April 12th 2022
It was my intention to write this update last month, but like always, something came in between. Because around the moment I wanted to write this update, I would also start with a new treatment. The previous one did no longer work. Broken I guess. Anyway, the decision was made early February and just after the moment that all appointments were made for the treatment, both Bianca and I were caught by the COVID-19 virus. Yes. Well that had to disappear first of course before I could even start the new treatment and I thought it was a good idea to only say something about this treatment after having had it for a few weeks. Just to see what the response of my illness and body was. What I’m able to do and what I can no longer do. So a somewhat longer update this time.
Let me start by looking back first. In the past year I practically could do anything we had planned. I have worked for 40 hours a week, went to the gym twice a week and enjoyed a beer every weekend. Yes, only one (sometimes two), because I still have a fluid restriction of a litre and a half a day due to heart failure and I don’t want to upset the Cardiology department at the hospital. I have flown quite some time at the Aero Club, had a great party there (it where more than two beers then), did some really nice things with my gal, laughed with my son and had the usual adventures in the UMCU. A great university hospital. Normally I don’t recommend hospitals, but if I have to, then just go to Utrecht, You won’t regret it. I even spent a week to this all-inclusive establishment in October because I got the shingles. And because this happened on the day the Autumn Glider Camp started (which is the last possibility to fly before the season ends), I got pretty annoyed. Being annoyed didn’t get less when I heard I had to stay (instead of being send home with ointment or so), because I was highly contagious and my left eye was starting to shut completely. You can imagine what my mood was when I heard I had to stay in an isolation room: I went through the roof. Just to make a point, I started to walk at least 6000 paces in my room. 11 one up and 11 one down. You can do the math. Accompanied by the IV-pole because the IV tubing wasn’t that long. All to the surprise of the nurse. Only the last day, I noticed that those 6000 paces were getting in my head. After I made 6000 paces, I realised I had, shortly before I started, been disconnected from the IV, so I dragged the IV pole along for nothing. Well….
As 2021 neared its end, I noticed that my blood results were rising on the light chains and the M-protein. I also became sooner out of breath getting just plain tired. Not regularly tired, but worn out. On top of that the medicine I got for improving the kidney function, were not working very good any more. So, consultation needed to be done. Haematologist with patient, haematologist with nephrologist, nephrologist with patient, haematologist with cardiologist and cardiologist with patient. All kinds of new relationships were started here but (fortunately) all with the same conclusion: let’s start a new treatment. Lenalidomide had had its longest time (just like me. Keep smiling ). So on to the next treatment. That was planned to start in February, but like I told before, COVID-19 first got to Bianca and then I was infected shortly after that. Bianca was out of quarantine after 5 days and I, lucky me being a person with a weak immune system, was out of quarantine after two weeks. We had no problems with COVID-19. A sneeze here, a cough there and a dripping nose sometimes. That’s all. We realised we were lucky since we Were fully vaccinated, including the booster and we had COVID-19 now instead of in 2020. It could have been a whole different cup of tea then.
Back to the present. So I stopped with Lenalidomide. That medicine had done what it was supposed to do and did it well for two and a half year. With only a few side- effects I could easily live with. At first those side-effects were annoying, than you adapt only to realise later that it all went very well. The new treatment I’ve started is called DVD, Daratumumab, Velcade, Dexamethasone. This treatment consists out of eight cycles of three weeks in which I have to go to the hospital every Monday. I am ‘teleported’ to the hospital by Bianca Lauda (recently two speeding tickets in 2 hours and 4 minutes. I take my hat off for that!). I am not allowed to drive myself due to pre-medication I have to take before we go to Utrecht and those medicines make me sleepy as hell. In total I have to go to the hospital for 24 Mondays. In the hospital, two syringes are waiting for me, one with Daratumumab and one with Velcade (which I got as well in the beginning of the first treatment). Velcade is chemotherapy and Daratumumab is immunotherapy. Daratumumab doesn’t have that much side effects, Velcade gives some stomach and digestion problems and polyneuropathy and Dexamethasone gives me a fat head, makes me retain moisture in my body and gives unvoluntary mood changes. The latter is not always funny for Bianca. The complete treatment makes me tired and does increase my shortness of breath unfortunately. But all in all I can handle it just fine. By the way, my colleagues get a bit tired of their commander being so busy and hyperactive due tot the Dexamethasone. Well, you can’t win ‘m all. And I only take the Dexamethasone on Mondays and Tuesdays resulting in the fact that late Wednesday afternoon, I just collapse. Looking high and tired as hell. Quite a contrast compared to the Monday and Tuesday nights where I could easily visit a house party, because my system is switched ‘on’. Right, I was telling you about the treatment schedule.
During those eight cycles, the first three cycles I will get every Monday two shots. As of the fourth cycle, I will get Daratumumab only every three weeks. And after those eight cycles I will get Daratumumab every three weeks and no more Velcade and no more Dexamethasone. Can you still follow this?
But……(there is always a but). Last Friday Bianca and I went to the haematologist for the first time after having received two shots, to view the blood results after the second Monday. I already knew the outcome as I was able to view them via the internet in my personal casefile in the hospital portal and the haematologist confirmed my conclusion. The big question was of course if the treatment would show some results. Does it do what it should do or is there a poor result? After having two shots of Velcade and Daratumumab it appeared that both the M protein as well as the Light Chains had received a major punch on the nose, so hard I could hardly believe what I saw. That was some good news! Such good news that the haematologist even cut down on the Dexamethasone with 50% and talked about stopping Velcade even after the second cycle, instead of after the eight. Or maybe reduce the Velcade also with 50%. There is not so much use in trying to kill a mosquito with a howitzer. The Light Chains are now even under the lower border of the margin they should be in, compared to a fully healthy person. And the M-protein is visible in the serum, but it is no longer measurable. That is for the first time since I know I’m ill! Before the treatment started, both values were way above the maximum border of the margin they should lie in, compared to a healthy person. I’m a happy man.
Before this treatment started, I worked 40 hours a week, went to the gym twice a week and enjoyed an occasional cold beer in the weekends. How about that now? Well, it’s quite simple. The medication has weakened my muscle strength more than I have hoped for. So I go to the gym only once a week on Tuesday. That’s the only day I can ‘use’ the hyperactivity in my body to force myself into training and stay fit. Since we have to plan our visits at the gym beforehand I cannot do that for the other day I would like to go, so I’m making use of my exercise bike and walking belt at home, whenever I feel up to it. And maintain walking at least 6000 paces a day. I can still go to work for 40 hours a week and oh yes, I still enjoy an occasional beer in the weekend! And I try to laugh as much as possible. That’s the best medicine of all. So, no complaints so far!
Biggest point of attention for me at this moment? To enjoy all the beautiful things surrounding me. Together. With Bianca. With Mitchell. And we do so, whenever possible. Bianca and I will continue to fly gliders whenever possible and Mitchell will join us at some days, we are going on a vacation in the very near future, we have a mega wedding of some of our best friends awaiting us, summer is coming, the terraces are awaiting us in the city and we will bring Mitchell and his gal with us now and then. And the best part of it all is that we are surrounded with very sweet and involved people with whom we can share al those happy moments. Sometimes you are more richer than you realise. And that is the most beautiful present that we have received through my illness.
That’s it for now. Hopefully I will write the next update over one year and not sooner. Who knows?
To be continued….