Bone Mets Thread
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Patty, so sorry to hear that you are back in the hospital! And just when you were feeling so good! Hopefully some IV fluids will get you feeling better. Please keep us posted
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it's been a few days and catching up on this thread.
Dee, I am very sorry to hear about your friend. My thoughts are with you and her family during this difficult time. Linda, also sorry to read about your dog.
Annie and Patty, I hope you are both feeling better soon.
As for everyone else, hope you all had a nice thanksgiving and looking forward to December holidays. I just put up my tree, it looks nice.
As for me, my mom told me the news this weekend. The night before I got a frantic text from my dad that he had never seen her in such bad shape in agonizing pain. However, the next day, she was walking, smiling and hid it well for two days before telling me the news. Luckily, I was prepared and going to keep her positive. She's actually looking forward (or at least putting on a brave face) to the thought of not having to style her hair anymore and can get a nice wig. She also said she's on a new med which seems to immediately be helping the pain. But found out in addition to the spine and hip, it's also in the ribs. Petscan all clear and now just waiting on the HER test. The thought of her going through chemo .. IV style... terrifies me but I'm hoping for the best.
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Daughter - I have hip, rib, spine, femur mets. And I'm now nearly 3 years stable. I'm ER/PR+, HER2-, so no chemo, just Femara. Glad your mom told you and hope she comes to our discussion boards.
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Daughter - Not sure how old your mom is, but I'll be 57 in December, have two mets, one to left hip and one to T11 and I just finished chemo 10/22/15. I am HER2+, so my tx was TCHP. Yes, please encourage your mom to join the boards for encouragement and support; it certainly has helped me. Knowledge has not only been power, but comfort, too, for me. -Barbara
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Patty - have they checked for c-difficile? Maybe they could give a targeted med if they check for it. So sorry, can't wait to have you back at home
Dee - hope all these hugs help you a bit. It is shocking. Keep the memories. So sorry.Kisses
LindaE- wowowowowow, you did the right thing. It takes guts to face it, and you took care of him the best you could. HUGS and KISSES
Dune- hope they really nail the saboteur, so you could move on
Terre - your heart was in the right place. Kittens check, Boxes you will get to.
Annie, Annie, oh Dear, it's just not fair when you were just feeling a little better it should get messed up. What about asking the ONCO directly if they think Acup. could have messed you up. It's hard to believe he will fess up that he did something. They get scared. What about the MS society? Could they help in telling you if THIS type of maneuvering could have precipitated something? Feel better sweetie.
Maggie, Deanna has great advice for you, the right scans are in order so you could know if you need a different treatment or what is going on.
Thanksgiving day was just great. But then on Friday, Dani tells me she is feeling tingling and pain down one leg. It's kinda of worrisome knowing all lesion on the sacral area, I guess convo w Onco tom, Tx tom and Tuesday again, and Tuesday is TM markers again, if it doesn't move down then I will may have to really work on getting an opinion re Rads, so far he wanted to wait for tx to work, but w this symptom, I may push it. She doesn't want, I don't want, he doesn't BUT...
Better day tomorrow!
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Myra, and all, holding every hand, and close to my heart, in unity to kick MBC to the curb. Our posts and contributions will help countless others with MBC and also give our docs a lot of valuable info to help their patients. We are doing research right here right now, although anecdotal very valuable
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laying around in the hospital not much to do got caught up with y'all.
So many new people I can't wait to get to know better
Hugs all around.
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Thinking of you Dune and Patty. I'm terribly sorry for the setbacks. Brighter days are coming, I just know it.
Amy
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To those who've had radiation for mets, can we have it again if needed either in the same spots or in new? I'm in the middle of 10 rads for most of my spine including neck as well as left pelvic bone. I move onto rads in right shoulder and r pelvic bone after I return from a short visit to my parents in the San Juan Islands north of Seattle.
Thank you
Amy
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Amy, I have had rads twice to the same area, my upper ribs, shoulder blades and most of my spine twice. My RO said they never radiate 3 times. I'm in that spot now, where the mets are back and I can't have radiation, especially my spine because of harm to my spinal cord. So yes twice , but not any more as I understand it. How are you feeling with all those rads? Enjoy your visit with your parents.
Patty...are you doing better this morning? Have the docs found out what the cause of your vomiting is? Hope you can get out of the hospital real soon.
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Good morning all,
I've been a bit quiet here but caught up on you all. Physically I'm fine but having a bit of a struggle mentally.
Patty, sweet Patty, I'm so sorry you're back in the hospital. They better give you the best possible care or else watch us coming there!
Dune - That must have been a bit scary - good thing you checked the drug interaction. You must be so tired from coughing. But oh so glad to hear your tests are OK.
Annie - How are you? I hope and pray you're better today.
