2005 January 27 Thursday.
Confronting the clinical trial:-
When I got home, the data for participants in the clinical trial had arrived by post. The Clinical Trials Co-ordinator from Clinical Oncology at Auckland Hospital will phone me next week to see if I have any questions.
The document that I've got in my hot little hand is the "INFORMATION FOR PARTICIPANTS" for "A PHASE 2 STUDY OF IDARUBICIN-BASED COMBINED MODALITY THERAPY IN PRIMARY CENTRAL NERVOUS LYMPHOMA", and starts:-
"You are invited to take part in this clinical research study of a new combination of chemotherapy drugs (Idarubicin and Methotrexate) followed by a lower dose of radiotherapy.
"The study will involve several hospitals in Australia and New Zealand and is expected to include a total of 53 patients.
"This information is intended to give you some background on the trial and to help you decide whether you wish to take part or not."
In point of fact, I haven't yet been "invited", and don't yet know whether I will be. However, I do want to take part, if possible. My hope is to be invited to take part because I'd like to make a quick start on my treatment (I'd like to jump the waiting list, if possible) and because the trial means less radiation (and I'm scared of the radiation).
The information on the clinical trial is good, and does address the issue of cognitive deficit, including memory loss and so forth, which may add up to "symptoms very similar to what is commonly called 'dementia'".
The document I have bears the code number "TROG 01.02", is tagged "Version 3, 21/06/04", and relates to "A trial of the TRANS-TASMAN RADIATION ONCOLOGY GROUP (TROG) and AUSTRALASIAN LEUKAEMIA AND LYMPHOMA GROUP (ALLG)."
With regard to Primary Central Nervous System Lymphoma, PCNSL, the disease from which I am suffering, radiotherapy on its own is not effective, as the chance of the lymphoma returning is ninety percent.
The document says:-
"A combination of chemotherapy and radiotherapy has proved much more successful than radiotherapy alone, with a significant increase in the proportion of patients who are cured. The previous study performed in Australia and New Zealand was able to confirm this using a drug called methotrexate followed by radiotherapy. The main problem with the combination of treatments is the risk of developing damage to the brain. This can be a severe and irreversible consequence of the combination of radiotherapy and chemotherapy. It most commonly results in a worsening of memory and difficulty walking due to problems keeping your balance. These symptoms are very similar to what is commonly called 'dementia'. The majority of patients who develop this problem eventually require nursing home care. For patients in the previous study, the risk of brain damage was 15%. Most of the patients affected were older than 60 years. In this group the risk was 22%".
There you are. They don't exactly license the use of the term "dementia", and yet that's the territory we're venturing into.
I feel as informed as I can be.
It's a lottery.
Okay, so let's gamble. The roulette wheel is ready. The red chip that I'm now going to place on the wheel is my life, my one and only. The payoff, if I win well, is my physical survival -- the survival of me the fighting fit. If I lose, the downside is a quick trip into senility, or into a condition which may not be far removed from senility, at least not as far as the patient's subjective experience is concerned.
I'm going to take the gamble.
This is actually a pretty simple straightforward decision as far as I am concerned. I have, after all, only two options. One option is to gamble with my sanity. The other option is to die. I'll choose the casino rather than the guillotine, thank you very much.
A complicating factor is that brain damage from radiation may become apparent "months to years" after treatment. So, even if I seem to get through radiation therapy okay, I may not know the ultimate outcome until years later.
If accepted for the clinical trial, it would be the case that "Your memory and ability to perform daily functions" would be assessed before treatment, four weeks after completion of treatment and again at twelve months.
There would also be a CT scan at twelve months.
So, having read through the information on the clinical trial, I ended up feeling well informed, but with a list of twelve niggling questions, for example, would it be possible to get appointments for the twelve-month CT scan and the twelve-month performance check in the same week?
I want to know because I would be coming back from Japan for those appointments.
All in all, I had a very busy day.
Regarding the waiting list, Catherine says that the total oncology waiting list is a hundred and sixty-five people, but that is not the lymphoma waiting list. It is the people on the lymphoma section of the waiting list (a subset of the one hundred and sixty-five) who will be treated by the hematology department, starting February.
So if I am rejected for the clinical trial (a decision which will be made by someone in Australia, one possible reason for my exclusion being the involvement of my eye) then I would not be patient one hundred and sixty-six on the oncology waiting list. Rather, I would join the shorter lymphoma waiting list, the people waiting to get into hematology.
"How can we possibly have a waiting list for oncology!" said my GP's nurse this morning.
But all health care ends up being rationed, in one way or another, regardless of the system.
I feel I've had a busy and productive day. I discussed my confidence levels with Catherine. Objectively, I recognize that I may die, or end up severely damaged. However, I feel confident because, first, I am very strongly supported by my family here, and, second, I am conscious of being in excellent health.
After all I've been through (CT scans, MRI scans, a gallium count, ECGs, blood pressure monitoring, blood tests and so on) I can be confident that I am in excellent health, apart from the lymphoma.
I made a discovery today which really shocked me. Apart from all the other things that brother-in-law Alan has on his shoulders, he's been taking on the duties of being the executor (or perhaps the co-executor, with another person) of a complex estate (multiple former wives and children) under the terms of a complex and poorly organized will.
Weather sunny, a real New Zealand summer. The warm weather suits me perfectly. I tend to feel the cold, and may be a little anemic.