Monday, 30 November 2009

Brain tumour ... symptom control .... finding what works!

As a nurse (albeit retired for 10 years now) I tend to think I'm slightly better informed about medications than Mrs Average, .... but is this a help when one is trying to cope with symptoms? Well I think it probably does! Any drug/medication that we take may have benefits but is likely to have possible unwanted side effects, so I have been considering my regime and options very seriously recently, because I want the best symptom control for the least 'collateral damage' from what has been prescribed for me.

MEDICATIONS I was already taking before they 'found' the brain tumour earlier this year

Bendrofluazide 2.5mg daily ............ a diuretic which was prescribed to treat hypertension (raised blood pressure) diagnosed about 15 years ago, and which became apparent quite suddenly and dramatically after a hideous headache that lasted about 3 days. B/P at the time was 185/150(increased from my usual reading of around 110/60).

Spironolactone 25mg - 100 mg daily ......... this was added in about 4 years ago when I started to get chronic swelling of my feet and ankles, and fluctuations in weight (due to fluid retention) of up to 4 kg from day to day. Again all blood tests came back within normal range and no explanation for the fluid retention was found.

Looking back I do wonder whether Feckit affects the functioning of my pituitary gland in some way (seeing as it is so VERY close to it) and messes with my ADH (anti-diuretic hormone/Vasopressin) function.

ADDITIONAL MEDICATIONS prescribed SINCE the diagnosis/treatment

Most of my symptoms (headache, nausea, insomnia) due to raised intra-cranial pressure and this needs to be controlled in order to prevent further damage to brain tissue ......

"The vicious cycle of pressure on the brain includes these things:
  • the tumour itself is a 'mass' exerting pressure, in the confined intra-cranial space
  • the tumour, as it grows, produces considerable quantities of fluid, lactate
  • there is pressure on healthy tissues which are then likely to swell and weep fluid (producing oedema (Americans say edema), causing more pressure
  • neurosurgery, opening the skull and interfering variously, can anger and inflame healthy tissue
  • chemotherapy is supposed to kill tumour cells (of course) and the death of cells causes inflammation
  • radiotherapy, same as chemotherapy, kills cells and there is inflammation," (Oz Brain Tumour Site)
DEXAMETHASONE is an effective drug for reducing swelling in brain tissue and comes from a family of drugs called STEROIDS. The above extract is from an excellent article on Dexamethsone to be found on the Oz Brain Tumour site, which also explains:

"When a person presents with a brain tumour, the symptoms are not from the tumour itself, the tumour does not alter brain cells. The symptoms arise from the mass effect. Symptoms vary from person to person with exquisite differences because of the location of the mass effect and because of the brain's complexity and diversity of functions. If, over the course of disease, the location of the lesion remains the same, the symptoms may remain or grow from the initial symptoms experienced. There may be new symptoms if the mass effect becomes much greater or if there is a 'recurrence' of tumour in another location in the brain.

The use of dex thus becomes very important, to oppose symptoms, to prolong life and quality of life. In addition, consider the reality that as pressure builds, the impact on the brain is unlikely to be a simple graph line upwards, things break and there can be sudden deteriorations from which it may not be possible to recover.... so you take dex to avoid such catastrophic disease 'progression'.

It will be evident from the preceding paragraph that:
  • dex may relieve symptoms, if there has not been irretrievable damage
  • renewed symptoms call for consultation with a doctor about upping the dose of dex... it is possible that the symptoms may arise during the treatment cycle or just in variations of effectiveness of the dex day to day, so a brief boost in dose may be of value
  • or renewed symptoms may mean that tumour is growing again, needing both management with dex and investigation and treatment if possible
It follows that it is important for patient and carer to report any substantial change in symptoms, any new symptoms, to the treating doctor... being a doctor familiar with use of dex in brain tumour. Do not expect every GP to be familiar with that, or every doctor on hand at emergency."
Possible Adverse Effects of Dexamethasone include:

Increased appetite, weight gain
Disturbance of electrolyte balance
Increased calcium excretion
Delayed tissue repair/healing, increased risk of infection
Muscular atrophy
Increased blood glucose levels/development of diabetes mellitus
Glaucoma, Cataract
Peptic ulcer
Headache, convulsions
Euphoria, insomnia, mood swings, personality changes, severe depression

Head Notes - I am currently on my 3rd period of treatment with Dex and have been taking it for about 6 weeks at a dose of 2mg daily (equiv. to approx. 13mg Prednisone). This dose does not completely control my symptoms of headache and nausea but, as I am experiencing some side effects , I don't really want to have to take an increased dose unless absolutely necessary!

