Bone Mets Thread
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My MO had me get a flu shot this past winter, but we had to time it with chemo and better blood counts. The winter of 16-17 I was never cleared to get one because a brain met had shown up. So, by the time we were done dealing with that, flu season was over. Fortunately I did not get the flu either year. Your MOs advice may depend on your current blood counts.
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My Pcp wanted me to get a flu shot and a pneumonia shot this year. My Mo said no! Too dangerous!
Gumdoctor, please report the jaw lesion. I got Osteo necrosis from the Xgeva. Not too big of a deal. Lost the bone that resides in the roof of my mouth, in the middle. More scary than anything! Also, my metasis showed up in the main massiter(sp) muscle in the left side of my face, under my cheekbone, so they watch my face and jaw pretty carefully.
More mets showed up on my Pet scan last week, I will be stepping off of the Ibrance train in the middle of June. Waiting for Dh to recover from neck surgery. Then we will do another Pet scan and a biopsy and then move on. I have a couple of plans in my pocket. We will see which one we will end up using.
Claudia
P.S. still in my bones only! Yay!
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I talked with my MO today about the jaw pain and she was concerned about ONJ. I will be having a CT scan tomorrow. Does anyone else get Xgeva on a monthly basis? Seems like I remember someone saying it should only be given about every 3 months. I have had one monthly for 33 months with just a couple of exceptions. Didn't get one today due to the concern with ONJ,...hoping and praying that's it nothing
Thanks so much for the information and for your advice!!
33 months stable and counting!!
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I get an Xgeva shot every 6 weeks, it is timed to every other Herceptin and Perjeta treatment, which occur every 3 weeks.
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me too for xgeva every 6 weeks
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I get monthly xgeva, have been since last June, so not quite a year.
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Xgeva for me every month for 1 year, now every 3 months.
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Same for me. Xgeva every month for one year. Now every three months.
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I get Zometa infusions every 3 months. I started out every month for the first 6 months and then went to every 3 months. It's been about 3 years at that interval.
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I got Zometa infusions monthly this first year. On my last visit my onc cut it down to every other month.
On the subject of vaccines, I had both the flu and pneumonia shots this year. My onc and pcp both feel because it is not a live virus there is no risk. Always surprised at how different docs can be.
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I get Xgeva every month.....was not told it would change after a year, so I’m assuming I’ll continue to get them monthly.
Laurie
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I get Zometa every 3 mos. Been having LOTS of molar sensitivity to cold stuff these past month. Plan to go to dentist and have xrays because I'm due for cleaning anyway, and will mention it to the tech.
Only been on Zometa for 2 years, but ONJ can happen at any time. Does anyone know if Xgeva is WORSE for ONJ?
L
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Hello all, glad to see some good reports coming in. Others have the waiting game and that is not much fun. I learned that after I do the scan, test, labs, etc., that there was nothing I could do until I got the results from the oncologist. It helped curb some of anxiety for at least a couple days. That cut down on my stress, big time.
After 3 years on Zometa, I came down with ONJ. We found it because I had a tooth pulled, and it wouldn't heal. Eventually, the skin healed over. Now, every so often, I have a piece of bone that flakes off and pushes out through the skin. I would highly recommend regular visits to the dentist to keep cavities at bay.
In regards to the flu shots, my daughter had the flu shot, got the flu in the fall, and has come down with it again! So flu is going around again. Be smart around the public and drink plenty of fluids.
Therese
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Xgeva was added to my Faslodex at the recommendation of second from MDA in June 2014. I have had 3+ years of Faslodex, 7 cycles of Halaven and now on 5 th cycle of I/F, the only treatment has not changed is the monthly Xgeva shot. I have asked Onc if we should lengthen the interval to 3 or 6 months. She said no! So, every 4 weeks I still go in for the shot.
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I’ve been been getting Xgeva monthly. My MO does monthly for 5 years. I kind of think that she crazy
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me too. Every month...and it’s a long drive. Plus a got ONJ during the first go round. Stopped for a couple of years, then started again when I had some bone progression. It’s been a few years this time. No ONJ (yet), but it does seem to help keep the Mets stable.
