[ritzygirlParticipant]

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

[ritzygirlParticipant]

Aww bless you ; you’ve been through so much and it’s understandable that you feel frustrated. That’s what this journey can do to you, stay strong. I’m quite new to this as I’ve just been diagnosed aged 56 and I’m on my third chemo and on my marathon but I want to throw you a little bit of some of my energy.

[ritzygirlParticipant]

Hi, your message was inspiring and I look for hope. I’m a half full glass girl aged 56 I was diagnosed with myeloma in January having had backache for a couple of months. I knew I had MGUS but never thought it would turn into myeloma luckily I’ve had scans biopsies etc. quickly, with a bit of a nudge I’m having my third chemo this Friday so I’ve started my marathon and my only thoughts are to get better and get back on the fun bus. I don’t waste any time worrying about what’s coming up I just deal with it on the day. So much so I forgot that I wasn’t supposed to eat after 9.30am as I had a PET scan in Cheltenham and at 12 o’clock I was chopping on a cheese sandwich luckily they slotted me in later on in the day! Worrying, It’s too much energy and we need to save ours for this journey. Constantly saying to my sister as she’s a real worrier 95% of what you worry about never happens.

I keep positive eat healthy lots of protein and have had to up my calories & I drink gallons of water & a good walk every day. Also try and keep off citrus as I don’t want a sore mouth or throat so far it’s worked. I believe I can keep a healthy body & mind. It will get me through this. One thing is notable I’ve always kept healthy and fit and I’m about nine stone and have been that weight most of my life and I’m immensely proud how my body has sustained a real bashing the last four weeks and it just goes to show that all the hard work over the years keeping fit is paying off now to get me through it. I wish you all well on your journey and hope that one day they can find a cure and I’m planning on getting another good 10 years out of my life to see that happen.

[Author]

Posts