Meeting the hematologist

The hematology department at the VUmc.

Today I met with the hematologist. In an hour-long meeting, we discussed the treatment options. I summarized the follow-up process in the flowchart below. What he told me was that the biopsy samples were very difficult to interpret and that the experts had never encountered anything this before. Even though the biopsy samples showed no clear “monoclonality” this could not be excluded (cancer cells are clones of a single cell, therefore monoclonality means cancerous). He couldn’t rule out, that after stopping with the Dexamethasone, the lesions would grow again. Of course, the hope is that the lesions continue to shrink, without the help of steroids. This could be a sign that a healthy immune system (which should turn back to ‘normal’ after having stopped the fingolimod -MS medication-, is able to clean up the access of lymphoid cells. Treatment will depend on what will happen in the coming month(s).

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Discussing the new MRI scan

The new MRI scan of last Monday looks as expected. The lesions did shrink and the fourth ventricle is no longer as compressed and displaced as in February. What the cause of this shrinking is is not clear, it is likely that the Dexamethasone has caused the shrinking. I am now reducing this medication (I took 8 mg up to now, from tomorrow onward it will be 4 mg and 2 mg for one week after that). In about two weeks a new MRI will be scheduled, and if this shows again that the lesion is shrinking, another one will be scheduled after that. The reason is that they want to see whether the lesion shrinks by itself after I stopped with my MS medication, and with the absence of Dexamethasone. This Friday I have a meeting with the hematologist to discuss treatment options.

An MRI slice with contrast of 21st Feb (left) and 20th of March (right)

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A new MRI scan

The poster at the VU ironically says in the right bottom: “I care about quickly knowing what we are facing.”

Today (Monday) a new MRI scan was made. It all went fine. The results of this scan will be discussed on Wednesday. I don’t know what to expect. I can only imagine that the lesions have become smaller. I feel better, no more headaches or dizziness and my speech is less dysarthric. Only I sleep badly due to the dexamethasone. I wake up often in the night, and around 4 am I don’t feel like sleeping anymore. During the day I am incredibly tired. This, of course, makes all my ‘regular’ MS symptoms worse.

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“It doesn’t appear to be as bad as we assumed”

Nils at the gym, a good distraction.

Of course, I was nervous today. I was up extra early, and we even went to the gym with Nils just like every Tuesday. Straight afterward we took a train to the hospital in Amsterdam. Yesterday, at the end of the day, my case was again discussed in the multidisciplinary council at the VUmc. Together with the hematologists, pathologists, neurologists, neurosurgeons and oncologists, they discussed the situation. Today at noon I and Adrienne were invited for a meeting with my neurologist to talk about their conclusions.

When exiting the tram, the first thing that caught my eye was the ominous “cancer center”.

The title of this paragraph was the first thing she said “it doesn’t appear to be as bad as we assumed”. So what does that mean? The whole situation is very complex and very atypical, that surely is the catch phrase. The pathology report reads: “Het geheel is uiterst lastig te interpreteren” which means “it is very difficult to interpret [the biopsy samples]. What they see in the biopsy is an abnormal amount of T cells. But these T cells do not resemble cancerous cells; they do not appear to all originate from the same cell that divides uncontrollably (cancer). It is puzzling why they are there. The hypothesis is now that it is a B cell problem that triggered all the T cells to be there. T cell problems are even rarer than B cell problems. Perhaps my MS medication might have triggered this somehow, as it is an immunosuppressive agent, but this has never been described before. She told us that these cells could be precursors of a lymphoma, so they need to be monitored very closely (additional MRIs).

An idea would be to treat with Rituximab, a monoclonal antibody that targets B cells. This also treats MS, which is a good thing. But since they can’t rule out a T cell problem, messing with the B cells might give rise to unexpected adverse events. That is why she told us that she first wants to discuss the options with the hematologist. They will schedule a new MRIs as soon as possible (this week). In this MRI they want to see what the lesions look like now, perhaps stopping Gilenya would have had a positive effect, although it is probably impossible to judge, the Dexamethasone has probably shrunk the lesions anyway. They also want to check whether the biopsy was taken in the right place, this should still be visible on the MRI (in the worst, but very unlikely, case they missed the mass and sampled only the boundary). Then if all looks ok, they will stop with the Dexamethasone and do another scan 2-3 weeks later. Then if all seems well, a treatment could be started, if the hematologist agrees this might be Rituximab.

All in all, it is the best news I could receive in this situation. Of course, things are not at all miraculously solved, but given the entire situation, knowing that it is not a definite lymphoma, or even something worse, is good news for now.

