I’ll start the new round of experiences of diagnosis.

Initiating the Journey

In March 2018, I went to donate blood. I remember watching the sample sinking slowly in the Anaemia test tube; it seemed odd. I was told that I was anaemic and was given a printed sheet to take to my GP. A week or so later, the GP said I’d got hypothyroidism, vitamin B12 deficiency, possible coeliac disease, iron deficiency, and high cholesterol. My results were odd; she wanted me to have another CBC test, electrophoresis, “although she was sure I’d hear nothing more about this”. I searched the internet to see what such an anaemia disease was for and found it was looking for markers of cancer I’d never heard of: multiple myeloma.

An incurable cancer with a prognosis of just a few years. I felt pretty well. I’d been a bit lazy, and caring for elderly parents with dementia had been stressful. But I certainly wasn’t ill. When I had a phone call from the GP surgery two days later asking me to go in on a Friday afternoon, I immediately knew what I’d got. And I had read enough to ask the GP specific questions for specific results to know there was a little possibility I didn’t have myeloma, and active myeloma at that.

I asked the GP about life expectancy, given I felt so well. I was told that he’d known people who’d gone from being well to dead in 3 months. In hindsight, I think he said it as a way of saying that we never know how long we’ll live. But I took it as meaning I could be dead in 3 months. My husband was away all weekend. I was paralyzed with shock. I was trying to plan what I needed to sort out in my final 3 months.

Journey Through Treatment and Recovery

A CBC haematologist saw me within days. I had a series of scans, a bone marrow biopsy, etc. My formal diagnosis came six weeks later. I was prepared for being told that I had multiple myeloma. But had I not been, I would have been made aware of the reverence and concern the nursing staff showed before I got into the consultation! The only thing that shocked me about my diagnosis was that the consultant said, “I’m sorry, I can’t prescribe lenalidomide.” At that stage, I’d never heard of it. I must have sounded quite informed. That led to further searches about myeloma treatments. Then, I had to have a second opinion with someone who could prescribe lenalidomide (although I had to co-pay to get it).

Two years later, I am feeling just as well as I did before diagnosis. I’ve had 5 rounds of triple therapy, a stem cell transplant, and surgery to remove a thyroid tumour. And I’ve had to rely on India to obtain the lenalidomide maintenance that currently keeps me in remission.

Myeloma is an individual disease; mine is atypical in that I have no known bone lesions and so far haven’t had infections. I won’t push my luck, though; like all of us, I’m currently being ‘shielded’ trying to avoid the pandemic.

Petra

Discovery and Initial Management

Hi Nash,

In my case, about 13 years ago, while living in another part of the country, I had to have a CBC medical examination for a new job and in the routine analysis, they found I had a low white blood cell count. On reflection, this wasn’t surprising, as I had been suffering from recurrent infections for quite a while. My GP was very good and monitored things every couple of months. And after a while, when things weren’t improving, I was referred to the haematology department. They carried out several tests (except a BMT) and concluded that it was an idiopathic neutropenia and my GP should continue to manage it.

In 2014, I was hospitalized with a rather aggressive respiratory infection that was probably exacerbated by the neutropenia.

Diagnosis and Treatment

In early 2015, we moved back home, and my new GP again took proactive steps to monitor my CBC counts and prescribe appropriate antibiotics if I developed infections. As the counts weren’t improving after a couple of years, she referred me to the haematology department at our local unit. The approach this time was very, very different, and this time, including all the usual tests. I also had a bone marrow biopsy at the end of 2017.

I was also started on filtration to try to boost the WBC. The anaemia-related biopsy results revealed that although the number of blasts was still low, the cytogenetic test of the bone sample had revealed I had an extra 8 chromosomes (or I was trisomy 8 as my consultant described it). They told me I had myelodysplastic syndrome, which is not so common for someone of my age (54). They also informed me I was in a lower-risk category, so the median survivability was 8 years. Also, I remember saying to my consultant, “Well, that’s the median, and I fully intend on being in the upper quartile”.

Challenges and Setbacks

My consultant was brilliant and took the time to discuss with me in detail everything about the condition and what the long-term prognosis was likely to be. As someone with a scientific background, I could comprehend much of this and pose many relevant questions. Unfortunately, within a week of my diagnosis, I contracted the H3N1 flu virus. It then progressed into sepsis, and I spent nearly three weeks hospitalized. This knocked my confidence, and posted this episode, I have had problems with fatigue which may be down to the MDS or could be related to post-sepsis syndrome.

Adjustments and Lifestyle Changes

My employers were incredibly supportive and provided me with access to anaemia support and counselling, which helped me with the acceptance issues I was having to deal with. My work colleagues were also very supportive on a range of levels. Most importantly, I have a brilliant family, and we are always there for each other. I’m continuing the filgrastim and see my CBC consultant every 12 weeks. Our local CBC haematology unit has world-class clinical expertise, communication abilities, and humanity. Moving forward from my diagnosis, I’ve had to change how I approach my life. I’m still working but had to step down as Anaemia Head of the Department, which has significantly curtailed the travel I used to do.

Like many others on this site, fatigue is a big issue. But I have (ever-evolving) strategies to deal with thianaemiaia. I also take time to enjoy things I like doing. I’m also regaining my optimism about being in the upper quartile regarding my long-term prognosis. All in all, I have much to be thankful for.

All the best,

Petra