Update March 2018

It’s been a while since I updated, but various people have wanted to look at my blog, which has given me an incentive. It took me ages to sign in as I’d forgotten the details! It will be short I’m afraid as I’m quite busy, but I will try to update a bit more frequently.

I got through 8 cycles of Panobinostat, but having managed to get my levels down, they then started to climb again and I was feeling very ropey. I had a long discussion with my consultant. As Daratumumab, which would be a good bet, was unavailable then (and now I don’t fit the criteria), the only options left to me were older drugs. We looked at Cyclophosphamide, Melphalan and Bendamustine. In the end, for various reasons, we went for Cyclo and Dex at least to start with, without Thalidomide, which would usually be take as part of the CTD regime. I have peripheral neuropathy and we didn’t want to make it worse. I started Cyclo in early November. In terms of disease levels it has not worked very well, but kept them stable mostly around the 1000 to 1300 kappa range until the last test. I have found the regime very hard work this time, which I wasn’t expecting, but it is likely that the Panobinostat had clobbered me and I went straight into Cyclo.

Unfortunately my blood counts have been affected and in Feb I had a week off and then again I have had two weeks off since the beginning of March. My platelets went down to 20 and my haemoglobin has been falling despite the time off and the fact I self-inject Eprex. Yesterday I saw my consultant and my kappas have gone up to over 1800, my platelets have revived a bit to 36, but my haemoglobins have sunk further to 73. Not surprisingly I have major fatigue. So things are going a bit pear-shaped atm.

We decided to try adding in a small dose of thalidomide, crossing our fingers that my bloods and neuropathy won’t be too badly affected. They will give me transfusions if necessary.

If this regime doesn’t work we may try one of the other drug regimes. But the blood counts may be affected by those and it could be the disease kicking in anyway.

All this is complicated by the fact I need a colonoscopy – I had a recall from the standard tests. My last one was cancelled due to my low platelets, as I might have bled more if they had to remove polyps. So it has been rescheduled and I may have a transfusion beforehand, although that will be fun if I have to be on a drip while dashing too and fro to the loo from the laxatives!

Since I had a heart issue on cycle one of my Pano, I have been working through various heart tests (eg ultrasound, ECG) and most recently have had a heart MRI. The cardiologist doesn’t think I have any issues, but it will rule out anything like amyloid deposits.

The other thing I have been doing is sorting out end of life care details, redoing wills etc. It’s not pleasant thinking about these things, but given my current situation, which could deteriorate, it’s good to have it all down on paper.

So, life’s a bit tough atm, but one can only hope that we can settle on a regime which keeps me going. As always it’s important to live day to day and spring will hopefully be on its way soon!