[clairelouParticipant]

I’m 45 yr old. Recently went to the doctor as I’ve been having a lot of bone and joint pain. She suggested arthritis and preferred blood tests and x rays. The lab requested further blood tests and the go called a few days ago to say that they had detected proteins in both my blood and urine (bence Jones) and that this was highly indicative of myeloma. I have an appt with the haemolotogist in 9 days but am worried sick and pain is now in my ribs also and quite bad. What should I expect at this first appt? Am I likely to get a diagnosis then or will more tests be done? How quickly did you receive a diagnosis? I feel in total shock and limbo and it’s going to be such a lonnng week. Thanks in advance

[kevinParticipant]

Hello Claire

Sorry to hear about your current situation. I’m not sure what you should expect from your appointment or length of a diagnosis. I believe I was diagnosed after CT scans and a biopsy. This is because I think that consultants have different ways of dealing and treating myeloma and also because it was a long time ago I was in your situation and the memory is a bit hazy. I was diagnosed in 2006 at the age of 48. I have had 2 relapses and finished my last treatment in Nov 2019. I am at present again in full remission. Hopefully your diagnosis will come back as something curable. Should it be Myeloma I hope this positive tale helps .
Best Wishes
Kevin

[clairelouParticipant]

Thankyou so much Kevin for your reply. When you hear cancer incurable you immediately think the worst.
Good to hear positive tales 😊

[shaun3Participant]

Hi Claire,

I was a bit older than you, 52, when i was diagnosed in 2018. Paraproteins in your blood are a good indicator although to confirm Myeloma there’s an approved set of tests tht they must complete. There’s a really good Info pack for newly diagnosed patients on the Myeloma UK website tht tells you all about it. But as Kevin says, I really hope its something that is curable. I’ve now had two stem cells transplants, one of which was from a donor, and I’m currently in remission. Treatment for Myeloma has come on leaps and bounds in the last 5 years and i read something the other day tht reckons it’s now a chronic disease (you will die with it rather than from it) – so there really is lots to be positive about. I have a fulfilling job, large family, happy life and Myeloma doesn’t get in the way of any of it. Being positive is so important, good luck and keep smiling. Oh, and if it is myeloma make sure you’re treated by a Myeloma specialist.

Shaun

[clairelouParticipant]

Thanks Shaun for your reply. Really does help to know it’s not a life sentence. I think the fact that I lost my little boy 2 years ago to health condition involving cancer stemming from bone marrow Has made it more difficult to be positive but this forum and being able to chat to people with first hand experience really helps.

[clairelouParticipant]

*UPDATE*

I had my consultants appt brought forward by 5 days. Apparently the paraproteins found in my blood and urine sample was igG lambda. Although I didn’t get levels he did say it wasn’t sky high but higher than usual for benign. Since then I’ve had bloods , xrays a bone marrow biopsy and aspiration and an MRI scan.

So this weeks been a bit of a whirlwind. Feeling unbelievably stressed and can’t distract my self. Everyone just telling me to put it to the back of my mind just annoys me. Could they if it was them??

I have a telephone consult appt with the haematologist on the 13th for my results. So everything crossed it’s not the bad news I fear!!

[susantrParticipant]

Hi Clairelou
I can totally understand the way you are feeling. I was diagnosed at 51 and admitted as an emergency with stage 2 kidney failure, anaemia, hypercalcaemia and collapse of L3/4/5. The doctors took no notice when I complained of worsening back pain and they just prescribed a stronger painkiller. The doctors also failed to act on a creatinine of 230. I paid privately for an mri scan, which confirmed Myeloma. I had 80% plasma cells in my bone marrow. I had 4 months of CTD (Myeloma XI trial) followed by stem cell transplant at month 5. For me it was a rough ride, but for many it’s doable. For certain with a diagnosis of Myeloma you will develop a new normal, but you will adapt because you have to. I used to mark off every treatment or test which got me nearer to the goal of remission. I was lucky I achieved MRD negative status. If I were to offer any advice do as much research as you can, arm yourself with information and get yourself a Myeloma specialist. It’s all scary, it never really goes away, but you will get better at controlling your feelings and thoughts. I cried when I wanted and sometimes screamed – it’s a kind of grieving process for the life as you know it. Since my transplant I have not been on treatment and have travelled to Australia, Singapore, Italy several times a year. I work full time from home for a consultant and take time to relax. Look after yourself. Treat yourself well. Face it head on. You have your family supporting you. Good luck. Sue

[clairelouParticipant]

Thankyou Susan for your sharing and lengthy reply. I have been reading up on the significance of all the results I know so far but am aware the bone marrow biopsy results form a key part of diagnoses.

I’m try I gotta to be as prepared as I can be for any eventuality and what questions I need to ask based on this. Fingers crossed it’s MGUS but with the severe back pain also I am veering away from this. Only 6 days now until I get results so I will update when I know my diagnoses x

[marty2019Participant]

My diagnosis came back very quickly. My haematologist sent me for a bone biopsy. The result for myeloma came back the next day. Having gone through this for the past eighteen months, my advise for anyone diagnosed with myeloma is not to let it define you or rule your life. I just don’t give it much thought. I don’t think it is denial. Sure I have it, but I’m not going to make it the central feature of my life. My view is that if I cannot have quantity (in terms of longevity), I am determined to have quality (in terms of how I enjoy the rest of my life). I’m currently writing up my bucket list. What are the things I would really like to do? There are many things, I always thought about doing in the distant future. Myeloma has got me thinking about doing them now. I feel pity for those whose life ends suddenly (eg heart attacks, drowning, being knocked down by a bus, etc), who don’t get the chance to progress through their bucket list.

[sueblackParticipant]

Hi Claire, I was diagnosed in 2017 aged 46 and felt just like u, and for a while at first diagnosis it took over me, I had a stem cell transplant in Feb 2018 and I am still in remission. For me now I sometimes forget I’ve got it, until its hospital time, apart from aches and pains I’m doing great. I would say not to worry but its only natural. In reality its bark is worse than its bite x Good luck, hope this gives you some reassurance.
Sue x

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