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..."
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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 aftermathThese days I'm no stranger to the fine hospitals we are blessed with in Newcastle. I have been in a lot of bone pain lately, particularly in my right hip & knee; like someone trying to drill a hole in the top of my right tibia whilst also stabbing me with a screwdriver in the ribs every time I breathed in. However today was meant to be a routine trip to the RVI for a CT scan, as part of the separate investigation into the condition of my spine post-radiotherapy. Following the eradication of the plasmacytoma in December 2018 my T12 vertebrae was left with a gaping hole on the right-side, and might need some surgical intervention to strengthen, and prevent a collapse.
En route to Newcastle my wife and I received the phone call on the hands-free from the Freeman Hospital. "Can you come in as soon as you can..?". Phone calls that start in this way seldom bode well. As it was, the Specialist Nurse who called went on to explain what was wrong, and she was great - there can't be such a thing as a 'good way' to deliver such news but we were pleased not to be left guessing. Last year my plasmacytoma diagnosis landed slowly and softly in that I'd known for months something wasn't right, and strong suspicions of cancer had been discussed well before the results were confirmed. Also it was treatable & curable. This time wouldn't promise to be so straight forward. The report from the PET scan I had the previous Friday landed and revealed hot spots of myeloma in my neck, spine, ribs, shoulder and leg. "Pretty consistent with the pain I've been feeling", I thought to myself, valiantly applying logic at a time like this. As instructed we completed the CT scan at the RVI and drove to the Freeman to face the music. Everything was ready for our arrival; a cup of tea, an appointment with a consultant, bone marrow biopsy, my treatment plan, my first round of steroids, and my first Zometa infusion. And all this was wrapped around by something perhaps most important of all in the moment - our Specialist Nurse being with us to talk to, and a quiet place for Janine and I to sit and be there for each other. After a surreal morning, we quickly grew in positivity as the day progressed. The more we spoke with the consultants and nurses, the more we understood and so the more comfortable we became with my diagnosis. We started to understand how the chemotherapy treatment would play out across the year, and we were buoyed by the possibility of joining the MUK9 trial, flagging our intent to consent in any case. The bone marrow biopsy (my third in six months) was painful but sociable and the half hour Zometa infusion gave us both pause for reflection in the tranquillity of Ward 36. Once the steroids kicked in, my bone pain subsided. It was a long day and a lot to take in but I'm in the best place, with the best treatments with the best staff and I can't ask for much more than that. Oh and, my T12 vertebrae has indeed partially collapsed. |
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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