News for 2001

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for earlier news, click here.
For scans, click here.
For the temozolomide treatment protocol, click here.
For tables of Margaret's blood test results and medications, click here.

29 January 2001

Just installed a new 'home page'. If you haven't refreshed that page, please do. If it looks cheerful, it's accurate.

24 January 2001

Today's blood count was good, platelets climbing to very safe levels [275], white blood cells down [4.7], but still safe. From from the temozolomide protocol (link above) you will see that the temozolomide dose is adjusted down if platelets fall below 50 and white blood cells below 1. A few friends on internet discussion groups have been coping with platelet numbers as low as below 5. Apart from delaying the next temozolomide round, and requiring platelet transfusions (platelets only last three or four days, and sometimes people call on friends to donate - blood group is apparently not relevant), a lack of platelets, which are little clot makers in the blood, can see little breaks in blood vessels here and there. These itch, people scratch and, with a low white blood cell count, there is infection risk. Hopefully we will stay away from such problems.

23 January 2001

We hide from the heat; the multiple insulation of the extra roof over the roof, and the new air conditioner make a chilly combination!

Margaret finished round 2 of temozolomide on Sunday night 21 January, and came through a bit better than at the end of round 1, though the combination of gut spasms and twinges of nausea contribute to a great sensitivity which makes life uncomfortable and agitating; pretty much finished now. We have still been pretty active, going out to visit friends for several hours yesterday afternoon, after a morning spent shopping.

I had an alarming experience at 1.30 this morning. Turned over in bed and found a wet patch. First check, no, Margaret only damp on top [relief]; second check, wasn't Dennis [bigger relief] - eventually found empty water glass. The thalidomide is pretty sedative, Margaret evidently came back to bed at some moment in the night and brought a glass of water with her, but did not get to drink it.

Anyway the adrenal alert after that, combined with clarity of mind from a dose of Robert Yang's ginseng herbal (I occasionally share Margaret's energy herbal) had me out of bed thereafter and by 6.30 I had posted to the internet a revised and edited version of the basic guidance paper on coping with brain tumour which I first drafted in December for OzBrainTumour. A copy is here and any comments on it would be appreciated. OzBrainTumour has been a bit preoccupying, the business of getting a new discussion group on its feet, but we have a nice achievement in that we now have an Australian doctor advisor. We have, as you know, had to do a lot of work in the past year to be able to inform ourselves, and if this group can help people be better informed more swftly, and deal with the issues more happily, good. But forgive me if this has kept me from this diary; rest assured that Margaret is doing well.

Oh, just to mention that, looking to the need to see the neurosurgeon on 7 February and with this CSF leak still evident in the bulge on Margaret's left temple, Margaret has taken to wearing a black wig we got in Sydney most of the time (it had to be recovered from Catherine - there's a picture of her wearing the wig under 'Recent' in the picture gallery). Tomorrow we're going to take a look at the wig library maintained by the Cancer Society at Canberra Hospital, for some variety. The point being that if there may be some need to wear some kind of prosthesis to keep the fluid in while the brain repairs, the elastic of the wig may just make a difference. And Margaret has found the wig warm and comfortable.

Yes, I'll have to take some photos and update the home page too... but I'll have to get the camera back from Catherine [sigh] who's taken it to work today (volunteer work at the Canberra Museum and Gallery [CMAG], taking photos of some exhibition items, I think.

As many of you know, we have daughters turning 18 [Cat] in the end of February, 21 [Liz] early April. Sunday night they resolved to set a date mid-March (watching Margaret's health the Saturday before/Saturday after the current temozolomide round, to assess whether to party before or after the March round beginning 14 March) to have a joint party down by the lake on Aspen Island, by the carillon (here is another family's pictures - takes time to load - some of the lake, one of the carillon, second from left bottom row); a big party, with overlapping friendship/relative groups. If it rains, we may have a deluge of people in the house, but the weather is generally pretty kind at that time of year. Just for the devilry, grumpy old public servant fiscal 'this is life' budgetism, I said "What if we give each of you a fixed sum of money, and you can decide what portion to spend on parties, what portion to spend on yourself" but then they came up with this wondrous positive joint party proposition, and successfully sidestepped my proposition - while also planning something that will be grand but at modest cost.

17 January 2001

Well, what a powerful woman. Blood test this morning shows Margaret's platelet numbers have recovered very well, to 210, and her white blood cell numbers are up into unexplored country, at 7.9! We do attribute this to the value of herbal and vitamin supplements. For details use the link above.

