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Bone Mets Thread

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Comments

  • Stilts
    Stilts Member Posts: 228
    edited April 2017

    Just checking in...I read a lot more than I post..Bluefrog- love your pictures and Wendy- you are beautiful with the new "hairstyle". lwrite- can't believe how therapeutic working part time is for me (I'm a hospital pharmacist)...much better than sitting at home worrying about BC !...and the $ are a big help as my husband is retired.

    Appointment with Orthopedic Surgeon today...has been following me since these bone mets showed up in case I need some intervention to prevent a fracture....so far so good...he said he thought I'd definitely be "around for awhile" !!!

  • babs6287
    babs6287 Member Posts: 1,619
    edited April 2017

    imageBluefrog. Great picture of happy smiling people- thanks for sharing

    Lita sorry today was a tough for you!

    Kaption & Z. Do something great this weekend so you can avoid scaimageimageimageimageniety!

    I had my first Gemzar infusion today. It went well. Z & Lita I told the infusion nurse about last night so she called my MO. They did a urine test to check for kidney stones. I did have an issue though . My blood pressure was really really low ( which sometimes happen with me). so they gave me IV fluids kept taking my pressure and gave me more IV liquids. When it didn't go up they called a dr in to release me. Ugh!!!!

    My daughter got a few proofs today from the photographer. Would like to share with all my bc sistersimageimageimageimageimageimage

  • zarovka
    zarovka Member Posts: 2,959
    edited April 2017

    Babs - OMG. Your daughter is a supermodel. Your SIL isn't bad looking either. Glad you made it through infusion and were able to get medical attention for the pain. Keep pulling the string on the pain till it is resolved.

    >Z<

  • GracieM2007
    GracieM2007 Member Posts: 1,255
    edited April 2017

    Beautiful pictures of a beautiful bride! Thanks for sharing Babs

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited April 2017

    Babs, absolutely stunning!

  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited April 2017

    babs. Wow beautiful indeed. Glad you are feeling better

    Kaption. Hang in here. Hoping you are feeling more energized

    Wendy. Was high indeed. You got this one hot mama.

    Sill looking for the perfect place to move into. Still looking at June 1st as the latest but I a! Read now if I could just settle on something. Such a huge lifestyle change.


  • Lita57
    Lita57 Member Posts: 2,338
    edited April 2017

    Babs those photos are Fabulous!

  • zarovka
    zarovka Member Posts: 2,959
    edited April 2017

    I got my PET scan report back, already. The result are good. If this report is to be believed, things have improved since December. A little strange since I was stable from July 2016 to December 2016. Either the changes I made to my complementary regime in January are working, or scans are imprecise. I am willing to believe either.

    I have no hyper-metabolic lesions at all, anywhere, except my sternum. All the weird lymph nodes that have been lighting up and disappearing in these reports have resolved, suggesting they were inflammation not cancer. (Someone somewhere was asking whether inflammation in lymph shows up in PET scans. It does.)

    There is no hypermetabolic activity in my breasts, armpit lymph nodes or live. My liver had 7 ~1cm lesions nodes originally. Radiologist believed he saw some un measurable residual mets in December. Everything in my abdomen and my pelvis looked normal to this radiologist. So, yay.

    The only thing that got his attention was the sternum:

    Sclerotic focus in the sternum, maximal SUV 2.9 (2.0 on Dec 15, 2016 and 2.5 on Apr 06, 2016). Increase in FDG uptake of a sclerotic focus in the sternum. I am concerned about the possibility of a skeletal metastasis.

    If someone else were to post this result, I would say

    1. Small variations in SUV are not meaningful generally.
    2. The most recent scan was done on a different system than the first two, introducing additional error.
    3. The sternum is hard to scan with PET because it is a bone on the surface and a common source of error.
    4. The sternum has lit up a bit since my first scan, so nothing has changed.


    I would be interested in how others read this result. I thought sclerotic lesions were healing lesions, yet this little bugger continues to light up. Possibly it is lighting up more with time.

    I have always wondered why I don't get measurements for this lesion in my sternum. Do they not give a size for bone mets, as a rule?

    Basically, awesome results, but these scans never seem to let us just kick back and relax ...

    >Z<

  • KDs-Husband
    KDs-Husband Member Posts: 75
    edited April 2017

    Z, Awesome scan. That spot on your sternum? Obviously, that's specifically due to that ice cream sandwich right? Winking

    Praying for a good day for all.....

