Overview of the treatment

I made an overview of the chemo treatments that I will undergo. The first two courses will take place in the Jeroen Bosch Hospital (JBZ).  The d’s represent the days on which the admission of the respective agent happens. Progressive disease (PD) means an increase in tumor size or the appearance of any new lesion; SD is stable disease, a relapse means the recurring of disease after it disappeared. Depending on my condition and the results of my blood tests, I might be able to go home some weeks during the treatment.

I looked up the chemo-agents, and I was surprised to find that they were all super old. Methotrexate is from 1947, Teniposide (Vumon) from 1984, BCNU (Carmustine) from 1971 and Cytarabine from 1960. Their mechanism of action is different, but they all have the same outcome, killing cells that divide. Because cancer cells divide rapidly, they are killed during the time that these chemotherapeutic agents are at toxic levels in the body. Due to this cytostatic effect, the most common side effects are due to the death of healthy cells that divide rapidly. These are cells such as blood cells in the bone marrow, cells lining the mouth and gastrointestinal (having to do with the digestive organs, particularly the stomach, small intestine and large intestine) tract and hair follicle cells (this is why patients can lose their hair). The second and third part of the treatment will take place in Amsterdam at the VUmc, specifics of this section of the treatment still need to be decided.

The MRI of yesterday does not show any difference in the sizes of the lesions compared to the MRIs as far back as the 7th of April. They explained to me that this could happen with lymphoma, and this does not mean that treatment isn’t necessary. I did send my hematologist a message, wondering whether this does not imply that the cells do not divide rapidly and would therefore not be affected by the chemotherapy.

 

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Nice activities

Today was mostly about nice activities. In the morning we celebrated Nils’ birthday (his birthday -26th of April- was during their vacation) at his pre-school. In the afternoon I went to see my colleagues at the Radboud in Nijmegen. It was great to say hello and talk to them after such a long time, and it will probably take a long time as well for me to come back to work again. I was called by the secretary of the hematologist and my hospital admission will be Tuesday next week, and the treatment will start the next day.

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Exhausted

I am extremely tired today. Exhausted from everything that happened up to now, the uncertainty, the hospitalizations, exams, tests, biopsies, and then yesterday the diagnosis and treatment plan. I find it hard to imagine that these difficult weeks since February 21 -the date they told us that they probably found brain cancer- were only part of the diagnosis. The perhaps harder and even longer part, the treatment and recovery, still has to begin.

Today I had an MRI (this will be the pre-treatment reference) and a talk with the hematologist. All this traveling to the VUmc in Amsterdam is exhausting in itself. Fortunately, the first part of the coming treatment will be done in the Jeroen Bosch Hospital in ‘s-Hertogenbosch, where I live. They follow the same protocol, have experience with this treatment, and they should be able to start the treatment soon (as in next week). The autologous stem cell treatment part will take place in the VU in Amsterdam because this is only done in a select number of hospitals.

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Cancer

Pathology of the biopsy specimen

We just had a meeting with the hematologist and neurologist. They told me that after careful deliberation in their multidisciplinary team of experts, they concluded that the diagnosis and treatment of T-cell lymphoma would be the most fitting (lymphoma of the brain are very rare and most often (95%) they are B-cell lymphoma, so T-cel lymphoma are incredibly rare). After the appointment with the neurologist and hematologist, Adrienne and I met with the pathologist where he explained what they did and saw. The second biopsy didn’t necessarily give new information but reinforced what they found in the first one. He told that they did find clonality in the T-cells of both biopsies, that there are many T-cells and that even though diagnosis is not a 100% sure, treatment of T-cell lymphoma is beneficial. What will follow is a very long and harsh schema of chemotherapy. This likely means weeks in the hospital. Tomorrow a new MRI will be made, and I will talk to hematologist about the details of the treatment.
Primary central nervous system lymphoma (PCNSL) are not the worst type of brain cancer, of course, any type of cancer is bad. But at least with PCNSL the chances for complete remission are not zero. Because T-cell lymphoma are so rare and my case is so unique, there are no survival statistics available.

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Efteling

Today we went to the Efteling. It was a beautiful day, weather wise, but in a lot of other ways as well. Adrienne rented a mobility scooter for me, which helped me to get around the park the whole day. The kids loved to sit on my lap and explore the park that way. I hope that in future I will be able to walk around the park all day on foot again, but if not this is a great option.

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My new cargo bike

My new cargo bike

A few weeks ago I ordered a cargo bike with an electrical support motor. It arrived a few days ago. Today we had a nice ride and picknick with the kids. The bike is excellent, especially now since I don’t drive our car. The only thing that was missing today was warm weather.

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They called

They indeed called. Well, the neurology department’s secretary called to inform me that an appointment has been made at 12h on Monday. This appointment will be with my neurologist and the hematologist. In this meeting, they will talk about the diagnosis and the treatment plan. The secretary told me that if I wanted, I could look at the biopsy samples myself in the pathology department after this meeting, my neurologist could arrange that.
I still have no clue what the diagnosis is, and at this moment I also don’t know anymore what to hope for. Clearly, there is something going on in my brain that needs treatment as it doesn’t seem to go away by itself.
It is hard to believe, that even after ten weeks of being told that there are multiple cancerous lesions in my brain, I am still only at the beginning of this journey. There will be many more nerve wrecking days ahead.

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Tomorrow they will call me

Celebrating Nils’ 3rd birthday

On the 13th of March, the title of my post was “the last day not knowing”. It is seven weeks later today, and I don’t want to use the same title. History repeats. I called the hospital on Monday and asked what the plan of action was. They didn’t know, and called me back half a day later. Tomorrow I would be called by the neurosurgeon. The person that called me couldn’t tell me about what, or at what time.

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Home again

Apart from feeling very tired and having a sore neck (the neurosurgeon had to move some neck muscles around and biopsied through the left muscle connected to the skull), I am doing ok. I was sent home, and that is where I am now. The biopsy samples will again be studied and a new appointment will be made with me to talk about the outcome.

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The biopsy left a huge scar but went well

My second biopsy scar

They told me on Friday that the biopsy could happen at any moment during the weekend, but that after 18h no new surgeries would be planned. I had to stay sober, no eating and drinking, since 0.00am and during the whole day until 18h. I waited the whole day on Saturday. At 17.30h they brought in my evening dinner and I started counting down the minutes that I could eat. Regardless of the infusion, I was feeling incredibly hungry and the food smell coming from my evening dinner in the corner wasn’t helping. At 18h I was told by the nurse that I should continue staying sober for a little longer because an OR might free up soon. At 18.20h the neurosurgeon showed up at my bed, telling me that there was still hope that they could do the biopsy soon. At 18.45h I was wheeled off to the OR. They put me to sleep in the OR and I woke up in de PACU (post anesthetic care unit). Hooked up to several devices (EKG, blood pressure, blood oxygenation, infusion, etc.) I had to stay there until 9 in the morning. They checked me every hour, just like last time. Only this time I had a very stiff neck and a hurting scar. Last time the incision was so small that it closed with a single stitch that was hardly found when they wanted to remove it. This time the cut was huge, the neurosurgeon indeed told me that he wouldn’t use the same technique as last time. I hardly slept of course in the PACU, but everything went fine. Apart from a very stiff neck, and being very tired I am doing ok. They told me that they took a lot of biopsy samples and that the pathologist confirmed that they were representative (no healthy tissue). The pathologists will work on the histology and can hopefully make a clear diagnosis soon that the hematologists can work with.

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