We have been having a quiet time at home, though as I speak things are not entirely quiet as the roof replacement work is said to be finishing today and there's much thumping overhead. We now have an extra steel roof over the previous flat steel roof, with a result that we have good insulation against very hot weather of late.

Margaret is feeling very strong in mind, a bit weary in body, but I think this news today of the blood count recovery is going to cheer us up. Temozolomide round 2 starts tonight.

11 January 2001

The results of Margaret's blood test yesterday is OK - the white blood cells have risen, while the platelts have fallen, to the bottom of the normal range. These are indicators of immune system capacity; Margaret has fully recovered from the cold we both had last week and did so more quickly than I did. I have created a separate page (the link is above) with blood test and medication information, mainly to have it readily accessible if we should at any time have to seek medical attention away from home.

10 January 2001

Dr Craft has provided a copy of the Canberra Hospital temozolomide protocol, which appears to be the first specifically neuro-oncology protocol in the hospital. A copy is here. Note from this the importance of the Day 21 full blood count - today's. We are waiting for Emma or Glennis to arrive to take the blood sample; results later in the day...

We saw Rob Reid, our family doctor, yesterday, mainly for him to get up to date with treatments since we last saw him; he also looked at Margaret's minor swellings and discomforts in feet, ankles and hands, and leg cramps which appear to be diminishing a bit.

7 January 2001

We saw Dr Paul Craft, oncologist, on 5 January, who was very impressed by how well and energetic Margaret was, compared to her condition when he first saw her in October.

We discussed round 2 of temozolomide, due to commence on 15 January, Monday. It was decided that, as, for practical reasons, Margaret's blood trsts have been shifted from Mondays to Wednesdays, and as the white blood count and platelet measures on days 21 and 28 are used to alter, if necessary, temozolomide dosage (if the blood count is down, the dose must go down), Margaret's commencement of round 2 should be moved to the Wednesday night, 17 January (round 3 from 14 February, not 12 February, etc).

Margaret and I have had colds. Dr Craft checked Margaret's and found no secondary infection, prescribed no treatment. My cold started earlier, last Monday, and it looks to me as if Margaret is going to recover from hers more quickly than I will...

Dr Craft also checked out some problems Margaret has had with leg cramps and pains in foot, swellings in feet and parts of hands, deeming these to arise from dexamethasone treatment. Dexamethasone has some very unpleasant 'side' effects. Margaret does not have behavioural problems reported by some carers. Here is a comment on this which I wrote this morning. It should/may open itself in your mail program.

Dr Craft decided that as Margaret had experienced a period of increased difficulty bending down for some days starting after completing round 1 of temozolomide, and is still suffering some increase in headaches and sinus pain from that time - symptoms probably attributable to increased oedema - it was safer not to reduce from the present dose of dexamethasone at the moment. An increase in inflammation and thus oedema would arise from tumour cell kill by temozolomide, so a little bit of oedema may not be a bad sign.

We see Dr Wheeler in Sydney 12 February, then Dr Craft again, here in Canberra, on 14 March (need to see a doctor before each round of temozolomide). I realised afterwards that it's nice to make an appointment so far ahead and think it's routine, not a focus for anxiety.

3 January 2001

We had a quiet New Years Eve at home, Margaret and I, the girls out for the evening. Nice messages from various people, thank you. Frank rang from Arlington Virginia, our lunchtime January 1st, his and Marie's New Year's Eve, to ask how 2001 was going, and was delighted to talk to Margaret for nearly half an hour, and appreciate how well she is.

Blood count today was down a little, platelets at 200, white blood cells at 4.3, still in the safe range, but a quick drop (see table below, 28 December entry). Glad Margaret has the pro-immune herbs to take.

We did something which made us very happy, though that may sound odd, just before the end of the year. We went to the Woden Cemetery, and we decided upon a grave site for ourselves, in a lovely location, at the highest point in this cemetery, which was recently 're-opened' for some 'urban infill' - very small, very quiet, in-town, seven minutes from home by car, a walk from the bus interchange, only 130 burials a year, a parkland of established trees, largely owned by the sulphur-crested cockatoos who have made it their home longer than it's been a cemetery.