DOTHIEPIN (dosulepin) hydrochloride

Dothiepin is a tricyclic antidepressant, used for depression and anxiety. Its site of action is the central nervous system (CNS) although the mechanism by which it produces its antidepressant effect, as with all tricyclic antidepressants, is unknown. Dothiepin has also been found to be useful in some types of neuralgia and facial pain.

Abrupt withdrawal may produce headache, nausea, convulsions, irritability,excessive perspiration and possible thrombotic (clot forming) episodes.

Adverse Effects occur in about 30% of patients and may be severe enough to discontinue the medicine in 10%.

More Common Reactions

Drowsiness, dizziness, tremor, confusion, paraesthesia, alteration in ECG patterns, disorientation
Dry mouth, urinary retention, sweating
Hypotension, tachycardia, arrythmias, conduction defects, palpitations
Changes in libido
Nausea, vomiting, constipation
Blurred vision

Patients and their families should be alerted about the need to monitor for the emergence of anxiety, agitation, panic attacks, insomnia, irritability, hostility, impulsivity, akathisia (motor restlessness ranging from a feeling of inner disquiet, often localized in the muscles, to an inability to sit still or lie quietly), hypomania, mania. worsening of depression and suicidal thoughts. Such symptoms should be reported to the doctor, especially if severe, abrupt in onset, or were not part of the presenting symptoms.
Head Notes - I have been on 75mg Dothiepin for several months now, which was prescribed a) for depressive symptoms and b) for facial/head pain. It has controlled the shooting pains in my face and left ear really well but feelings of depression and anxiety are still there and I get pretty emotional at times!

PROMETHAZINE hydrochloride (Phenergan)

Promethazine, a phenothiazine derivative, is a long acting antihistamine with mild atropine-like anticholinergic effects*
and some antiserotonin (serotonin is a neurotransmitter) effects.

Promethazine has marked effects on the central nervous system (CNS) where it acts as an entiemetic, hypnotic, tranquilliser and a potentiator of anaesthetics, hynotics, sedatives and analgesics. It may enhance the sedative effects of CNS depressants including alcohol, barbiturates, opioid analgesics, sedatives, and other drugs. Interactions between promethazine and MAOI's and tricyclic antidepressants may prolong and intesify their anticholinergenic and CNS depressive effects.

*Anticholinergenic effects are caused by drugs blocking the action of a neurotransmitter called acetylcholine. Acetylcholine helps with memory, learning and concentration. It also helps control the functioning of heart, blood vessels, airways and organs of the urinary and digestive tracts. Drugs with anticholinergenic effects can disrupt the normal functioning of these organs.

CNS effects

CNS depressive effects: Sedation and impaired performance (impaired driving, incoordination, reduced motor skills, impaired information processing)
CNS stimulatory effects: Anxiety, hallucinations, appetite stimulation, muscle diskenesias, activation of epileptic foci

Common reactions include:
Dry mouth, epigastric distress, loss of appetite, nausea, vomiting, constipation, diarrhoea
Sedation, restlessness, dizziness, lassitude, incoordination, fatigue
Blurred vision

Less common reactions include:
Jaundice, tinnitus, insomnia, convulsive seizures, irregular respiration, tachycardia, bradycardia, contact dermatitis, urticaria, photosensitisation, pruritis, haematological changes

Head Notes - Following my visit to the Neurologist I was started on Promethazine with the aim of increasing my sleep time beyond 3 am and to contol the nausea during the night. I took the dose for two nights and had two wonderful nights sleep (the best for well over a year) BUT by the third day was feeling very restless, agitated and weepy. I felt that maybe I needed to talk things over with my GP which I did on Friday, and we decided to leave the Promethazine out and continue with Dex 2mg plus the Dothiepin 75mg. But I am to let him know immediately if symptoms get any worse and we can review the regime again.

So what is happening with regard to the effectiveness and side effects of my current regime?


Facial pains - gone (great!)
Headaches - come and go two or three times a day, and at night
Nausea - not much in daytime but comes on really badly about 3am every night
Depression/anxiety - still very up and down


Face and abdomen enlarging (Dex)
Increased appetite (Dex)
Weight gain ... not much yet but ...........
Blurred vision (Drs could find no neurological deficit on examination, - so ? Dothiepin)
Depression, agitation (? Dex, ? Dothiepin)

Well after all that ....... all I can be sure of is that partial control is better than none at all .... so I will just keep taking the tablets.

Friday, 27 November 2009

Month 9 since diagnosis!

