The monster has grown back significantly during the past two months, now almost totally filling the tumour cavity left by the last operation snd extending into the other half of my poor brain (it always affects the weakest part, doesn’t it ?). I haven’t spoken to my Neurosurgeon yet, but my Oncologist assumed a grave voice when I talked to her on the phone.

I am feeling physically fit, if a bit tired at times, but the psychological stress on Milena and our two girls is taking its toll and I’m not exactly behaving like Mr. Cool at all times. Don’t know what we are going to do next, but we’ve decided to enjoy the time we have together and to build a lot of good memories to be able to draw from in the future.

I’ll continue to post and if anyone wants to come down here to drink with me to life, love, and good friends you know how to find me.

Cheers xxx,
Tom

Couldn’t be arsed to post for a while now, sorry! I am currently taking extended beauty sleeps (not that it really helps) during my days. This is probably due to the medications. Also, my eyesight is down to 40%, which makes working with a laptop rather difficult. I did get a white stick, however, in order to alert other pedestrians to give me a wide berth or risk being run over by a massive blind guy. This has also paid off in another way, as I was offered a seat on the tram by a well-meaning elderly lady – which I bashfully declined, mumbling something about tunnel-vision and not being totally infirm.

This weeks’ MRI results were quite encouraging, with no signifant new growth and the tumour apparently reacting to the chemotherapy since less contrast agent was absorbed. I have now scheduled chemotherapy sessions until October 2009 and I will have my head examined again in about two month’s time.

My reading projects have been shelved, literally, due to my sight impairment, but I hope to be able to resume reading soon with the help of a good magnifying glass.

In other news, our daughter Laura had her debutante’s ball at the opera house here, and boy did she look stunning! Young Stella is just back from a school trip to London, but wants to go back soon as the time alotted for shopping was far too short in her learned opinion. But before we go London again we will spend some of our summer holidays in France, near the castles of the Loire, where we have rented a house with a pool, a gourmet kitchen, and a grand piano in the hall. Can’t wait to go!

Cheerio,
Tom

Well, you know what they say: three experts, three opinions. In this case, this is easy for me to live with, as the general view of my MRI results (bar one) is that no new growth has occured, my neurosurgeon even thinks it’s gone back a bit!

We are besides ourselves with joy!

I am convinced that he is correct, since he knows the inside of my head like no one else and the guy with the dissenting opinion (radiologist) incorrectly identified blood vessels showing up on the contrast frames as new tumour growth.

The Temozolomide treatment certainly did help, but I am equally certain that Milena’s magic reiki treatments played a major role in stopping the tumour. Just wanted to share this piece of excellent news with all of you before I’m too happy with drink to write a proper post.

Prost and love to all of you,
Tom

What a relief, no changes since the last MRI, which means no new growth in the last five weeks since the operation. We’re all very happy. The chemotherapy continues, alas and I’m still very tired.

A bit of a disappointment on Tuesday as the MRI did not look as expected but rather like this. The friendly-looking flowery shape is the evil regrowth!

I am most likely going to have another operation but undecided about the where and when. Also, since the therapies so far have been less than effective a radical rethink is required. More about this later, in the meantime any good ideas, prayers (for those of you so inclined), toasts to my good health, etc. are very welcome.

So keep these good vibes coming my friends!

Cheerio,
Tom

I must have been too upbeat after my radiation ended and now I got the punishment for it. Reducing the Cortisone intake was not such a good idea after all. Started feeling really woozy last week, getting headaches, bumping into things again, and staying in bed for days on end.

Net effect, back to square one, like before the operation. The fact that I cannot have a MRI until the end of October has also depressed me a bit, as these gliobastards can regrow at an astonishing rate.

On the other hand, I’ve thrown so much at it, with the radio- and chemotherapy, the immune-treatment in Cologne, the hyerthermia and the dendritic cell therapy, it seems hard to believe that the tumour has been able to thrive in these conditions.

I’ve changed my blog around a bit, you’ll find the bucket list as a separate page now, and I’ve started to fill in some of the glossary. You may note that I have a section on palliatve care, more on this later, let’s just say that I am more on the side of cure than just care.

Now that I have upped my Cortisone dosage once more I’m feeling much better again and the energy has returned. One “interesting” aspect of larger doses of Cortisone is that your leg muscles get weaker (I look like a potato on sticks), so I will take up an exercise of stair climbing and walking in my neighbourhood.

With the new energy, the depression has also disappeared which is a good thing!

Next week I’m off to Cologne for another round of getting my immune system up and running again, this has obviously suffered from the radiation and the chemo.

Cheerio,
Tom

This is the first of the new posts which will have real titles indicative of their content and not just a date!

