Great news! It's fantastic to hear that Tom.
I'm celebrating the fact that I've passed the 'year from diagnosis' milestone in the last week or so. Bit emotional leading up to it but now it feels nicely like a particular chapter is closed and the next one is beginning. Plus the sun has been shining which always helps 😀
Helen
Hello!
Ig means immunoglobulin (which means antibody, basically, I think). In the case of myeloma, you will have lots of identical useless ones being made (monocolonal protein or paraprotein) instead of lots of different useful ones.
It's a y-shaped molecule made up of heavy chains and light chains. The heavy chains come in three types, I think G, A and M or something like that. Your heavy chains in your paraprotein are A. The light chains come in two types: kappa and lambda. Your light chains in your paraprotein are Kappa.
As far as I know, it doesn't really matter what type you have, in terms of prognosis etc. I only have light chains, pretty sure it's kappa in my case but can't remember for sure…
Helen
Yes indeed! Thank you Dai. There are so many people reading the forum, and everything you write is not just helping the person you write to but all the others who read it now or later.
Hoping everyone on here had a good day and enjoyed some sunshine!
Helen
Hello again,
Good luck with starting the CTD. Hopefully at least getting to the stage of 'knowing what the plan is' makes it easier to engage with. I haven't had CTD, I had PAD, but I think any combination of three letters is a good thing to try 🙂 and I know the D is for Dex which is pretty mindblowing….!! You can read a lot on here about different people's experiences with that. It has some nasty features but it can also give you a lot of energy and reduce pain, so it's not all bad….
Surgery can be a daunting prospect, but I think other people have reported good results from back surgery on here, and I guess if you need it then you need it, so trust those surgeons and it'll be soon be a distant memory. I had a leg op and so have a titanium pin down the whole core of my thigh bone, which seems to function fine but is very odd if you stop and think about it!!
Helen
Hi Fi,
That sounds tough, being on the outside and wanting to know more. It's hard to comment in some ways but a few things:
– staging in myeloma isn't like in other cancers, and it's not so important, or at least it's only one of several things which might predict things for you (age and general health are relevant, also how you respond to treatment. For example, I counted as stage 3b due to the state I was in when diagnosed, but I was lucky to have a very good response to treatment, and am now in complete remission so I don't think the 3b is (hopefully) something to worry about too much.
– having some chemo sounds normal, but the key thing is do you know what effect it had and why it was stopped? maybe it worked and that's why? (let's hope so!) but equally if it didn't work and was stopped, that is different. And even if it worked well, during remission or on a stable plateau there can still be issues of pain etc which do affect your quality of life.
Good luck with trying to find a way to know and understand more about the exact situation fo your Dad. It is tricky about wanting to go to the appointment and not being able to. I don't know if you could ask to see copies of the letters afterwards? (I always get a copy of a letter which my consultant writes to my GP, it takes a week or so to turn up but it's a good way to look back over time and see what has happened). And/or if you talk to Ellen maybe she can tell you two or three key questions to ask, and you could even print them out and give them to your Dad to take in? Or if there is a Macmillan nurse they could perhaps hold a short discussion session – I always felt less bad taking up their time whereas it's true with consultants you can feel they have a very busy schedule so you only raise specific things with them.
I guess also I have been lucky in feeling very happy overall with my care, but it may be that there are issues of concern with the particular hospital in which case you are very much within your rights to raise those. Perhaps a second opinion could be useful? I'm not sure what to suggest as I suppose I haven't had the same concerns, but i've certainly read that a second opinion is one thing to consider.
Best wishes,
Helen
Good luck Tom! I also remember the cyclopriming made me very hyperactive as well as sick, very odd combination. Hopefully you're feeling a bit better now? Then I remember I had a weird phase nearer the end of the GCSF injections of wanting to feel pain in your bones as an indication that it was working… Worrying whether I was feeling it or not. The things they put us through eh?
I wish you a bumper harvest, millions and millions of those cells.
Helen
Hi Maureen,
Belatedly, Happy Anniversary! I'm so glad Ian managed to get out of hospital for that with you and is getting out regularly now. Small steps are very significant at times like that. He's had such a rough ride and definitely deserves that bed sore to hurry up and clear off.
I also particularly approve of May 30th as it's my birthday too 🙂 I'm trying to think back 5 years to remember if you got a sunny wedding day or not… but think I wasn't living in the UK at the time! I hope you did, anyway!
Take care and good luck with the continuing recovery and the big 60th!
Helen
Hello,
Glad you're seeing your consultant next week – 24 June does sound like too long a wait.
With the BMB (well done on the jargon!!) I was told when I first had one that it may give some results which come quickly, but some of it always takes a week (they have to stain it with something or wait for something to happen). I was in hospital when I first had one done when they were trying to figure out what the problem was. The next day I got the 'you have a type of blood cancer, we don't know which' shock, as that was somehow immediately clear from the BMB. But only a week or so later found out it was myeloma. For some reason (age? or because no PP in my blood) they spent quite a while saying 'we're a bit confused about what it is'.
Nowadays it always seems to be a week at least till I get any BMB results. So the timing of your appointment makes sense.
It's horrible waiting for appointments and results. Then again, it sounds encouraging to me that you're well enough to go home and wait. If you had kidney problems or hypercalcaemia or generally any major alarm bells from your bloods, they wouldn't be giving you that time, I don't think. I was admitted to hospital (didn't come out for 4 weeks!) and immediately put onto bisphosphonates and steroids as I had both of those, and in general the whole vibe was 'we don't have any time to wait before starting treatment' which was very stressful. Hopefully you've caught it before it's done as much damage as it could have.
