So\u2026<\/p>\n
It seems my good luck has again run out unfortunately.<\/p>\n
My 6 monthly bone marrow biopsy that I had in early Jan apparently contains some active myeloma cells, not in the liquid itself but in the trephine (bone sample) that they also take. <\/span><\/p>\n Which some places don\u2019t even test – but CCL does. There wasn\u2019t a high proportion – only 5% – but this, rather guttingly, means I am no longer in remission.<\/p>\n Active myeloma is back. 7 years to the month since I had my second stem cell transplant. Bollocks, bollocks, bastarding bloody bollocks. But here we are.<\/p>\n On the upside, it has been caught early. There is no paraprotein in the bone marrow liquid, it\u2019s not present as Bence-Jones in my urine, and it wasn\u2019t not showing in my PET CT. But, this is why they do the 6 monthly BMB, it has now been detected in the bone.<\/p>\n Prof\u2019s words \u2018I\u2019m really sorry\u2026\u2019.<\/p>\n He said he wouldn\u2019t normally take immediate next steps at this point, except for the fact that I am already showing some signs of \u2018myeloma activity\u2019 – the chest pain I\u2019ve had for quite a while now, the inflammatory foot issues (plantar fasciitis or now more likely myeloma-driven inflammation) and the breathlessness I experience when I go up steps or hills – I was preferring to put it down to be a fat knacker but yes, the last time things like this happened was before I had my second transplant and as soon as I recovered from that, the breathing etc issues were gone.<\/p>\n So – what happens next? He\u2019s not sure of the best option for me – there are several different things that could happen but he wants me to go and see the myeloma specialist, Reuben Benjamin, at Kings to get the view of his 30-person multi-disciplinary team as well. Blimey.<\/p>\n I\u2019ve also got to go and have a scan at the Royal Free to see if I may now have developed amyloidosis. Prof thinks unlikely this far down the path but that\u2019s another thing that has to be checked out. Hopefully I haven\u2019t go that as well\u2026<\/p>\n So, this year\u2019s plans are suddenly all up in the air. I was about to go in and ask Prof what further leeway there might be with my usual treatment to enable me to do all the stuff that H & I (and other chums) have on our lists this year. But that\u2019s now out of the window until a new pathway is agreed. Right now I'd bite his hand off to be continuing on the familiar Dara & Velcade path..<\/p>\n One of the options is a treatment that involves a chemo injection every week for 3-6 months – clearly not great if we are still hoping to get the Spain for a month in April\/May.<\/p>\n And there are – at least – quite a few others potentially for consideration, such as a CAR-T cell transplant – or of course the utter horror of another stem cell transplant – but I've got no clue on what will be really in the offing until I\u2019ve seen Dr Benjamin, hopefully in the next couple of weeks.<\/p>\n On days like this you literally feel like someone has pulled the rug out from under your feet. You move from a world where things aren\u2019t ideal but broadly manageable and able to be planned around, without you feeling like myeloma dominates your life.<\/p>\n And into a vague, puffy, amorphous, grey holding space. With no idea what is coming until I get to see Reuben and he & Prof agree a way forward.<\/p>\n Well, the bastard was always going to come back at some point because it is an incurable cancer. Hopefully there will be a plan soon and I'll be able to crack on with it, without it turning 2024 upside down too much. I still feel broadly fine, so no need for any panic, am just putting the news 'out there'.<\/p>\n I will update when I know more x<\/p>\n","protected":false},"excerpt":{"rendered":" So\u2026 It seems my good luck has again run out unfortunately. My 6 monthly bone marrow biopsy that I had in early Jan apparently contains some active myeloma cells, not in the liquid itself but in the trephine (bone sample) that they also take. Which some places don\u2019t even test – but CCL does. There […]<\/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-83","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"yoast_head":"\n