Hi Dave,
Thanks for getting in touch, sorry to hear about your diagnosis and hope chemo goes well for you, which is your main organ involvement?
My first round of chemo started at the end of 2014 and was Cyclophosphamide, velcade and Dexamethasone (CVD) Dara was not available then. I was lucky to have a complete haematological response after my first dose but carried on with treatment for approx 6 months to ensure a good effect as my heart was too damaged to be eligible for stem cell transplant. I now feel pretty lucky I didn’t have to go through that although I did have the harvest just in case! I worked all through my first chemo but was in a small office then not doing a very taxing job on the computer so wasn’t too bad, had to be hospitalised for pneumonia a couple of times which wasn’t fun though- the kids were teenagers and you can’t keep away from everything- apart from that fatigue and lack of sleep were the worst symptoms for me! Some nausia, Indigestion -the supplementary meds helped a lot with this especially the lansorasole- I don’t think I took it to start with cis I thought I’d be fine- do!!, low appetite and that constant bad taste in mouth are other thing that take some getting to grips with.
I then went onto a drug trial for a couple of years which unfortunately was stopped about 2017/18ish (it was a monoclonal anti body- possibly a bit like data but it wasn’t) during that my heart function improved quite a lot and I was able to reduce and almost stop diuretics and exercise more- we did the London to Paris cycle ride on a tandem during this time.
Unfortunately, after the trial stopped I went into permanent AF- it was always intermittent before and gradually the Symptoms of the heart failure returned but didn’t stop me doing most things, I returned to nursing, still cycle (although with e-bike, I just don’t have the capacity for too much strain during exercise) walking I find the worst especially any incline. Luckily I live Maldon, Essex which is pretty flat!!
In about September/October 2023 -my light chains started to trend upwards slightly and my exercise tolerance got noticeably worse so the decision was made to go back on the chemo. I had pretty much 9 full years in remission so if I get another 10 out of this I’ll be super happy-im now 53. This time chemo I think is better although I knew more about what to expect. no nausua, hair thinning anything like that so far.i think it was the cyclophosphamide but the week seems to go: chemo Saturday, virtually no sleep Saturday or Sunday, exhausted Monday? Not feeling great Tuesday/Wednesday but sleep a lot. Thursday. & Friday feel good, back again for more on Saturday 😊 I had to stop work this time due to nursing and risks around infection etc but think I could do something. One of the hardest parts of the whole thing is that I look and feel pretty normal most of the time but can’t do much so it’s difficult to explain.
I hope this helps and anything else you want to ask please feel free
Linsey
