Canberra, Australia; martindaholder(at)mailme(dot)com(dot)au
1951 / Class of 2000 / Type: MGUS to IgG-Kappa within 3 mo. / Thal-Dex / Remission / Updated: 1/09
I grew up in Canberra - the "bush capital" of Australia. Canberra seems to be a locus for a statistically anomalous high incidence of Myeloma in Australia. Prior to diagnosis I enjoyed enviable good health and physical fitness. I worked out regularly I the gym and was in better shape than most Aussie males my age. In June 1999 I did a day hike in the mountains with the local Scout troop and even though I was the eldest leader I was able to keep up with the 14- and 15-year-olds, leaving younger leaders and scouts to eat our dust.
I was diagnosed with MGUS at the end of June 1999 following blood tests for a swollen lymph duct in the armpit. By September 1999 I had compression fractures in lumbar spine with associated renal failure, consequential blood pathology revealing that the disease had progressed from indolent to incandescent within two months. IgG was 54. I was almost comatose when I was taken by ambulance to hospital for admission. I woke up with a central line (cannula implanted through the chest wall just below the collar bone) and tubes running every which way.
My treatment is supervised by a haematologist/oncologist in Canberra hospital. My treatment began in hospital and continued monthly with nine courses of VAD with Aredia. During this time I returned to work on a part time basis (although I was taking the week after the chemo away from work altogether to avoid opportunistic infections). After a short course of radiation treatment for a focus of Myeloma in two vertebrae I had Aphaeresis to harvest bone marrow stem cells after ten months of treatment (August 2000). The bone pain from the GCSF was pretty intense but manageable.
An autologous bone marrow transplant in February 2001 went very well and I made close to a record recovery with discharge after just 13 days (Canberra hospital record is 12 days). I had no side effects or infections during the time the BMT re-established. However, I had a brief bout of pneumocystosis in July/August 2001 requiring limited hospitalisation, which has brought about a change in the local protocol to maintain a regimen of high dose antibiotics for six months after a BMT.
From the most recent consultation with the oncologist, the diagnosis is achievement of a stable plateau phase. Latest blood pathology results are as good as can be expected in the circumstances: WCC = 2.6, Hb = 121, Total Neutrophils = 0.99, Lymphocytes = 1.09, IgG = 25.0, Beta2MG = 3.1.
I have been very fortunate to miss most of the side effects from treatment and those have been minor. VAD induced peripheral neuropathy in both hands and feet, though it has since retreated to a residual and almost imperceptible vague tingling in the extremities of the fingers. Treatment continues with monthly Aredia, twice weekly Bactrim (as prophylaxis antibiotic) and thrice weekly Interferon (currently 2.4 million units).
Since the BMT I have returned to work full time. The only remaining side effects are fatigue at the end of the day and some discomfort in my back on the day following the Interferon. I have excellent support from the social work department of the Canberra Hospital and from my employers, the National Health and Medical Research Council in the Commonwealth Department of Health and Ageing. The disease has induced some life-style changes such as giving up gardening and forsaking the gym. I eat heartily and often just trying to maintain a respectable weight.
A relative (my sister's father-in-law) also has MM and was in the same ward at the same time I was admitted (he was having his BMT). Certainly, shared experiences make understanding the disease and treatment much easier (it is just a bit harder on the families when more than one member is affected at the same time with the same disease). I consider my determination to be as fully informed about the disease and my treatment and to be vigorous in consulting with the oncologist (the often touted 'positive attitude) has been a significant help in successfully overcoming MM.
November, 2005: It is three years since I wrote about my experiences with MM (August ’02). Since then my encounter with this disease has been thankfully uneventful. Each consultation with the oncologist confirms a residual but stable presence. My oncologist calls it a stable plateau; as close to remission as you can get.
During August 2005 I had endured some discomfort from a disc bulge, which has induced sciatica, and an incident of shingles, both on the same site within the spine. While both have been a little debilitating, they have been endurable.
Then in October, 2005, another compression fracture at the same site as the disc bulge and sciatica (L2) was diagnosed. There was more pain and some muscle spasms associated with this which effectively confined me to bed. Fortunately a very good neurologist has prescribed a medication regime resulting in a return to virtual normal mobility.
