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 – kidneys 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!

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!

40 Challenges – Post 1 (but with a bit of substance?)

Ok so I thought that I’d take a different approach to this post given that I’ve got to write more than two a fortnight for the next year! My health seems to be doing ok at the moment with me remaining in remission. My hormones have settled a little with the help of HRT and, dare I say it, antidepressants. So life has, instead, been taken over by my 40 Challenges B4 40. But I doubt that you all want an ongoing conversation about that and nothing else. My plan therefore, is to try to put some substance into my blog. Although I also plan to list a challenge a week…who knows, it might spur someone into being able to help me!

So to get the Challenge side completed, I thought I’d start with Challenge No 2 (even I have to admit that Challenge No 1 isn’t likely to go ahead sadly 😦 ) but No.2 is one that I hope will be relatively straight forward to plan….’Climb 40 Floors in a Building’. Now I used to work at HSBC in Canary Wharf, so I’m hoping that I can find a friend from there to sort that one out! However, if anyone else has any fantastic ideas, please let me know!

So in terms of some sort of substance, I thought I’d try to give a bit of an overview of various aspects of Multiple Myeloma.. Before I start though, I should clarify that I am no medical expert. In fact, I tend to find that information about myeloma often goes in one ear and out the other….and I have a vested interest in it! I can only speak from my own experience, and if there is one thing that I have learnt about myeloma and how it impacts people, it is that it is totally individual. No-one seems to have the same symptoms, the same treatments, or be measured using the same indicators. It often baffles me, so I would imagine that it baffles those around me too!

What is Multiple Myeloma? 

Well, myeloma is a cancer of the plasma cells, i.e a type of blood cancer. Basically these cells are meant to produce antibodies to fight infection, but with myeloma they mutate and rather than producing antibodies they produce a useless antibody called a paraprotein. Lots of you may hear me talking about what my paraprotein levels are, and this might help to explain why. The more than I have, the more likely it is that the myeloma is getting stronger in my body – this gives my consultant the ability to then give me a more accurate bone marrow biopsy and x-rays if she thinks that my levels get too high. Obviously they don’t want to be doing biopsies and x-rays unless they have good reason.

The reason it is called Multiple Myeloma is because of it being a cancer of the blood. This means that it can do damage at many sites around the body – basically it tends to affect places where the bone marrow is active like the bones of the spine, skull, pelvis and the rib cage. The more of these abnormal cells a myeloma patient has, the more likely they are to experience damage as the myeloma moves into the bone and makes it weaker or causes lesions. In addition, the breakdown of bone, can increase the calcium levels in the blood and this can cause problems for the kidneys which stop being able to filter the blood properly. For those who are hit hard, it really can be a very painful and difficult cancer. For me, I was lucky as I was diagnosed early and before I saw many symptoms. To date, I haven’t really had any bone or kidney problems – I know that I have my GP surgery to thank for this!

Myeloma currently isn’t curable. It can be treated when it is symptomatic and for those of us who are lucky like me, this puts us into a remission.Mine has currently been 2.5 years and there are people (albeit a very few) who get over 10 years of remission. These figures seem to be getting greater thanks to the great work that researchers, consultants, and charities like Myeloma UK are undertaking. I finally feel positive about my myeloma and I think I’ll probably write a post about that down the line! Hopefully I won’t relapse before I get round to it!

It would be interesting to know if people have things they don’t understand that they would like to know more about. I’ll try to keep my posts brief…if they aren’t interesting at all, let me know and I can stop too! And if I get anything wrong, please, please make a comment at the bottom so that people can get the right information! Thanks!