Panobinostat, Velcade and Dex get my levels down

Well it’s been a real struggle. Apart from the transplants this may have been one of the toughest regimes I’ve been on. But it is working and so it gives me the oomph to get through it.

My results have been as follows. I started on about kappa 2,500. After round one the levels went down to 147!! However I had a blip on my ECG and cycle two was just Velcade and Dex, while I had lots of ECGs, an Echocardiogram and a 24 heart tracker. The problem didn’t reoccur, but they did discover that I had mild aortic insufficiency, which means a faulty valve. I’m hoping to see a cardiologist about that. It may not be a result of the myeloma, as it can be caused by a whole variety of things.

However the second reading still showed a reduction to 103, either due to the Velcade or maybe the Pano was still working. Before I started round 2 my consultant reduced my Pano by 5mg and halved my Dex to 40 (10 x 4) a week.

After this my levels went down to 70 and then after cycle 4 to 37. Normal levels are 0 to 19 so we are doing well. My kappa/lambda ratios are also going down, but they have almost never been normal, so I’m not expecting them to normalise yet.

The side effects have been severe. The worst has been the effect on walking. I can’t even walk round the little lake at the bottom of our hill now, my legs are shaky and my feet and legs are puffy. We have used a wheelchair a couple of times on outings. We’re not sure exactly which drug is causing it, as Dex does weaken the muscles, but I have never experienced it that badly. It is likely that the Velcade is mostly to blame, so that dose has been reduced for round 5.

The other issues are fatigue, digestive issues, especially very bad indigestion, enormous bloating and loose bowels, which I have been controlling relatively well with medication. I retain a lot of fluid and my weight has really gone up, although Dex also wants me to eat more. Sometimes I feel like a Michelin man with bright pink cheeks from the Dex.

I don’t really feel much better on weeks off, as I get the usual Dex withdrawal, but we are going to try to do more, as this is also very tough for my husband Bob, as life with an chronic invalid is very boring and it’s good for me to make an effort. I have been trying to see friends and have the odd lunch out.

I know others on Pano have also struggled, so good luck with it all and please do get in touch if you want to share experiences.