Tag Archives: smouldering myeloma.

40 Challenges – Post 2 What are the symptoms of Myeloma and how is it diagnosed?

My first  post talked about what myeloma was. So I thought I’d talk a little bit about diagnosis and symptoms at the moment. Late diagnosis is one of the main issues for myeloma patients, and it is this late diagnosis that contributes a lot to the less than positive ‘prognosis figures’.

A recently published study published in the Lancet showed that myeloma is the MOST difficult of all cancers to diagnose.  Nearly 40% of myeloma patients were diagnosed via an emergency admission/ referral where the figure is 23% as an average across other cancers. And 10% of all patients die within 60 days of diagnosis. Pretty shocking figures! But I have great faith that what we are seeing is a big improvement. Just two years ago when I held my Glitz and Glamour Ball, we told people that 20% of patients die within 60 days. So things are definitely getting better.

Now the last thing I want to do with this post is to worry anyone who reads this. As I’ve said before I am no doctor and only know what I’ve learnt while I’ve been a patient. And like most things, I only know the little that I know!

Like with most things, most of the time, people’s symptoms aren’t to be worried about. But I have always thought, and especially since having myeloma, that if you are at all worried, you should ALWAYS go to a GP, and you should ALWAYS persist until you are sure that you have been tested appropriately. Whether it is a back ache, a headache or anything that is persistent and concerns you.

One of the reasons that many people don’t get picked up with myeloma is because the symptoms are often confused with day to day issues. The main symptoms linked to myeloma are;

  • Calcium levels being high – can cause vomiting, nausea, constipation, confusion and bone pain
  • Renal Impairment – kidneGP_Pathways_Dec_2010ys can be compromised
  • Anaemia – this leads to tiredness and shortness of breath
  • Bone lesions, fractures or spinal cord compression – this can cause bone pain that doesn’t improve. It is often in the ribs or back, pelvis, shoulder or hips.
  • Ongoing infections
  • Weight loss/ loss of appetite
  • Night sweats

I feel like I have been amazingly lucky. When I was diagnosed, it was via a random blood test. I hadn’t been very well for a few months consistently, and my nurse at my surgery decided that she’d do a blood test despite as well as a swab. Life could have been very different if she hadn’t done that. I wasn’t ill again after that, but eventually got a letter from my GP saying that the hospital had spotted something. I then went through blood tests at the local haematology ward. They came back suggesting there could be an issue and I had further X-rays and a bone marrow biopsy. Now in-between the X-rays and the results of the biopsy they came back saying that they thought it was unlikely to be myeloma – I was showing no damage to my bones at all. Result! We were over the moon…for about 2 weeks until I returned. Unfortunately by bone marrow was showing 10% abnormality. I was officially diagnosed as having smouldering or asymptomatic myeloma – the precursor often to full blown multiple myeloma. It meant that I had myeloma but had no symptoms. No bone pain, my kidneys were fine and I wasn’t anaemic enough and didn’t have a calcium level that was dangerously high. But I did have a form of myeloma. From then, it was a waiting game….it was how long it would be until I needed treatment. At that stage, it could have been weeks, months, years or decades. For me, it turned out to be about 9 months. The rest is history. 

All sounds pretty grim doesn’t it. The problem is, that these sound like you’d know that something is wrong. But often, when people have back pain, they think that it is because of a sports injury, or often because myeloma normally affects older people, they think it is just older age. And there comes the reason that it doesn’t get picked up by GP’s. People either don’t go early enough because they think they’re making a fuss about nothing, or they go and the GP doesn’t take their issues seriously. But, if you genuinely think that you have a pain that is ongoing, PLEASE go and make sure you see your GP. And ask them for a blood test. They aren’t expensive, and they can often just put your mind at rest that it isn’t something more serious. Because most of the time, it won’t be!

Part of the reason that I have been so open about my condition, and why I fundraise so much, is because I honestly believe that awareness is a massive part of changing how badly myeloma affects patients. If people know what myeloma is (and I didn’t until my diagnosis!), and know what the symptoms are, then they might get diagnosed earlier. And if they get diagnosed earlier, they can get treated earlier and hopefully avoid the more serious complications that can come with myeloma.

Anyway, that’s the serious bit over! Now onto the fundraising!

So in my last post, I mentioned that Challenge 2 should be easy….climbing 40 floors in a building. Sadly it doesn’t look like my plans are going to come off. So if anyone else know’s a way for me to climb 40 floors of a building, please let me know. I had really wanted it to be the place where I had worked, but it sounds like there are too many hurdles in the way for this.

Anyway, what is Challenge 3. Well it is that I will be giving up alcohol, crips and nuts for lent. Sort of. I can’t quite do it for lent as we are lucky that Nick has won a trip to Mauritius with his work. Call it a lack of commitment, but I decided that we should be able to enjoy this trip of a lifetime and so I have been giving up those things since the 3rd February!

