The Trial and its Side Effects

Posted on May 15, 2015 Updated on May 15, 2015

I’ve already written that I’m part of a Myeloma trial. What does this mean though? Depending on a persons age/fitness levels you will be usually offered one of two treatment paths. Younger/fitter patients may be offered an Intensive treatment pathway and older or less fit patients a Non-Intensive treatment pathway. I certainly don’t consider myself to be fit but I am younger than most Myeloma patients so was offered an Intensive treatment pathway. Not everyone will be given the same options or the same medication. I’ve met two myeloma patients in hospital on completely different pathways and who where quite frankly going through hell in different ways but they where both at least twice my age. Its important to understand that the information given here is my pathway and details of my current experiences. It really will be different for everyone.

The trail seeks to establish which of the currently known to work chemotherapies will become the new “gold standard” or most effective treatment path going forward. Its a randomised selection of treatments. Once you agree to go on the trial your name is effectively put into a computer which pretends to be a bingo machine and selects which drugs you will be offered.

I have been allocated to C (Carfilzomib) C (Cyclophosphamide) R (Revlimid) D (Dexamethasone) which will be followed by a high dose chemotherapy with autoglogous stem cell procedure. This basically means that they will harvest my stem cells, use chemotherapy to kill of my bone marrow and then use the stem cells to regrow. This will typically require hospitalisation of 4-6 weeks.

The cancer is non curable (at present) but successful execution of the trial will mean a longer than usual life expectancy (10-15 years) being expected and when the the cancer starts to appear again they will have a known treatment path that works or will move onto whatever is the new gold standard and start again. Of course in 10-15 years they may just be zapping people with Star Trek type scanners as things are moving so quickly in this field of research.

A current cycle for me is over 4 weeks. Three weeks of treatment and a week of rest. When my IV treatments are due this typically involves a trip to hospital for bloods and two consecutive trips to hospital for IV treatment. So 3 days per week for three weeks out of the four. A visit on average will last 2.5 – 3 hours

More on the Drugs

Carfilzomib – This is an intravenous treatment administered in hospital with a blood test taken the day prior to the appointment.
Cyclophosphamide – Tablets (500mg) taken once weekly for 2 weeks on Days 1&8 in the morning
Revlimid – Tablets (25mg) taken daily in the morning for 21 days
Dexamethasone – Steroid Tablets (should be 40mg but have been reduced to 20mg for me – Can cause mood swings) – days 1-4, 8-9, 15-16

In addition to the cancer treatment I am required to take the following meds. Many of them are preventative meds and some are taken because of my mobility/pain problems. The frequency of administration varies depending on the stage of the cycle but some mornings can see a breakfast of 20+ tablets.

Dalteparin – A daily injection to the stomach (self administered) at around 6 in the evening to prevent blood clots
Lanzoprazole – For stomach cover/reflux etc. Taken daily in the morning
MST – A high dose slow release morphine taken morning and night. Currently 60mg
Metoclopramide – Anti sickness taken 3 times per day as required
Laxatives – As required. Currently use Movocol and Senna. The morphine plays havoc with the bowels so this stuff is vital
Allopurinol – Only taken during the first cycle.One per day to protect the kidneys.
Zometa – administered in hospital by IV every 4-6 weeks long term
Amitriptyline – 10mg pain relief tablet taken with my MST in the evening before bed
Benzydamine – Mouth wash for mouth pain taken twice daily as required
Chlorhexidine – Antiseptic oral mouth rinse. 15 ml every three hours as required
Colecalciferol – Vitamin Supplement. One capsule three times per week.
Morphine – A liquid morphine 10ml hourly as required

I’m no longer allowed to take paracetamol (this can mask temperatures) or ibuprofen (this can cause liver and kidney damage). During treatment you are required to monitor your temperatures closely. Any body temperature rise above 38 degrees Celsius will require contact with the hospital as you will be particularly at risk to infections. With an immune system which is highly reduced in its effectiveness the slightest bug or something more serious like man flu could quickly turn into a sceptic episode. Also during treatment your kidneys are working on overdrive so its vital to remain hydrated. 3 litres of fluids per day is the minimum recommended intake. The levels of drugs being administered can also affect Liver function. This happened to me during cycle one and resulted in treatment being held for 1 week to get back to safe levels and then bloods being closely watched while treatment was gradually brought back on-line.

Side Effects

Again side effects will be subject to the individual. When you are first signed onto your treatment pathway you will be notified of all possible side effects (not covered here) and they will always give you the worst possible scenario. I have to say that I have been absolutely blessed with me having experienced very few and very mild side effects to my cancer treatment. I’ve listed my most common ones below. My main issues are related to the bone pain. A visit recently to a spinal consultant confirmed that the Myeloma has caused softening of the bones in my spine which is causing them to crumble and gradually collapse. They can treat this but have suggested that as I have so much going on at the moment I wait at least 6 months (with the option of going back any time prior to this should there be a sudden increase in deterioration). This suits me fine.

Hair loss – I haven’t suffered this yet but am told it will happen. To be fair my hair is already as far gone as my first toilet experience so if that’s all I have to worry about then that’s fine. I understand though for some people and particularly for women this may be a much bigger issue. Odd thing is that although my hair hasn’t come out completely my beard does moult terribly so I just keep it trimmed short. I’ll hang onto it as long as possible though.
Fatigue – I do suffer extreme tiredness, particularly when chemotherapy is being administered.
Perspiration– Two of the drugs Cyclophosphamide and Dexamethasone seem to cause me to sweat terribly. When I’m not taking these I’m fine.
Taste – My taste buds are shot to pieces. At times my mouth can be quite painful. Carfilzomib in particular leaves me feeling like paint has been dripped into my mouth but it usually only lasts a few hours. It has left me searching for foods I can actually taste.
Mood Swings – I can become short tempered very quickly. My poor wife will vouch for this although she’d probably argue that I’ve always been like this. During Cycle 1 I was taking a higher dose of the steroid Dexamethasone and this appeared to cause severe mood swings. I’ve honestly never felt so depressed and became very emotional at the drop of a hat. I was in a very dark place in the beginning with my mind at times offering some very extreme solutions to my situation but part of this may have been due to the shock of the actual diagnosis of cancer. I can’t underestimate how important it is to discuss these emotions with your nearest and dearest or with your health professionals so that you can get the counselling/support you require or that your meds can be adjusted as required.
Bone pain – For me this has been the biggie. Some of this may be due to early arthritic deterioration. My consultant sees some bone deterioration but no holes or lesions in my bones although my spinal consultant does disagree and has reviewed early and later x-rays and is quite confident that although there is earlier deterioration, that the majority is due to the myeloma softening the bones. The bone pain accounts for a lot of my medication, my needs for specialist equipment and a number of body scans. I’ve had 2 MRI scans with a third planned in June, a Full body skeletal x-ray, Lower lumber and chest x-rays and a CT scan
Liver function – as stated earlier I had problems with liver function most probably caused by the amount of drugs my body was asking it to filter. Levels are still not normal but are safe enough to continue.
Temperature Spikes – These have initiated three hospital stays for me. Even the slightest cold can become a problem. During my last hospital stay it was discovered that I had developed Pleurisy (chest infection) and this caused severe chest pain not to dis-similar to having a heart attack which is initially what they thought might be happening.