20-03-20
Today we have been to the PMC It was unexpectedly quiet but we were received with open arms. I gave quite an amount of blood for a scientific research. The objective is to investigate which substances active the infections within my body, for example the one that I had in my esophagus last December. Through this they try to get rid of the prednisone and get me a replacing medicine. There is the possibility that the infections can influence the tumor and we don’t want that of course.
03-04-20
We’re back from the hospital. Now we have to wait until they have taken a look at the blood for the inflammatory values and sediment. The current target is to figure out where the moisture and pain are coming from. We need to find a balance between the prednisone and pain, to eventually start with a medicine that replaces the prednisone. We have to get rid of the prednisone, because the longer you use it, the more side effect and the longer it takes to stop with its usage. We have not received any update about the biopsy yet.
The sediment and inflammatory values are down: so we reduce the amount of prednisone. If it stays like this and the pain won’t increase we can look into switching to hydrocortisone and if we can reduce the amount of prednisone even further.
06-04-20
Since Saturday afternoon the pain started to increase and I’m holding an incredible amount of moisture. So much that my skin starts to rip, resulting in large stretch marks as big as two by ten cm. I have to report at the hospital on the 8th of April at ten o’clock, then they’ll make an echo from my shoulder and I’ll have to give blood again.
08-04-20
It seems I have a condition known as Polymyalgia Rheumatica (PMR) and came from one of the treatments that I had before. This has been discovered through the medication that I’m currently using. It is a type of (muscle)rheumatism that normally occurs at people that are over fifty years old and it affects the muscles in the shoulders, neck and the pelvis. They want to treat this through medication which I’ll have to take once a week as a shot, just like the fragmin that I take. It should work after about a week and until that time I’ll have to take my normal amount of prednisone. PMR normally reacts the best on prednisone, but that is not an option due to the side effects.
12-04-20
Yesterday I did not have a nice evening. We were planning to eat sushi and my sister and mother were busy in the kitchen. Suddenly I don’t feel well and my sister calls at my mom that it’s not going well. I tried to explain that I got nauseous and was smelling a terrible smell. I went outside to lay in the sun and get some fresh air and fell into a deep sleep. Meanwhile my parents were investigating the symptoms and it could have been epilepsy. I woke up, took a shower and almost immediately went to bed and continued to sleep. BUMMER!
13-04-20
There has been contact with our oncologist and he is quite certain that it had been an epileptic seizure. Meanwhile there also has been contact with the neurologist. In the afternoon a courier will deliver medication against epilepsy. At the next scan we shall see if the tumor is growing and this will be just another thing that I’ll have as well.
17-04-20
Today we have been to the hospital and we spoke with the oncologist. He thinks that the epilepsy has been around for a while but at a much lower level, it’s connect to that I’m sleeping bad and short as well as that I’m confused sometimes and tired. Monday we’ll discuss the possibilities and results of the biopsy. Friday there will be an MRI to see where we are and if there is anything new. If the MRI shows that the tumor in my head has been growing, they want to start with radiation treatment over there as well. That part has never been radiated before and if located quite high in my brain. We’re reducing the amount of prednisone. The research from the neurologist suggests that there is some loss of power in my right arm. For now I’ll have to continue with the medication against rheumatism and epilepsy.
22-04-20
Yesterday we received a phone call and instead of Friday I had to take the scan today. Also the normal checkups have been done today. Hopefully we’ll get both the scan and blood results by Friday. Meanwhile the results of the biopsy start to trickle in.
The case is that one of the three mutations that I had is not within the biopsy anymore. The doctors are surprised but they think it is because of one of the other treatments that I had before (this was the easiest one of the three). There are two mutations which seem to have changed for a bit and my oncologist insists on treating them. The course that my oncologist has set is not easy and quite complex. The biopsy is on culture and that takes time.
All around the world I have been discusses and many have responded positive about the mutations in the H3K27 tumor. They call it a miracle that I’m still here. I am ‘all over’ on the agenda and that is good! The annoying thing is that I just don’t feel well. The moisture hurts terribly, the tiredness takes a lot of mee and it just doesn’t feel right in my head. Hopefully we’ll receive the MRI results on Friday. The expectation is minor growth, based on the epilepsy.
But for now we received a glimmer of hope and that is just what we needed!
24-04-20
As expected the oncologist called today. From the conversation it became clear that I will need radiation treatment and as soon as possible. The case is that all of my tumor have partially grown. We don’t know by how much. It is very likely that the loss of power as well as the tiredness are the result of this. This sucks!
28-04-20
An emotional day! We have send the doctor an e-mail again because the amount of muscle strain increased, the amount of power in my right arm became less again and I suffered a couple of times from epilepsy. The epilepsy exposes itself by giving me a sick feeling in general, smelling a weird chemical odor and suffering from pain in my head and neck.
The answer on our e-mail is not what we wanted to hear. Dexamethasone has been added to the list of medicine that I have to take. Fortunately that is instead of prednisone. But actually both of them are dickheads regarding their side effects: holding moisture, varying emotions and complications in the muscles.
Today, just like earlier this week, we discussed the topic ‘wig’. I will start with radiation treatment soon, where they will treat my head as well and they are not sure yet how much hair will disappear. We do know that we cannot solve it with my own hair anymore and that is quite a bummer. My mother took the task of to contact companies that sell wigs. But of course these companies are shut because of the coronavirus.
But even in this situation my mom did succeed to find a company. She spoke with a very kind woman on the phone who would love to help, thinks with us and came with solutions. She also e-mail some pictures of the hair and how it would look like. After a good conversation this lady will come over next week and we will fit some wigs in a safe manner. She will come to our front yard and will provide us with instructions in front of the window while inside we will fit them. Exciting!
Meanwhile the pharmacy is in front of the door with the dexamethasone, which will replace the prednisone. I’ve been taking the prednisone much longer than desired and time is finally there to say goodbye to the bastard. For a little while I’ll have to take the dexamethasone but after that hopefully no ‘sones’ for a very long time!
See you soon in another blog!
