Bone Mets Thread
Comments
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Linda,
I've never had rads to the right femoral neck because I've never had much pain. I occasionally feel something if I turn on it. She did do an X-ray in October to be sure it wasn't broken or near breaking. So, I'm not sure if they will do rads with a growing lesion, but little pain. All previous rads have been for severe pain relief.
Thanks.
Gracie, I agree that it is not likely to have a response to xgeva so quickly.
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Kaption, I am sorry that you have had progression. It is always a shock to learn that treatment isn't working, and it is easy to understand why you feel blue. If that news wasn't enough, you are sick with a sore throat and stomach problems, too. Geez, double-whammy and just not fair! I hope that you feel better soon and that you and your MO agree on the best steps for your treatment plan going forward. It's time to bring those bones mets under control. Take care of yourself so you recover quickly from whatever is causing your illness. Let us know how you are doing.
Hugs from, Lynn
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hi all!
Just checking in & getting caught up.
Kaption, sorry for your news, hoping your sore throat & tummy issues are temp. I had rads to my upper arm & the pain is gone & they never mention it on scans anymore, it's like it's gone away, I don't know if they will do it either, I wish they could just zap them all. My bone scan just came back with slight progression, sucks... though I'm still hopeful that it's wrong..... ((hugs))
Christine, I have no advice for you, but wanted to welcome you to the thread,
Gracie, I get pamidronate & once in a while I get a tooth ache, the dentist checks, it's nothing. I don't know if it's just some nerve pain from the bone strengtheners? or what? Mine usually goes away within a couple of hours or by overnight.
Hello to everyone else & I hope that you had a lovely Christmas or Chanukah (sp?) with family & friends. cheers, dee
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Thank you all for the supportive words. The good news is that it's all still in my bones. Some may remember I have a numb right chin and temple- that is still a mystery but is apparently not due to cancer. Seeing an ENT Thursday and a neurologist soon.
Christine, both of my bc (both sides-7 years apart) were DCIS. Yes, we are part of a mystery. Actually I just ran across an article on a study that indicates SOME metastatic activity can start before there is a tumor in the breast. That could explain us. BC is unbelievably complicated. My best to you and your treatments. As you read around here you will find many who are doing well several years out from diagnosis. (Hugs)
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Christine...so sad you are here, but we will support you in every way we can. Many women w/bone mets have survived past seven years, so never lose hope.
Yeah, Kaption, BC is a total mystery. I NEVER had a tumor that showed up on a mammogram...I am officially "occult / amorphic" which means hidden / without any shape, but I got mets EVERYWHERE, organs, bones, etc., ha ha. (That was a sarcastic laugh, BTW...).
I'm exhausted after all the cooking and stuff. Here's my DD and me after we got back from the Nutcracker on Christmas Eve. And Sofia snuck into the shot, too.
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Lita,
That's a wonderful picture!
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Lita, What a beautiful picture of you and your dd. It is only right that Sophia was in the shot. She is photogenic and has become a member of your family.
Christine, Welcome to the bone mets thread. I am sorry you had reason to join us. There are many people who live for a long time with bone mets. I am 1 1/2 years in and counting since being diagnosed stage IV de novo. I plan to be around for a long time. I know that your diagnosis was a shock to you. I also read the article that Kaption referred to about mets seeding in the body before any primary tumor has been formed. I found it to be a bit scary yet intriguing. I hope to read more about that in the future since, if it is true, it could lead to new approaches for solving the mysteries of metastatic breast cancer as well as other types of cancer.
Lynne
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Lynne,
I went back to where I read that article and got a "page not found" message. Hope it wasn't a fake.
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Kaption, Here is the article that I read. It was from Science Daily. The testing is in the early stages, but I found it interestingand hope something comes from it.
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Kaption-sorry for the slightly worse scan but thank god it's still only in your bones. Once you and your MO meet I'm sure you'll feel better.
Lita-great picture!
Christine-Sooty you're here but rest assured the wonderful people on this thread will be here to support you and to offer lots of information to make this crazy ride easier.
Happy Holidays to all,
Babs
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Lynne-yes! That's it! Thanks for posting.
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Kaption and 50's, I'm stage 4 de novo, too, occult amorphic with no tumor in the boob, but definitely in the lymph nodes and elsewhere. Thanks for the article.
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Welcome Christine, sorry you are here as well. I was recently diagnosed also but this community board has helped me so much.
I love seeing all the holiday pics. Hope everyone had a wonderful Christmas!
A book that was suggested to me was Crazy Sexy Cancer. I haven't had a chance to get it yet though. I have changed my diet though, I cheated over the holiday but that is ok!
I just had surgery yesterday to remove my ovaries and tubes. I'm a little sore but overall doing good.
K-I'm going to be doing a trial of Gedatolisib. I will take it along with ibrance, femara, and xgeva. It is a once a week iv treatment.
Misty
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Christine, I'm sorry to hear about your diagnosis. I hope that the treatments you're having will knock down the mets and keep you stable for a very, very long time!
Misty, wishing you a fast healing from your surgery.
Kaption, I heard about that a few days ago, and it honestly scared me, even though being so involved with my brother has taught me more about breast cancer than I ever wanted to know. If it weren't for his diagnosis, I would have fallen through the screening cracks and my tumor would have kept growing. I hope soon that something good will come out of that research.