Well its just about 9 months since Feckit was found lurking .... it's still causing trouble but hopefully is beginning it's death throes! This past week has been pretty full on and I am quite tired, but feel as if I have achieved quite a lot.

Last Friday I started a pastel painting that I had been thinking about doing for a couple of months. John went away on a 3 day golfing weekend so I was able to go bowling and paint unfettered by cooking meals, household chores, etc. I even spent much of my 'waking time' at night working on the new painting finishing it by Sunday evening.

As well as having bowls matches on Sunday, Tuesday and Wednesday, I tutored a beginners workshop on Thursday for our local art group. They were learning about using pastels and most were completely new to the subject. We had a great day and they produced some amazing pieces - well done!


Yesterday (Friday) was my follow-up appointment with the Neurologist, Dr H-T. I was not expecting much change out of it because (as a nurse) I know that I do not have any neurological deficits as yet, i.e. everything is working pretty much as normal! And I also know that there is very little that can be done symptom-wise except to 'keep taking the tablets', as the saying goes.

So, as expected, my neurological assessment was OK, and we got down to talking symptom control. Sleep deprivation being a big issue for me at the moment another drug has been added into my current regime to try to help with this ........ Promethazine (an antihistamine), which has sedating properties. The headaches, nausea and insomnia are due to the brain swelling after radiotherapy (well I hope that's correct and its NOT because Feckit is continuing to expand!) and Dr H-T will write to David my GP to explain where I am currently at and suggest other treatment options should I need them. He will see me again in six months.

Rightey-ho ....... done and dusted, then? Nope.
If I put on my nursey-hat there are several alarm bells ringing with regard to my current medication regime ........... but I really need time to think it through before I write more about that!

I can certainly feel another post coming on .....................

Tuesday, 24 November 2009

Month 8 .... worry beads are go!

Haven't posted on here for almost 3 weeks ..... mainly because I haven't felt like talking about Feckit, who is just being a pain in the butt. Despite the Dex (2mg daily) and despite the Dothiepin (Prothiaden in UK) the symptoms are about exactly the same as they were before the treatments. So I guess things have swollen up in there from the radiotherapy.

I see the Neurologist on Friday. Don't really know what he can do (other than give me another neurological assessment for any deficits!). And I don't want to increase the Dex dosage, but anticipate that this will be suggested. Having been back on it for a few weeks (albeit at half the dose I was on last time) I am now in that awful depressive state again where a kind word makes me cry buckets and I feel stressed out at the slightest thing.

So what am I doing about it?

Well, firstly I have had to acknowledge that I have been pretty stupid trying to be Mrs Wonderful and continuing to do everything as if nothing has happened or changed! Something very fundamental
has changed and, like it or not, I do not seem to have much in the way of reserves left ....
So I am taking/have taken some practical steps to ease the load, such as:

1. Resigning my role as Secretary on two committees as from end of this month.

2. Playing lots of bowls (this is a pastime which completely takes my mind off Feckit), BUT have requested not to captain any team in competitions as this is STRESSFUL in the extreme!

3. Making more time for my art ....... as after a long, long spell of feeling 'ART-less' I am at last beginning to feel a real need to keep painting again. And it is totally absorbing when I do.

4. Allowing myself the luxury of taking a nap if and when I feel like one, .......... after all, who can stay sane on only 4 or 5 hours sleep a night for months on end?

I know that I look amazingly healthy and well in spite of it all, but steroids do that, okay? So stop telling me. I shouldn't have to justify myself.

Really, I shouldn't.

Sunday, 8 November 2009

Month 8 ..... house, garden and head!

Our house in when we bought it in 2005

Our house in 2007

Our garden was re-landscaped with a digger about 4 years ago and it is really starting to take shape - so today I remembered to take some more photos for our records. John is still working on the outside of the house (may it be finished one day!) and is currently putting in more steps and a raised vegetable garden behind the new enclosed deck at the side of the house.

Our house and garden now in 2009 -


Having got to the end of another 2 weeks on Dex I found that I was still feeling rotten quite a lot of the time (despite finding that I felt a lot better when I first went back on it!). So I contacted LK again who advised me to continue with it for the time being. Same dose of 2mg a day. Sleeping is not really any better ... I wake about 3am and pretty well stay that way ... I find the best thing to do is to get up and do some painting or play on the computer. It helps the headache and nausea to be upright.

Weight is still OK, not increasing ...... I think this is due to me playing bowls 3 or 4 times a week!l But my face is just beginning to get a bit rounder but HEY! - Jumbo's can be cute!