Mommall - so good to hear you all had a good Thanksgiving. I hope Dani's TMs will continue to drop. Bugger on that tingling and pain in her leg.
Amy - I've had rads twice to 2 areas, however the second time around was 3-D rads and targeted precisely to areas not radiated the first time around. Enjoy your visit!
rnsparki - nice to see you. How are you?
I know I'm not addressing all of you but I love you all and I thank you for your support and kind words. I'm just feeling very tired emotionally.
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Oh LindaE, I understand completely. I am so tired lately. I have been struggling with Cymbalta withdrawal. So far the last week has been hell. I wish I had checked this drug more carefully. From now on I am natural as much as possible all the way.
Dune, on that note, try putting Vicks VapoRub all over the soles of your feet and cover with cotton socks at bedtime for your cough.
Annie good luck with your acupuncture symptoms. I hope you are feeling better today.
Happy days ahead I hope. Myra.
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Myra - You're right about the Vicks and the cough. I tried that before and it worked, too bad I forgot about it when I had the flu in Sept! Indeed, hoping for better days!
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Amy I also heard that twice max, that's one of the reasons they are so hesitant to do it for Dani. They say it weakens the bones. Hope you could see the results soon
LindaE - how can you distract yourself? A walk, a good funny movie? A sad one?
Patty if you read this, please ask them to check for the c-diff, i know someone that had it and it was not diagnosed, so he got really screwed up.
Myra so sorry this med messed with you, i also had just taken tylenol cold and i thought I had an out of body experience, so to speak, this things gotta really match your body.
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Hi ladies,
I was very happy to see my sisters for Thanksgiving but when they left, I slipped into a deep depression. I cannot stop crying. I see my onc today for my monthly appointment. I just feel this depression is too much and it's not right to feel this down. I need help. I am going to ask her for an antidepressant.
I want to be closer to my sisters and it's destroying me that they live so far away. I am planning a trip but I am feeling so badly I am considering moving. My DH also has no job right now so I'm very anxious about that and he's not opposed to the idea of a move down south. This winter weather is causing me more pain. I do have a supportive coworker but I keep crying and I don't think she knows what to do with me.
I just want to keep you guys updated so you know what's happening. I don't want you to think I don't appreciate you guys! Sometimes it's hard to jump on here, jumping on Facebook is a little easier.
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Patty- I'm so sorry to hear you are back in the hospital. That is no good and I'm wishing you feel better.
Dune- I hope you are feeling better too- that trip sounds scary!
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Linda - just found out my bone mets have invaded my bone marrow. Can't find any good info on this type of mets. I have pancytopenia that has required numerous transfusions of packed red cells and also transfusions of platelets over the past 2 months. I was stable for 1 year on Exemestane, Xgeva, and a study drug - entinostat an hDAC inhibitor. Since I had disease progression I'm off the study protocol. Friday bone marrow biopsy returned 3 dry taps. Very sore left iliac crest. At cancer center now, awaiting results of scans. Will find out new treatment protocol, hopefully. My first time not being stable since diagnosis of MBC. Anyone else experience bone marrow mets with severe pancytopenia ? Thanks for any info.
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Cristina--If you feel that way you should move by your sisters. You need sister support. It might help your hubby deal with things too. I hope you can figure out how to swing it.
Sparki--I'm sorry to hear of bone marrow mets. I don't know anything about them. I'm sure one of the sisters here will help you out with info soon.
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DaughterLove15--I'm glad that your mom told you and now you can openly support her. I am 60 and have two daughters 26 and 31. They are my support along with their dad. I know they all talked a lot just themselves back when I was first dx. So they support him and each other too. I'm lucky at this point to not be in any pain and life isn't impacted much by bc. As time goes by and your mom becomes stable, it won't seem so all consuming.
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is anyone here using CyberKnife for rads to mets? I am under the impression that because it is so precise, it makes it a better possibility to reradiate areas multiple times. I've heard there are only 72 CyberKnife machines in the country. Certainly not everybody is going to have or recommend this new state of the art treatment, but I think we should all be asking if it is right for us, and how we can find it in our area.
I just completed three treatments on my spine (my first radiation treatment there). I won't know until my scans in a few months, but apparently it's almost always 100% successful. Fingers crossed.
Stefanie
I just found out a good friend with Ovarian cancer has pretty much reached the end of her treatment options. I am very grateful I still have so many in front of me, but feel nervous for the day that I dont anymore.
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Thank you all for your support.
Ellelou - my mom is 57 and I am 28. She is being very positive although she is definitely sad when she talks with me. Hoping it becomes stable soon. she is excited about a treatment being considered to strengthen the bones and slow the growth. I'm happy your not in any pain and not too impacted by this disease
BJsMiller - thank you for your kind words. Looks like you and my mom are the same age and similar areas. I am definitely going to encourage her to join these boards. I am glad your chemo is all done for now and hoping it wasn't too awful.
