Evaluation of my 5th Chemo (bad news)

I don’t want to postpone writing the next post any longer. For your sake (I don’t want to have to filter information) and my sake (I want to write it down while I still can read my notes). So here it goes.

On the 3rd of June we had to be in the hospital again for a check (for the proceedings of this check I refer to my post “Evaluation of my 4th Chemo“, it’s always the same procedure). This time the Neuro-Oncologist was accompanied by an unknown (to us at least) Neurologist. She was very friendly though (Super Nurse was not there).

When asked I told him that I was doing well in general only I was from time to time suffering from headaches (severe flashes of pain) and nausea attacks (heaving, dry vomiting). He still decided to let me have the full 420mg Temodal and the other anti-nausea medication. We told them were pleased that it all went without the major side effects as we were told there would be. And also that we were happy that I had only one chemo left.

That caused some confusion on the other side of the table. Weren’t we informed that the second biopsy showed that I was was suffering from a 4th degree tumor? That came like a cold shower. When we asked Super Nurse (pls refer to my post ‘Super Nurse’of the 19th of May) for the DCvax treatment she answered clearly “no, you’ve a 3rd degree tumor and regulations require you must have a 4th grade tumor to apply for a DCvax Brain treatment”. Had we misunderstood Super Nurse or did we? They told us about the second bioptie and that must be some misunderstanding? Eventually we left his room, still shell shocked about what we just heard.

We decided to record the next session (this hospital is quite tolerant with allowing foto’s, documents and reports to be copied) which will take place early July. Keep your fingers crossed please all of you out there!

Evaluation of my 4th Chemo

Yesterday we went to the VUmc again for my monthly check. I had to “donate” some blood to determine whether I could go on with the chemo medication as planned. Normally you have to take a number and be patient (something that is very hard for me) but in the VUmc they don’t. Depending on your next appointment you’re declared ‘CITO’ (to get priority) or not. If you’re lucky enough to get the ‘CITO’ status the results of your blood sample are ready within an hour. 

I, fortunately, always have the status ‘CITO’ (because I have an appointment with the neuro-oncologist in an hours time) but most patients are not so lucky. I feel always glared at by the other patients in the full waiting room when we arrive. But I can almost immediately walk through into the examination room for the actual blood check. We went back to the waiting room of the neuro-oncology department to wait the compulsory hour. Unfortunately an hour waiting is long if you’re impatient (like me).

Finally we were called by the Neuro-oncologist. This time he not much to tell us because there was no MRI scan made since my last visit (scan frequency in my case is once per three months). We told about the side effects of the chemo (nauseousness sleeplessness,  fatigue, headache, irregular heartbeat, etc.). He was especially interested in my irregular heartbeat and irregular blood-pressure. I had to go to our GP he ordered me.

I asked him about ‘the end’, what the symptoms are and whether it could be a lengthy battle with Death. He told us that we must discuss that with the Super Nurse. He prescribed the same dose of Temodal (the actual Chemo) as last time (420mg) and some other medication we ran out of. He wished us well with a handshake. Kind man!

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!

Neuro-Oncologist

Today I visited the Neuro-Oncologist at the Hospital (a planned visit). I explained that I was feeling very tired and somewhat numb. Before the ‘incident’ I was normally very energetic, often working 16 hours a day and still able to motivate my colleagues and staff. The last few weeks I feel that I’m at 60-70% of my old energy level.  I also told her that my sense of balance has become less. Only a few days ago did I fall from my bicycle while returning from shopping.

She told me that a lack of energy is not uncommon as it is one of the side effects of stress is fatigue. Her answer prompted me to check the Internet for more information about this anticonvulsant. And indeed, Keppra can have a tiring effect on people using it as well as sudden loss of balance.

The ‘incident’ caused a 10% reduction in the function of my right leg which in turn has resulted in a loss of balance. How much is related to the ‘incident’, how much to the side effects of Keppra. My wife and I have the feeling that the loss of balance has become worse indicating that the side effect of the Keppra could be larger than anticipated.