Today marked a significant point in the journey as not only did my brief blast of radiotherapy come to a close, but the results of the bone marrow biopsy returned from the lab, and I have the rest of my chemotherapy schedule.
Firstly, the radiotherapy process was like clockwork as expected. The radiology staff at the Freeman were fantastic; efficient, proficient, and friendly & supportive. However, my earlier bravado backfired somewhat - the radiotherapy knocked me for six. Mainly with extreme fatigue, although as my sleep app proclaimed, I have been recovering some much needed sleep hours. Nevertheless, fatigued I am, like ready to fall asleep at random times of the day, that should be the end of the tumour on my L3. However my lower back and legs have felt slightly tighter than usual, so yeah, I’ve been feeling generally meh. On the plus side, one of the other common side effect, nausea, has generally eluded me - I don’t deal with nausea very well in general so that’s a major plus - but all symptoms will fade with time. The radiotherapy itself will continue to take effect for another week or two so I just need to hang in there. Later in the day I received the phone call we’d been waiting for, from the MUK 9 trial team at the hospital. I am classed as standard risk (of abnormalities in the cancer cells) and therefore would not be continuing on the trial. The result gave me mixed feelings; I am pleased not to be classified as high risk (which could introduce its own complications down the line, and with it a 50% lower life expectancy), however the trial would have opened me up to a wider range of treatments not yet available on the NHS. Significantly, as a standard risk patient, I will not automatically receive the ongoing maintenance phase of treatment which succeeds the VTD chemotherapy and stem cell transplant phases. Trials and studies have demonstrated that the maintenance drug lenalidomide (street name: Revlimid) can double remission time in patients, and its adoption as standard of care treatment on the NHS is not only supported by leading experts in the field but is being lobbied for. It’s something of a frustration, though perhaps down to an unfortunate timing issue, that Revlimid isn’t something I can be provided with once my treatment is finished, yet. Taking matters into her own hands, my wife has brazenly launched a fund raising effort (see: Fundraising tab above) in an attempt to raise the funds required for the first year of Revlimid treatment. It’s a tall order but you never know, and if it can give me more time on this planet to see my daughters grow up, and see Newcastle United continue to win no silverware, I’ll take what I can. So, on we go - I also received my schedule for the next six cycles of chemotherapy treatment (including the steroids and Velcade injection) taking me up to Halloween. And I have dates for each of my next nine monthly Zometa infusions, taking me through to mid-January 2020. Big day, and a busy time ahead, but good to get dates in the diary.
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About meI'm David Jameson, I live in Whitley Bay with my beautiful wife Janine, our two children and our two dogs. I love music, and Newcastle United. And I have multiple myeloma. Archives
June 2020
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