{"id":81,"date":"2024-02-15T13:18:10","date_gmt":"2024-02-15T13:18:10","guid":{"rendered":"https:\/\/scottysblog.com\/schmyeloma-update\/"},"modified":"2024-02-15T13:18:10","modified_gmt":"2024-02-15T13:18:10","slug":"schmyeloma-update","status":"publish","type":"post","link":"https:\/\/scottysblog.com\/home\/schmyeloma-update\/","title":{"rendered":"Schmyeloma Update"},"content":{"rendered":"

Thought an update would be good, as I finally managed to pin down the very nice Reuben Benjamin from Kings on a Zoom call last night.<\/p>\n

The nutshell version is that he doesn't think I need to change treatment immediately, providing three things fall into place:<\/p>\n

    \n
  1. I have the test for amyloidosis at the Royal Free and it comes back negative for amyloid (still waiting for that appt to come)<\/li>\n
  2. I have an ECG to check no myeloma deposits lurking on my heart<\/li>\n
  3. I don't develop any further symptoms of active disease, beyond the chest, shoulder and plantar inflammation<\/li>\n<\/ol>\n

    If these three do somehow go in my favour, then he said to have another full bone marrow biopsy in 3 months' time and we would then revisit things. This at least means I can stick my head in the sand a bit longer and that – fingers crossed – our plans for Spain in April\/May could go ahead as they are. No, a holiday is not as important as staying alive, but if there's a way to do both and not have things turned upside down, then that is the kind of win I'd like.<\/p>\n

    We obvs had a longer chat last night which covered off the treatment options if I do need to switch approach either in the next few months, or in say 3 months time.<\/p>\n

    So frigging complicated but I think one of the T-Cell engager drugs such as Teclistamab or Elranatamab (try writing those down correctly when he's whizzing through the options at light speed!) might be next. These have some dodgy side effects such as cytokine storms, gastro problems and neurological issues, but he seemed to think these are broadly manageable.<\/p>\n

    There are also a few other options such as Carfilzomib or Pomalidomide, as well as a CAR-T cell transplant or the dreaded Stem Cell Transplant. So – at least a few possibilities are still in the bag, which is slightly better than I had thought after having had so many lines of treatment over the past 15.5 years.<\/p>\n

    Hoping to hear from the Royal Free soon and I should be able to get an ECG at Parkside within the next week.<\/p>\n

    Now I just need to find a way to lose a few of the extra pounds (hmm, three quarters of a stone!) that I have managed to seamlessly put on in chocolate and other badnesses over the past few weeks of worrying…<\/p>\n

    S x<\/p>\n

     <\/p>\n","protected":false},"excerpt":{"rendered":"

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The nutshell version is that he doesn't think I need to change treatment immediately, providing three things fall into place: I have the test for amyloidosis at the Royal […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"nf_dc_page":"","om_disable_all_campaigns":false,"_monsterinsights_skip_tracking":false,"_monsterinsights_sitenote_active":false,"_monsterinsights_sitenote_note":"","_monsterinsights_sitenote_category":0,"footnotes":""},"categories":[1],"tags":[],"class_list":["post-81","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"\nSchmyeloma Update - Welcome to Scottys Blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/scottysblog.com\/home\/schmyeloma-update\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Schmyeloma Update - Welcome to Scottys Blog\" \/>\n<meta property=\"og:description\" content=\"Thought an update would be good, as I finally managed to pin down the very nice Reuben Benjamin from Kings on a Zoom call last night. 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