Evaluation of my 6th chemo

During the 5th evaluation (Evaluation of my 5th chemo) we received some very confusing news. Today we heard why there was so much confusion between all parties: the International Standard for grading tumors has changed. The spectrum of grading tumors has shifted towards lower grade tumors: what used to be called a grade three tumor may now be called a grade four tumor (if it is a ‘bad’ grade three). If you’re confused I have probably explained it the wrong way. Just let me know (send an e-mail to Cranius). 

Dr. Büter (Neuro-Oncologist)

In fact the neuro-oncologist explained that it also depends on where you perform the biopsies. If you perform a biopsy in one part of the tumor you may see a very different grade tumor than if you perform the same biopsy in the same tumor but only a few millimetres away. Very reassuring of course. Not!

They asked how I was doing and I told them that the headaches (in the left side of my brain) are regularly quite severe and that the skin covering the hole where the boneflap used to be formed a bubble (instead of the normal slight hollow formed by a much softer skin).

I had a (minor) seizure on the 24th of June. Then I felt the seizure start at my right hand to slowly ‘invade’ my right arm, my right leg and the right side of my face (subsequently) until my right side was completely paralized. I even couldn’t speak. The previous time I had a (minor) seizure was on the 27th of February (2009). That (low) frequency they thought was good news.

We are left with many questions, mainly because of the discrepancy between various bits of information: they just don’t match. We can’t believe that they are telling us porkies so that our only conclusion can be that they don’t know. We can only rely on ourselves and on filtered medical information (by the medical staff or ourselves). Such as the results of my MRI scans. Now that sad conclusion brings us onto a happy topic.

My blood values (bone marrow: good, kidneys: good and my liver: good), no fever, insignificant high blood pressure (max 150/99) together with my good condition (I still visit the RCA twice per week) guarantee optimal conditions for a longer life. The neuro-oncologist and neurologist compared three MRI scan results for us:

• just before the first chemo (MRI 09JAN2009, evaluation 14JAN2009)
• after the third month (MRI 27MAR2009, evaluation 08APR2009)
• after the sixth month (MRI 28JUN2009, evaluation 01JUL2009)

The bright white tumor tissue on the MRI scan has not only not grown but has also slightly reduced in size!! So we can’t predict how much longer I will live but for sure it’s longer than what we thought before.

Straight to the point ….

My manager called this morning to hear how I was doing. He is flying all over the place, I hope he takes care of himself but I know he doesn’t. I briefed him on my situation and I’m always surprised about the type of questions he asks me and I appreciate his genuine interest in my situation. He was on his way to Reading andhe gave me a business update. We had not been in touch for a while but as we’re bothbusy with completely different things I’m not surprised. Thanks for your call Bas, I’m looking forward to seeing you soon.

This afternoon I had an appointment with my Neurosurgeon. I thought it would be the last one before surgery but I now understand that the team of Neurosurgeons will visit me on Wednesday afternoon. More about that later. I went to the appointment with my mother as Monling had to stay in bed with a fever/cold. That gave us the opportunity to introduce my mother to Super Nurse and to have, as agreed in the family, the order of the contact persons changed (mother-wife-me instead of me-wife-mother). I will make a communication plan for family, friends and colleagues that hopefully is pragmatic enough to work.

The Neurosurgeon came straight to the point and presented changes in the surgery approach based on the recent large and minor seizures and the Edema. He explained that he was not very surprised that my right hand now joined the party (frequently, see my week reports) as the functional areas for hand and leg are just centimeters apart in a healthy brain. In my case they have been pushed apart by the tumor (in the left hemisphere) but the relative distance is still comparable.

He spoke about the complete removal of the SMA (Supplementary Motor Area) that lies in the medial part of area 6 and is responsible (I believe) for the planning (initiation) of complex movement and the coordination involving both hands. Here you can find a link to an extremely clear website explaining the various motor functions (by Canadian Institutes of Health Research). I know that failing functions on one side of the brain (in my case the left side) can be ‘rebuilt’ by the half of the brain. He predicted a period of 3 months for that process to take place.

We spoke again at length about the removal of the tumor in the speech area. I have the feeling that he is not completely sure what to expect in this area. So the following is my analysis and not by the Neurosurgeon.

At certain MRI slices (photos) of my head the tumor seems detached from the main tumor but I’ve been told it is just one tumor. It is easy to see the parts connect at other MRI slices. Language and speech are very complex functional areas. I don’t know exactly how the position of the tumor is related to Broca’s area and Wernicke’s area but I’m pretty sure that it may be in or near to Broca’s area. These areas are connected by a ‘tunnel’ of fibers, the language loop. Moving from Wernicke’s area to the Broca’s area you can find the following functions:

• Seeing words passively
• Listening to words
• Pronouncing words
• Generating words

When looking at the MRI images do I think that my tumor is close to the latter two functions. I base all this on information I found at another link from the same website (Canadian Institutes of Health Research) dedicated to language and speech.

The Neurosurgeon gave us more information about the Surgery Duration (please refer to my post “Surgery Planning” of the 8th of April). This is the plan:

• 07:30-08:00  I will be taken to the operating theatre
• 08:00-08:30  I will be given a general anaesthetic
• 08:30-09:30  Equipment will be installed (neuro-navigation, etc.)
• 09:30-10:30  The access to my brain will be made
• 10:30-13:30  Measurements will be performed
• 13:30-15:00  Actual surgery (tumor will be removed)
• 15:00-16:30  The access to my brain will be closed
• 16:30-17:00  I will be taken to High Care

My family will be called by the Neurosurgeons and have to go to the hospital. They will be briefed about the outcome of the surgery while I’m in High Care.