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The last day not knowing

Playing in the sand dunes of the “Drunense Duinen”.

This morning I was called by the secretary of the neurology policlinic. Tomorrow at noon me and Adrienne have an appointment with my neurologist and the hematologist. During this meeting they will tell me the findings of the biopsy and the treatment plan. Of course, it is good knowing what is wrong and creating a plan to start treating it. But at the same time, it will also be the end of not knowing, of trying to ignore what is going on. Naturally, I have been wondering what made the pathological assessment of the biopsy samples so difficult. I do not know a lot about pathology, and certainly not about brain tumor pathology (through my work I know a bit about common breast and prostate cancer histology), so I don’t know what the difficulties to assess the samples could have been. I am happy that they have had a very thorough look together with their world-renowned MS pathologist involved, at the same time, I worry that something that is aparently that abnormal could turn out challenging to treat (hopefully the opposite turns out to be true).

Logically, the long wait has been a nervous one at times. Luckily apart from being tired and sleeping poorly (this could be a side effect of the dexamethasone -the steroids I am taking- probably amplified by the stressful situation), I am feeling relatively ok. Both my speech and coordination are worse than they were, but it is impossible to pinpoint the cause. It could very well be due to the mass in my cerebellum, but it could also be a result of the biopsy, my MS (speech and coordination problems are not new to me) or the lack of sleep. At this stage, I don’t know; it is most likely a combination of all of the above.
I filled my days with positive things, with the family. Hard times are surely coming, so I am trying to enjoy the good times as much as possible.

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Pathology still not conclusive

After another nerve wrecking day and night, my neurologist called me at 14.30h, and she informed me that the histology was still inconclusive. The main assumption is primary central nervous system lymphoma, but I got the feeling that the final conclusions about the specific type are still not yet known, and these are important for the treatment plan. The pathologists involved (my neurologist assured me that the best pathologists are working on it) have to wait for more stains again. It is without a doubt very atypical, but essential to correctly classify. The suggested follow-up treatment (chemo, radiation, etc.) is dependent on the tumor subtypes as far as I understand. The generic treatment I am using now (dexamethasone 8mg), is suitable for all types of lymphoma and does not need to be changed.

So again no definite diagnosis, and no treatment plan. My neurologist expects this to be ready on Monday or Tuesday. She will call me tomorrow, and make an appointment in the hospital, with her and a hematologist. She would rather meet me and Adrienne in person than have a phone call about this, I agree… More waiting to come….

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Pathology as of yet inconclusive

After a nerve wrecking day, they called me at 17.30h, and they informed me that the histology was inconclusive as of yet, the pathologist wasn’t sure what he was looking at and they had to wait for more stains to be completed. Today, no conclusion can be made. I don’t know what that means. I can only speculate that it is very uncommon. They will have a new multidisciplinary meeting on Wednesday, and they expect to have a final treatment plan on Thursday. The final call is now planned for Thursday around 17h…

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At home

Nils and Thomas in the mouth of a T-Rex.

I am feeling worse than last week before the biopsy, but not extremely. I don’t feel as dizzy anymore and I also do not have throbbing headaches. My balance is again a bit worse, and I am extremely tired. These symptoms are to be as expected. They of course destroyed some brain tissue with the biopsy, and the whole situation is not favoring good health. Nonetheless, I am trying to do fun things, like visiting dinosaurs with the kids in Boxtel, or eating with my parents and sister.

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The brain biopsy

I went ahead with the biopsy. My bed was wheeled into the icy cold OR, I saw the operating table, their navigation system, everything was in place. The last thing I remember is the stinging feeling of the anesthetic in my arm. Afterward, I woke up, shivering from the cold, but feeling ok. Adrienne was sitting next to my bed and the nurses put some warm towels and something that felt like a huge hairdryer under my sheets to warm me up. The neurosurgeon came over to tell me that everything went fine. I had to stay in the PACU (post-anesthetic care unit) the whole night. They monitored my EKG and oxygen saturation continuously. They also did some physical tests every hour, to see if my pupils still contracted when they shone a light in my eyes and whether I could still move my arms and legs. I hardly slept.

On Tuesday morning, the day after the biopsy, I felt ok. I was tired but I also didn’t sleep in the night. I didn’t have any pain. After speaking to the neurologist and the neurosurgeon, I was sent home. They had to wait for the pathologist to stain the biopsy samples and to analyze them. Then in a multidisciplinary meeting on Monday the 6th of March, they would discuss the outcome and call me, probably for an appointment to discuss treatment options. I could wait for this at home.

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