    Louis

  • babs6287
    babs6287 Member Posts: 1,619
    edited April 2017

    Z I would consider that a great scan!!!! Please go celebrate.

    Bab

  • Lynnwood1960
    Lynnwood1960 Member Posts: 1,107
    edited April 2017

    Z, I think that's a great scan! I also think sclerotic mets are healed mets. My onc says its like a "scar" on the bone from where it's healed and will always show up on scans. I have sternum mets also but not much information about it, just noted on scans that it is there, also clavicle. I think SUV uptake is pretty low. My original SUV up takes were 4-9 in various ones and my onc called it low volume mets. GREAT about the liver

  • micmel
    micmel Member Posts: 10,055
    edited April 2017

    Z~God bless you Z, and god bless your scans. You are A fantastic woman, who is quite a fighter!! Congrats! ~M~

  • Kaption
    Kaption Member Posts: 2,934
    edited April 2017

    Z- that is a great scan! Do relax and enjoy that amazing news. I know how you feel about being able to take in all the good news and just enjoy it- but do it!!!

    Bans- so beautiful. Glad you have that amazing experience through all of this.

    Patty- thanks! I hope you find the RIGHT spot for you. My daughter is also making a major life change. I hope you both find a homey, comfortable place!!

    Here's to a good weekend for everyone. Let's all feel a little better!

    Off to my MRI :-) Valium time.


  • micmel
    micmel Member Posts: 10,055
    edited April 2017

    kaption~ sending you thoughts of strength,for a good MRI scan!! I will be up and scanning next Friday at this same time. I am hoping you as well will have wonderful news!! More good news more more !! Hugs to you. ~M~

  • dlb823
    dlb823 Member Posts: 2,701
    edited April 2017

    Awesome scan results, Z! And I agree with you that differences can be not only the equipment, but also the radiologist him or herself. Scan reading is far more open to interpretation than we realize. And about the complementary changes you mentioned... Does any one thing stand out in your mind as possibly having more impact than others? Just curious...

    Babs, your daughter's wedding photos are amazing. The one with the horse and carriage and taxi in the background looks like it's out of a fashion magazine. Iconic New York, beauty, love, fashion... Wow!

    Patty, I must have missed your earlier post about moving. What sort of place are you looking for? I hope you'll have LOTS of help with the actual move.

    Love the photos, Rachel! Your daughter looks like a natural on stage! Enjoy and be sure to report back to us on the LBBC activities.

    Hugs and happy weekend to everyone. Louis, is KD still in the hospital? Hope she's doing much better. Deanna


  • PattyPeppermint
    PattyPeppermint Member Posts: 8,950
    edited April 2017

    z great news !!

    Deanna. Still looking. I am actually having a hands free move. Ex hubby , dss, and several make friends ti help. Not at lotyo move. Deae fruend and also my sis both will be here to help set up place




  • MJHJAN1014
    MJHJAN1014 Member Posts: 622
    edited April 2017

    Babs-thanks for sharing the wonderful photos!

    Kaption-thinking of you during this @#$%^ scanxiety phase....

    Love to all, MJH

  • Lita57
    Lita57 Member Posts: 2,338
    edited April 2017

    Wow, Z! You couldn't have asked for better results.

    I totally agree with what Deanna said. SO MUCH is open to interpretation and skill of the radiologist. I was also told that any SUV less than 3 is really small potatoes and nothing much to worry about.

    I'm having a PET in a couple of weeks...I hope MORE of us have excellent results just like you.

    Go out and celebrate with another ice cream sandwich!




  • Lee1963
    Lee1963 Member Posts: 10
    edited April 2017

    Hi Denise/Ottawa,

    So sorry to hear you too are going through this. I went for a CT for diverticulitis, which lead to a bone scan, which lead to an MRI, and another more thorough CT of chest and abs. Various bone mets in hips, spine and ribs. I had IDC 3.5 years ago, stage one , grade 2. Had lumpectomy and radiation. Believed it was all done with until this smack in the face. Now it's all oncology appointments and treatment plans. As you, I'm angry and shocked to have to deal with again. Wishing you well...I'm going to the Irving Greenber Family Cancer Centre, I'm from Burnstown (kind of neighbours ;))

  • Kaption
    Kaption Member Posts: 2,934
    edited April 2017

    Thanks micmel and MJH for the wishes. Waiting patiently (?) till Monday. Thanks to everyone for the positive messages. Feeling much better! Happy weekend to all!


