Stage 4 Bone Mets ( Mom )

Karen8873
Karen8873 Member Posts: 35
edited December 2017 in Kidney Cancer #1

Hi all,

My Mom was just diagnosed  Dec 4th , Stage 4 mets to Spine & lower left rib. She just had spinal surgery to remove the L5 replaced with rods & cement . She’s in rehab and just started having severe pain on the rib / upper back. We are waiting for another MRI.  She was scheduled for Cyberknife radiation 1.10, but they may move it up to 1/3 now, pending MRI.  She did not complain of rib pain a month ago , my question is could it be spreading this fast ? I’m scared & I feel lost . We haven’t even seen the kidney oncologist yet to discuss Immunotherapy / targeted therapy . Her appt with him is 1/17 & we are in the process of setting up a second opinion with Dana Farber . 

The oncologist team at the hospital she’s in now ( Rhode Island ) seem to be focusing on the radiation & spine first . Can’t they treat it all at once ? Kidney too ? I’m worried we are wasting time . She’s been in so much pain the past few nights . She gets a lidocaine patch during the day with oxycodone & at night Dilaudin. Will the radiation help with pain ? This is so hard, & happened so fast . 

Comments

  • Abunai
    Abunai Member Posts: 173 Member
    #2
    Hi Karen

    Sorry to hear about your Mom.

    My tumors, when diagnosed, were also in my spine, my ribs, my pelvis, and femurs.

    Mine, too, seemed to be spreading very fast. In the course of a week or so after my nephrectomy I lost movement in both legs and control over my bladder and bowels (couldn't urinate without catheter). This was due to one of the tumors compressing my spinal cord at the L5 position. I had emergency surgery to remove as much of that tumor as possible. That was followed up with radiation to kill the remaining tumor. I regained control of my lower body.

    It's very important to address the spine first.

    The radiation may help with the pain. It did mine.

    It did seem, with my treatment, they focused on surgery first for those areas which could be addressed with surgery, then radiation therapy where it could be used, then they placed me on Votrient as a systemic treatment.

    Has she had a partial/full nephrectomy yet? That would seem to be the very first course of action; get rid of the "mother ship" tumor.

  • Karen8873
    Karen8873 Member Posts: 35
    #3
    Abunai said:

    Hi Karen

    Sorry to hear about your Mom.

    My tumors, when diagnosed, were also in my spine, my ribs, my pelvis, and femurs.

    Mine, too, seemed to be spreading very fast. In the course of a week or so after my nephrectomy I lost movement in both legs and control over my bladder and bowels (couldn't urinate without catheter). This was due to one of the tumors compressing my spinal cord at the L5 position. I had emergency surgery to remove as much of that tumor as possible. That was followed up with radiation to kill the remaining tumor. I regained control of my lower body.

    It's very important to address the spine first.

    The radiation may help with the pain. It did mine.

    It did seem, with my treatment, they focused on surgery first for those areas which could be addressed with surgery, then radiation therapy where it could be used, then they placed me on Votrient as a systemic treatment.

    Has she had a partial/full nephrectomy yet? That would seem to be the very first course of action; get rid of the "mother ship" tumor.

    Hi Abunai,

    Thanks for replying! My mom had her L5 tumor removed & vertebrae . She has cement & then rods all  the way up to L2. 

    They had to address the spine as an emergency as well. She’s recovering well from surgery , and onto radiation next week. We see aKidney cancer specialist in Boston at Dana Farber Tue hopefully . I’m waitomg to hear from radiation on her schedule to see if we can keep the appointment . As you said we need to address the mothership! She still has her kidney. This just happened so quick with the spine , we had to start there first! 

    What type of radiation did you have ?

  • Abunai
    Abunai Member Posts: 173 Member
    edited January 2018 #4
    ALL kinds!

    I've had four series of treatments in all:

    • IGRT twice (Image Guided Radiation Therapy)
    • CyberKnife once
    • TrueBeam once

    The L5 replacement sounds like a pretty invasive surgery that I'm sure took a lot out of her. They wouldn't want to do that and the nephrectomy at the same time. I'm sure they'll get around to the nephrectomy soon.

    Your mom and you and your entire family have my best wishes.

    I know, it hits like a ton of bricks. She's lucky to have you by her side.

  • Karen8873
    Karen8873 Member Posts: 35
    #5
    Abunai said:

    ALL kinds!

    I've had four series of treatments in all:

    • IGRT twice (Image Guided Radiation Therapy)
    • CyberKnife once
    • TrueBeam once

    The L5 replacement sounds like a pretty invasive surgery that I'm sure took a lot out of her. They wouldn't want to do that and the nephrectomy at the same time. I'm sure they'll get around to the nephrectomy soon.

    Your mom and you and your entire family have my best wishes.

    I know, it hits like a ton of bricks. She's lucky to have you by her side.

    Thanks again !

    I will do whatever it takes to get her the best care !! Best wishes to you as well!

  • Karen8873
    Karen8873 Member Posts: 35
    edited January 2018 #6
    Update on my mom

    She is finally home after a month long hospital stay ( including rehab ) She started radiation on Monday , she needs a total of 10 treatments . We went to Dana Farber Tue to see a Kidney Oncologist , Dr Toni Choueiri . He advised a kidney biopsy is needed to treat properly . RI Hosp only biopsied her lymph nodes . He also ordered new CT scans because the ones she had are now about a month old .The kidney mass is 3x4 cm, left Kidney only. So he wants the biopsy done ASAP, probably sometime next week so we can figure out the course of treatment . He gave us about 3 options , one I believe was a clinical trial . I’m worried the biopsy may be too much on her during radiation ?  She’s still recovering from a big spinal surgery too . I just don’t want to exhaust her , but I know it’s needed in order to start treatment on the kidney as soon as radiation is done.  So far she’s had 3 treatments and her rib pain has subsided! Not sure when side effects will start ?  so far she’s just been a little tired . 

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