Bone Mets Thread
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Dee, It looks like you got a lot of snow. A little dusting would have been more than enough, I am sure. I don't understand why it is so difficult for some medical professionals to realize how much stress we endure while waiting for scan results. I suspect their perspectives would change quickly if they found themselves in the shoes of the person getting the scans. Why do we imagine the worst? Human nature, I suppose, but I found myself losing sleep while awaiting my results earlier this month. That was in spite of the fact that I felt great. I hope that your results are just what you are looking for and that you can find a way to relax and enjoy the holidays. Your Chritmas plans sound wonderful, btw. You have come a long way in eight years. I have no doubt that your knowledge of bc and treatments for it have increased tremendously. I do wish that you (and everyone else here) had never had to experience this and had never had a need to become so knowledgeable. That said, I am happy that you feel good now.
Hugs from, Lynne
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Just got back from groomers...no more stinky doggie for Christmas.
The groomers always give Sofia a seasonal bandana. Merry Christmas, and try not to worry about tests and scans. It will be what it will be.
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So, my PCP's receptionist went online & got results from the bone scan.... kind of ok, but seems to maybe be something new going on with my right rib & lower back but is it showing injury or new mets? They don't seem to know, they're conclusion was pretty wishy washy.
She's trying to get my CT & TM's before Christmas.
Thanks Lynne, hope you & DH are both doing well. cheers, dee
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Wow what a lively thread! I love all the fun pictures. Sending good thoughts for everyone who has scans and results coming. I am really picking up the positivity everyone has and it is helping in the early day of my diagnosis.
I may even treat myself and go try that champagne Lita was talking about a page or two back! 😋
Happy holidays
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Dee - CT will be more definitive. Bone scan results vary a lot based on radiologist interpretation. Do not worry, everything will be all right.
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thank you LMWL, I needed that. even if it turns out to not be true, I really needed that. dee
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Kathleen...yea on the stable boy!!!
Dee, hoping it turns out to be 'something other'. I know I would hate to have to wait for scans at this time of year. I have all of mine next month and it's hard enough just waiting until then to have them done. I would hate to have to wait over Christmas
Praying they turn out ok.Am still having some unidentified pain in my right upper back. Hoping it's just a pinched nerve that has nothing to do with mets.
I wish every one of us the best Christmas we can have. I think about you all constantly, and you all remain in my prayers.
Am worried about Patti too.
Blessings.
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Holy cow Dee that was quite a shot of snow! Hope you get a better answer soon and can ease your worry. Lita, Sophia is just adorable! Love the pics! Boy, Raphael is a handsome little guy, so cute!
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Just an update on Patty: She texted someone on her personal page and is doing OK except when she fell she is pretty sure she fractured something so has been in some pain. Has an upcoming appt for a scan and will post soon.
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Artist, thanks for the update on Patty. Dee, that's a lot of snow you've got! I'm a worrier and always waiting for the other shoe to drop. My daughter keeps telling me to be positive and it'll all be okay which, so far. has turned out to be true. I'm betting the CT will show good things for you, Dee.
I am very grateful for knowing all of you. My life is much better and calmer with access to your knowledge, camaraderie, support and advice. Wishing all of you the Happiest of Holidays and a better 2017 for us all!
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Thanks for the update on Patty Artist poor thing can't catch a break I wish her and everyone the best for Christmas and the New Year. Dee I feel your pain waiting for results in Canada can be horrible. It will be fine though I'm sure of it , relax and try to enjoy Christmas . I get. A new scan when I come back from holiday might just stay in Costa Rica never come back lol. Stuff has been going on in my boob so I'm not wanting this scan
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Wendy, I hope that your new year scan results are good. In the meantime, relax and enjoy Costa Rica. I often want to run away from scans, tests, results, dr appointments, and most of all bc, and not return, too. Costa Rica sounds like a wonderful place for an escape. Have a great time.
Artist, Thank you for the update on Patty. I was hoping for better news, of course. I wish the doctors could figure out how to relieve all her ills (the pain, the infections, the vomiting, the fractures) for a prolonged period of time. I know it is hard on her.
Gracie, I hope you find some relief from that pain you are experiencing. Nerve pain is horrible.
Lynne
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Artist, thanks for the update on Patty. Good to hear she's ok. I have not heard back from her.
Dee - I don't trust bone scans anymore without correlating to CT scan. I had quite a scare the last time with the bone scan only and finally got good results when compared to CT.
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Hi all. I hope you are having a peaceful week leading up to the holiday weekend. I'm here to post an update about my brother. I made a post in the caregivers forum but there isn't much activity there.
