• August 2, 2017 /  Myeloma

    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.

     

     

    Posted by admin @ 11:16 am

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2 Comments to Panobinostat, Velcade and Dex get my levels down

  • I have never been on Panobinostat. But I can’t handle more than 20 mg. of dex a week or my quality of life is horrible. You have had amazing results quickly with these drugs, so hopefully they can back off the dex some more and give you better quality of life.
    Dropping from 2500 to 147 that quickly would just give you some pretty heavy toxicity from the dead cancer cells all being cleanses from the body at once. there is a term for that process, can’t think of it right now.

  • I just asked my doctor last week why I take all my dex on one day(5-4mg tab for a total of 20), once a week. She said that avoids the round face and much of the ‘swelling’. Also lessens the risk of the dex causing diabetes. Since dex kills myeloma cells, the big hit once a week works well for that. So you still have the ups and down every week. Crash day once a week I read and sleep.

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