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Bone Mets Thread

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Comments

  • amarantha
    amarantha Member Posts: 330
    edited February 2018

    Bluepearl I would like to know how your sister was able to retain the ability to walk after her vertebrae collapse - what was done for her specifically ?

    Thank you.


  • janky
    janky Member Posts: 478
    edited February 2018

    There is always hope and I hope and pray you are going to be among the growing community of what my MO is calling 'chronic' disease, a group of people that have been living longer on the newer treatments...that's what I am hoping for as well ;) I see you had bone radiation, did it cause your spot/cancer to go away? (not sure if that is a medically correct term). I have a small lesion on my right hip and would really love it to go away, so far it is being treated with Femara since July 2017 and now Ibrance since February 2, 2018.

  • jensgotthis
    jensgotthis Member Posts: 673
    edited February 2018

    Janky, yep,the SBRT and letrozole/Ibrance combo seem to have done the trick. The area which was big in my hip is not metabolically active on my scans and everything shows as healing. I was at risk for fracture so they did the rads. I trust you’ll have great results in Femara. Love your optimism. I pray we all become chronic too

  • janky
    janky Member Posts: 478
    edited February 2018

    Yayy! more glimmers of hope then, I am taking part in a Radiation Trial that is looking at 1, 3 or 5 treatments of a high radiation dose given over a two week period - dang I am in the Standard Arm, so am wondering about traditional Radiation which I have been told I can have to treat pain (which I don't really have yet, only minimal) or should the spot grow - more options to consider, thank you :)!

  • LaurenH
    LaurenH Member Posts: 382
    edited February 2018

    thanks for the feedback ladies... i’ll take your advice and ask these questions at my appt.

    XO

    Lauren

  • Lena_Margaret
    Lena_Margaret Member Posts: 7
    edited February 2018

    Hello ladies, I found out Friday that I am now a member of the bone mets club. More scans this week will hopefully verify it is by itself (T4). I was informed I will have rads after another biopsy to verify which breast cancer this is (multiple diagnosis'). A biopsy of chest skin a few weeks ago indicated a change in receptor status.

    Can I state the glaringly obvious? This is getting old. (Lol- Like I said: obvious.)

    It will take me a bit to get caught up with this thread. I will try to be unobtrusive and just hang out.

    Blessings!

  • amarantha
    amarantha Member Posts: 330
    edited February 2018

    Wow Lena, I am so sorry to welcome you to this club. But of course we are glad to have the company. :-)


  • txmom
    txmom Member Posts: 220
    edited February 2018

    Hi Everyone, thanks so much for the feedback for my rads consult. Overall, it went well. Wishing everyone the best and hope u are enjoying the weekend.

  • Gumdoctor
    Gumdoctor Member Posts: 618
    edited February 2018

    Welcome to our group Lena.

    So sorry you have to join us but there is power in numbers. I am pretty new here also and will look forward to visiting with you on your journey.

    TxMom - looking forward to hearing what your RO had to say.


    Warmly,

    V

  • chef47
    chef47 Member Posts: 58
    edited February 2018

    Hi sisters, I wanted to check back in and let people know how my surgery went and share what's going on now. So I had the proximal femur replacement surgery(still hoping to find someone else who had this surgery)and to be honest it has been much worse than the dr prepared me for, like he left out a lot of info on pain involved, length of time of recovery and other problems that are common with the surgery. So, I am 2 1/2 weeks out! Non weightbearing “walking with a walker" for 4 more weeks then switching to weightbearing walking with a walker at 6 weeks. The surgery went very well in their eyes so I'm good I guess, just more pain than I expected. Also finally met with onc whose plan is to start tamoxifen and then bisphosphonates when surgeon oks it. I have small mets in lungs, liver, nodes and other bones. We are hoping that since I didn't take the tamoxifen for the past 5 years(my choice) that it will kick a$. I do have the option of 2 injections a month plus chemo but I'm hoping the tamoxifen will show improvement. My onc felt the same way. I'm assuming that there's 2 philosophy's, one is to start With the big stuff first hoping for better and longer results, still the other is to start with the mildest hoping to save the big stuff for much later.

  • amarantha
    amarantha Member Posts: 330
    edited February 2018

    Hello Chef, last time I went for chemo there was a gal next to me who had just had that surgery you mentioned. She seemed to be doing great. I hope your recovery goes well, it sounds pretty scary from what you've shared. Rooting for you.

  • chef47
    chef47 Member Posts: 58
    edited February 2018

    thank you amaranths! Glad to atleast hear of someone else that’s had the surgery and is doing good:)

  • zarovka
    zarovka Member Posts: 2,959
    edited February 2018

    Lena - The diagnosis sounds pretty positive, in a crappy sort of way. and the plan is solid. Execute and keep your eye on the horizon.

    Chef - here's to a speedy and complete recovery.

    >Z<


  • Jaylea
    Jaylea Member Posts: 440
    edited February 2018

    Lena, so sorry you're here but your voice is a welcome addition.

    Chef, welcome as well. I hope tamoxifen does the trick. I think starting with that is a reasonable course. You may get several years out of it. I seem to recall reading in "The Emperor of All Maladies" that tamoxifen has been around and effective for decades. In the meantime hoping you heal well and make great progress from your surgery.

  • Lena_Margaret
    Lena_Margaret Member Posts: 7
    edited February 2018

    Amarantha, Gumdoctor, zarovka, and Jaylea: many thanks for the welcome.

    Zarovka, you have a good point, in a crappy sort of way, things do sound pretty positive. I do need to keep my fingers crossed that a slew of scans on Tuesday don't show any further surprises. As you can see from my info in the footer, my bc experience has been quite different than typical. (3 different primary diagnosis') But, my mo has put my case before the tumor board with recommendations that even if I have 2 different types of metastatic bc, it will be treated as 1. A bone biopsy asap will tell us the type of bc this is. The biopsy that just returned with changed receptors was from skin on my chest. So...wait and see...

