10 May - Good news

Another appointment with the oncologist at Carlisle Infirmary to check on my progress and find out the results of my last MRI scan. The good news is that the tumour hasn't grown. The bad news is that it hasn't shrunk, either. The scan showed no change over the one made on 5 January. I had really been hoping for something a bit more positive to show for the weeks of tiredness caused by the chemotherapy, something extra to show some gain from our decision to take clomipramine in addition to the "standard" treatment. So to tell the truth I was a little disappointed. It seems the surgery and radiotherapy did most of the work in reducing the tumour from the size it was originally.

My next appointment with the consultant will be in three months' time but I won't have another MRI scan for six months unless I experience brain tumour symptoms in the meantime. We were a bit disappointed about that, too, as it smacks of a decision made on budgetary rather than clinical grounds. I've read quite a lot about these glioblastoma multiforme tumours. They can lie dormant for weeks, months or even years and then suddenly begin growing aggressively. I'd rather someone kept an eye on it a bit more frequently. I don't know if it is possible to find somewhere I could have an MRI scan privately. Olga finds our NHS rather "hands-off" compared to hospitals in the former Soviet Union.

The consultant, Olga and I discussed the issues I have had since the completion of treatment and I came away with some diuretic tablets to stop the water retention that may be accounting for a lot of my recent weight gain. Most people put on weight when they start taking the steroids; perversely I have really only started piling on the pounds after we began reducing the dosage.

We are also going to make another attempt to stop the steroids entirely: So far we have got down to 0.5mg or a quarter of a tablet which is about the size of a breadcrumb, but the last time we tried to stop completely I got a mild headache. Let's hope this time we are more successful.


  1. Hello Julian,

    As strange as it may sound to some people, after spending a few days in a Russian hospital (Moscow) my wife and I were quite impressed with their healthcare system.

    On the positive side, it's good news to hear the tumor hasn't grown larger. We still keep you both in our thoughts and prayers every day.


    John N8ZYA

  2. Julian,

    Happy for your stable MRI. I'm following your blog as my husband also has GBM. I know you are on clomipramine and I understand you take 150mg per day. I have actually spoken to Prof Pilkington and he said that 200mg per day should be aimed for.

    How much of your tumour was actually resected?

    Good luck, all the best. God bless.

    1. @MS: I think I will have to revisit the question of clomipramine dosage.

      Nobody actually told us how much the surgeon took out but it looked golf ball-sized on the pre-op scan.

  3. Good news about your results but I am concerned that they don't watch you monthly or 3 months! My scan is on the 25th May so will see what they say to me. Have spoken to a friend who works at Bupa private health care and she says if your doctor or consultant refers you, you can have a private MRI it costs approx £450-£600.

    I am finding coming off the steroids very difficult, I am on 500mg every other day and having trouble with my speech and legs and headaches are unbelievable, but my nurse has told me to perservere with it for the next 10 days as it will get worse before it gets better!!

  4. It would be interesting to know what the norm is for scanning, if there is one.

    I am also having trouble giving up the steroids but perversely it's the last step, the final milligram, that is causing the trouble. Headaches, mainly, but fotunately only mild ones.