Bone Mets Thread
Comments
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Amy welcome to the group and at the same time sorry you have to be here. I'm no expert but I think sometimes the darn cancer cells have already left the primary site by the time you started treatment which is why some doctors give you chemo after surgery. Sorry you find yourself in this situation but know that it is possible to live many years with mets. Others will come and chime in. If you haven't done so yet fill in your profile and make it public that way we can know what treatments you've had
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thank you dlb823 and tx mom for your replies. Sometimes I feel so alone. Thank you for taking the time to describe your experience. Rachel
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Amy, so very sorry that you have to join us here, but you will find strong supports from many wonderful women with courage and big heart cross the boards. Time will comfort you. May your first line treatment be a great success!
(Edited for the typos)
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Rachel, please know that you are not alone! Also know that the way you feel right now is probably not the way you will feel in a few weeks, when the shock of your re-dx isn't so new, and you get the cough and pain under control. I know when I was first dx'd, I felt like I was in a fast downward spiral. But all that changed after I got on a med that worked wonderfully for me for many months and I began seeing myself living many more years, hopefully within which time we'll have new and better tx advances.
Amy, I'm glad you've found us too. I think Auroaya is right about our bc sometimes being more advanced than is originally dx'd -- in other words, we have no assurance it wasn't metastatic from the get-go -- just not obvious at that time for some reason. I also think that your most unique challenge is being positive for the BRCA1 variant, and that's something I would urge you to be absolutely sure you are seeing an oncologist who specializes in BRCA mutation research. This is probably not a situation for a local oncologist who who treats a wide range of cancers and blood disorders. You need to be with a top BRCA specialist -- because it's not a common dx -- to be sure you are getting the advantage of their expertise in this area.
Happy Sunday everyone! Oh, and I woke up feeling so much better today -- probably a combination of ditching Anastrazole, which affected my sleep, and hopefully my new drugs starting to kick in. But, wow, what a difference!
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Deanna, you are so knowledgeable. So glag that we have you with us (not cancerwise, you know what I mean). Happy to hear that you finally felt much better.
Everyonr, enjoy the rest of Sunday!
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Amy and Rachel ~ You are not alone. We are here for you. Just wanted you to know that I am 6 years out from breast metastasis dx.
Amy- I have liver mets too, but am watched via scans etc. Many of us are on a 'watch' with some of our mets. It is not unusual. Good that your onc is on top of it. Getting the written report helps you to stay on track too.
Deanna- so glad you are having a good day!
Hi To All.....hope your Sunday is going well.
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Hi all,
Welcome to Rachel and Amy - you're not alone and what you're feeling is "normal" - fear, anger, disbelief. Sorry you're going through this, but glad you found us.
Deanna - so glad you're having a better day today! Here's to the new treatment kicking cancer's behind!
Happy Sunday, Lindalou! It's Monday here, so back to work...
Terre
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Hi all,
Rachel and Amy, a warm welcome to both of you but sorry for the reasons that bring you here.
Rachel - regarding fractures, I have a pathological fracture from mets on my pubic bone since my dx in Nov. 2013 and the pain was awful to the point that I could no longer walk without crutches. Thanks to rads, the pain is sooo much better, the fracture is still there but stable. I now rarely use my cane except for long walks or in the winter just to be on the safe side.
Deanna - glad you're feeling better!
Cristina - thank you for letting us know about Patty. I'm glad she's taking a vacation.
Good night all.
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Hi all,
I guess I am joining the bone mets club. I am a 17 year survivor and I recently had a pet scan and three areas lit up-a lymph node in my thigh, pelvis, and a node on the pelvis floor. Then I had an MRI. Suspicious for bone mets. last week instead of a scheduled bone biopsy-the radiologist did a fine needle aspiration on the thigh node. It cae back negative for cancer. Now I have to get a bone biopsy. I am scared. Any chance the MRI could be wrong. It is very small and I really don't have any pain. I was ER+ in 1998 and had 6/13 pos nodes.
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Hi, lisajo ~ I'm so sorry about your MRI results. Since the thigh node came back negative, I'm wondering if there's a possibility your bone biopsy will as well. I'm not sure what else can look like bone mets on an MRI (maybe someone else knows), but since they were wrong about the node, I'm wondering if they're wrong about the bone met too. Have they done any blood work to ascertain if anything is amiss, such as elevated liver counts or tumor markers?
