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 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!

Halfway my 3rd Chemotherapy

I was not that much ill or feeling sick during the first two chemo cycles but this 3rd cycle hit me hard. But let me start at the beginning. Last week Wednesday I visited the Neuro-Oncologist for a regular “chemo-visit”. Super-nurse was also there, a very pleasant surprise. The Neuro-Oncologist explained that everything looked ok to them and the chemo didn’t have to be adjusted. He gave us a receipt for the 3rd cycle.

The first two days I was not affected by side effects but from day three I was becoming more and more nauseous until the point that had to throw up. I was feeling so sick (I was still heaving long after my stomach was empty)! What was worse that I threw up only half an hour after I took my medication. Monling was so brave to inspect my vomit looking pills. And indeed she found a tablet of  Pantozol  (protection for my stomach) and vitamin pills. The Keppra pills were probably all dissolved by my gastric acid.

Fortunately I had taken the chemo (Temodal)  one hour before I threw up and so it was long gone from my stomach. We decided to not to let me take another 1250 mg Keppra because we were not sure how much my body had absorbed in the first place. That decision would increase the chance on seizures but what the heck. Later we called Super nurse and she confirmed that we handled the situation correctly.

Evaluating my 1st Chemotherapy

What is my status one week and one day into my first month of chemo? Well let me tell you. But a word of caution first: those faint of heart should not read any further!

Generally speaking I’m fine. My body weight, blood pressure and body temperature remain at constant (healthy) levels. If was up to those figures I would in mint condition. The first four days I didn’t notice any noticeable difference. I was tired but I have been tired before so I didn’t pay any attention to it.

Then it started. From one day to the other my Psoriatic Arthritis became much worse. I had already (several times) begged my Neuro-Oncologist, Super-Nurse and Neurosurgeon to subscribe Enbrel to me. There is no link in medical literature to be found that there is a link (negative) influence between Enbrel and a Brain Tumour. They still will want to exclude any negative side effect. They are right.

The Arthritis is not very painful yet (mainly the joints of my toes and fingers are swollen) and the Psoriasis looks nasty but it is actually completely harmless (besides the constant itching). So no Enbrel. The Neuro-Oncologist decided that the weekly 15mg Methotrexate (MTX) that I used to take (also against the Psoriatic Arthritis) was also to be avoided.

Then there are oral infections (currently there is one about 6 mm and one about 2 mm). Enbrel would have helped but for the above mentioned reasons I can’t take Enbrel. Then there are 4 options left and I use them at random:

• Do nothing (not an option)
• Put salt in the wound (… as you can imagine)
• Pad the wound with Mundisal (made in Switserland)
• Apply Corti-Fluoral (made by Schering Italy)

Probably unrelated or more general side effects (overall the side effects are still quite innocent in comparison to what I expect still to come):

• Sleeplessness (10mg Oxazepam per night, doesn’t help)
• A sore throat (regular medication)
• Sometimes an exploding headache (nothing that a dose of 2 to 4 Paracetamol/day can’t cure)
• Blisters on my lips (I fight these by the permanent application of Labello)
• Generally speaking: fatigue!
• Dry eyes

 
Temozolomide
So what did they give me? A Chemotherapy with a specific drug Temodal against Gliomas. The dose is different for each phase (I’m in the monotherapy phase) and will be based on a persons’ BMI (Body Mass Index).

A BMI calculator can be found here: BMI (Body Mass Index) Calculator. Don’t forget to read the “Assessing your risk” section. My BMI is 26 and I have to take 320mg Temodal each day (is there anybody who knows how to get from BMI to the proper dose??).

This goes on for five consecutive days followed by 23 days without Temodal and this is repeated for at most 6 cycles (of 28 days). The worst (thus-far) are the five days at the beginning of each cycle. Each day of those days must start with an anti-nausea medication. Then back to bed for an hour waiting for the Temodal. Then another hour before you eat. If you need to make an early start you or your spouse has to get up verrrry early.

Monling thanks for getting up so early in the morning to coordinate this each time. I love you!