Z, thank you so much for your insight and kind words. I agree 100% the will has to come from him. My sister and I have talked about that before. But we just don't know how to get him there. He's seen a second opinion, and he pointed us (and his medical oncologist) in the right direction as far as his next treatment. That's how we got him started on radiation and Ibrance/Faslodex. The original plan, Halaven, would have been just too hard on him. I will PM you later for some more info.
Thank you all for your well wishes, and I hope you all had a great Christmas/Hannukah.
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Welcome Christine. We have a very similar dx history. Fingers crossed that both of us have many good years ahead of us. Please feel free to PM me in you want to chat offline
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Happy holidays everyone!
We are taking the grandkids home after some extra time together. We build lego x wing fighters and went bowling which helped keep my mind off the upcoming scans tonight and tomorrow...brain MRI (odd symptoms) and PET tomorrow.
Had anyone heard from Momallthetime? Haven't seen her since mid Dec and I know Dani was having more tests. Just concerned for her.
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Kathryn, I love Legos and know all about those x wing fighters. I am sure your grandchildren enjoyed spending time with you. I will be thinking about you as you have your scans tonight and tomorrow. Do you have to wait to long for result? I hope all results are good. Concentrate and you should feel our spirits and good thoughts surround you. I have not seen any posts from Momallthetime for a couple of weeks. It is not like her to stay away that long. I hope she and Dani are okay.
Hugs from, Lynne
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Kathryn
Hope the scans get you good results.
Babs
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Thank you Ladies!
I meet with the MO tomorrow at 1 and hope to get results then. They are usually pretty quick, which is most appreciated.
Crossing my fingers
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Iwrite-prayers for good scans!
I go in the morning to get a port placed. I did all my chemo originally with an IV. I now am having a hard time getting stuck. A port will be the best thing for me with weekly iv treatment
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APG- Hoping the port placement goes well! Sounds like it will make your life easier
Crossing my fingers for all of us
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Apt, I am sure that you will be glad that you decided to get the port. It should simplify things for you. I will be thinking of you tomorrow. Let us know how it goes. You shouldn't have any issues. We are all eager to hear about the clinical trial and your experiences.
Lynn
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Apg - best wishes on the port placement and your treatment. I know can speak for everyone on this channel ... we hope everything is easy and the treatment works. Very interesting trial.
Kathryn - May your scans are unremarkable and your doctor visit be very short.
>Z<
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Apg, I will be thinking of you tomorrow, and sending lots of positive thoughts and prayers for a smooth procedure.
Kathryn, also thinking of you, and hoping for only good news on your scan results.
Hopefully MomATT has just been very busy with the holidays. Saying an extra prayer for her and Dani tonight.
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Just checked ... Momallthetime signed in yesterday although she hasn't posted recently. She's probably just busy with Dani and with the holidays.
Diane (lurker)
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Spoke with Momall. She was having migraines so hasn't been on line. Dani had some issue due to rads but seems all is calm now.
Bab
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Thanks Babs that's good to know. I love how we keep tabs on each other. I cherish all of you. When I was first diagnosed I did try a local group here in Vancouver but I couldn't stop crying was a bit embarrassing in person, so for me this was perfect. Now I've grown and come to terms with my situation I still come back to you all , feeling the joy with you all when good results come in and shedding the tears when they don't.
I found another book that's on my list of positive info "Fighting breast cancer with nutrition" anyone familiar with this one? For me I'm into both worlds conventional medicine and alternative though I lean a bit more into the alternative realm lol.
I wish everyone the best of luck on their scans that are coming up crossing all my fingers and sending good vibes. Happy New year to all and may healing and peace be in all our futures.❤️
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Hi Everyone. Hope you are all doing well and looking forward to 2017. If like me you have scans in January good luck.
Z suggested a few posts back asking for book recommendations from this group so please post your best picks.
Chico xxx
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Hello Everyone, Good luck with your scans!! I hope the best news for everyone. Hopefully in 2017 they will discover new meds to keep us all going. Thank you all for the support and all of the information. Happy New Year. Sending love and hugs to everyone!
Anita
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Kathryn, thinking of you today, hoping you get good scans.
Apt, I was so glad to have my port. Hoping it goes well and very quickly.
Went to the dentist yesterday...he thinks the pain in that one tooth was just too much pressure from the new crown on the bottom side so he made some adjustments...hope that was it.
Mom all...I've had migraines most of my life, I hate those...thinking of you and Dani.
So who has New Years plans? And what are you doing?
I had some tears last night..few minutes of pity party! My daughter got me exactly nothing for Christmas...not even a card. It hurts...a lot. I just don't think she is facing any facts about my cancer... I've done so much for her and her family and then just nothing...not even a "gee mom I just don't have any money this year"... she did FaceTime me Christmas morning so I could share her kids opening presents but still not one single word about not getting me anything. I finally just asked her outright last night about it and got "well I wanted to get you a specific present and I just never had time to get it so thought I would try after Christmas and give it to you next time you were up here"...ummm... I may not be back up there. And really? She never had time? That just speaks volumes on where I rank in her world. Sorry to vent but it hurts alot
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/www.sciencedaily.com/releases/2016/12/161214145615.htm