Hi everyone, just a few questions I’m 57 female and I was diagnosed with Myeloma & started January 2025 four months of chemo DVdt and a stem cell in July . At the end of last year had some back pain however I knew I had MGUS about five years ago , so Drs were on it quickly . I had radiotherapy on my T8 just one blast. I am due to take Lenalidomide in January and Apixaban twice a day. I just wanted to know who is on it & thosenot taking any maintenance drugs because I’ve heard of some living way beyond 5 & some of 10 years without ; it’s so difficult to decide what to do . My concern is I feel really well. My back is fine. I get the old niggle now and again but I’m concerned about any side-effects with the maintenance drugs, as all my organs , bloods are good at present. Just wondering whether I should hold out and when it kicks off then there may be another option , another drug available etc
Just to reassure others going through this process yes it’s a marathon but keep your glass half full the QE in Birmingham were right by my side I only spent 10 days in hospital having my stem cell , touch wood no infections. I have absolutely bags of energy and having yet slept once in the day but hang to o & crash about 10.30pm & luckily sleep recharge my battery pack. I get do get a bit of dry eye / dry mouth.I think my best medication has been walking up to approx 10-14 miles a week. so I highly recommend even if it’s just a few miles a week; luckily my boys play golf so I walked with them lots especially over the summer. I did go out a few weeks after sct for breakfast or a coffee obviously being very careful & went for the quieter periods explained to them about making sure things cooked properly etc because of my immunity. I now lead a normal life , well perhaps not nightclubing ! I miss a runny egg though .I’m planing on going abroad in spring. I’m not yet back at the gym. I’m going to wait until next spring until I have all my childhood vaccinations in January. I just have to stay up off the naughty step now & not get the flu or Covid.
Thank you for reading my story sending smiles & best wishes to you go . Keep strong you warriors
