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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As well as the multiple myeloma hot spots dotted about I also have a tumour on my L3 vertebrae. I guess in the same way as weeds are just flowers growing in the wrong place, this collection of dodgy cells simply shouldn't be there. Not just because, of course, no one wants a tumour on their L3, but because it has no business fighting for space among my spine bones, I've been told. On Tuesday I had mentioned to my consultant a continued slight weakness in my right leg; walking has become difficult, and climbing the stairs somewhat perilous if I'm not concentrating. Attributing the complaint to the tumour (nerve impingement) an exploratory inquiry into whether another blast of radiation might be suitable to treat this tumour was lodged with the radiotherapy team. Today, it all happened. I received a call this morning asking me to go in for a chat and to sign consent forms. They didn't waste any time in getting started so as the ink was drying, I was whisked through for a planning CT scan, had new radiotherapy dots tattooed on my torso and enjoyed the first of four radiotherapy treatments in the afternoon. Just wow! Incredible agility and speed to make this happen by the best organisation in the world. And I’m an old hand at radiotherapy so this will be a walk in the park... Whilst in my radiotherapy consultation today I was shown some images from recent CT and PET scans which illustrate in part what we're dealing with. Some hotspots are visible, but the x-ray style image of my spine is also quite damning. Probably faced with some reconstructive work at some stage to correct that collapsed T12. but that's the least of my worries right now. Here are some images... "Stand up straight, Dave..."
This morning's visit to the clinic was fairly routine; chat with my consultant followed by a blood test. No new information today except that I may be being sent for more radiotherapy to remove the tumour that lurks in my L3 vertebrae. It may be that the tumour is responsible for the slight weakness in my right leg I'm experiencing. I'm quite looking forward to the prospect - anything they plan that is designed to fix something is ok by me, and radiotherapy isn't so bad.
Today featured more significant steps on the road to getting better. After completing an opening 4 day course of Dexamethasone steroids last week, yesterday heralded the beginning of the first week of my taking the standard of care chemotherapy treatment, known as VTD (Velcade, Thalidomide and Dexamethasone). Thalidomide, along with blood thinners and my regular pain relief are tablets I take daily, whilst the Dexamethasone is a Tuesday to Friday thing on two week on two off cycles. Significantly, today was the first in the series of the Velcade injections. It's a very quick procedure with a needle placed under the skin in my belly - quick squirt and we're done - although I'm left feeling even more tired than usual for the afternoon. The injections also leave a temporary pink blotch after a few days, although it's not sore to the touch. I also signed away my consent to participate in the MUK9 trial which, if selected, promises to really open up the drugs available to me, and radically change my treatment plan. And I didn't leave the building empty handed - all my tablets for the next 28 days were waiting for me in a paper bag. Velcade injection aftermath |
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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