Hello I'm a New Member

Hi all, I've joined the forum today, but as I'm only ? recently diagnosed with asymptomatic myeloma, In not sure if it's too soon?

As background, I'm 59, and have had recurring chest infections and  pneumonia through 2023, was hospitalised for the pneumonia (April 23) and wrongly diagnosed with lung cancer before being discharged. I ended up with an excellent chest specialist who still (9months on) can't find the source of my ongoing cough but suspected something from blood test results in November 

That month I was referred to a haematologist who diagnosed me with MGUS and said he'd continue to monitor with regular blood tests to establish my normal para protein levels. At the next results discussion (in January) I was told that I've moved to asymptomatic myeloma. He will now monitor with blood tests every two months and confer with my chest consultant to see whether I can control my infection levels.

So far, just a waiting game, although the movement from MGUS to asymptomatic myeloma feels speedy and I'm still coming to terms with the diagnosis 

At the same time my husband has a rare soft tissue cancer, a GIST. Drug therapy shrank his large stomach tumour to a point where he could be operated on, and also last April he had a successful op to remove the tumour which resulted in half his stomach being removed. Although GISTs recur this is usually after 18 months up to 5yrs. Today we were told that there are cancerous nodes in his stomach lining. A further scan will be done within a fortnight and he'll either go to the Royal Marsden for a drug trial or be cared for under the existing team on a drug which is not as effective as the main treatment, imatinib. Sadly he can't take imatinib again as it has seriously compromised his heart and lungs function. 

If you've read to here, thank you. I think I just needed to put down in paper what's happening but I hope it's not too much information, or lacks relevance for this forum.

Sending best wishes to all

Jenny