Treatment Experiences

Hi everybody, rather than try and separate my individual treatment protocols, I thought it would be better to outline my bumpy ride with MM. I live in Auckland, New Zealand, and am somewhat restricted as to what treatment protocols are available to me (we have a National Health Service that provides free health care to the population, with obvious limitations) - I thought it relevant to mention this as some of you will find some aspects of my treatment old fashioned or Ôless than cutting edge'.

I was diagnosed in 1996 with stage I, or smouldering multiple myeloma. Like most of us I had never heard of it before, and at first It didn't really concern me. I was lucky, and apart from regular blood tests I required no treatment for three years. I had the usual winter flu, coughs colds and a tendency toward pneumonia. I have some lung scarring from that.

In late 1999 I developed a bad pneumonia which kept me in bed all over the millennium celebrations and delayed a significant work project. I was allowed back to work with a drug combination known as C-WAP (cyclophosphamide weekly, with alternate day prednisone. Some people call cyclo ÔCytoxan' but this is a brand name only available in the US). This was very successful for me and I recovered fully after a three month course.

This was, of course a sudden change from smouldering, stage I myeloma to an aggressive, stage III MM with a paraprotein level of nearly 95g/L. After my work commitment finished in April 2000, I started induction therapy of six courses of VAD which brought my paraprotein down to

28g/L and marrow infiltration down to 5-10%. I commenced stem cell harvesting in September 2000 and successfully harvested 4.5M stem cells (4.52 x 10*6/kg) in just one sitting, with 98% viability. I went back on to three months of cyclo due to work commitments, and in January 2001 I started my SCT in the Bone Marrow Transplant Unit at Auckland Hospital.

I had a normal high dose Melphalan therapy followed by re-infusion two days later. At first everything went well, and I had daily blood tests to determine the degree of neutropoenia and time to re-engraftment. At about Day 8 I started to feel quite ill and by Day 12 was back in the BMTU with full neutropoenia. Unfortunately when I had the high dose melphalan I didn't know about mucositis or the use of ice chips and vitamin E capsules. I had mucositis from one end to the other and was on a morphine pump for ten days. I lost 12 kilos through not being able to eat, and the recovery of my neutrophils went largely unnoticed, at least by me! However things did slowly start to get better, the mucositis cleared up and I started to put weight on again.

Perhaps because of my previous pneumonia history, I developed a respiratory infection and was given both antibiotics and antivirals. All that hard won weight started to slip away and I felt like I had taken several steps backwards. It took some time for these infections to clear up and I experienced the joy of a bronchoscopy :( but eventually I was allowed home some ten weeks after SCT. Recovery went much better at home and by May of that year I was able to start work again.

Three months after the SCT I had a marrow biopsy with a rather depressing result; I still had the same 10% marrow infiltration I had before SCT. We decided to start Interferon A treatment as a maintenance therapy, and I continued with this for 18 months. There was no disease progression during that time and I felt fine; good energy levels, very stable monthly blood tests and really not many problems from the Interferon. In November 2002 we decided to stop the IfN treatment and for six months I was treatment free. In April 2002 I developed a sore ankle and quickly a very painful shin. The ankle felt like an inflamed achilles tendon, but it didn't get any better and the shin felt like I had been kicked - very painful! X-rays showed lytic lesions and I was given radiation to both areas. At the same time we started a protocol of thal/dex. Things quickly stabilised and for a while I had no problems from first 50mg and then 100mg of thal, with 4 x 40mg dex. but as soon as I felt the beginnings of peripheral neuropathy I cut the thal down to 50mg.

After six months of thal with high dose dex I had a bad steroid crash. Muscle loss, tiredness, lack of appetite and it took three weeks of being dex free before I was able to function again.

I simply didn't want to get out of bed. During that time I had severe constipation and found out that fibre based laxatives can sometimes make things worse. I won't go into the details, but it was ugly...

I persevered with 50mg thal along with prednisone for a while, but by then the side effects of thal were getting worse and in June 2004 I went back to C-WAP following a diagnosis of steroid induced diabetes in May. For a year I balanced a reducing dose of prednisone with insulin injections, metformin tablets, blood glucose testing, diabetes and MM clinic appointments and work. However by May of 2005 I was only taking 500mg of cyclophosphamide once a week and with the removal of the last milligram of prednisone, I became steroid and diabetes free!

The last year has been quite stable for me, although I do have some disease progression and more lytic lesions. The cyclo has served me well, but I had to add 20mg of dex once a week in June 2006. So far the diabetes is non-existent and after two more rounds of radiation I am waiting for the lesion pain to resolve. I had a bad anaemia in early July Ô06 which require me to have two units of blood. I see my Haematologist and mate of ten years, Tim in August. We watch and wait with monthly bloods - I'm due for one this week and will be interested to see how my haemoglobin is going.

One thing I have to mention is that this journey has made me and lost me friends. I have made some wonderful friends in the haematology department at Auckland, including Tim who is a very forward looking doctor who makes the most of limited resources available to him. I couldn't have made the journey without him and I can never thank him enough for his help, humour and willingness to listen.

I have lost a very dear personal friend who was a twelve year survivor of Acute Myeloid Leukaemia and who developed MM. Felicity lived in the same street as us and died just a year ago. I have also lost list friends who have lost their individual battles with the beast; I can't forget them, but life has to go on.

I have made some very good list friends, and I enjoy reading the lists even after all this time. I have made some wonderful personal friends through the lists that mean an awful lot to me. I don't think I could have weathered the last year or so without their friendship, help, professional guidance and humour. A special thanks to Beth and Nancy :)

Here's to another ten years.

Chris Hollyer, July 2006