STEAM ROOM FOR ANGER
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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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JCSLibrarian- OMG. I am so sorry to read this. My prayers to you.
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JCSLibrarian wow, I am so sorry.
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JCSLibrarian.....I so sorry. My heart goes out to you. Many gentle hugs.
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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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JCSLibrarian, I am so sorry.
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Sending a cyber hug @JCSLibrarian.
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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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JCS, oh I am sorry . Lepto just sucks. I hope your procedures today go well and you get comfort.
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JCS I am so sorry.
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JCSLibrarian: Sorry to read of your latest dx. Sending ((hugs)).
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Dear JSCLibraria: My heart and prayers go out to you.
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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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JCSLibrarian
I am so very sorry. I am sending you more hugs if you have room for them. (( ))
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JCSLibrarian - I'm so sorry. I can't imagine what it would be like to get that diagnosis ❤️
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JSCLibrarian - I hope your treatment brings you relief and more symptom free time than your oncologist predicts.
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JCS, thinking of you. Prayers for comfort at the very least.
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So very sorry, JCS. You’ll be in my prayers.
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JCS - so sorry, sending hugs and hoping you find comfort. Cancer really sucks!
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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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re Keytruda and lepto mets https://www.onclive.com/view/pembrolizumab-shows-i...
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Moth, you're awesome. I will pm this to JCSLibrarian and tell her you found it.
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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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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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Oh, Jaycee...... no words.
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Jaycee - I’m sorry doesn’t seem enough - virtual HUGS
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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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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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bcincolorado: I was an army brat too. Pay, pack and travel. As a household we kept things to the basics. Every two years, pretty much, a different neighbourhood, a different school, different friends. The only "constant" in my life were my toys as a little kid and other favourite possessions. I still have silly attachments to some things.
runor: we still have the Thorenz turntable we bought in the early mid-eighties, and Mordan-Short speakers (small and powerful) . They were considered high-end back then and are still excellent. We do dust off records. Eclectic taste: blues, rock-a-billy, jazz, mountain, country, folk, classical (can you get much different than Miles Davis and Commander Cody and the Lost Planet Airmen?) Oh and I dance. I love to dance. Our CD collection has also grown to crazy numbers. I think I should go put on Meatloaf's "Bat Out Of Hell" :-)
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Jaycee, I am so sorry. I will be one of the many of us holding your hand through the radiation treatments.
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