Margaret's blood tests and medications

Margaret's blood tests and medications and supplements

The extensive information below was relevant up to June 2001. Arising from the breakout of tumour and hospitalisation for third craniotomy 2 July, there was a further shift in the pattern of medication.

When Margaret moved to the ACT Hospice on 30 July 2001, the medications were as follows:

[bd = twice daily; tds = thrice daily; qid = 4 times daily]

Drug	Dose	Notes
Dilantin [phenytoin]	300mg bd	Anti-seizure: In use since April 2000; ceased to be fully effective alone in May 2001. This dose needs reviewing; dex dose is dropping and thus Dilantin will not be metabolised at the same rate.
Neurontin [gabapentin]	300mg tds	Anti-seizure: Canberra Hospital in May added Empilim [sodium valproate] to Dilantin. Dr Wheeler in late June substituted Neurontin, her 'favourite anti-seizure drug'.
Dexamethasone	4mg bd	Anti-swelling: dex is not of therapeutic value, but critical for reducing pressure in the brain where possible; largely by its anti-inflammatory action. In June, as symptoms returned, they were controlled by little doses of 0.5mg (see below). For the operation, the pressure had to be reduced and dosage was upped briefly to 4mg qid. Then after the operation, lowered swiftly to 4mg once daily, as the anti-inflammatory action also opposes wound healing. Then on 16 July, observing the rise in swelling (see diary) and Margaret's deterioration, Dr Cook raised the dose to 8mg tds for five days, then 4mg qid for seven days, then on 28 July to 4mg bd. If Margaret continues to improve there can be a drop to 4mg a day on 3 or 4 August. That is, if we are dealing with reduced swelling, Margaret's dose can be weaned. We can presume that swelling will reduce, unless there is tumour regrowth. The critical measure of this is Margaret's performance. If she should deteriorate from this point, that would be likely to be an indicator of tumour regrowth, new mass effect from the tumour, the fluid it produces, the inflammation and swelling caused to normal brain by all that, all bloody that. Hence the importance of Dr Wheeler asking me to let her know how Margaret is doing, around 17 August. If the tumour has raced away, then no point in a scan, no point in consideration of resuming temozolomide.
Famotidine	20mg bd	H2 blocker, preventing stomach ulceration, reflux, opposing the tendency of dex to cause that. Margaret hitherto using ranitidine [Zantac].
Tramadol	100mg tds	Synthetic codeine form, not addictive, not constipating. This was initially prescribed to be available on request, 50 to 100mg six hourly, no more than 400mg daily. Margaret's main source of pain is discomfort from being bedridden, and from DVT, not from brain. Unfortunately frontal lobe difficulties in recognising pain, combined with speech problems, meant Margaret did not get the medicine when she needed it. Hence altered to 100mg qid last week, then this week, on my suggestion, to 100mg tds, as Margaret now taking thalidomide at night which has such good sedative effects initially that there is not much point and some difficulty waking her at midnight.
sauramide [Thalidomide]	100mg nocte [at night]	Anti-angiogenic - opposing the growth of new blood vessels, without which tumours cannot grow beyond pinhead size. Response rate 30%. Was part of Margaret's medication from 21 Nov 2000 to 27 June 2001; seemingly contributed to holding the tumour for that period. On 27 July, Dr Wheeler agreed to my request that we have this in the mix before going to the hospice. There is considerable doubt that it will work, agreement that if it is to work, better sooner. For review after 17 August.
Sobilax	20ml bd	Laxative: being bedridden and sick contributes to constipation, as did operation and now Thalidomide.
Coloxyl 50mg and Senna	2 tabs bd	Laxative
Clexane	60 units 0800 40 units 2000	Low molecular weight heparin - to deal with thrombosis - see http://www.swsahs.nsw.gov.au/livhaem/Handbook/Thrombosis.html and this and this.

Here follows the data from earlier medication and blood tests, useful for people wishing to see issues related to:
- balancing dex and Dilantin, and a schedule for withdrawal from dex.
- the impact of temozolomide on white blood cell count and platelets.

This chart maintained here not least in case we need medical attention away from home...

1: From full blood count.
The purpose of this regular check is to check against the possibility of 'Temodal flare' -
if there is a crash in white blood cells and platelets, the dosage of temozolomide is reduced as indicated in the temozolomide protocol
and if the crash is very great, there is a need to consider transfusion and IV antibiotics.
These figures show a very strong recovery from a dip in white blood cells, a larger fall in platelets,
but all within 'normal' range, during round 1 of temozolomide.

