LMD (leptomeningeal disease) is kicking my a**

This topic has 14 replies, 7 voices, and was last updated 5 years, 7 months ago by PoppaDave1961.

Post

- April 9, 2018 at 2:39 am
- Quote
doxiemom
Participant
Hi everybody, you may have read my story…I was diagnosed last May with metastatic melanoma (first presented in my breasts). Started Keytruda and ended up with mixed results. Breast tumors disappeared, but melanoma surfaced in spinal fluid (LMD). Fast forward, I am back on targeted BRAF therapy. Fingers crossed I can tolerate it this time and it is effective (couldn’t tolerate it in the past-fevers/rashes). My mobility has become increasingly impaired (I now use a cane and walker), which makes me depressed. Anyway, I want to thank Celeste (Bubbles) for sharing so much valuable info and encouragement with this group and also wish everyone the best in this struggle with “the beast.” ~ Carrie (aka doxmomma)

Viewing 2 reply threads

Replies

- - April 9, 2018 at 8:15 pm
  - Quote
  Rob578
  Guest
  I recall my oncoligist's talking about a patient on Mek & Traf having severe side effects. She said 2 weeks on and 5 days off fixed up the problem .
  
  Feel real bad for your impairment and hope a new round of targeted therapy will be more succesful.
  - April 10, 2018 at 12:50 am
    
    Quote
    doxiemom
    Participant
    
    Thank you, Rob for your reply. I am now on TAF/MEK combo 4 days on/3 days off and am hoping this dosage will be tolerable. All the best to you, Carrie
  - June 17, 2019 at 10:39 pm
    
    Quote
    PoppaDave1961
    Participant
    
    How are you doing? How did the taf/mek work against the leptomeningeal disease?
- - April 10, 2018 at 12:35 am
  - Quote
  Bubbles
  Participant
  Oh, sweetie! You are more than welcome. Hope your BRAF/MEK combo gives you relief of your immediate symptoms and your diagnosis in general!!! And, hey!! Canes are cool!! Debonair even!!! Think Fred Astaire and Sherlock Holmes!!! Hang tough! You got this. Celeste
  - April 10, 2018 at 1:12 am
    
    Quote
    doxiemom
    Participant
    
    Thanks for your encouragement, Celeste. The cane I got is pretty cool — all lucite. I ordered it from Fashionable Canes on the internet.
  - April 10, 2018 at 2:22 am
    
    Quote
    gopher38
    Participant
    
    Anybody with a dog is cool. A dog owner with a cool cane is off the charts.
  - April 16, 2018 at 1:38 pm
    
    Quote
    bjeans
    Participant
    
    And anyone with a doxie is beyond cool.
  - April 19, 2018 at 9:45 am
    
    Quote
    doxiemom
    Participant
    
    Have had doxies for 25+ years. Mostly senior rescues :-). Wish we could post pics here!
  - April 19, 2018 at 3:25 pm
    
    Quote
    bjeans
    Participant
    
    Ditto that! I think you can if you store them on a photo site, just can't grab from your computer/device? I grew up with a genius doxie (who once stole a roast beef from the dinner table and hid it under my bed until the family was asleep) and our last rescue was a semi-doxie. They rock.
  - April 21, 2018 at 11:28 am
    
    Quote
    doxiemom
    Participant
    
    One time, we left sushi on the dining room table while leaving the room for a few minutes…Guinness (black-n-tan doxie) jumped up on the chair, onto the table and ate EVERYTHING…except the wasabi and ginger. Smart dog. LOL.
  - April 21, 2018 at 3:25 pm
    
    Quote
    bjeans
    Participant
    
    Smarter than me. Eons ago someone told me wasabi was guacamole and I bit. Literally. May, my childhood doxie, was instructed by my father not to leave my side if a boy was visiting me. (I was a teenager.) I don't know how May figured it out, but she'd sit in front of us and stare, and if the boy moved too close she gave a do-not-mess-with-me German shepherd quality growl.
    
    More importantly, how are you feeling? And I hope your anti-stair house move goes beyond wonderfully, though moves are tough.
    
    Beth
- - April 10, 2018 at 2:32 am
  - Quote
  adriana cooper
  Participant
  Carrie, I am sorry to hear of your LMD progression. You might as about steroids (Dexamethasone) to counteract those fevers (rash too?) if you haven't already. Get out and enjoy the spring (if it has stopped snowing there yet) as much as you can. Prep your home for wheel chair (navigating/bathing) and hope you don't need it. Preparing at the last minute is a real challenge. My thoughts are with you and your husband. You or your husband please feel free to contact me ([email protected]) or phone just to talk, with any questions or any kind of support you need.
  
  Rob
  - April 13, 2018 at 7:24 am
    
    Quote
    doxiemom
    Participant
    
    Thanks, Rob. I have been on and off Dexamethasone for several months. Currently, back on. We are in the process of selling our two-story colonial and moving into a home with a first-floor master bedroom and laundry. I can’t wait! The stairs in our house have been killing me. I bought a shower chair a while back. That was a smart move 🙂
    
    I’m going on one year since my diagnosis of metastatic melanoma (May 12, 2017). I was Stage 4 at initial diagnosis because tumors in breasts were not considered primary.
    
    it’s been a roller coaster…as I know you can understand. I’ve managed to remain optimistic until recently. The reality has sunk in, I guess. The mobility isssues/physical limitations bring the disease to the forefront, as does the reality of the progression.
    
    Thanks for your support!
    
    Carrie
  - April 13, 2018 at 7:41 am
    
    Quote
    doxiemom
    Participant
    
    P.S. I’ve had fevers and rashes in the past, which necessitated my halting treatment. But I started back on targeted therapy about a month ago (BRAF/MEK: Dabrafenib/Trametinib). This hasn’t resulted in suppressing the disease, so I’m starting another round of radiation tomorrow.