Good evening
I haven’t posted regularly on Myeloma UK in the last few years, as my situation has become normalised in my mind to such an extent that I no longer really think about it too deeply. But I hit a bit of a milestone today, and the enormity of it all hit me, how regularised I have made the situation, despite any suffering I experience every fortnight when I take the maintenance treatment (and it is variable, from not bad at all, to feeling quite bad, but mostly middling on that range on average).
My story: I was diagnosed with myeloma in June 2013, aged 33, unmarried with no children. Very unusual presentation, the myeloma was a lymphoma, with about 8% bone marrow involvement. I was given 7 months to live without treatment. I had two cycles of DT-PACE, followed by a SCT in October 2013. The SCT saved my life as it put the lymphoma right down. Never felt worse though. Then I began weekly cycles of VTD, which continued to October 2014. I had radiotherapy on the diseased lymph nodes in June – August 2014. The thalidomide was dropped around that time after it gave me two blood clots in my lungs. I was confirmed in remission in October 2014. I then began fortnightly VD maintenance treatment, and have been on it ever since. Today I started cycle 60, married, with two children. The paraproteins have been 0 the whole time since October 2014.
I rarely question whether I should stop the maintenance treatment, accepting that the risk of stopping is too great, so on I go, accepting feeling unwell for those 5 days after treatment day every two weeks. And yet, what if I was cured all this time? Crazy thoughts I know.
Hope this message can give some optimism to people out there.
All the best to all of you.
kh0305 2 years, 3 months ago.
