STEAM ROOM FOR ANGER

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  • KIDI919
    KIDI919 Member Posts: 425
    edited May 2021

    runor: my sister is a huge pink floyd fan. one time my son rode from buffalo to N.C. with her on vacation....that's all she played. He said he never wanted to hear another song by them again! LOL.

    ctmbsika: seems projects always take longer than you think they will. soon you will be able to enjoy.

    I have a dr appt this tues. swelling in the right side of my clavicle. hoping it's nothing.


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  • GoldensRBest
    GoldensRBest Member Posts: 447
    edited May 2021

    runor - my favorite part about music is how it can transport you to another time and place.

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  • JCSLibrarian
    JCSLibrarian Member Posts: 564
    edited May 2021

    I was just diagnosed with leptomeningeal carcinoma. It can happen with TNC and those that are terribly unlucky. My legs are very numb. So numb I cannot walk and I can pee (a lot) or poo (not at all). This is totally miserable. I am currently in the hospital awaiting the installation of an ommaya protocol for methotrexatelo. Oncologist says three to four months. I really thought I would get longer, but will be glad for what I got.

    Take car

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  • candy-678
    candy-678 Member Posts: 3,950
    edited May 2021

    JCSLibrarian- OMG. I am so sorry to read this. My prayers to you.

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  • edj3
    edj3 Member Posts: 2,076
    edited May 2021

    JCSLibrarian wow, I am so sorry.

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  • cm2020
    cm2020 Member Posts: 615
    edited May 2021

    JCSLibrarian.....I so sorry. My heart goes out to you. Many gentle hugs.

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  • GoldensRBest
    GoldensRBest Member Posts: 447
    edited May 2021

    JCSLibrarian - just know that we are here for you. To say I’m so sorry doesn’t convey the depth of emotions I feel at your news. Gentle hug

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  • Beesie
    Beesie Member Posts: 12,240
    edited May 2021

    JCSLibrarian, I am so sorry.

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  • ctmbsikia
    ctmbsikia Member Posts: 1,095
    edited May 2021

    Sending a cyber hug @JCSLibrarian.

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  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited May 2021

    JCS, sorry doesn't say enough for me but it is the best word I have, so very sorry for your diagnosis. Sending virtual hugs and prayers for you.

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  • moth
    moth Member Posts: 4,800
    edited May 2021

    JCS, oh I am sorry . Lepto just sucks. I hope your procedures today go well and you get comfort.

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  • bcincolorado
    bcincolorado Member Posts: 5,758
    edited May 2021

    JCS I am so sorry. to you.

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  • Betrayal
    Betrayal Member Posts: 1,374
    edited May 2021

    JCSLibrarian: Sorry to read of your latest dx. Sending ((hugs)).

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  • KIDI919
    KIDI919 Member Posts: 425
    edited May 2021

    Dear JSCLibraria: My heart and prayers go out to you.

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  • runor
    runor Member Posts: 1,798
    edited May 2021

    JCS, oh my god. I am so sorry you are dealing with this. Prayers to you and everyone who loves you. 

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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited May 2021

    JCSLibrarian

    I am so very sorry. I am sending you more hugs if you have room for them. (( ))

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  • DogMomRunner
    DogMomRunner Member Posts: 616
    edited May 2021

    JCSLibrarian - I'm so sorry. I can't imagine what it would be like to get that diagnosis ❤️

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  • Jelson
    Jelson Member Posts: 1,535
    edited May 2021

    JSCLibrarian - I hope your treatment brings you relief and more symptom free time than your oncologist predicts.

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  • Beaverntx
    Beaverntx Member Posts: 3,183
    edited May 2021

    JCS, thinking of you. Prayers for comfort at the very least.

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  • JKL2017
    JKL2017 Member Posts: 437
    edited May 2021

    So very sorry, JCS. You’ll be in my prayers.


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  • BlueGirlRedState
    BlueGirlRedState Member Posts: 1,031
    edited May 2021

    JCS - so sorry, sending hugs and hoping you find comfort. Cancer really sucks!

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited May 2021

    JCSLibrarian, what a blow. I'm so sorry to hear this. In my notes that I keep on possible future treatments, I have one that says Keytruda was turning out to be effective on leptomeningeal bc mets. Please ask your onc to research thisasap! I might have read it on the clinical trials thread around January; could have been something Cure-ious said.

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  • moth
    moth Member Posts: 4,800
    edited May 2021

    re Keytruda and lepto mets https://www.onclive.com/view/pembrolizumab-shows-i...


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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited May 2021

    Moth, you're awesome. I will pm this to JCSLibrarian and tell her you found it.

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  • jaycee49
    jaycee49 Member Posts: 1,277
    edited May 2021

    I was just diagnosed with 15-20 brain tumors/lesions all over my brain. I have been having a variety of disabilities, both physical and cognitive for a month or so. I met with my new RO yesterday and decided very quickly to do a round of 15 whole brain radiation treatments starting tomorrow. I decided to get in and out quickly and see what kind of progress we can make short term. I am taking very high dose steroids (like the horses take, they must hate it but they can't complain) and at first, felt horrible. Now I am getting used to them. I skipped a dose at the beginning and felt worse. I am sleeping maybe 2-3 hours a night. When you sleep so little, the time starts to seem like it is going backwards. You look at the clock at 3 AM. You look again and it is 2 AM. I will be taking this med for about a month.

    I am not a "pull out all the stops" person. You have heard me talk about death and dying. I am ready to die. But when this hits you, you go into "normal person mode." Most normal people would want to fight. As soon as I realized what I was doing, I calmed down. I will pursue a short course of radiation and see how it goes. I will not keep going to extremes.

    Oh, and I still suspect the vaccine as having a part in all of this. The coincidence is too severe. But so much is unknown. Medicine is so primitive.

    I like all of my doctors and feel I am in good hands. Thanks for all of your support.

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  • SF-Cakes
    SF-Cakes Member Posts: 316
    edited May 2021

    Jaycee, thank you for the update, I have so appreciated your words and your fight for the End of Life option in your state. I think I would likely go into "normal person" mode, too, and then see how the treatment goes. It sucks about the insomnia. I genuinely hope you get some relief from that. Sending you a great deal of love.

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  • runor
    runor Member Posts: 1,798
    edited May 2021

    Oh, Jaycee...... no words.

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  • GoldensRBest
    GoldensRBest Member Posts: 447
    edited May 2021

    Jaycee - I’m sorry doesn’t seem enough - virtual HUGS

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  • candy-678
    candy-678 Member Posts: 3,950
    edited May 2021

    Jaycee- Thank you for giving us an update. Post when you can. Do they think it is the MBC, mets to brain? Or not related to the MBC? My thoughts are with you.

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  • Elderberry
    Elderberry Member Posts: 993
    edited May 2021

    JCSLibrarian: what devastating news. There are no words suitable. But I am so sorry and wish you peace and comfort.

    Jaycee: Insomnia. They use it as torture in some places. When you are awake your brain just fills in the spaces with all kinds of shit. Worry (the worse kinds), songs you actually hate (shut up brain!) .....the list goes on. You look at the clock and think "Oh well, as long as I get six hours" then the clock again "well as long as I get four hours" . I hope the rads go well and I hope you can get some decent sleep. I am sorry you are in this shit-show.

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