counselling). I'm horrible at mindfulness but better than I was before counselling.
Linda - what a totally crap thing to do. That's like the meanest thing ever! Went through something similar a few years ago and it's just mean. Thinking bad names in relation to the nurse. And sending good thoughts your way.
I had an energy balancing / healing session with a healer I work with. I know it probably sounds like new age BS to some of you, but I must say, I feel so much better. It was via skype and she said "hello" and then immediately said, "my, what an angry gall bladder you have." She's quite intuitive and I have more energy than I did pre-session. Still have some pain, but nothing like it was earlier. At any rate, it does seem to help.
Hugs to all,
Terre
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I'm still up wow...the longest I have stayed up in a coons day...hahaha!! but our Boise Broncos won the championship ....sad that the only entertainment..is local sports and NFL...which I love...it keeps my mind off this disease...anyhow...still doesn't excuse the mind thinking...again and again....just would like to skype to someone ....talk tired of typing my thoughts....personal touch...is that so wrong....good nite...love Carla
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Hi Carla - congrats to the Boise Broncos! I love NFL and NHL.
A bit hard to skype from NZ due to the time difference, but happy to try to make it work if you want to talk. I don't know what I have any advice, but happy to listen.
Hugs to all,
Terre
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Wow, this is an active thread! Hard to keep up. Someone asked about Xgeva. I've been on it for 15 months now. In the beginning I remember feeling a little flu like, but nothing since. At about 9 mos I went from getting the injection once a month to once every three months. With this recent progression, I will go back to once a month injections. I'm a little concerned with SE too going back to this schedule.
Suecolo2, so happy to hear the Xeloda is working for you. That has to be such a great feeling to know it's kicking back the cancer. I will start Xeloda this week. I have to say, I'm much more worried about this drug than I was about Afinitor. Hope the Xeloda works for a long time, Suecolo2
Linda, just wanted to chime in that I got a call on Friday that my MO scheduled an Ortho appt for me on Monday. I just had scans too. I believe they saw an area of fluid around my right hip and are hoping the Ortho can give it a quick cortosteroid shot for relief. It'sgot tumors all around too, but had I it radiated earlier this year, so not a great option. Hoping yours is as easy as that, too
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Good morning ladies,
I just pray that it's not another surgery with all the lovely hardware...
The nurse is following the rules here in Quebec, she cannot give results. I blame my MO for not giving me info directly or via the nurse. I'm curious as to whether it's the same rule in the US or elsewhere?
Romansma - good luck with Xeloda and hope this tx will be easy on you. It would indeed be wonderful if it's just a cortosteroid shot.
Linda
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On Skype I'm dunesleeper2. Someone had the audacity to have dunesleeper already. Hmph! I'm not always on though. The most likely time to reach me is between 8:30 & 10 pm. Eastern time. That's when I am on the computer.
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Linda - I think it's the same in the US and I know it's the same in NZ. I understand it up to a point, but the MO is just wrong. Hopefully it's for something like a cortisone shot and not more hardware!
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my mo nurse tells me the results all the time, she just won't print them Til mo signs off that he has read them first.
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oh yeah now since they have computerized everything even I can log on to my chart and read test conclusions , see the ct and bone scan films , read pretty much everything that was said or done ( ex labs or med changes ) while I was at hospital, mo office , or really any physician I see. Also can leave email for nurse for any questions and request med refills. I love it.
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oh yeah and see my balance due to them. Sometimes that's scarier than the test results. Lol
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hi everyone. My bone mets were revealed on a pet scan. Had a ct which showed no surprises. Then j had a bone sca Thursday. Terrified they'll find lots morE lesions. Any experience with bone scans. Are they less or more accurate than a pet, show more or less lesions than a bone scan? Thank you all
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