Sunset
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a question girls. I found out today my tumour markers were 160 at diagnosis then dropped to 30 on Letrozole and found out today my hemoglobin has dropped to 87 from 120 in one month and tumour markers have risen to 270 not moving since last November . Not sure what any of this means as my CT and bone scans showed no progression 3 weeks ago. I am not anemic as my iron is high but reading the internet u can have cancer in your bone marrow (very rare) . At the moment I can't stop crying and I just want to sleep all day. I have gone from a happy person planning lovely holidays to this depressed tired freaked out person
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Delvzy,
Please don’t allow the numbers to mess with you....they are just numbers. My onc doesn’t even keep track of tumor markers—she said they are not reliable. My markers went WAY down, but I had progression and had to switch drugs. So take it one day at a time...
Are you on medication for depression? If not, I would highly recommend that you discuss that option with your onc. It has changed my outlook and helped me SO much to cope. I know some may say more drugs are not the answer, but I am very grateful for them.
Hang in there....sending prayers and hugs your way.
Laurie
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Having scans today. Just sucked down the oral contrast. Yuck!! Earlier had the nuclear injection for bone scan. Waiting to get called in for CTs abdomen, chest, and pelvis. Then back for bone scan. Really hate using up all my sick time and vacation time but ya gotta do what you gotta do. I meet with MO on Monday to review results. It’s freezing in this waiting room!
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Hi Delvzy. I'm sorry you have higher numbers but the jury seems to be out on markers. The depression you are feel is hard to deal with but so many of us here have been there. Talk to you mo or pc doctor about your depression . Try not to read too much on Doctor Google. I don’t know anything about bone marrow cancer but meds can play havoc with your CBC numbers.
It’s ok to cry and want to sleep away pain. I’ve been there more than once myself. Meds for depression are a help to many of us. Hold on to the ladies on this thread. They have been there too. Sending hugs your way.
Just a quick note on flu vaccine. I have been getting the shot every year for 20 years. This is the first time I came down with it. My pcp said she had 2 cases of B flu the day before I arrived with A. So be careful out there like Therese says. Flu is still around
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Cathy, good luck with the scan - hoping you get great news from them!
Delvzy, I don't have any insights in what your markers and lower hemoglobin can mean, but I want to offer hugs. Can you contact the doctor and ask for their opinion or further tests?
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Delvzy I know just what you're feeling. My tumor markers came down on letrozole alone for 6 months. CT Scan in February came back with healing lesions, no new ones. I was walking on air! Next month platelets fell from 224,000 to 169,000. Tumor marker jumped up from 139 to 176. It is now 434. Bone marrow biopsy cofirmed breast cancer cells in marrow. I had a breakdown in my oncologist's office, I cried forever it seemed. Started Taxol April 3rd. Doing 3 weeks on, 1 week off for 12-18 weeks. Hemoglobin now 7.9 and I'm exhausted. I'm not telling you this to scare you. I feel better knowing there's a plan in place and my doctor is doing everything he can. Yes there may be AC chemo down the road for me but again I will cross that bridge IF I come to it. I'm taking every day as it comes, just like I did before. I got my hair shaved today and though I look a bit like Sinead O'Connor I'm going with it. I was devastated when letrozole failed after only 6 months and I'm scare s!*tless that Taxol may fail. Please know there are treatments and once you know for sure you'll feel better. Hugs
Jill
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AnimalCrackers, best of luck to you with all the scans!
grifff, best of luck with the Taxol. I hope it works like a charm with few, or NO, side effects.
Delvzy, my tumor markers did the same thing, went down for months and now jumped WAY up again. My other blood work is normal as can be. I'm having a scan next week to hopefully see what's going on. For some reason I've become very calm about the whole thing, but I'm sure that will change again! I figure I can't change it no matter how many what ifs I run through in my head and I feel pretty darn good. But it is always on my mind just a bit. Good luck with it all...I'll be thinking of you.
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thanks so much girls. I am on a 10mg antidepressant but just upped it to 20mg for a while so I can function. The only good news is that my haemoglobin was 81 then 85 now 87 in 3 days so the trend is stable to slightly going back up. My iron is slightly high. I sure hope it's not in my bone marrow that would be just terrible I don't think I could go the chemo line again. Apparently having bc in bone marrow is extremely rare so let's hope it's not that. Thinking of all those waiting for scan results atm ❤️
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I've been having Xgeva every month for the eighteen months I've been on Femara.