I wrote a report on our visit for the BrainTmr internet discussion group, a copy of which is here. (I know that link works for us, using Microsoft mail software, not sure if it will work for others.) It is important to appreciate that in a discussion group like this, people talk about all sorts of things, it's a valuable mutual support. It was nice to get positive responses from people, such as this one: "Dennis, I could not agree with you more, I too found it very difficult to even bring up this delicate subject to Janet until I figured out that making arrangements for me also completely took the edge off the topic and we were able to discuss our wishes openly. We also have made it a point to make it a topic we discuss with friends and family, to not wait as who knows what tomorrow will bring. It is a subject that we all have thought about as individuals but rarely share with loved ones. As always, Mark" and also this nice response: "Dennis, I saved this all day because I wanted to tell you this was a great post. Wonderful advice and a wonderful, loving story. You live (and love) in a beautiful place. Lynn w/o AAIII, dx and surg FEB '89, rad, chemo, given 12 to 18 months to live 12 years ago ! Many deficits but no visable tumor at this time [which is the way folks writing these emails sign their names, with their history summarised]." And more wistfully ".... and I were planning to do this job too but he got paralised, so the social worker came with me to the funeral parlour, then a month later my friend went back with me and I was more clear headed, so made more decisions. Its important to get it out of the way and then you feel you have dealt with it, it should be easier than in the crisis of it all. Thanks for sharing, I am glad, I thought at one stage I was the only one who had to face things up front."

We've been back to the cemetery a couple of times, to show the site to Cat (Liz away) and to Margaret's sister and brother-in-law Mary and Paul. It is, as reported in the email I hope you've been able to open, the sort of place we like for a picnic. We've also paid for a memorial seat to be placed nearby (just a few feet away) under a great row of pin oaks planted in 1932, as soon as possible, so we can picnic in comfort! We've asked for a plaque to read:

28 December 2000 - wonderful blood test results

Having prepared for the possibility of a bad blood count, the report on yesterday's blood sample is good. Here's a table:

23 June 1999 was, of course, way before any diagnosis, a blood count taken when Margaret had a crisis of energy and an inconclusive thyroid investigation.
22 November - at commencement of daily thalidomide, taking Chinese herbs to boost the immune system, to a script to cope with radiotherapy, earlier.
18 December - day of commencement of temozolomide, and also commencement of new prescription of herbs to support the immune system as adjunct to chemotherapy
27 December - after temozolomide course from 18 to 22 December, this is a point where it might be reasonable to see some decline in white cells and platelets, as part of temozolomide 'flare'.

This would appear to reflect real benefit from the Chinese herbs - see Prof Chen's comment, below.

I'll post the prescription for this herbal mix here as soon as possible. It will be in Chinese and will be general herbal, suitable for a Chinese traditional practitioner to adapt to the individual, following a physical examination. A traditional Chinese consultation includes extensive reading of pulses in both wrists, examination of the tongue, complexion and eyes. Some questions may follow, but a good Chinese practitioner will get a lot of medical (somatic and psychological) history from these physical indicators alone.

I think I'll just go away with a smile after such good news, have a little rest and leave you to drown in the next paragraph, written earlier. We were all geared up for thinking positive ('she must be responding to the drug') if there was a bad blood count, but we are not going to get unhappy about a good blood count. Of course, we shouldn't count all the chickens, look them in the mouth, nor count their teeth, until we've collected the eggs from next week's blood count and seen what's come home to roost.

This paragraph contains a lot of links to research information. I have been writing about Margaret's intake of antioxidants (vitamins A, B, C, E - see links below - and I should add carbon dioxide - in soda water, and in baths with baking soda - a very large subject, but start here, here, here, here). It is evident that, along with general health, antioxidant levels (or, the other side of the coin, free radical levels) are basic to vulnerability to cancer. The view that antioxidant supplements may be bad when people already have cancer because antioxidants may protect tumour cells seems several ways flawed. First, because tumour cells would seem to have their own antioxidants, and in any case, in their reliance of glycolysis are less reliant on oxygen. Second, because such a view seems based on the notion that cancerogenesis (oncogenesis, tumorigenesis) is a one time clicky thing that involves one cell's mutation and all the cancer cells arise from such an accident. On the contrary, there is almost certainly a continuing process of cancerogenesis, and there's no point just killing cells if that is still continuing. And the cells killed by chemotherapy may be the least of worries. (Here's a lovely British abstract that says everything and nothing at the same time.) It is also argued that, contrary to the general notion of cancer as a one way street, of cells turning malignant, there may be changes back the other way taking place. A central consideration is why cells lose the capacity, inclination, to differentiate but this of itself is not the central cause. Cancer seems to involve attempts at adaptive behaviour, in response to stresses. It seems likely that the key issues facing cells are energy issues, and being better addressed by European minds than in the English speaking world. And are intimately related to metabolism. So we are concerned to support Margaret's healthy metabolism, not just attack cancer cells.

26 December 2000

Well, it's almost the New Year, and we've made it. And we can round things up a bit.

