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.

Evaluation of my 3rd Chemo (good news)

This day (April 8th) I had a  first checkup by my Neurologist AND by my Neuro-Oncologist. But first I was to go to the lab to donate a sample of my blood. I got a ticket that showed that I had priority (meaning that the results of my blood tests had to be available within the hour) and soon it was my turn. An hour later my results came through and were called into the examination room by our Neuro-Oncologist. To our pleasant surprise also the Super Nurse was present. 

All three of them listened to us attentively. We told them about my nausea, my need to vomit (even if my stomach is empty), my frequent severe headaches, my itching eyes etc. All minor complaints in comparison to the possible side-effects of chemo. They suggested some changes (Zofran istead of  Primperan) but not to the Temodal (the actual chemo medication). It is still at 420mg/day for 5 consecutive days followed by 23 days of rest (during these days the chemo is working). During all days (5 + 23) I have to continue to take Pantozol (stomach protection) and the anti-epileptic (Keppra, 2500mg/day ). 

Then it was time for the good news! By comparing the results of my last MRI with previous ones the tumor has these last 3 months not grown! That is unexpected and also fabulous news! He warned us that this doesn’t mean that the tumor will remain stable or even get smaller. I asked if this would influence my life expectancy and the Neurologist that he expects that my median (that is the line that defines the average life expectancy) has moved 1 year to the right (was 2 years and is at this moment 3 years)! Although I daren’t hope that this positive trend will continue does it prove the positive effect of the chemo on the tumor.          

Finally good news!

Bits and bobs

A major headache and sleeplessness resulted in a rough night last night. A reaction on the stress of MEG, MRI and fMRI. Today my dear sister celebrated her birthday by inviting my parents and us for lunch. And a nice lunch it was. She gave me a CD (my parents gave me a book) for being brave enough to get through the fMRI. I feel kind of ambiguous about that. On one hand do I appreciate that they care. They must be about as concerned as we are about what is going on in my life at the moment. On the other hand do I prefer not to get any sympathy as I feel that I must be strong to face what is coming towards me. 

I am 47 years old but I know that I will always be a son and brother. I can’t ask my family to (pretend not to) care as I understand this but it forces me to either downplay my real feelings or discuss this ‘problem’ with them. I’m sure that they will perceive the latter as a rejection which is for sure not how we feel and what we want. Anybody out there with a view and/or experience on that? How to deal with the love of your family in situations like these? 

WordPress has created some powerful features like Blog Surfer and Tag Surfer that allow me to keep an eye out on interesting stuff related to my blog. Pharmawatchdog writes that most anti-epileptic drugs (like Keppra) seem to double the risk of suicidal behavior (up to 0.43%). Although it is not a huge increase is it interesting to read that a drug that reduces the risk of a seizure in fact increases the risk of suicide. What to do here. It have recently learned that my desire to control gives me the strength to deal with my brain tumor but what does control mean if your own ‘vision’ can’t be trusted.

I have decided some time ago that I want to have the freedom to decide (control), for myself and my family, when my life is not worth living anymore. I realize that this is quite a controversial topic for some and even for myself. The Awake Craniotomy comes closer and so does the deadline for making the arrangements for euthanasia. I’m positive that I don’t need it but it’s like an insurance: you take it for the small chance that … . And then it is better to have it properly arranged. On Monday I will have a meeting with my General Practitioner to discuss his involvement (which is required by Dutch law).