Sunbathing

If you have read my weblog since I started writing then you know that I also suffer from Psoriatic Arthritis. I have been treated since 1979. At first only for Psoriasis until I was diagnosed as a PA (Psoriatic Arthritis) in 1997. I was treated with a lot of (medical) drugs like Naproxen and Methotrexate. Lately (as of 2004) I used a biological called Enbrel (Etanercept) that I must inject subcutaneously. Because I got this 3rd degree tumor all drugs against PA were canceled, also MTX and Enbrel.

Since I stopped taking them, the Arthritis has returned to my finger joints, my toes, my knees and my backbone (vertebral column). E.g. I can’t close my right hand anymore (unless I hold my hand and fingers in hot water). Then there is the Psoriatic part of PA. There are different types of Psoriasis. I got the most common kind: Psoriasis Vulgaris but then in combination with a rare kind of Nail Psoriasis. 

Fortunately there is an effective remedy against PA: the sun! That’s why I like to lie in the sunshine (as you can see in the picture). Normally I’m not so patient but while listening to my iPod Touch (a present from Maurizio and Katia) I can ‘roast’ (idiom of my dear wife) at least 15-20 minutes per side.

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!

Highlight

I’ll refrain from talking about my morning ritual, it’s the same everyday. I did some work in the morning and went, with a headache, for Physiotherapy with my new shoes. Wilfred spotted them immediately and had to laugh. The shoes are high and difficult to take off so I decided to skip the massage. So 15 minutes on a home trainer (that went well) was followed by learning the basics of walking.

How to step forward with and without looking at my foot (difficult) and how to step forward with a bend knee and then stretch that leg (very difficult!). Wilfred wants me to put down the heel of my right foot first and then roll the rest of my foot forward in a controlled way. I have not that much control over this foot-ankle system with the result that after I put down my heel the controlled roll is actually a loud ‘flap’. That causes a strange sound effect “FLAP flob FLAP flob”.

Wilfred will take care of postponing my Physiotherapy (last treatment 21st of April) and he will talk to my Rheumatologist to discuss my participation in this hospital’s dedicated “Neurology Team”. I hope that a holistic approach (Rheumatism and Neurology) will maximize my chances that I will recover any functions that I may have left. I guess though that recovery and revalidation of my functions related to the functional area for Speech and Emotion will also need attention. Today I have no idea about the scope of the “Neurology Team”.

The Dexamethosone has an effect similar to Enbrel (Etanercept) on my Psoriatic Arthritis although it for sure is not as effective. I had to stop with the Naproxen to avoid the build up of too much Gastric Acid and I am therefore afraid that when the treatment with Dexamethasone against the Edema stops (I’m still taking 2 x 4mg daily) I’ll be right back where I started with the Rheumatism. Perhaps at that time I can restart with Naproxen again but I would prefer going back to Enbrel.

Seizure III (Minor)

I had a minor seizure today. I felt it coming as the paralyses spread from my hand to my fingers and to my arm. I expected it to go everywhere else but it affected only my hand actually. I called for my wife, could talk with her and my right leg was mobile but I still dare not to move my body. The fear for a full blown seizure was too great. I decided against calling Super Nurse, she’ll call tomorrow anyway. It took perhaps 15 minutes before my hand was back to normal but even now (12 hours later) my right fist and left fist do not feel the same. It is an awkward feeling. I expect that the additional Keppra that I take since Seizure II may have anything to do with the fact that it didn’t spread. A good question for tomorrow.

I’m making long hours, like yesterday and the day before yesterday. The implementation of the Budget Module in Salesforce (FY2009) requires a lot of coordination and although I’m now officially staff-less do I get great support from my friend the Salesforce guru. He does all the work actually. Thanks matey! Today I had to send a few e-mails and I feel that I did reasonably well. Not too many errors.

I ordered a book yesterday from a (still) minute publisher called De Werken in Amsterdam. Today it was promptly delivered. They publish books that smell good, feel good and look great. They are an honest publisher who try to make a difference. I hardly ever read Dutch books but this book made me change my mind. The book is about Boudewijn Büch (1948-2002), a Dutch poet, writer and TV programme maker with a very interesting fascination for Goethe and Mick Jagger. I have never met Boudewijn but I did meet his brother Menno several times in a great bar in Amsterdam (Bar ‘t vliegertje). A pioneer as far as sex lines and sex TV programmes are concerned (Menno Büch-Dare to Love). Interesting characters both brothers. I’m looking forward to reading this book.

I was called by a doctor today who was seeking my participation in a Keppra research programme. I have agreed to at least listen to her objectives. I was also invited for a group discussion with suppliers, doctors and patients on Enbrel, a special drug against Rheumatism. I have been suffering from autoimmune disorders for most of my life and Enbrel (TNF Blocker) was the only thing that helped. Just once a week an injection (subcutaneous so a piece of cake) and I was completely free of complaints. Great job Wyeth! Unfortunately I’m no longer allowed to take Enbrel as it seems that for fighting a brain tumor you need a hyperactive immune system.

Bad news

The Neuro-Surgeon dealt us quite a bad blow today. Let’s start with the facts:

1. The tumor has become more obvious (demarcated) in the functional area for speech. This does not necessarily mean that the tumor has grown but at least it means that the Glioma has changed
2. The loss of right motor function has become more obvious. This is not necessarily due to the Glioma as rheumatism has kicked in again with full force since I had to stop with a drug called Eternacept (Enbrel)
3. The results of fMRI and MEG show that the Glioma is about 2 cm away from my speach area and has probably infiltrated the motor area

The first conclusion is that (Awake) Craniotomy in combination with Penfield brain mapping is no longer an option as it is considered too risky. The Neuro-Surgeon explained that he can’t remove a Glioma that has already infiltrated a function area. He does not consider the removal of the Glioma near the speech area and not near the motor area an option (near an option (a chain is as strong as the weakest link). Awake Craniotomy in combination with brain mapping was my best option as it combined a contolled risk with optimal tumor tissue removal.

The two remaining options are “Wait-and-See” (or any other fancy term) and a “Regular” Craniotomy. We had discarded the first option before and now that the Glioma seems to be growing is that still a good choice. The only option left is a Craniotomy and we were informed that although I will not be awake during surgery my motor function will be mapped without my cooperation.

The Neuro-Surgeon described a study that was performed among 200 patients with Glioma. These patients were divided in three groups: “Wait-and-See”, “Craniotomy” and “Awake Craniotomy”. The prognosis for the first group is poor, excellent for the third group and somewhere in the middle for the second group. I will try to obtain less vague information but I guess you get my point. My prognosis today is roughly 50% of last week. Surgery is planned for April-May.