jillspikesmum posted an update 2 years, 6 months ago
Hi all. To cut a long story short, my remission has ended and I’m back on Carfilzomub. While I eas in remission I got annual travel insurance, so booked a cruise. My insurer now says I have no cover and they won’t insure me. I stand to lose 60% of holiday costs if I cancel in next 5 days! Has anyone managed to get holiday insurance while on tre…[Read more]
jillspikesmum posted an update 3 years, 3 months ago
Happy New Year to you all, hope you are all coping with the COVID lockdown the best you can. I was diagnosed with Bence Jones Myloma 2 yrs ago, and it 2 yrs to get light chains down to a level for a Stem Cell Transplant to be viable, as I was told my Myloma was ‘aggressive’. I was told on 23rd Dec I have had ,very good partial response, to the…[Read more]
jillspikesmum posted a new activity comment 3 years, 7 months ago
Hi Kayleigh, welcome to the Forum. I was diagnosed 20 months ago – a complete shock I’m 60 yes old. . Was helping husband on a property development,, digging drains etc. Thought I had Flu coming and had somehow bruised my rib, when the other side ribs started hurting too I went to GP. Admitted 2 days later, A week later I was on chemo! NHS at i…[Read more]
Hi Jillspikes mum
I’ve only just seen your message, so apologies for not answering immediately..like you, I didn’t always want to read the more upsetting stories on here, then I’d forget to check, etc etc. My brain is complete mush most days. And I get where you’re coming from, being able to doing everything to doing so little. And also thinkin…[Read more]
jillspikesmum posted a new activity comment 3 years, 7 months ago
Hello, sorry to read your husbands smouldering MGUS has tipped over to Myloma. We keep reading that Myloma is very individual, but my experience may help. I have been on 4 different drug treatments (Including Lenalidomide) over the last 20 months, hoping to get my Myloma under control in order to have a Stem Cell Transplant. My side effects,…[Read more]
jillspikesmum‘s profile was updated 3 years, 7 months ago
jillspikesmum posted a new activity comment 4 years, 3 months ago
Val, I’m new to this Forum and not sure if im doing this correctly, I’m trying to respond to your request regarding switching from Lenalidomide to something else.
I’m 59 and was first diagnosed late December 2018, just before Xmas.
Was on VDT for many months and light chain levels came down, but then stopped dropping and neuropathy in my fee was…[Read more]
jillspikesmum became a registered member 4 years, 8 months ago