Hey, I just realized we haven't heard from momallthetime for more than two weeks, and it doesn't look like she's posted anywhere else on BCO. I hope her daughter is okay. If you're reading, please check in with us, okay?
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Lisajo, hopefully you would not join us after all. 17 years of cancer free is a very very good sign. I tend to think nothing is 100% reliable, so does MRI imaging. So try not be worried for now. Wish you the best!
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hi rachel and Amy Welcome.
I wanted to share some things from my experience.
Rachel, I had a fracture of my pelvis in November. My pain had a quick response to radiation,but I continued to struggle for a couple of months with walking any distace. Now I can walk 2 miles several times a week. My pain comes back momentarily at times but so manageable.It took me a while in the beginning to let myself use the pain meds I was given. When I did use them I slept better and was less cranky to people around me. Good luck to you. And. for me things did get much better in response to treatment. I hope the same for you.
Amy I have a brca mutation. I went to a NCI hospital for a second opinion after initial dx. My local oncologist supported the second opinion. I did recieve a ton of good information from seattle cancer care alliance. I continue to see my local oncologist and I am responding positively to current treatment but I can go back to scca anytime. I have read alot about PARP inhibitors because it is hopeful info for brca positive patients. Also, I go to the FORCES website frequently for good information on brca . Good luck to you Amy
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Rachel and Amy unfortunately welcome to this site. I am relatively new here as well. My bone mets showed up in April on scans but I suspect they'd already been there for a long long time, maybe soon after my treatment ended in 2012. Lisa I certainly hope you aren't here to stay and there's a mistake, but if you are welcome and there's a lot of support and information on this site.
I had a slightly better day painwise yesterday. Today isn't that bad yet either. No major side effects from the Ibrance YET. We'll see I guess.
Well back to work for me.
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My last PET scan was in July...I have bone/liver mets....my OC when I had the results the day after was very happy for me...he gave me a hug...and usually when I get good news I hug him...so he was very happy of the results...No significant changes in my bone/liver mets..My tm in both area's have dissipated significantly..Tumor markers are below 50. So I have given the label "STABLE" in my condition...I have Halaven every other week...I have gained 15 lbs back which was very needed...I feel energized and am doing things that I could do 1yr 3mths ago...since i was diagnosed. I have days that my bone mets flair up and I'm in alot of pain, but that is when I have over done that day...Like camping and hiking i did this weekend...oh boy the pain!! but it was so worth it... I have 3 treatments tomorrow...Halaven, Flazodec, and my bone booster...so will see where it takes me this week..usually a couple days and I'm back up being my old self... April 3,2014 first Diagnosed...This was this weekend. 8/9/2015..I feel if I keep myself in the moment and positive daily...I can maintain the woman I am and was before this disease struck me..first back in 2010...Just keep praying to GOD and be HAPPY!! Love to all you ladies...I know I'm not on here much...But I read all your post...and just want you all to know that I pray for all of us everyday...Peace Out... Carla
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Carla Carla Carla! So great to hear from you and even better to get good news and see your happy smiling face! Congratulations!!!
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Carla, so happy to hear from you and to know you're doing well. What a beautiful picture and amazing smile! Wow nice drop in your tm's and so glad you gained back some of your weight, honestly you look awesome, thanks for checking in. We all think of you often. ((((Hugs)))) Annie
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Carla! You look fabulous! And woo-hoo to "stable," to gaining 15 lbs. back, and TMs under 50!!!!! Such wonderful news!!
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Stage III, here; hope I'm not intruding. I'm getting a PET scan on Thursday to check my femoral neck, which has lit up on two previous PET scans. Anyone have a met in the hip area? Anyone have a biopsy done in the hip area? Any input would be welcome. MO says it's unusual for a single met to appear in a hip, but both previous PET scans say, "Cannot rule out mets."