It's been three days of 2 trips to the ER and pain every single day almost all day. The only time he's without pain is when they give him dilaudid through the IV in the hospital. But the same medicine in pill form is barely helping him at home. He's had three radiation treatments so far and hopefully he'll be well enough to go this evening. Radiation oncology shows no empathy with his condition, they just want him to show up to the appointments. Palliative care isn't doing much in terms of pain control, and the ER doctors are oblivious to the effect cancer is having on his body. (They called oncology "ono-cology"). I have no doubt that he's extremely depressed and overwhelmed because he gets very agitated when it's time to take his medicine, and he doesn't know which one to reach for. Sleepless nights and crying at the smallest things. He takes ativan as needed and it calms him down a lot, and it seems to lessen the pain too. But ativan isn't a solution, it's a coverup that lasts a couple hours at most.
What's good is that he still has an appetite when he isn't nauseous, and once he's up he is able to walk a little bit with or without a walker. But the pain is a real problem that no one seems to have a real solution to. Radiation is supposed to help but I've heard it gets worse before it gets better. I hope this is what's going on. I'd appreciate any and all feedback. Thank you all so much for listening/reading.
Hugs to all.
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Lovingis... I'm so sorry to hear of your brothers problems. I hope he gets some pain relief soon.
So ladies I'm confused, is there a reason why we shouldn't have something to drink ? I'm talking alcohol here. I was wondering about having a couple glasses of wine at Christmas in a couple glasses of wine maybe at New Year's? Is there a legitimate reason why I shouldn't? I may not be here next year ( none of us is guaranteed), so I am thinking I'm probably going to have a couple glasses of wine and enjoy myself. What do you all think
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Hell yeah, Gracie. That's what I'm gonna do. I'm not on cycle this week, so I will have a glass or two of champagne on Christmas eve. Have to go back on Xeloda Monday, so I can't go crazy on Sunday.
I don't know if I'll be here next year at this time either with my multiple organ and bone mets. My brothers don't drink so I'll have sparkling cider with them at dinner.
Merry Christmas everyone.
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Lita, will be thinking of you while I'm lifting my glass
Merry Christmas to every one of you and your families. May you be blessed.
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hi all,
Well no call back from the trial RN about my CT or TM's, I didn't think she would bother & she lived up to my expectation. Hope she has a nice Christmas.
LisL, so sorry about your brother. I have no advice for you but am here to listen and read your posts if you need an outlet. ((hugs))
Gracie, I will share in that glass of wine! No matter what, my DH & I are sharing a nice bottle that we've been saving just for this Christmas.
Linda, thanks for the advice, good to see you here, we haven't chatted in a while, hope you & Praline are doing well.
I got an email from Terre, she is doing well, but so busy with little time at home, she did have a horrible bout of food poisoning that she is just getting over.
Merry Christmas eve to all!
cheers, dee
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Oh my did not realise we are not supposed to drink. Had champagne everyday since my birthday on 26 November! Well I will continue on now into the New Year. Must say I feel ok! Have fun everybody. Chico xx
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Merry Christmas, Happy Hanukkah, Happy Holidays to all. Every day is a gift, and the holiday season is particularly heart-warming and dear to me. For each of you I wish a holiday season filled wih peace, love, friendship, and happiness. I hope you are warmed by the memories of past holidays and enjoy special moments during the current holidays. Thank you all for being here for me.
Hugs from, Lynn
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Ditto what Lynn said. I hope everyone has a lovely and love filled holiday!
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Hi all,
Sorry I've been a bit MIA Need to go back to catch up but wanted to wish everyone a wonderful Hanukah, Christmas and New Years! Thank god we're still here (though missing a few good sisters) You are all so very special to me-I get much of my strength from you!!!!
xoxoxo
Babs
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Wendy - I am on the verge of starting a thread entitled "what is going on with my boob?" because i have constant burning in the area of the tumor and my armpit. I wanted to wait until after my scan to see if it was related to tumor activity, but the remains of the tumors in that area are dormant in my PET/CT last week. I had intense burning when I first started treatment last January. At that time it was associated with a decrease in tumor size. I am very interested in other people's experience with pain and burning in their breast; however, in my case it has not been associated with tumor activity.
I am wondering what you, and everyone else have been experiencing. My left boob and armpit have been hurting like hell but since I just had a stable scan, I know it's not active cancer.
Milaandra - yahoo!
Hi Babs! Merry Xmas
Kaption - Have a lovely xmas and a stable new year!
Lynn - I am in Utah watching football in a vacation rental watching a huge storm advance over spectacular landscape!
Patty - Hope you feel well enough to check back in soon. Praying for better QOL all around for you in 2017.
Gracie, Chico - In principle, alcohol is a bad idea. Regular drinking is associated with worse outcomes. If nothing else because alcohol is pretty much nutrition free calories. I have a glass of wine once or twice a week because life is short, as they say. But a lot depends on what else you are eating, how much exercise you get, etc. An occasional margarita is NOT going to kill you. And holidays are an appropriate time to break the rules.
But in general you want an alcohol free, sugar light plant based diet from whole grains and veggies with a little protein. And regular exercise. There are almost an infinite number of studies that show significantly better outcomes. Anti-Cancer a New Way of Life is a good book. There are several good books. If you are interested, post a question here and you'll get 5-6 great books about lifestyle and cancer from these ladies.
