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Hi,
I was hospitalised 4 weeks ago having collapsed at home. The collapse was caused by a fractured vertebrae in my back and while in I was told I have myeloma. I was in hospital for three weeks, have been accepted in the RADAR trial and chemo began last week. Today is day 10.
My issues started last year with what I thought were gym related issues with my ribs. Although this summer I had presented to my GP and requested blood tests and also A&E where there was unfortunately no xray was taken as it was assumed this was a sporting injury. With what I’ve learned over the past three weeks I’m certain I could have ticked the majority of myeloma symptoms in June or July this year so a little frustrating not to have been picked up prior to my collapse.
I am 49 and I’m really keen to speak with fellow myeloma patients around my age to understand a little of the journey. What expectations should I have about a normal life, the adjustments that we have to make and how people have dealt with the process.
I’m blessed with some wonderful friends and family but being able to understand the experience and perspective of someone similar age with myeloma would be really helpful whether through here or any signposting to a particular support group.
Thanks for reading.
Hi
I was also 49 when diagnosed with a fracture in sternum and went on the radar trial and still on it now. Roll on nearly 2 years and I am well, working full time, back running and pretty much normal life. I am on maintenance treatment now A little tired now and again but nothing to stop me doing daily routine. Although it was a scary time at start you soon settle into a new normal and i just cracked on with the treatment taking each step at a time and ticking each stage off. I managed to work most of the way through just finishing before stem cell transplant and back after 3 months. You will get through it and back to pretty much normal living in the end!
Happy to answer any questions.
Hi, I’m 51, also recently diagnosed. Like you I experienced symptoms that I put down to a physical job, previous injuries etc. My symptoms all started a year ago with back pain and stiffness that moved around the sacrum and lower back causing extreme stiffness. I had physio/osteo and massage and it helped, but then my back was always sensitive to jarring and I was finding it hard to run my dog at agility competition. Then in June this year my back flared up big time, with abdominal spasms, the pain moved from the middle of my back, to the lumbar and then the sacrum where I just got worse and worse. I also had rib pain that I did not correlate. I struggled to get up out of bed I was in so much pain. I had private scans of my thorax and lumbar and saw a private rheamatologist, and thank God I did as she asked for a further scan of my SI joints which revealed a question about sinister pathology. I was then fast tracked and finally diagnosed in August with Multiple Myeloma. It’s a shame because the doctors only to teleconsults they were not seeing my worsening progression and kept prescribing pain killers. I was really scared that my symptoms would not improve as my mobility got really effected I had to resort to using walking poles to get around. After 6 treatments, there has been a dramatic decline in the paraproteins and finally mu mobility has started to improve and I am starting to move around better. My rib pain is still there, but much improved. Reading other’s stories, I am hoping that in time I will be more back to normal again. There was a time I could only see a dark tunnel ahead, but now I am seeing the light and believe I will improve more. Like you I am keen to touch base with fellow myeloma people and read and hear about their journeys. I know everyone is different.
Hi
I too was diagnosed after finding a fracture in my l1 vertebrae . This was July and i am still awaiting a treatment plan, i have a plasmacytoma on the vertebrae so having 1 blast of radiotherapy this Wednesday. Im July my paraprotein was 13 and last week bone marrow biopsy showed plasma cells of 8-10%. The consultant wants to do a full body mri this saturday and i have done more bloods to see if there is an increase. It has been so much to take in , i am 55 with my youngest children just 10 and 13 , im wondering how i can manage to be a good m while going through the treatment and the possible side effects. It had been so good to find and read this site and forum , I hope I can ask questions as we all go through this journey together
Hi Ald,
Mine is a very similar story although I was 60 when I suffered 2 vertiral wedge fractures due to myeloma. I also had kidney failure and needed dialysis, I have had a stem cell transplant which put me in partial remission, and that lasted 3 and a half years. I am now back on a maintenance dose of chemo, I can do most things that I used to do, except mainly running and I used to run in 10k races and a few minor things.
You have to work out the things that you are not able to do, and obviously not do them, but work out the things you can do, and even find new things that you have not done before.
I am one of the Myeloma UK peer buddies, and it sounds like you would benefit from speaking with one of us on the phone or on Zoom. You can refer yourself via the Myeloma UK website for up to 6 phone or Zoom sessions with someone who has gone through a similar experience to you. You can talk about having myeloma, stem cell transplants, chemo, and all the rest that goes with it. It might be worth it for you!
regards, Tony
Thanks Tony I’ll take a look at that option. Mentally I feel in a good place right now. The induction chemo has certainly arrested the most severe pain and I’ve been able to get mobile again in last couple of weeks. I have two further cycles to complete before stem cell. I’m finding that the biggest issues day to day are the side effects of the chemo around taste, constipation, impact on sleep and the like but on the chemo free days between cycles the pain increases just that little bit and appears in a couple of places it normally isn’t.
Myelomamum, my kids are 20 and then 17 ye old twins. Their mum and I are separated and tbey live with her so I don’t have the same day to day challenge. I’m trying to be a better listener and work out what we will do or what we will plan to do when this is in remission. What I’ve found is that they don’t want to acknowledge that there is a possibility it won’t go that way so trying to respect them as young adults and give them the information about this without overwhelming them so they can ask questions when they need.
Hi ald,
We still havent told our youngest children , i want to wait until after Christmas as i still havent started treatment , my older 2 seem to think nothing is wrong as i am carrying on as normal all be it a very achy back. I dont know how they will all be when i go missing for my stem cell transplant.. i am taking it a day at a time and trying to take in as much info as possible.
Sounds similar to where my girls are in some ways. They were with my when I collapsed and also saw me when I had a shaking episode in hospital but they are focusing on the positive. Taking it day by day and getting information sounds a sensible way to deal with this.
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