    Note: I know a lot of women read these stage IV forums looking for info. I want to caution anyone reading: my genetic issue is fueling my bc or obviously aggravating it. My situation is NOT typical in any way. Please keep that in mind when reading. Thanks! (The possibility of scaring other bc patients has caused me to be very wary of posting. Or, possibly causing unnecessary fear, obviously dealing with bc is a scary journey. )


  • silviah
    silviah Member Posts: 35
    edited February 2018

    Tomorrow is my PET scan at 10a. I'm super anxious and nervous and just plain freaking out. No starch for dinner...no eating or drinking anything but water for 6 hours before. Can I take a Xanax?

    I've been a wreck for days. I have not been fun to be around. My DH has been an absolute doll though.

    I took the whole week off of work so I can process whatever the results are.


  • zarovka
    zarovka Member Posts: 2,959
    edited February 2018

    Siliva - the procedure is a piece of cake. Please don't worry. Waiting for results is a tour of the 7 rings of hell. We're all familiar with the fear. In the end you, however, you get results and you deal with them. It does happen.

    >Z<

  • Minnie31
    Minnie31 Member Posts: 494
    edited February 2018

    HI, chef 47,just asking, if it was only femur, no damage to upper hip/pelvis. I have been told it would have to be part pelvis, femur replacement (if it eve happens). Best wishes for a full recovery. I know I have pain now and never imagine being without it. So hope your op is a big success xx

  • Maire67
    Maire67 Member Posts: 418
    edited February 2018
    Hi Silviah. Z is right . The actual test is not bad at all. The prep is annoying especially since it reminded me of my craving for carbs. I just had a PET last week. Prior to the scan they ask you to sit quietly in a darkened room. Since this was my 6th scan I promptly fell asleep.( I find I can’t sit still for more than 15 minutes these days without falling asleep, except at 3 am..). The actual test only took 30 minutes. I asked that my arms be along my side instead of above my head on the table because of mets in my neck. As Z said waiting for results is a pain. Try to relax. Good luck.
  • chef47
    chef47 Member Posts: 58
    edited February 2018

    Hi Minnie31, I guess we all call the hip a different area than each other or drs, my damage was the upper femur which they call hip. The replacement starts at the hip area, the ball, not the socket, then about half way down my leg. I do have mets to pelvis area but no need for surgery. I could t really find much info on the internet about the surgery at all. It’s relatively newish and rare, as in not that many drs do it.

  • amarantha
    amarantha Member Posts: 330
    edited February 2018

    Chef I think that's what the French call "le col du fémur" - the collar of the femur. Wow that sounds like a pretty extensive surgery. I do hope you recover full movement eventually, and without pain. Is the pain any more manageable ?

  • chef47
    chef47 Member Posts: 58
    edited February 2018

    thank you amarantha! I have just in the last few days begun to get better each day rather than worse:) the first 2 weeks were made worse due to uti and then my hip came out of its happy place twice which made me sore for awhile. Last night I slept thru the night for the first time without waking for pain meds or bathroom trips so I do believe I’m on the mend:)

  • Jaylea
    Jaylea Member Posts: 440
    edited February 2018

    Silviah, now the scan is over so you can check that off your list. I can't remember how long results take. Some women want results as soon as they are available. Others wait to meet with their MO for a complete discussion. Either way, you've got your family surrounding you and all of us here supporting you. Praying for the best possible news. Keep us posted.


  • CloudNine
    CloudNine Member Posts: 19
    edited February 2018

    Animal Crackers - thanks for your encouragement. I'm finally feeling better and can walk again without a cane. I noticed on the IV bag that it says to set the drip for 15 minutes. I'll ask my nurse if we can slow it down next time - she was one of those by the book nurses, though:(.

    Hate to be a bothersome newbie, but was wondering about markers - are they accurate enough to base your treatment on them? Are the tests run weekly, monthly? I had an antigen 15.3 test come back at 19 u/ml. I assume that's bad?


  • CloudNine
    CloudNine Member Posts: 19
    edited February 2018

    Silviah - praying for you too! It was just a few weeks ago and I remember waiting for the "call". Hope yours is filled with good news. All the testing is mentally taxing, but try to look at just the next step and don't feel alone. We care

  • CloudNine
    CloudNine Member Posts: 19
    edited February 2018

    blue pearl - I would also be interested in knowing how they helped your sister. I have a tumor on my L4 L5 vertebrae - and worry about that scenario happening to me. Thanks ahead for any info

  • illimae
    illimae Member Posts: 5,736
    edited February 2018

    Cloudnine, TM’s of 19 are within the normal range, I doubt any MO would be concerned with that number. How often they’re checked varies and any concerns with TM should be confirmed with scans before treatment decisions are made. Personally, I wouldn’t worry about it, my latest was 17 :)

  • Bliss58
    Bliss58 Member Posts: 938
    edited February 2018

    Haven't been here in a while and just catching up with pages of reading, and I'm so very sorry to hear of Aurora's passing. I'll miss her presence here. Thanks Lynne for sharing.

  • blueshine
    blueshine Member Posts: 247
    edited February 2018

    Hi All! I lost my post, but I am writing again. Does someone knows the difference between Zometa and Xgeva and which one is better. I had already one, but the insurance gives me hard time for the next .

    I don't know is it worth fighting for Xgeva.

    Thank you in advance for your suggestions and opinions

  • silviah
    silviah Member Posts: 35
    edited February 2018

    No progression! My oncologist emailed the results! I'm so glad she got back to me so quickly! !! Thanks for everyone's advice & sweet words!!!

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