	Normal range	22/11/00	18/12/00	27/12/00	03/01/01	10/01/01	17/01/01	24/01/01	31/01/01	06/02/01	13/02/01	20/02/01	27/02/01	06/03/01	13/03/01	27/03/01
*WHITE CELLS*	4.0 - 11.0	6.3	5.9	6.2	4.3	6.0	7.9	4.7	3.9	5.5	4.1	4.0	4.0	4.3	4.4	4.3
*Neutrophils*	2.0 - 8.0	3.6	3.9	3.7	2.2	3.7	5.2	2.2	1.9	3.2	2.3	2.5	2.3	2.1	2.1	3.1
Lymphocytes	1.0 - 4.0									1.4	1.2	0.9	1.1	1.3	1.4	0.5
*PLATELETS*	150 - 400	299	202	241	200	150	210	275	231	182	125	221	223	175	139	200
*Temozolomide schedule*	5 days in 28		18-22/12				17-21/01				14-18/02				14-18/03
*Events and incidents*																virus - treatment with Ceclor

Normal range

03/04/01

09/04/01

10/04/01

14/04/01

17/04/0`

20/04/01

24/04/01

27/04/01

02/05/01

09/05/01

17/05/01

22/05/01

28/05/01

WHITE CELLS

4.0 -
11.0

3.4

4.4

3.2

2.7

2.1

2.9

3.7

3.8

3.5

3.6

3.9

Neutrophils

2.0 -
8.0

2.0

1.9

1.5

1.82

1.1

1.4

1.8

2.1

2.2

2.0

2.3

Lymphocytes

1.0 -
4.0

0.8

1.5

0.9

0.42

0.7

1.1

1.4

1.1

1.2

0.9

0.82

PLATELETS

150 -
400

135

117

115

212

223

219

208

126

171

209

223

179

202

Temozolomide schedule

5 days in 28

defer?

defer to FBC on 17/4

defer for WBCs 17 or 18/4

deferred still

defer till 4.0

defer

start round 5 on 7 May

7-11 May @ 250mg

Events and incidents

seizure - see s.Dilantin and diary

Probably gastric virus, causing nausea

at last the direction is right!

thrombo-cytopenia

On admission to hospital with seizure

	Normal range	30/05/01	05/06/01	12/06/01	19/06/01
*WHITE CELLS*	4.0 - 11.0	4.2	5.7	5.7	3.6
*Neutrophils*	2.0 - 8.0	2.11	3.3	3.8	1.9
Lymphocytes	1.0 - 4.0	1.24	1.4	0.9	1.1
*PLATELETS*	150 - 400	241	213	208	170
*Temozolomide schedule*	5 days in 28	due 5 June	5-9 June 250mg
*Events and incidents*		before hospital discharge - tribute to rest?	also reflects wisdom of Dr Wheeler's dosing, timing.		Day 14 of Temodal cycle; compare 27 March

2: Anti- seizure: Dilantin (phenytoin); then adding Epilim (sodium valproate) after major, temporarily disabling, seizure episode.

Normal Range

22/11/00

11/12/00

03/01/01

20/02/01

13/03/01

09/04/01

10/04/01

14/04/01

17/04/01

24/04/01

02/05/01

s. Dilantin

40 - 80

Notes

See dex reduction schedule, Dilantin reduced 28 Feb..

After Dilantin dose reduction.

Considered caused by virus/ antibiotic; probably cause of seizure.

Recovery achieved with 50mg increase in dose.

After extra 100mg, after vomiting dose

More weekly checking, Tuesdays

Excellent, lookng stable, think we keep it up here!

Drop to 250mg + 200mg, check next week

	Therapeutic Range	09/05/01	17/05/01	22/05/01	25/05/01	27/05/01	28/05/01	30/05/01	05/06/01	12/06/01	19/06/01
*s. phenytoin (Dilantin)*	40 - 80	62	49	57	18	25	23	38	52	53	55
*Dilantin notes*		Continue with 225mg twice daily	Lift to 250 + 225 daily; started 21/05	Therapeutic serum level clearly not preventing seizure (note evidence of trend on 9 April, mild seizure at 42 - but here is major seizure, not self-resolving, at mid-'safe' range..	Hospital doctor's failure to compensate IV for unconscious patient's inability to take oral doses. Three unnecessary seizures. Supplementary 400mg.		Dose lifted to 500mg a day from 400mg		On Dr Reid's advice, hospital dosing daily @ 500mg altered to 250mg twice daily on 4 June - keep this dose for another week.
*s. valproate (Epilim)*	350-700				214	314	285	310	323	231	178
*Epilim notes*	But this is not a clearly defined level - see notes below			commenced after hospital admission and use of clonazepam IV to stop seizures which Dilantin was not preventing.	dose elevated to 800mg bd				Nice sort of stability? Maintain @ 800mg twice daily.		For review with Dr Wheeler next week.