I've not been updating in the past 10 days, some problem with the software, also busy as a family, also I have been busy with internet discussion groups on brain tumour subjects. There is always much to learn and now, too, there is much to be passed on. There are people everywhere newly facing the same sorts of problems we face and it is good to be able to be of help.

Margaret completed her five day course of temozolomide (Temodal® in Australia- Temodar® in some other countries) on Friday night 22 December. There was some growing fatigue in the last couple of days, easing now. There was not a lot of nausea, and after the first night with a dose of 8mg of the anti-nausea drug Zofran, the dose was halved to 4mg. This we were pleased about as it is a very constipating drug. Margaret did well fighting this problem until Thursday, but the last few days have been, well, hard. Large doses of Coloxyl + Senna are not pleasant, producing cramps, hard to know the boundary between nausea and gut cramps. In the end, on 24 December, we began elevating Margaret's vitamin C dose to 'bowel tolerance' and this has helped, hopefully in multiple ways, but certainly with the constipation. For a definitive paper on use of vitamin C to bowel tolerance levels for many diseases, click here. Margaret's dose of vitamin C is up from about 5gms a day to around 20 (as Berocca B+C effervescent drinks, with calcium ascorbate powder dissolved in them, being kept two hours away from Dilantin doses as Dilantin is locked up by calcium salts).

Margaret is at the end of supply of the anti-tumour Chinese herbal powder obtained from Prof Zhang Bei in Guangzhou (as distinct from the herbal we cook every other day, prescribed by Zhang Bei, dispensed by Robert Yang in Sydney. To import more we would need to list the ingredients for the Therapeutic Goods Administration. I have been emailingand telephoning Professor Chen Zhongping, Chairman, Neurosurgery/Neurooncology (click here for background) and we are much inebted to him. He has advised that Prof Zhang Bei, whose intellectual property this powder is, is not prepared to release information on all its ingredients at the moment as she is conducting laboratory and clinical trials. Today he has confirmed this situation, but, in reply to my request for an opinion on the herbals, has noted that Zhang Bei's program includes two different recipes for Margaret: "One is powder which she is using for kill tumor cells, the other is that you can get from local herbs. For my opinion, the later is more important and valuable that the powder, since whether or not the powder can kill all tumor cells still has question marker, but using herbs to build up immune system is no doubt and very helpful to cancer patient. This is my western Chinese thinking." (I had asked him, in good humour, for his opinion not as a polite Chinese person, but as a western-trained doctor. That last sentence of Chen's would have been delivered with a wry smile.)

This advice on the virtue for the immune system of the herbs we are cooking comes at a reassuring time, right when Margaret faces risk of a "Temodal flare", as Dr Wheeler describes the lift in oedema Margaret was having somev difficulty bending down, sense of oedema surge in the head, yesterday and Christmas Day) and drop in white blood cells and platelets that may accompany this phase of Temodal treatment if there is a lot of tumour cell killing going on. If you look at this research abstract you see risks of neutropenia and opportunistic pneumocystis carinii pneumonia. Hopefully the Chinese pro-immune system herbs will keep us from that, along with Margaret's vitamins (A and E - a couple of many links available to show research evidence of value of these vitamins - as well as B and C). Tomorrow is full blood count day, and each Wednesday after that, for some time. Despite confidence, we have some briefing papers on Temodal flare (and ocntact numbers for the oncology experts) in the bag with Margaret's scans, as there will be no familiarity with it among Accident and Emergency staff if we have to rush to hospital. Margaret's temperature last night was 37.3c, this evening 37.5 (after a walk outside on a warm evening, and on a Braun Thermoscan eardrum temperature measuring thermometer, which tends to read high).

Margaret has done lots of walking and though the fatigue/constipation slowed her down in the last few days, it has been a period of considerable activity and good health, with quite a few frustrations, though, because the trauma to the frontal lobe does have an impact on memory and clarity of thought still. With the girls with us, we have had a nice Christmas, our developing style of Christmas dinner, expanding antipasti ideas, with freshly-grilled eggplant and capsicum, the latter then bathed in olive oil with toasted rosemary; bocconcini, artichoke hearts, potato salad with Nicola potatoes and fresh mayonnaise using olive oil and eggs taken from under chook bottoms moments before, green salad and carrot salad, salami, prosciutto di Parma, cold turkey breast with spicy blueberry sauce made by Margaret from our own blueberries at the farm last January... Cat directed the menu and kitchen preparations, I barbecued the capsicum and eggplant, made the potato salad and set the table and more, and Liz spent time with Margaret still resting in bed before lunch.

May we wish you all a very happy new year!