Due to this latest incident I have anticipated my early retirement by four months. However, with continued relative good health I have resumed light gardening, tinkering in the workshop and I am looking forward to travel (including overseas) during my retirement.
December, 2005: I have been becoming progressively more debilitated over the last couple of weeks with loss of motor control of the calves and feet (lifting legs) so I saw a neurologist last Thursday evening (24 November) and he arranged an MRI for first thing Friday morning.
He got results on Friday afternoon and rang at 5.30pm to ask me to go to A&E straight away (Do not pass Go do not collect $200) and they would be waiting with neurology surgery and radiation to make a decision. I was admitted at 11.30pm Friday evening.
They opened up radiation just for li'l ol' me on Saturday and Sunday morning. Dexamethasone is great for reducing inflammation. Will have total of ten ray treatments ending early next week. 15th of December we have a consultation with Michael P and will discuss thalidomide and Dex for next year but first we'll need to see the progress from the radiation.
In short, the 'disc bulge' was actually a Myeloma mass (of immature Myeloma cells which is why it was not picked up on bloods) which had entered the spinal column and was pressing on the nerves leaving the base of the spinal cord (and just impinging on the cord too). All the preliminary diagnoses kept pointing us to a disc bulge since the symptomatic relief was typical.
However all is sorted out now and I am very grateful for the alacrity with which the system responded and I am now back at home in time for a family celebration of my wife's 50th birthday.
February, 2006: I saw the oncologist earlier this month (February) and he had good news since the latest blood test results show a dramatic improvement. We put this down to the effects of Thalidomide. Since I also walked into his rooms albeit with minimal assistance of a walking stick (last month I used a walking frame) he was also delighted with my increased mobility and appearance.
The main marker – the level of IgG immunoglobulin has dropped from 30.8 at the end of November last year to 16.3. It hasn’t been this low since way back in 2000. The ‘beta squared immunoglobulin’ count has dropped from 4.6 to 2.2 which is almost the level of a normal person. The level of paraprotein has also dropped from 25 to 13. Otherwise the blood counts are either normal or close to normal (haemoglobin, white blood cells and red blood cells are down a bit. Neutrophils although still down have recovered since the end of November.)
I have achieved this with relatively mild side effects from the Thalidomide – infrequent fatigue and no swollen feet, a little nerve sensation (tingling) in the fingers and feet (mainly lingering on from the earlier chemo treatment in 1999 and 2000) and a vague taste on the side of the tongue. I will now try to cut back on some of the pain killers (halve the high dose of paracetamol to the normal adult dose etc).
So in his words we will ‘continue with this for some time’ and he didn’t mention a second transplant which he had mentioned last month.
January, 2009: "To look at these blood counts, you'd never know you had myeloma." said my oncologist in early December 2008. Since February 2006 I have continued on a regime of thalidomide with Dexamethasone. In January 2008 the dose for thalidomide was reduced to 50mg daily. Over the period the dosage for Dex has continually been reduced, as well. It is currently 8mg once a week.
The most noticeable side effect from the thalidomide is the neurothesia affecting the lower limbs and strangely I can sometimes feel it on my scalp. I take the Dex on Fridays and I notice it kick in mid afternoon when my voice becomes husky. During Saturday I have hot and cold 'flushes' and wakefulness during Friday and Saturday nights. Otherwise there have been no effects reducing mobility. The continuing Zometa treatment has kept any further bone damage at bay it seems.
It is my intention to set new records for 'remission' (nine years is a good start) and enjoy as normal a life as I can, while I can.
The results are that I am enjoying an active retirement, supervising major garden earthworks but following up with my handyman contributions with a wheelbarrow. I now have a well established vegetable garden and several fruit trees. The oncologist has reminded me to take care when working with soil and wear a mask to avoid soil pathogens including legionnaire's disease. I also continue my involvement with Scouts. I am looking towards expanding my skills with working in wood and sitting in on some university lectures. I want to 'fill-in the gaps' of my education - study a bit of history is one area.
While I acknowledge I have a compromised immunity system I have not let that stop overseas travel. In May 2008 we had a fortnight in Japan and we are planning a European trip this coming year. I vicariously enjoy other peoples' trips to more adventurous places with risky health environments, such as Vietnam and China, and delight in viewing their pictures and recounting the experiences.
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