Good news

The scan was good! No MS activity and no visible tumor. Just scar tissue left by the biopsies. Great news!

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Tonight at 19.00h is the appointment with my neurologist to discuss the MRI scan made last Friday. The hope is that the lymphomas have disappeared on the MRI, as well as that there are no active MS lesions.
I have no feeling about what the outcome might be. If I would have been a healthy person before this all started, it might have been easier to feel whether something is still wrong. I clearly was not a healthy person. Even though I don’t feel as bad as at the beginning of last year, there is still a lot of room for improvement. Then again, there was a lot of room for improvement in 2016 as well. What I am trying to say is that I am totally in the dark about tonight’s appointment.
On my blog, I have mainly been talking about my cancer, but multiple sclerosis by itself can also suck a great deal. The chemo that I had followed by a stem cell transplantation is considered to be even stronger than the most effective therapy for MS. Finding MS activity on the MRI scan also has unwanted implications.
For now, nightmarish images of a new brain biopsy, new chemo’s, new hospital stays, and further progression of my MS float around in my head. In seven hours we will know more.

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Happy new year

Happy new year! Last year has been a turbulent year for me. It started with feeling sick at the beginning of the year, and an ominous finding on my MRI scan at the end of February. After a long diagnosis trajectory, I started with a harsh chemo scheme in May. The whole treatment scheme took until the end of October. From then on I am recovering at home. To say that 2017 kind of sucked healthwise for me, is somewhat of an understatement.
But apart from the hospital stays, biopsies, uncertainties, and treatments, there were also plenty of enjoyable moments. Even though 2017 sucked, I wouldn’t have wanted to miss it.
Like last year, I created an overview of the year in pictures. If you are interested you can check out my iCloud album.

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It has been some time since I last updated my website. Not so much has changed. On some days I am feeling better, on some days a bit worse. I do have the feeling that I am still improving, but of course, my baseline was not being healthy. Before this year I already had trouble with feeling my limits and not doing too much in a day, such that it would cause me problems the next days. It happens quite often that I do too much on a day and then feel bad the next days.
We did a lot in the days around Christmas, Thomas had a Christmas performance in school, we visited the “mega christmas circus”, went to the “winter wonderland”, had a great Christmas dinner at my parent’s place, and more.
I do notice that at times I wonder about the doctor’s meeting of the 17th of January. I sometimes find myself thinking back to all the hospital stays of last year, the biopsies, and all the uncertainty. I really hope that I won’t have to go through that again.

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“Blood cancers after fingolimod treatment”

On the 5th of December, the “Barts and The London School of Medicine” posted an article on “Blood cancers after fingolimod treatment” on their active BartsMS blog. By a befriended neurologist I was recently pointed to a recently submitted case study, of a woman on fingolimod (Gilenya), who developed an Intracerebral Lymphoproliferative Disorder.
So even though extremely rare, and very diverse, it seems to happen that blood cancers occur after using the MS drug Gilenya. Keep in mind, however, that up to now eight such cases have been reported worldwide (seven published case reports + mine submitted), and approximately 132,000 patients have been prescribed fingolimod. Therefore the risk of developing any type of lymphoproliferative disease is extremely low. None of the reported cases specifically resembles mine though, no T-cell CNS lymphoproliferative disorders have been reported.

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Yesterday we went to a zoo in Overloon. Even though it was just above freezing, and there was a lot of water and snow, we had a good time. Unfortunately, I was the only one wearing regular shoes (it wasn’t that snowy and wet here in Den Bosch), so my feet were completely wet and cold halfway through, nonetheless, we had a good time. We reserved a wheelchair for me, and although that would have kept my feet dry, I didn’t need to make use of it a lot (mostly to be taxied over flooded parts of the path). Sitting in a wheelchair and not moving in this weather is cold!
It is great that these outings are possible. I was infected by a cold after the symposium on the first of December, which had a negative impact on my recovery, but judging by my current ‘snottiness-level’ this should be over in a week. On my head, downy soft little hair is emerging and I started shaving daily again to get rid of very few enthusiastic pubescent facial hair.

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We celebrated “Sinterklaasavond” at my parent’s place together with my sister, her husband and their kids. It was a fantastic evening with lots of fun and excitement for the kids (and ofcourse many gifts).

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In the morning of the fifth of December, Sinterklaas brought a visit to the school of Thomas and the day-care of Nils (which is in the same building). It was great to be there when he arrived, and all the kids were singing songs. Two of the three “Zwarte Pieten” were not completely painted black and had make-up that resembled the soot from the chimney. For the kids, this has become completely normal, as this is what they also see on TV, but apparently, only a few places in the Netherlands are willing to follow these small but significant changes. In my mind, stubbornly and thoughtlessly sticking to old-fashioned conventions, knowing that these traditions are stigmatizing for some, is short-sighted.

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Some people don’t need wings to fly

I have gotten kind many emails, messages, and comments in reply to my last post. Thanks for your kind words.

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Time flies

Last Friday was the valedictory/retirement celebration of my former professor, Bart ter Haar Romeny. From 2001 until 2010 I worked in his group, first as a master student, then a Ph.D. student, a Postdoc, and before I left to work in the Radboud hospital in Nijmegen I was an assistant professor.
It was a fantastic reunion with many former colleagues and friends. Although the day was tiring, I was delighted to be there, and I even got say a few words to Bart.
When I left in 2010, I was a healthy, promising scientist. Nobody could have imagined that I would retire more than a year before my professor.
With all my former colleagues and friends around it almost felt like five years ago. It was great to see that everyone has their fantastic careers, successes and promising futures.
When lying in bed yesterday, still tired from Friday, I imagined myself, my former colleagues and friends as birds, some flying higher than others, but all far above me. Me unable to fly and hopping on the ground. Over the last years, I accepted that this is my place, and I am sure that I can have an impact from down here. However, being surrounded by people from before my gradual descent made me think about what could have been.

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