Contributors

20 July - Treatment and prognosis

I finally felt brave enough to do a bit of online research into my brain tumour, which is described as a Glioblastoma Multiforme Grade 4. According to Wikipedia it is the most common and most aggressive type of malignant brain tumour. Despite this, it occurs in only 2 to 3 in every 100,000 people in Europe and North America. So it seems that I, who normally never even wins the club raffle, really hit the jackpot with this one.

The treatment I am receiving - craniotomy to remove as much of the tumour as possible, followed by a combined course of conformal radiotherapy and temozolomide chemotherapy - is the most common and generally regarded as most effective form of treatment. Nevertheless prognosis is poor. In a clinical trial of 575 patients receiving this treatment the median survival rate was 14.6 months. (Without chemotherapy this was reduced to 12 months.)

The most important factor determining the survival period would seem to be how much of the tumour was removed during the craniotomy. A typical tumour contains 10^11 cancerous cells. This is reduced to 10^9 if the surgeons remove 98% of it. Radiotherapy can kill 98% of those, reducing the number to 10^9. But that is still a lot of cells that will eventually multiply, grow the tumour and kill the patient.

There are reasons to be optimistic. Olga saw the surgeon as I came out of the operating theatre. She says he looked pleased, was smiling and said the operation went very well and I would be OK. So perhaps he got more than 98% of the bugger. Time will tell.

Temozolomide is a chemotherapy drug that is used to treat newly diagnosed glioblastoma in patients that are fit enough to look after themselves. It can be taken orally as it has the ability to penetrate the barrier to the brain so that it can reach the cells it is designed to treat. It works by blocking the ability of the cancerous cells to make DNA so they are unable to replicate. It also increases the effectiveness of the radiotherapy.

Although temozolomide has side effects, including nausea and a weakening of the immune system, it is not as bad as some chemotherapy drugs according to some sources. If I can avoid picking up any bugs hopefully it will not be too bad.

The reason it takes a long time to start the actual radiotherapy is apparently that the planning is very time consuming. A lot of precise calculations have to be made in order to target the X-rays on the cancerous cells in the brain while avoiding everything else. The nurse technician yesterday said "the maths can be complicated." I had visions of teams of people slaving over calculators but I presume they use computer modelling.

Given how I feel right now and what I now know about the treatment, I'm hopeful that I can beat that 14.6 months prognosis by a significant margin.

12 comments:

  1. We are all hoping so too.
    73 de M0XDF

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  2. Thanks for the good information and links Julian. With your positive attitude and fitness you'll probably beat this for many years and outlive your blog readers, HI.

    On the Wiki site they mention "a small link with ionizing radiation", "may be a link with polyvinyl chloride (commonly used in construction)" and "lead exposure in the work place". Just wondering if any of these factors are significant in your case? e.g. Sellafield, lead solder? I also wonder if the incidence of brain tumours is higher in the ham population - exposure to RF, lead solder, etc?

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  3. Thanks for the comments. I've never worked in the electronics industry nor have I been as active a constructor as many hams so I have probably not had as much exposure to the things you mention as many hobbyists.

    However while I was lying in the hospital bed staring at the ceiling I could not entirely banish the thought "were attic antennas a few feet from my head to blame?"

    And it is no coincidence that I am, right at this moment, pulling my QRO rigs off the shelf and installing the QRP gear. There may be no justification for it but at this point I feel I've taken enough chances.

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  4. Published papers about (mobile phone) RF exposure and its effects on the human body are inconclusive so far.

    Are brain tumours more common in radio amateurs, many of whom may have been exposed to higher RF levels than the general population over many years, I wonder? This would be worth checking but I wouldn't know where to start.

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  5. I've found "Milham S Jr. Increased mortality in amateur radio operators due to lymphatic and hematopoietic malignancies. Am J Epidemiol 127:550-554, 1998". There's an abstract at http://aje.oxfordjournals.org/content/127/1/50.abstract but the full article requires a subscription.

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  6. Great to hear the positive attitude Julian, I understand this can have a beneficial effect all of it's own.

    Ask them to burst the X-Rays in morse and send a CQ while you are there...

    As for a link with RF exposure - if you think about all the folks who have *really* had some exposure I suspect it can only be negligible if at all.

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  7. Greetings Julian,

    I have one thing to tell.
    Once I made my 10m band magloop and started to test it with neon lamp and just 5W only! But I must say that antenna has potential to make a harm! I played about 10 minutes (mostly CONT'WAVE) but next two days my eyes were badly dry and itching. I can't assure 100% that this was caused by the loop. But I won't test or use it again! (at least within safe distance)

    73!

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  8. Zilvinas,

    Given that people blast their heads for hours with about 2W of RF from a cell phone that they hold right next to their skull, I think that it is unlikely that a few minutes of 5W from the loop did you any damange.

    Regards, Sivan

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  9. Julian,

    Yes, the occurrence rate of this disease is very low, but the probability of being diagnosed with *some* life-threatening disease is not very low. From US data, the probability that a person who is today 58 years old will die before his 59th birthday is around 0.8%. The probability of being diagnosed with a life-threatening disease during that year should be a higher, maybe around 1 in a 100 or perhaps even worse.

    You are still unlucky, of course, but this "jackpot" is easier to hit than we think.

    With wishes of a successful treatment, Sivan

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  10. Hello Sivan!

    Indeed very good observation! I talk at least half an hour with gsm everyday, since 1998. But that incident was only once and right after experiments with neon lamp.
    (I heard that shorter gsm waves are more easily absorbed by tissues than hf. Therefore latter could penetrate deeper?)
    I also know LOOOT of hams on the Earth use loops everyday and do right the same tests hi... Maybe this was just coincidence or last "drop" after the day gsm dose hihi needed to cause eye inflammation (realy bad, i know what I say because I work in IT since 1994).

    I hesitated to post first post, Sivan. (Even after your post I thought to delete it) The whole thing begs to retest it but something inside me (experience and/or fear) tells "don't".

    Best 73 to all of you! And play safe.

    p.s. I just remembered a ham from US who carries 1KW (2kw?) in his rucksack and puts it into short antenna right above him... I hope he's OK

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  11. I wonder if using a magnetic loop makes a difference because of the strong near field? I saw a page on a Japanese ham's site where he complained of "brain dullness" after operating 100W CW for a couple of hours into a magnetic loop a few feet away. And there is an article about a large magnetic loop for low bands that caused heating in objects some distance away when high power was used.

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  12. Exactly, Julian.

    It's extremely strong! Who could thought that this loop makes such a wonder transforming 5 watts in to almost "boiling" neon lamp placed few centimeters at the top of loop. I can confirm "brain dullness" too. It's hard to find right words to describe it (it was a year ago)...
    I would forget about it next day if that eye inflammation wouldn't occur... And then I thought about possible relation.

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