3: Medications and supplements

Sodium valproate (Epilim)	anti-seizure	Commenced to supplement Dilantin, after major seizure episodes beginning on 22 May. Commenced at 200mg twice daily, raised to 800mg twice daily on 25 May. Stability in serum level appeared in place on 5 June, less clear on 19 June. Safe dose is level at which seizure is avoided. In epilepsy, testing is mainly to ensure continued dosing, as effect is good enough to encourage some people to stop taking their tablets.
Phenytoin (Dilantin)	anti-seizure	250mg twice daily, long term. Reduced to 250mg mornings + 200mg evenings from 28 February, in step with reduction in dexamethasone dose. Serum level remained at 60 after 2 weeks on lowered dose.. Many interactions and influences. See events of 9 April 2001, chart above + diary. Returned dose to 250 + 250 from 9 April 2001. See new dose from 2 May. Complex balancing continues after dex wean. Continuing at 225 + 225 mg daily from 9 May, up a bit from 21 May. Dose dropped in hospital to 200mg x 2 daily, with addition of Epilim (sodium valproate), but some doses missed, see table. By 5 June, re-securing safe level, maybe stable serum levels.
Dexamethasone	anti-inflammatory, anti-oedema (dose reduction schedule at right avoids clash between dose change and temozolomide doses 14-18 Feb and 14-18 March)	4mg twice daily, from 13 Nov 00 to 4 Feb 01 2mg once daily from 5 Feb 01 to 27 Feb 01 1.5mg daily from 28 Feb 01 to 6 March 01 1mg daily from 7 March 01 to 27 March 01 0.5mg daily from 28 March to 10 April 01 (this dose is below normal human daily production of corticosteroids and 'adrenal insufficiency' symptoms are more likely, until adrenals restore endogenous production.) 0.5mg every other day 10 April to 24 April - intermittent dose to shock adrenals to life. After headaches, etc. single 0.5mg tablet on 29 April provided relief from pain for days. No headaches, no further dex at 21 May; transition helped by taking T3 [triiodothyronine] 5mcg qid; also progesterone in vitamin E at night from this source. Some symptoms suggestive of possible modest intracranial pressure increased after leaving hospital 30 May after seizure events - extra 0.5mg 1 June to be sure to minimise any problem with oedema before temozolomide round 6 - death of tumour cells (which temozolomide should procure) also causes some inflammation, oedema, pressure, notably days 3 to 8 or so...
Zantac	to avoid stomach problems with dexamethasone	150mg twice daily, reduced to once daily from 5 February, reduced to zero 28 March, watch for stomach twitches, but end of H2 blocker should lift liver metabolism a bit, good in itself, also some balance to drop drop in dex dose. Nil since end of dexamethasone.
Thalidomide	antiangiogenic agent, see discussion by Dr Wheeler here.	200mg at bedtime, since 21/11/00; then 100mg since 12 February 2001
Temozolomide	brain tumour cytotoxin -on the value of combined temozolomide-thalidomide see here.	350mg/5days in 28 - cycle schedule in blood count table above. Reduced to 290mg but not started - blood count - on 9 April, then 270mg then 250mg to start round 5 on 7 May.
Zofran	to deal with nausea symptoms of temozolomide	4mg half hour before temozolomide; this dose needing increase with end of dexamethasone, which also has anti-nausea value.
Coloxyl 120	to deal with constipation from thalidomide and Zofran	2 x 120mg at bedtime; more, also Coloxyl + Senna during temozolomide course, as required.
Claratyne	antihistamine, particularly to avoid sneezing	daily
........	*Chinese herbal remedies*	- all Chinese herbs to be one hour from Western medicines
Chinese herbal A	anti-tumour, anti-inflammatory, anti-oedema	- alternate A and B, one of each, each week
Chinese herbal B	adjunct to chemotherapy	- boil and simmer each, several times, three or more teas to drink
Chinese herbal C	energy	weekly or bi-weekly
	prescriptions for these herbals can be seen here
.......	*Supplements*
Vitamin A	antioxidant, antiangiogenesis, potentiate dexamethasone [also]	5000iu daily
Vitamin D	various benefits, including counter osteoporosis effects of dexamethasone.	200iu daily [hard to find bigger dose, come in A + D capsule. Overdose area reported to be above 25,000 iu. in submarines, main source is sunlight (U.V.)on cholesterol [under skin].
Berocca [1000mg C +B]	antioxidant	one daily
Vitamin C	antioxidant, assist against constipation	>10 gms, titrated to bowel tolerance - calcium salts must be two hours away from Dilantin
Vitamin E	antioxidant, sustain vitamin A, repair radiotherapy damage, antitumour	1000iu daily orally, at least a capsule also to skin, diluted to assist spread with a little olive oil
Milk Thistle (Silybum marianum)	Strengthen liver and more -also this	2 tabs each 8gms daily