Loving - I don't know the details of your brothers situation so I can't pontificate as is my habit. I would say that a second and third opinion until you get some action is in order. Consider reading or re-reading Bestbirds MBC guide as it pertains to the specifics of your brother's condition. I have started consulting with a "cancer navigator" help me "navigate the cancer maze". The consultants cost several hundred just for the consult and even more if you want to consider alternative options. None of this is covered by insurance. There are quacks and people just trying to sell things but the good ones truly integrative in her approach and knowledgeable about both the alternative treatments and the standard of care.
One lady in particular comes to mind because she starts out working on the "will to live". This struck me as odd because giving up hasn't crossed my mind and I am surrounded by fighters on this forum ... who are these people who have lost their will to live? Reading your post, speaking for your brother, I realized that the people who have lost their will to live from combination of the fight, the disease and the drugs are not on this forum. And I realized that the will to live is in fact fundamental to winning the fight. At this point, I think you may be the only one fighting for your brother as he is in too much pain and too drugged up to fight. I don't have expertise or experience in this but my gut is that the answer for you and your brothers healing lies in getting him back in the fight.
I don't have answers but I have a couple ideas of consultants who might if you want to PM me.
You and your brother are in our thoughts this holiday season and beyond.
Artist - I've been dealing with my own stuff and distracted, but I've been meaning to congratulate you on the move and all the changes you have made to simplify and focus your energy and generally improve your odds going forward. It's actually stressful and a lot of work to transition but the payoff will be great!
Dee - its odd that they release the bone scan report separately from the CT. they almost can't be interpreted independently. Enjoy the snow. I was in Vancouver this summer. What a lovely place! 8 years is awesome. My initial diagnosis was last xmas. What is it with xmas? What a nightmare. I am glad we are in a better place this year.
Lita - your dog is as cute as a button in his holiday finery. thank you for the picture. Sofia - keep your mom busy and distracted for Xmas and through the whole coming year. Remember that you need lots of walks.
Misty - good plan ... what trial are you on?
Linda - What a lot of energy to keep up with all that cooking for the holidays! Raphael is clearly in charge, which is awesome.
LindaLou - Way to maintain QOL with pain. Not an easy thing to accomplish.
Casun, BJSMiller - Happy holidays.
Barbara, Dee, Kathryn, Deanna, LetMyWifeLive - thank you for your support this year.
I think I got everyone but if not, you are in my thoughts.
Wishing you all a peaceful cancer free holiday and a happy and stable new year.
>Z<
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Love & blessings to our bone mets thread family!
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Happy Holidays to all ! I'm wiped out from cooking and festivities but so worth it!😍
Also wishing everyone a super 2017...sounds like a good year for some major breakthroughs or how about a cure
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ok... I had my first XGeva shot on the 4th of December. I've had a lot of dental work done. I have a tooth that started hurting last week. Surely it can't be something to do with that XGeva shot already?
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I should clarify that almost all of my dental work was done before the shot, and the tooth that is hurting isn't one that was worked on
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I hope you each have had a wonderful holiday. We were scheduled to celebrate today with our in town family, but I woke up with a sore throats and stomach issues. So, going to postpone that.
Also bummed over last week's PET results of "overall slight worsening" of bone lesions. Particularly the right femoral neck which has shown pretty significant progression on the past three scans. I see the MO Thursday. I'm not sure if she will make the change to xeloda at this point, or try to squeeze out another couple of months on Faslodex. I've only been on it since June. Feeling blue today.
Here's to a much better 2017!!
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Gracie, I'm not sure but I would tend to say unrelated to Xgeva. I've had jaw/tooth aches with Aredia/Xgeva which turned out to be nothing on x-rays.
Kaption - I'm sorry, I also feel bummed for you. Let us know what you and your MO decides on Thursday. My memory is not good, but did you have rads to femoral head recently?
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I was diagnosed with stage 4 breast cancer on 1 Nov following a hip fracture. I had DCIS back in 2011 and had a double mastectomy and reconstruction surgery. My doctor told me at the time that there was a less than 1% chance of the cancer coming back because it was stage 0 and I did not need any further treatment. I was stunned to find out that the hip fracture was due to my bones being weak due to bone mets. A bone scan showed lesions in both hips and 2 spots in my spine and one in my rib. I had a rod put in my left femur and a nail in my left hip to stabilize it after the fracture. My oncologist also said there was mets in my lymph nodes. I just finished my 5th treatment of weekly taxol and am also getting monthly zometa infusions. I'll be re-scanned in January to see if the taxol is working. I think I am scheduled for 12 treatments depending on the January scan results. I'm still using a walker and cane to get around and have not been able to exercise
I'm 49 years old, married for 24 years and have a 16 year old son. I hope that God will allow me to be here to see my son get married and have children. Reading the posts from everyone that has survived many years following a stage 4 diagnosis has given me a lot of hope. Any advice on what to expect from here would be greatly appreciated!
Christine
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