Hi there,
New user here today and i’m bumbling around the site, reading some of your posts that i have already found a mixture of inspiring, emotionally triggering and generally interesting.
My own diagnosis is of Multiple Myeloma and today is the 2nd anniversary of it. I’ll try to keep my experience to date concise to prevent you from nodding off…
I had started to have some fairly constant back pain in August 22 that i had initially put down to my job as a dentist. Poor posture and working around my patients who themselves have back issues who cant lie back. This resulted in me having to take off a couple of weeks in September 22 to rest my back as i couldnt work with the discomfort i was feeling. I started getting spasms in my back radiating to my chest any time i got out of bed. These would knock me down and have me struggling to breathe for a second or 10. I visited my physiotherapist who had a feel around but came up with nothing in particular and advised me to see a gp. Good luck with that i thought given the state of gp services in this post covid era dont start me.
I did call upon the out of hours service when i could take it no more and was given some Baclofen and other strong pain tablets whose name escapes me for the moment. I think she just thought i was after diazepam for the spasms.
Anyway, i was enrolled on an implant placement course and i did not want to let my patient down on the course so i attended that and just about was able to place one for him with a little help from my tutor when the pain stopped me in my tracks as i was about to suture the site closed. Up to this point I thought i was ready to return to work 2 days later.
However, the next evening my wife asked me what types of bread i would like with my ulster fry for dinner; i turned to answer her and was struck with the most intense pain i have ever felt across my back and chest and i lost momentary power in my legs and fell forward to my knees then onto my back. It seemed like forever before i could get a breath into my lungs and with it i pushed the word ambulance out.
I lay there on my hard wooden hall floor for 8 hours waiting on the ambulance who when they arrived were rather surley in attitude and forced me to stand up aided by them and some nitrous oxide rather than put me in a spinal stretcher. This again caused extreme pain and the loss of my ability to breathe for a few seconds. They said it was all in my headand it was panic that stopped me breathing.
Then i spent 4 days in the A&E department awaiting admission to a ward. The doctors diagnosed 8 compression fractures to my vertebrae in various locations, this increased to 9 after another fall onto a toilet after my 1st discharge that in all fairness, i begged the doctors for so i could attend my youngest daughters 16th birthday at home.
So, ive had to learn to walk again albeit now with a walking stick. Treatment initially was a twice weekly Velcade injection in my tummy along with dexamethasone and daily Thalidomide tablets. This brought my free light chains down to just under 1000 from over 6500. My regime changed to Carfilzomib with dexamethasone and daily Lenalidomide tablets 3 weeks in 4. I was deemed suitable for autologus harvesting for a stem cell transplant which i had in August 23 which i can only describe as a horrible but necessary adventure. So im just over a year post transplant and have been admitted twice with chest infections so far. The regime of Carfilzomib continues but now on alternate weeks and once monthy i get my bisphosphonate and an infusion of IgG (Kiovig i think), daily Lenalidomide for 3 weeks and a massive dose of oxycodone to keep the pain at bay. We are trying to reduce this dose to reduce the sedative effects so i can return to work next spring. To that end im having all my childhood vaccinations and HepB again so the first patient to attend with an infection doesnt kill me.
I also take Nivestim injections twice weekly to boost my immunity as neutropenia has been a bit of an issue previously with myself.
I think thats everything, i continue to suffer from fatigue, constant back and chest pain and lack of energy and stamina. But i look back and see how far i have come from where i started and this helps keep the self pity days at bay. Today is one of those unfortunately, hence my motivation to finally sign up to this forum. I hope to provide newly diagnosed with the value of my own experience, i think i am ready for it.
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