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Hi Elaine, I have a met to the iliac bone which is the largest bone in the hip. I thought I pulled a hip flexor muscle, hurt super bad, couldn't do any weight bearing exercise, and had a limp. When I had my bone scan, I saw it light up so I knew before they told me. I am on Taxoterrible, Herceptin, Perjeta and Zometa. Zometa is a bone builder. I've had 3 iv infusions of Zometa and 2 of THP and my hip feels perfectly fine. You would never know. My limp is gone, it doesn't hurt and I can do weight bearing exercises. I did have a hip biopsy. It didn't hurt at all. It took about a half hour but prep and waiting was a total of 3 hours. I was awake but could feel nothing. It is done using a scan and a needle. No recovery needed. Let me know if you have other questions. Hoping it is not a bone met. XO
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Hi Elaine,
I have a single bone met on my upper femur. It lit up on a PET and an onc didn't think it was a met (I had a bmx, stage IIB, grade 1, six weeks before the PET). Biopsy confirmed it was a bc met. I had no pain or other symptoms. Take care.0 -
Carla, you look fantastic! Which reminds me of a question I have for everyone. For a long time, maybe even since my first dx in 04, my color has not seemed right. I'm not overly pale, but I have no rosy cheeks, just a bland color to my face that doesn't look good and almost a gray look to it. Has anyone else noticed this? Idk if its from the cancer or the treatments, maybe because of no hormones.0
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carla so great to see your smiling face and your hopeful. news!!
Elaine so sorry for your worries. My bone biiopsy was to. my pelvis. There was no pain. I do get claustraphobic and was greatful they gave me xanax during the preop prep. Good luck to you.
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Hydranne, LOL. The pie diet sounds good to me about now. Since I started taking the steroids (which I was just refusing to take) I could eat constantly. Unfortunately, I don't have the energy to work it off. Of course, I can't sleep. Planet Fitness is open 24 hours. Maybe I should get up and go. NOT! I gained 5 pounds since pre-steroids. Sonofagun! Also, I'm still going from scared to what? Calm? Focused? Curious! Doc upped my SSRI today (if she sent that to the pharmacy). I didn't want to, and it probably won't help; but I do believe I need something.
Hi Rachel. I got a sudden slight fracture around my sacro-iliac joint. I couldn't walk without a cane after that . . .. until they radiated the area. Ah. At the second treatment, I didn't need help getting into the machine. I only had a few treatments, maybe 2 weeks, but it sure changed my life. When that happened and I couldn't walk, I thought I was headed for the end. Definitely let it heal. Maybe you can get your doc to refer you to a RO to see if that can help. Just be very careful. I'm sorry you are in such pain. I know it is a lot of pain. Plus the fear of being kind of helpless. Again, I'm sorry this had to happen. 10-12 weeks sounds like a long time, but we all know how fast time moves. Get DH to rub with warm oils. Give the area some TLC. Maybe it will cooperate better with you. LOL
That is great news Deanna! We really know to appreciate when we feel well. You enjoy it.
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Carla it is so good to see you post. Thanks for checking in with your good news. Stable! Wowsa!!!!!
HLB I was very gray during Taxol treatment, but my color looks far more normal with my current chemo. It's a little hard to tell with my bald head and now my bald brows.
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txmom, exbrngrl, 3-16-2011,
Thanks for sharing your experiences. They confirm what I thought: if the femoral neck lights up again, MO will order a biopsy. If it's a met, I'll be back! txmom, my primary tumor was HER2+, but as MO notes, when cancer finds a new home, it often changes its profile. Will just have to wait and see, I guess.
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just posted in the Ibrance thread but also wanted to post here. Had my appointment with my onc to go over scan results. No organ involvement, bone only. Scan shows some healing/ scarred areas on the bone where the cancer once was. Tumor markers going down with Ibrance, 203,156,106, and now 80. My onc was pleased with these results, will rescan in 4 months. Feeling relieved
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Yay Lynnwood -
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Lynnwood that is such good news! I can feel your relief! Great tumor marker numbers!!
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Fabulous report, Lynwood!!!!!!!!! Breathing a huge sigh of relief for you!!!
Elaine, hoping your biopsy comes back B9 and you'll only pop back to let us know!
Dune, you're braver than I would ever be about sharing a close up with no eyebrows, LOL! Glad your sense of humor is intact, and hope the new SSRI RX got to the pharmacy, and hope it's the perfect tweek for you.
I had a really crappy day yesterday. Don't know what the heck happened, but the pain was so bad, I ended up in bed at 3:00, wondering if I'd waited too long to switch meds. But now this morning, I feel a lot better. I think my bc cells are raging against the one-two punch of Faslodex+Ibrance, but they're definitely losing this battle!
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Elaine, praying that your biopsy shows that it is not cancer.
Lynnwood, I am feeling the relief with you, so happy for your encouraging news! My results are tomorrow so hoping to get some good news too.
Dune, always happy to see you!
Deanna, I'm sorry you bad a crappy day yesterday but glad to hear today is better. And I would have to agree, those bc cells are running scared and they will lose the battle!
Hugs to all, Annie
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