Evaluating my 1st Chemotherapy

January 23, 2009

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

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!



  1. Lieve Payter, dat is geen feest allemaal, maar we hopen enorm dat het niet voor niets is. Dank voor je berichtje op onze blog, we waren helemaal verrast. En ik maak de foto’s niet alleen, ook Frits maakt mooie plaatjes!

    Veel sterkte, nog even en dan kunnen we je weer een echte Hug geven.

    Kus, Frits en Regine

  2. There are so many different things to keep track of through a treatment course like that. But it sounds like you can bear it, more or less, so that’s a very good sign. And as for the badminton — fantastic!

    Best wishes to you from London.

  3. Gosh, I am really amazed about your positive tone during such an extreme treatment. Keep on going. Nice to read that you are blogging again!

  4. You attitude is wonderful and it will stand you in good stead and help you to remain resiliant. Very best wishes for all to go well and I hope the side effects can be overcome.

  5. Hi Peter,
    Wow, what a heavy phase again. Good to read that you still have your good sense of humour.
    Keep your head up high and give Monling a hug from me, she deserves it !

  6. Jeetje, wat een wijs cadeau van de koffie- en theecentrale en wat klonk je waanzinnig goed door de telefoon gisteravond. Super, liefs van je zus

  7. Zondagmiddag, alweer 1 februari. De zon schijnt in Amsterdam en eerder vielen er allemaal kleine sneeuwvlokjes…

    Dag Peter,
    Hoop dat je vandaag geniet van een goede dag.
    Heb net je blog weer gelezen, en wens je maar weer heel veel sterkte met alle bijverschijnselen bij de behandeling. Wens ook (en vooral) dat ze afnemen, die bijkomende klachten, opdat je maar lekker je arm & de rest van je lijf mag oefenen in die partijtjes met/tegen je badmintonmaatje.

    Lieve groet,
    ps: Mijn vader (gepensioneerd sportleraar) speelde vroeger ook partijtjes met leerlingen. Om een pakje Stimurol of een Mars. Hij won meestal. Liet de ander veel lopen…
    Dus zet ‘m op, op de dagen dat het je goed gaat en je kunt spelen, dan sponsor ik jullie met plezier met ‘tig pakjes kauwgom of iets dergelijks naar wens ;-).

  8. we all are with you,

    • Thanks princess! How are you doing?

  9. Hi Peter! I’m very happy reading about you.
    in gamba! forza! I hope see you again soon. cheers from Italy.

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