After the initial shock and a couple of good cold beers I put on my investigative reporter’s hat and started my quest for information. A real treasure trove it is too!

UCLA Neuro-Oncology are running a comprehensive brain tumour programme and they are the only ones (I know of) who keep and publish extensive data on their patients. Now, according to the doctors at UCLA

Glioblastoma multiforme (GBM) survival rates vary greatly depending on several key-factors, such as initial diagnosis, number of times the tumor has recurred, patient age, molecular diagnostic results, past therapy, Karnofsky Score, tissue features, along with 50-60 other key variables…

High checks for yours truly on a number of these key-factors, including total surgical removal, high Karnofsky Score, youthful age etc.

The corresponding chart shows that the median survival rate for all GBM patients in my age group is 617.18 days. Now this includes everyone, irrespective of whether they have had surgery or not. Notice, how a couple of people are nicely beating the odds by hanging in there for 3,000 days and more!

Plan for the next few weeks is to read up as much a possible (any leads or info you can provide is welcome) and to get a plan in action to keep the bastard in check.

I’m alive and kicking!

PS: have I told you that goats cheese is soul food?

This is kind of hard for me!

I originally started this for myself and then let you in on my “dirty little secret”. I guess I didn’t want to go the whole hog alone and was frustrated and scared and whatnot. Your encouragement means the world to me!

So, anyways, the blob has been identified. It’s called a glioblastoma multiforme and it appears to be one of the more aggressive tumours around. There’s no telling yet if and how it will regrow or react to chemo- or radiotherapy. The odds are lousy, but then according to Wikipedia “approximately one in 5,000 glioblastoma patients survive for decades”.

I guess it’s all down to a mindgame now and how to beat the odds.

I’ll post more in the coming days, but tonight I’ll spend some time with my family (and might quite possibly get a bit drunk too)

Cheerio,
Tom

Feeling somewhat better now. Just back from talking with the head of the neurosurgery clinic. It appears that the operation itself is no big deal, routine so to speak (see below).

Problem is, they don’t really know what it is.

On the positive side, however, the tumour seems to be well-defined and therefore easier to remove. We’ll have to wait and see.

Tomorrow I’ll go to hospital for some more tests and preparation, but thankfully they let me spend the weekend at home. Operation is scheduled Monday morning and will last 4 hours if all goes well. A circular piece of my skull will be removed with a drill, the tumour surgically removed (it is close to the surface, so it should be easy access (according the the surgeon). Then the piece of skull will be stapled (yes, stapled) back into place with a few titanium staples. If all goes well, my first post-op post should be on-line Tuesday.

Same time, the pathologists will start with the analysis of the tumour. Once we know what it is, a course of action can be taken.

Heck, this is an emotional rollercoaster, I’m really grateful for the support I get from my family and friends!

Sorry, couldn’t be arsed to write anything. Also feeling very tired. Trying to cope with the diagnosis (high grade glioma or melanoma-metastasis).

Again, thanks to Wikipedia we have instant access to the wide and wonderful world of gliomas:

A glioma is a type of primary central nervous system (CNS) tumour that arises from glial cells. The most common site of involvement of gliomas is the brain, but gliomas can also affect the spinal cord or any other part of the CNS, such as the optic nerves.

Gliomas are further categorized according to their grade, which is determined by pathologic evaluation of the tumor.

• Low-grade gliomas are well-differentiated (not anaplastic); these are benign and portend a better prognosis for the patient.
• High-grade gliomas are undifferentiated or anapalstic; these are malignant and carry a worse prognosis.

Of numerous grading systems in use, the most common is the World Health Organisation (WHO) grading system for astrocytoma. The WHO system assigns a grade from 1 to 4, with 1 being the least aggressive and 4 being the most aggressive. Various types of astrocytomas are given corresponding WHO grades.

WHO grading system for astrocytomas

• WHO Grade 1 — e.g., pilocytic astrocytoma
• WHO Grade 2 — e.g., diffuse or low-grade astrocytoma
• WHO Grade 3 — e.g., anaplastic (malignant) astrocytoma
• WHO Grade 4 — glioblastoma multiforme (most common glioma in adults)

The prognosis is the worst for grade 4 gliomas, with an average survival time of 12 months. Overall, few patients survive beyond 3 years.

Will meet the head of the Neurosurgery clinic tomorrow, to discuss detail procedure. Plan is to do some preliminary tests Friday, 30th then to “release” me again for the weekend (but like in a halfway house, I have to be back on Sunday afternoon).

First thing Monday morning they will bring in the big drill…

Hell, I’m scared shirtless