Then about probabilities: there is a 5% chance that I will have a permanent loss of motor function(s). The Neurosurgeon expects that this will not be my first and last brain surgery. Further treatment will depend on the result of the biopsy.

Radiotherapy will be required if the tumor has become a grade 3. The tumor has become more clear since the 2nd seizure. The Neurosurgeon does not consider a grade 4 and also does not believe that the tumor is a standard (“bad”) grade 3. He believes that it will at most be a “good” grade 3. Further treatment will in that case be Radiotherapy. We’ll cross that bridge when we get there.

By the way: in 15% of cases the hospital is unable to determine correctly (either way) from the photos what they later find during surgery. Only a biopsy of a large enough part of the tumor will tell for sure what grade tumor it is.

Maybe you have seen the short film introducing the Awake Craniotomy of a young woman (please refer to my post “D-Day Surgery 24 April 2008″. I asked if I could have a similar presentation by the Neurosurgeons. He seemed delighted to do so. So next week Wednesday (after having been admitted to the hospital) I will meet both Neurosurgeons and they will explain my situation in vivid colours. I’m looking forward to that!

Dexamethasone but no CT Scan

Super Nurse just called. She asked how I was doing and referred to my voice mail. She had spoken with the Neuro-Surgeon and they agreed that in case the headache would have become less (disappear) that I can reduce the Dexamethasone. That is however not the case. To minimise the side effects of the Dexamethasone (without knowing I have several: thick feet, desire to eat more, feeling tense and hyper) she gave some advise on how to counter them:

• Put my feet up in bed
• Take the Dexamethason around 18:00
• Don’t drink tea and coffee in the evening but warm milk (forms a protective layer in your stomach)
• Don’t eat too much
• Take up to 6 paracetamol per day against the headaches

I asked her for an additional CT scan but it seems that makes no sense. The CT scan will not reveal anything in more detail as long as the edema is there. She understood my concern about the grade 3 Glioma but explained that although a grade 3 grows faster than a grade 2 it will not be an explosive growth. She will contact me again on Thursday the 3rd of April to discuss my situation. If the headaches have become worse or I have started to throw up (especially during the night) I have to call the hospital immediately.

I have decided to now start regularly take two (harmless) homeopathic drugs my mother suggested me to use:

• Cinnabaris (D6) which helps very well against Sinusitis to avoid confusing the headache caused by the edema
• Zincum Valerianicum (D6) which helps to calm down a bit

Endema?

Today will be a busy day and it started with a lousy night. Although I didn’t drink anything last night (coffee, tea, water) after dinner and went to bed around midnight did I wake up every hour of the night to go the toilet. I have a numbing headache (it’s always there but not really painful, a kind of permanent pressure)  on top of my head on the left side.

My gastric acid levels are still high, the pain in my stomach has not become less. Again, it is not unbearable at all but just an indication that I probably should do something about it. During my working period in Italy have I learned to appreciate espresso and although I already cut down on it (max. two cups per day) do I now think I should not drink it at all in the evening. Every evening my sweetheart Monling prepares a dish with different kinds of fresh fruit for me. Thanks baby, I love it!

I would like to have another CT scan made and have it compared with the CT scan of the 22nd of March. I suspect that the endema has not become better and if that is the case this could mean something for the activity of the Glioma. I’ll try to approach this positively, believe that as the 24th of April draws closer that also psychosomatic factors are going to play a roll but I need to know. Enough is enough. I left a voice mail with Super Nurse.

Seizure II

Yesterday, while feeding the cats, I was struck by a seizure (for the second time). I felt the seizure coming and was able to tell my wife to call an ambulance before the convulsions really started. I didn’t loose consciousness (neither did I bit my tongue etc.) but after the seizure I was unable to move my right arm, hand and leg like this first time in Japan. The fire brigade had to come to transport me out of our house through a window on the first floor. Must have been quite a show, the whole neighbourhood was present. Under different circumstances I may have enjoyed it as well.

I was taken to the same hospital where I went before (the hospital that will perform the surgery). On the first aid department of the hospital we had to wait for hours. Blood-pressure was high (170 over 100) and once a nurse was able to get a blood sample through the IV (finally she gave up and used a normal needle) all lab results proved normal. I had a Posticatal Paresis (a partial paralyzes that happens especially in case of a clonic-tonic attack) in my right leg. Slowly I recovered the feeling in my arm and hand but my leg remained paralyzed.

My parents came and when it became clear that walking the stairs at home would be no option did they volunteer to get me some support equipment to turn our downstairs into a bedroom/toilet/bathroom. They had a hard time finding the home care center and were only just in time. Thanks guys for the trouble!

The Neurologist on duty called my Neuro-Surgeon and they agreed to perform a CT scan. One scan without and one with contrast liquid. The outcome was an Cerebral Oedema and a slight Midline Shift. I’m especially concerned about the midline shift as this is a condition where one side of the brain pushes aside the other.

The Neurologist prescribed an increase of Keppra (500mg 2 times daily has become 500mg 3 times daily) and Dexamethason (4mg twice daily). Dexamethasone is is used to counteract the development of Oedema. I will be contacted by the team of Neuro-Surgeons to discuss the way forward.

I hope that this seizure at least increases my priority. Especially the The Cerebral Oedema may be caused by a partial increase of the grade of the Glioma (from grade 2 to a partial 3). I was allowed to go home, had a delicious dinner made by my sweetheart and went to bed.