Delvzy....don't worry about your tumour markers. Mine are sky high and bounce around between 450 and 550 all the time but so far my scans show stable disease. You had a scan only 3 weeks ago which showed no progression so you're fine. As others have said don't let TMs mess with your head. I don't usually ask for mine for that reason. My MO goes by scan results and clinical impression, not TMs, as do most.
Re flu shots...I used to have one every year but when I was put on Ibrance and Femara I was told not to have flu shots. That's just my story. We all seem to have been given different advice. It's up to us to decide, I guess.
I'm having a CT and bone scan some time around the 30th so I'll find out whether my slightly higher than its usual upward bounce TM means anything but meanwhile I refuse to worry until I'm told there's something to worry about.
Love and hugs to all of you who are struggling at the moment. We've all been in that place at one time and probably will again.
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I took Xgeva for 18 months. That was 5-6 years ago. With my MTHFR mutation, I do not metabolize some drugs well so we always proceed cautiously with new drugs. So... my reactions to Xgeva gradually worsened each month until finally they were consistently causing me to run fever, have headaches and extreme achiness (like flu) and the kind of fatigue that keeps you in bed. We switched to Zometa. After the first and only dose, I was hit with horrific gallbladder issues and pancreatitis which in hindsight we know was not from bisphosphonates but rather from sneaky lobular mets basically destroying my common bile duct. But at the time we didn't know that, so my onc said 'no more bone strengtheners for you, missy.' So I've had widespread, extensive bone mets for 8 years and only took Xgeva for a year and a half of that.
I never take flu shots; thankfully my PCP and my onc know it's a bad plan for anyone with MTHFR so they don't push me about it like others do. My DH always gets flu shots and he caught the flu this year-- from me. Blerg.
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Hi. I don't respond much on this thread much because my bone mets are resolved on Ibrance/Femara but I read. I get Zometa every 3 months (have for 2 years), and I also got a flu shot on my MO's recommendation with no problems. I also did not get the flu this year although my family did. That sounds different than you all, but it has worked for me.
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Leapfrog thanks for helping to reassure me. I am a classic overthinker and with the higher than usually TM's and lower hemoglobin I had myself in such a panic about mets in my bone marrow. Does anyone know if my scan
weeks ago would have shown up any problems in the bone marrow? Apparently it's very rare to have it but I can't understand my hemoglobin dropping so much 120 to 87 when I havehigh iron, I am hoping it's nothing but I am so worried as I don't want to have to have chemo. I wish I had never asked the doctor what the TM's are ignorance is bliss, 0 -
Hi, I am new to this thread; just recently diagnosed stage IV. I´m Danish and these last couple of weeks with all the examinations and consultations going on, followed by anxiety and grief, I have found a lot of comfort in reading posts, - so many wonderful women sharing, caring, and just understanding all the emotions, that this disease causes. Thank you
. I was diagnosed a few weeks ago with a met in the proximal part of my left femur. A PET/CT scan performed Monday revelealed that something may also be going on on the hip (met suspected). I started treatment Wednesday: Chemotherapy (Navelbine, capsules) and targeted therapy (Herceptin and Perjeta). If anybody has experience to share on Navelbine capsules, I would like to hear about it (I am not sure if it is an approved standard treatment in the US).Thanks for reading my first post :-). I will try to enjoy this weekend; Spring has finally arrived here in Denmark, the sun is shining, just have so many emotions going on.
Meja
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Mejia,
Welcome, and I hope you find this thread informative as well as supportive like I have. I’m at the point where I come to this thread to review just about everything regarding my MBC before I even talk with my onc. A lot of smart, caring ladies (and a few men) who make this site invaluable.
Anyway, thank you for posting about Navelbine. Never heard of that drug, but thrilled to hear of yet another drug that could be used to treat BC.
Lastly, I have always wanted to visit Denmark. It’s on my bucket list. Going to Switzerland in Sept. and picking up a Riviera River Cruise in Basel to Cologne. I can’t wait. Maybe next year I’ll get to your beautiful country.
Glad you are here with us and please reach out if you need support.
Hugs from PA, USA.
Laurie
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