  • Vevs
    Vevs Member Posts: 81
    edited April 2017

    Brilliant Z!

    I agree that sclerotic is likely healed. When I had the first ct scan after the end of chemo my husband asked the Oncologist what he would expect to see and his answer was more sclerotic lesions than wereon the previous scan. My lesions have always been sclerotic and My Oncologist actually said that I was in a natural remission on diagnosis, this was prior to chemo. I find it all very confusing.

    I am so happy for you, please do share your top supplements if you have time in between celebrations xx

  • GracieM2007
    GracieM2007 Member Posts: 1,255
    edited April 2017

    Z...great news!!!!! I agree with everyone else... take this news and go celebrate it!!!!!

  • dcjoslin56
    dcjoslin56 Member Posts: 6
    edited April 2017

    My recent PET scan revealed that ALL BUT ONE of my tumors have disappeared! Even the 2 in my bones! The one that is left is in my left chest all, and causes my left arm and hand to be completely and very tight. How common is it to have bone mets disappear?

  • JFV
    JFV Member Posts: 341
    edited April 2017

    Hi ! I have a question. I have multiple bone mets and haven't started treatment. I am wondering if any of you had body pain prior to treatment and how you managed the pain.

    I have mild pain most days but then I periodically experience pain head to toe. My joints, muscles, even my skin seems to hurt.

    Any advice would be appreciated.


  • micmel
    micmel Member Posts: 10,055
    edited April 2017

    Jfv~yes I had pain in my back primarily and didn't know what it was from. I thought I was just getting old. Low and behold after diagnosis it was in my pelvic area and back which is why I had pain. I take a 5mg Percocet every four or five hours to take the edge off. I also jog and stretch to release tension in my muscles. And joints. It almost seems as if the pain would travel on different days. I never had skin issues. That is something hopefully someone else would chime in on. I know Dianarose has some skin pain and that was from her heavy chemo that she was recovering from. Because her counts were low. I think it might have been from the taxol as well. Time seems to help that as well! Please don't wait to seek the treatment for the mets. I would never want them to rip through your body. Get a handle on them now and let them monitor you. I know it sucks, but if they don't know what's going on they can't choose a treatment that will best suit your cancer and attack those biatches! Hugs and comfort to you. Keeping all close in prayer! ~M~

    DCJ~I have heard of mets shrinking that cannot be detected that's good news!!

  • melmcbee
    melmcbee Member Posts: 371
    edited April 2017

    Love the pics. It is like a fairytale. So beautiful. Zarovka congrats on scan results. Dcjoslin. Si happy ffir your results. Lita and patti im sending positive thoughts and prayers for you. Ladies this is the strongest group that ive seen. I wish everyone good scans and improved health. I should hear next week whether i can affrd the ibrance. Wish me luck. Gentle hugs

  • micmel
    micmel Member Posts: 10,055
    edited April 2017

    Mel~ there has to be assistance programs and or state insurance.I never ever like to hear anyone having to worry about getting medicine that will save your life! I saw someone In a thread say they even had an xtra script for ibrance 125mg. Talk to your hospital social worker. They know of all grants and programs that we don't have access to. You're oncologist should be able to get samples for you. Dont give up. My social worker at my hospital hasbeen a guiding angel gift and now will be considered a life long friend! Reach out to whomever you can. You can apply for state assistance. Especially If you have medical bills that you can't pay. There are so many avenues to explore. You shouldn't have to worry about paying for this. Sending gentle hugs ~M~

  • Kaption
    Kaption Member Posts: 2,934
    edited April 2017

    The Patient Access Network helped us pay for Ibrance. They are wonderful!


  • JFV
    JFV Member Posts: 341
    edited April 2017

    Thank you Micmel. I was diagnosed via PET scan the day before Easter. My bone marrow biopsy is scheduled for May 3rd. Once the Onc gets the results she'll set up treatment. So, about 15 days until I have a plan.

    Micmel like you my primary symptom was back and joint pain. I assumed age or aromasin was at fault. I was trying to get off aromasin. The Onc did a tumor marker test that was elevated. I have tramadol but didn't want to use it. Looks like I need to start

  • melmcbee
    melmcbee Member Posts: 371
    edited April 2017

    Thanks Micmel. I have insurance thru my employer that I just dont know what it will be. I will research all help that I need. I will be so thankful. Gentle hug

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