KiwiCat - it is nice to hear that you are stable. I think they are waiting on the HER test to see if chemo is or isn't happening . However, she thinks it will be as the cancer has already changed from the first time. I hope you and everyone else on these boards is 10-15 maybe 20+ years stable.
Momal - I hope the doctor's can find the source of Dani's tingling/pain and it can be taken care of very soon.
Msparki - I am so sorry to hear that it has spread. I hope that there are plenty of treatment options available and my thoughts are wtih you and your family.
Cristina - definitely move closer to your family! Nothing stopping you and I am sure you can find a good team out near them as needed.
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Geeze...through good times and bad...these boards are like a marriage. And I mean that in a good way. I'm so sad to see so many dealing with pain/SEs/progression/etc.
Myra - hope your withdrawl symptoms stop soon! I was put on Buspar for a while and had similar issues and it wasn't fun.
Cristina - sounds like a move might be a good idea, especially if DH isn't employed right now. A fresh start with sister support and warm weather may be just what you need.
Msparki - I am so sorry about progression. I don't have any advice but sending hugs.
Momall - hope Dani's TMs drop like mad and they figure out the tingles.
Stef - glad you finished rads. It should bring relief soon!
LindaE - agree with Hydranne - a spa month sounds great!
Hydranne -you are my hero, getting all those names. So I'll take the lazy way out - ditto what Hydranne said!
Hugs to all,
Terre
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Hi,
I was diagnosed with a small bone met on my hip/pelvis. 5% ER+ PR-. I had 16 radiation mets, and I can feel pain when I twist or turn-even my butt bone hurts when I sit too long. I also have had 4 treatments of falsodex, and my tumor markers are up to 74. I do not get it. My last radiation was Sept.16. does this mean nothing is working? My oncologist is checking my markers again in mid December and I am getting another Falsodex injection. I also was 17 years out. How long do I have? I am so confused and sad.
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Hi Lisajo - sorry for the reason you're here, but glad you found us. What a shock - 17 years out! I'm not on Falsodex, but others here are and can give you good advice. The prognosis for Stage IV BC is much better than it was even five years ago; the advances are so rapid. I'm three years stable and there are others who hare 5, 10, 15, and 20 years out from original Stage IV dx. It does get easier to cope with over time; confusion and sadness are normal for a while. You'll get amazing support, answers, and hope here. Sending you hugs.
Terre
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Lisajo. Progression is hard to deal with all around. But, try not to be too sad. You can live a very long time (forever?) with just one small bone met. There are so many treatment options out there that can help bring those markers down. Read this thread through and you will see us bone metsters here a long time.I don't have a lot of pain from my mets or my radiation, but there are some here who do and can advice you on how to deal with that. Next time you need rads, you should ask your ONC about Cyberknife. Good luck!
Stefanie
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rnsparki, I read somewhere before that the bone marrow mets would not be treated differently from the bone mets. They are treated with the same means and ideas. Very sorry for the progression. But it seems that the bone marrow mets is still quite different from the mets to the spinal cord. Hope your new treatment brings the new stability to you very soon.
Lisajo, sorry that you are very much worried. We all have the dark moments. It will pass. You have, with one single mets at the diagnosis, every reason to expect a long term survival. Hope tomorrow is a brighter day for you!
My warm regards to All!
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hydranne,
Aren't you sweet and brilliant to be able to mention so many by name. When it comes to memory, I think I've exhausted all of those brain cells 😗.
Lisajo,
It is confusing and upsetting to be sure. It gets easier. How long do you have? Although no one knows for sure, I'd say quite a while! I had a solitary bone met, killed off by rads.I've been on an AI ever since and have been NED for over 4 years. I have no idea how long I have, so I just live every day with as much joy as possible.
Names are not possible, but all the best to those having challenges
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Thank you. You are all so kind and compassionate. And thank you for giving me hope. It will 7 years ago Dec. 18 that I watched one of my best friends take her last breath from this awful disease. Three years earlier I watched another friend slip away from us MBC. I was cancer free at the time and thought how brave they both were-and now I am where they were-not so brave.
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Can I just tell you all how special you all are, and how fortunate I feel to be a part of such an awesome group of women? It really hit me today as I read some of the very supportive, caring and wise responses to those who are struggling. I wouldn't wish mbc on anyone, but I truly wonder how many people have this kind of international sisterhood to stand with them through whatever challenges they may be facing. It's just amazing when you take a step back and realize the very special women -- women we've never met in person who are dealing with their own mbc issues -- who take the time to listen and encourage others. Just amazing, ladies!
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Deanna, I second what you just said and may I say you're one of the amazing women that always takes the time to help and encourage others.
Hugs to all, Annie
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