Mets to skull

PamRav
PamRav Member Posts: 348 Member
in Colorectal Cancer #1

Anyone out there have any experience with mets going to the skull bone base?  
Im a stage 4 dx the end of 2016, details in bio.  we have been playing whack a mole with various mets to liver, lungs, and chest lymph glands, I go in and out if treatment as needed.  I developed jaw, facial and ear pain tin late April. The pain was intermittent , but severe.  At any rate I finally got the dx of skullbase bone met, its a large one putting pressure on my facial nerves, thus the pain.

currently i am doing 5 SBRT tx to my skull, these are palliative for pain relief, then will be starting on systemic chemo, FOLFORI with Avastin.  I haven't had this combo since Jan of 2019 so i hope it will work. 

Any experiences, Id love to hear from you.

and a word to the wise. Explore any kind of pain thoroughly.  Push , push, psuh.  I didnt Push hard enough, i really thought this was a delayed neuropathy from the oxie 

No one no one imagined this was in my skull. 
p

Comments

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited July 2021 #2
    Oh, dear PamRav

    I am sorry to hear this.  And no, I have never heard of CRC spreading to the skull bone, just up and into the brain. 

    You advice is being taken to heart by me, as I find it very easy to write off things to getting older or being paranoid that the Cancer is back, when everything should at least be investigated.   

    I am sending good vibes your way and will release you name to the Heavens.  I pray this chemo combo will knock the mets all gone. 

    Tru

  • DanNH
    DanNH Member Posts: 186 Member
    #3
    PamRav I hope and pray that

    PamRav I hope and pray that the Folfiri will knock down this recent threat. This stuff never gives up... 

  • Tueffel
    Tueffel Member Posts: 327 Member
    #4
    Oh no PamRav

    Oh no Pamrav. Dont really want to read it... I hope radiation and chemo will have an effect and decrease the pain and destroy a lot of cells. I know that cancer spreads to the bones, skull bones I did not hear yet but then there are a lot of bones in our body. 

    I think it was for breast cancer but somewhere I read that bones mets are better in prognosis than mets in lung or liver. 

    I cross my fingers for you!

    Tueffel

  • abrub
    abrub Member Posts: 2,174 Member
    #5
    I just had a new treatment at MSK in NYC

    The new specialized treatment was  developed at Sloan Kettering and written up in this MSK’s Summer newsletter, where they refer to over 1000 cases (mine makes at least 1001!)

    To see the article, go here. https://www.mskcc.org/msk-news/summer-2021/radiation-reimagined-how-msk-experts-radiation-oncology-are-transforming-care-metastatic

    To watch the video: https://www.mskcc.org/videos/msk-echo-software-changing-radiation-treatment-everyone

    As I only had the treatment 3 weeks ago, we don't yet know if it was effective.  MRI on Sept. 2 will tell the next part of the story.  However, supposedly it has a 96% efficacy rate (who ever heard of such a thing!)  I had 24 grays of radiation in a single treatment with a goal to completely obliterate the spinal met.

    Alice

     

     

  • PamRav
    PamRav Member Posts: 348 Member
    edited August 2021 #6
    Thanks to everyone

    Thnaks all for your kind thoughts.

    Guess I'm going to be the test case on this mets....I will post on my progress.  Maybe someday it will help some one else 
    Thanks for the info, Arub, I will be checking it out.  Always good  to know there is something else possible out there.  

  • grammadebbie
    grammadebbie Member Posts: 464
    edited August 2021 #7
    In my prayers

    So sorry PamRav that you are going through this.  I don't have any additional information for you but am glad to see that there may be some new treatments available.  Will keep you in my prayers.

    Debbie

     

  • Ruthmomto4
    Ruthmomto4 Member Posts: 708 Member
    #8
    Pam

    I am sorry this is happening sending my thoughts and love 

  • sreekanth
    sreekanth Member Posts: 57 Member
    #9

    Really sorry to hear this. Regards and prayers

  • PamRav
    PamRav Member Posts: 348 Member
    edited August 2021 #10
    Finished the radiation

    I did 5 treatments of SBRT    I was told my pain will get worse before it got better and that was exactly my experience. I felt foggy and tired for about seven days post radiation. I had fullness in my ears, like swimmer ear. If i bent over my head felt like it would explode.  I was given 10 days of Decadron starting out with a high dose and then tapering . The Decadron made me have the wildest dreams when I could sleep but mostly it gave me insomnia and made me feel yucky. Now I am 11 days post radiation and the pain is mostly gone although once in a while it does strike. I'll be starting on FOLFIRI & Avastin every two weeks on Monday. I am posting this in case someone sometime has skull mets and wants to know what it's like.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #11
    Happy

    I am happy to hear that you are post radiation, and pray that each day you start feeling better - well, until the side effects of chemo hit you. I hope they are mild. I think you have been through enough. 

    Your information will surley help people in the future. Thank you! 

    Take the best care, and continue to keep us posted. 

    Tru

  • PamRav
    PamRav Member Posts: 348 Member
    edited November 2021 #12
    First scan post this episode

    As of today I have had 7 rounds of FOLFIRI, lots of nausea and fatigue.  Other than that pretty good all things considered.  Had my first scan since  treatment started. My liver and lymphs no longer glowing. Skull bone has improved vastly, just a tiny little glow that could be left from the radiation damage. 
    The facial pain has reduced.  

    so far so good?

  • abita
    abita Member Posts: 1,152 Member
    edited November 2021 #13
    I am so happy you are going

    I am so happy you are going in a positive direction!

  • suzycruise76
    suzycruise76 Member Posts: 163 Member
    edited November 2021 #14
    Congratulations,

    I am very happy for you PamRav! This is wonderful news...continue this way!

    Suzy

  • DanNH
    DanNH Member Posts: 186 Member
    #15
    That's awesome news Pam!

    That's awesome news Pam!

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    edited November 2021 #16
    Good news, Pam

    I am happy to hear this good news.  Run with it, and enjoy life. 

    I hope you have some energy to enjoy Thanksgiving and Christmas; and you get to have some family time. 

    Tru

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