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I’m now 20 days into the challenge with another 26 to go. Now anyone who knows me well, knows I like a tipple or two and so this really is a massive challenge for me. Although funnily, I think that I have actually missed crisps and nuts as much as they have always been my snack when I’m bored etc. So if anyone fancies sponsoring me for this challenge (and there will be more, like a sponsored silence, sponsored 40 hours awake, sponsored 40 hours in bed, and a 40 pub, pub-crawl!), then please go to my just giving page at http://www.justgiving.com/Deb-Gascoyne.

In general though, all is good at the moment. I have my next hospital appointment on Tuesday and hope that the results will continue to be pretty stable. The last two paraprotein results have been 3 rather than 2, but that is all fine so long as they don’t go up. I’ve not been too well this week…yet another cough and cold….but that’s probably because it’s half term and I’m off work! Seems to be par for the course!

It’s got me down a little bit as I have started running recently. This is all towards one of my challenges. I’d found myself getting stronger with the running even after just a week or two. But being ill has meant that I’ve had to stop running. I’ve found this really hard, but knowing how my immune system is low, I can’t risk running in the rain that we’ve been having. I’ve been running with a group of friends who are mainly beginners too, and most runs have started at mine, or my next door neighbours house. So it’s been really tough watching them all go off….and watching them get better. They’re now up to nearly 5 miles where I could only do 3 at a push when I stopped…probably less now. I’m not often jealous, but I have to admit I have been a little this last week or so. There are times when myeloma really gets in the way and those are the time I really feel like it sucks!

Anyway, I need to write my next post a bit more promptly or I’ll never get 40 done before January! But I’m off for now.

And as always, up for anyone to comment if I’ve got anything wrong here! Or if there’s anything in particular you’d like me to have a stab at writing about re myeloma!

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>The Background

>So how did it all begin…a few coughs and colds that I’d got fed up with! So off I went in April 09 to the docs who slightly reluctantly offered a swab and a blood test. The swab came back clear so I never chased up the bloods…until I came back from a great holiday in Portugal with Nick, the kids and our friends and godchild to a letter asking me to go and see the doc about my blood test.

So off I went and was told that I’d got the protein levels of a 60 year old and been referred to the haematology department just to check it out. Well, I knew I felt old after 2 kids, but didn’t expect that! Within a couple of weeks Nick and I were making our way into the hospital to the 7th floor. I remember so clearly walking to the lifts and seeing the phrase ‘ 7th floor Sunrise Cancer Department’ and just bursting into tears – no-one had suggested cancer to me!!

The consultant told me that he wanted more blood tests run, xrays done and a bone marrow biopsy. I was so lucky in some ways and everything moved so fast. The long and short of it was that in July 09 I was told that quite surprisingly at my age, I had Smouldering Myeloma. Not quite bone marrow cancer but it might as well have been for the way it has turned our life upside down.

So what is Smouldering Myeloma. Well, sadly it’s not quite as sexy as it all sounds! It basically means that I don’t yet have bone marrow cancer but that I have pretty high odds of developing it, probably within the next few years. Myeloma is a rare form of cancer. It typically affects people aged 60 and over, and is rare in people under the age of 40. It affects more men than women. Blimey I feel damn unlucky! A 34 year old female with it isn’t the most common thing in the world!

What stops it being classed as Myeloma is that, as of yet, I don’t have any symptoms. What are the symptoms when they occur? Hmm where to begin, bone pain, bone lesions, broken bones, kidney failure, anaemia, night sweats, bruising, bleeding, spinal cord compression and lovely things like this! So in lots of ways I’m so lucky to be where I am now. I get 6-7 week appointments to check my protein levels so if things develop they will be quick to spot them – which is great in so many ways.

But without wishing to winge, it’s quite hard as well. I feel like I’m now living with a ticking time bomb…when will we get that bad news? When will I have to start treatment? Will the kids be old  enough to remember me as a healthy mum and not one who is constantly sick or in hospital? It’s now7 months on, and we’re getting better at dealing with it all and not letting it take over our every waking moment….but it’s tough at times. And people saying that none of us know when we’re going to die and that I’m lucky to get the warning ….well I’d quite like to tell them where to go!! When they have experienced living with being told that you are likely to die of cancer before the age of 50, then they are welcome to express that view! Moan moan!

So anyway, I thought that I would start this blog. And I don’t apologise now for the content of it, the language I might use, or any flippant comments I might make. This website is predominantly for me to write things down…at this stage, I’m not sure I’ll share it, but if I do, I hope you’ll view it as me allowing you into my most private thoughts and forgive me it it offends you at times.

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