Early in 2005 Yvonne was confirmed as having multiple myeloma (one of the leukaemias). Multiple myeloma (or “myeloma” as it is now more commonly called), we learned, is a fatal disease and we were told that average life expectancy then was about six years – improved treatments introduced in the intervening almost seven years has increased survival times)
Following a year of treatment which included chemotherapy, radiation and a stem cell transplant, she went into a period of feeling relatively “healthy” for two years. In the latter part of this period, we were aware that her paraproteins (the tumour marker cells) had started to build again, signalling that the myeloma was once more asserting itself. In December 2007, Yvonne started having back pain again. Further investigation showed quite major bone degeneration plus myeloma tumour masses in her lumbar vertebrae, along with consequential vertebral fractures. Over the year of 2008 bone involvement (tumours) spread to include her hips and shoulders.
During 2008, she had two periods of radiation therapy, the first in January and the second in late October. This treatment was essentially to knock out myeloma “hot spots” and to relieve pain. For most of the year Yvonne was able to control her pain with relatively mild pain killers, though she has been fairly limited in what she was able to physically do. Then quite suddenly in November 2008 her pain level increased dramatically and her pain control regime had to be increased. Her radiation oncologist informed her that her tumours had spread further, but that further irradiation was not appropriate at that time. Toward the end of December 2008 she commenced a regime of oral treatment based on thalidomide and corticosteroids.
Following Yvonne’s mid-August 2009 specialist visit it was decided in view of her good test results to give her a “treatment holiday”. This was in the light of her having real problems with bouts of abdominal pain and nausea/vomiting, coupled with tingling numbness in her feet and legs and to a lesser extent, in her hands. Her mid-March 2010 specialist consultation revealed her test/pathology results were very good.
When Yvonne visited her specialist haematologist/oncologist in mid-May 2010 she had recently experienced a major escalation of pain. This led to a CT scan and a referral to her radiation oncologist. The CT scan showed a couple of compression fractures - we didn’t know whether these were new or the same ones she’d had before - and “multiple lytic lesions throughout the lumbar spine” (these “lytic lesions” are areas where the bone has been dissolved away by myeloma tumour) as well as “notable lesions” within the lower lumbar vertebrae and the sacrum. The radiation oncologist described Yvonne’s spine as having “multiple holes” in it and ordered up two weeks of daily radiation therapy. We were told after this round of treatment that her lower spine had had pretty much all the radiation they can safely give it and she had reached the end of that particular road.
In July/August 2010 we had six and a bit weeks away in the caravan and Yvonne was reasonably well. Then just two days after her 19 August 2010 specialist consultation she suffered a spontaneous rib fracture. A subsequent MRI scan revealed that her myeloma had affected her rib and it was this that had weakened the bone and caused the fracture. She had radiation to the rib area, but went through an increase in “not very well” days.
In the first week of October 2010, her upper lumbar region spinal column pain level just suddenly increased considerably. The pain was very restricting and she really could not do anything at all anymore. An early appointment was arranged for her to see her haematologist/oncologist specialist. It was clear that something new had just occurred in Yvonne’s spinal column. Though no one was saying just what, it seemed to us that she had had either another vertebral fracture or a vertebral collapse. As a holding exercise, she was put on another round of chemotherapy (this time with the newly PBS listed oral chemotherapy drug lenalidimide - trade name Revlimid). And her relief from pain was greatly increased – she started receiving visits from the local palliative care home support service (this was, we stress, a positive development and did not unduly foreshadow an early exit) and they were wonderful in helping establish an effective pain control regimen – so much so that at mid-January 2012 she has pretty much been pain free for about 15 months.
There was a further development – about mid-year 2011, as part of an investigation of a sore spot on the right side of her abdominal cavity, her constant low grade nausea and her periodic vomiting episodes, Yvonne underwent a CT scan that took in her pancreas. This showed what appeared to be a number of small tumours in the pancreas. Further scans and specialist consultations have convinced us that they are unlikely to prove malignant and are of no great significance in her overall health situation, though we were given to understand that they might (or might not) be a factor in her ongoing vomiting episodes. Just to pick up on the abovementioned low grade nausea, there was a marvellous breakthrough, again brought about by the palliative care people. They suggested that she try a good old fashioned drug, the anti-allergen/sedative phenergan. This eliminated the feeling of nausea, though it has increased her sleepiness.
Following a further MRI scan of her pancreatic region Yvonne has just (mid-November 2011) had a consultation with her gastro-enterologist. She was told she has chronic pancreatitis. This would account for her recurring “sickie attacks” (vomiting episodes). The gastro-enterologist puts this down to her myeloma and the treatments she has received. In a moment reminiscent of Kevin Rudd, she asked “and what are we going to do about it?” and immediately provided the answer, “nothing”. Yvonne has been prescribed an ongoing low fat, alcohol free, diet in an attempt to minimise “sickies”.
Where does this leave us mid-January 2012? Well, after twelve months Yvonne is still on the oral chemotherapy drug Revlimid and it seems to us that she is likely to remain on it for as long as it continues to hold her myeloma in check. On it her blood test results have greatly improved, her tumour markers are way down and everything else looks pretty fine. Her haematologist/oncologist has described her health as “very stable”. She cannot stand or walk very much (we use a wheel chair when more than a little standing or walking would otherwise be involved) and she needs lots of “snoozes”, but mostly she feels pretty good and is in good spirits. Now isn't that great?
We continue to “count our blessings”, which are numerous. Though myeloma remains at this time a fatal condition (as indeed is life itself), we are buoyed by the “thoughts and prayers” of so many. We know that we have just so much to be thankful for, and we are. Life is surely good.