Good luck with it all, and do ask questions and strongly consider getting a second opinion or contacting different hospitals – all the advice seems to say that and you do have that right, and it sounds like you have some days to do that. Though equally if you feel comfortable with your consultant, just go with it and put your faith in it – there are some great treatments out there nowadays and still more in the pipeline. And I've met someone who has had it for 17 years (remissions of 7 years then 10 years) which I find always helps remind me that there is a lot of variation around the median statistics.
Helen
PS Nottingham is meant to be very good, and might be within reach?
Hello Alpenator,
Welcome to the site – as everyone always says, sorry you've had to join but this is a very friendly and helpful site.
You must be in shock having found out so recently. All this new terminology too!
I think that is just a fancy way of saying you have paraproteins which are the key 'marker' for myeloma, which are used to track their disease. The way I understand it is that plasma cells are supposed to be the 'factory' cells in your blood, pumping out antibodies which come in different types to fight different things. When you have myeloma, the dodgy plasma cells multiply (causing all sorts of other damage by crowding other good things out and often stopping healthy bone formation, causing anemia etc). These dodgy cells also pump out a useless 'paraprotein' instead of a useful antibody. They are also known as 'monoclonal proteins' or M proteins or sometimes M-spike. Or people on here might just write PP for paraprotein.
You could ask what your paraprotein number is – and then with treatment hopefully you will watch that number go down as low as possible. But that isn't measuring the cancer directly, it's measuring what the cancer cells are pumping out. It seems like sometimes there is a time lag (the cancer may be gone but the paraproteins have a longer half life so may show up in blood tests a while longer).
The bone marrow biopsy looks actually at what's going on the in the bone marrow – how many plasma cellls, what they look like etc. It does hurt, but it's a good way to see what's going on. I've had 5 and some were really painful, some not so bad – hope yours goes ok.
Just to confuse things more, some of us with myeloma don't make paraproteins, we just make 'light chains'. So we have tests to count those instead of paraproteins. (A full paraprotein has heavy chains and light chains combined).
I'll leave it there…. and apologies for the slightly unscientific explanation, I'm an English graduate so it's all been very new to me in the last year 🙂
Helen
Dear Sue,
I never met Keith but I read his posts on the forum and he was so helpful in passing on his experiences and advice to other new myeloma patients starting out on this tough journey. He was clearly a very brave and lovely man, and you must miss him. I hope you are surrounded by love and able to take the time you need to grieve, and rest after such a very hard time. Thanks so much to Keith for his posts.
Helen
Thanks Eve!
Yes it's nice to have something to look forward to and important still to have those days.
I'm actually reassured after yesterday. I haven't seen doctors or had results yet but the guy doing the test explained it and showed me the pictures and said it looked to him like my heart just has an extra sticky-out-bit, not a clot.
I was really worried when they asked me back for a third test after the MRI and I didn't know why – I found lots of scary stuff online about heart problems and chemotherapy. Also it does seem blood clots are fairly common with Hickman lines.
But I guess I just thought I'd post to show that sometimes on these trials you get lots and lots of tests and you don't need to panic…. And that hearts can be funny shapes and it's ok!
I hope you and Slim have a nice Friday today and a happy weekend,
Helen xx
Hi Andy,
It's great to read this news! I always notice that you worry about giving 'bad news' for newbies etc but looking in from the outside I always think your story is really encouraging, a story of hope. If at first you don't succeed, try, try and try again! I've hesitated to say that before because I'm not in the same boat and I realise it might not feel like that for you – but there will be people reading your case who are going along the same rocky road. It's not like everyone has the 'standard' pattern of response. It seems to me as if 'myeloma' is actually lots of separate types (not yet fully understood). Sometimes the first drug they try is a bit like using the wrong screwdriver and just doesn't really work efficiently despite all the horrible experiences you go through on it. But nowadays they have a few tools in the box and sometimes a different one clicks. I'm sorry you have had such a long and frustrating time getting there, and realise you must feel battered – but it looks like those drugs are steadily plugging away and will keep doing so while you enjoy a nice holiday! Even if they go up a bit at some point, the trend can be down and right down.
Thanks for writing – and I really like the motto. Every Day is A Gift!
Helen (lucky enough to get the right screwdriver first time… although I do know what you mean about being cautious even with good news) Oh and I haven't had an SCT either even as a young'un of 33 – due to the trial I'm on. It's worth bearing in mind that it's not necessarily all about SCT nowadays – so if you get your numbers down with RCD you might not need/want one, or you might be able to do it at a later date. Though obviously your consultant will know much more about your situation and what's best.
Hiya,
I'm on pamidronate which is what they use at my hospital. I read some research about how zometa has been found to have good results in terms of increased remission etc, so I asked about why I'm not on that. At my hospital it's currently the policy to use P not Z but they're very similar. The research found that Z is better than another type, a different type altogether (let's call it X!!) rather than comparing with P. So maybe P is just as good as Z, it hasn't been proven – hence my hospital sticking with it.
I think Zometa is more expensive, have a feeling that's why! So if I were you I'd be fairly pleased with the change 🙂 also as it's quicker!
But if you do find out more, let us know!
Helen
Hi Maureen,
Good luck with the next cycle and the results, and getting rid of that bed sore! Hang on in there.
Helen
Hi all,
I didn't have SCT but lost my hair from the induction chemo.
It's grown back a fairly similar colour with a bit more grey possibly (I still have v few). And yes it came back quite curly which it wasn't before. Well, sort of wavy/curly – curly when out of the shower. Lots of it but very soft fine hairs. And yes maybe a bit duller actually like Helen says.
I had it cut for the first time 3 weeks ago as it was beginning to be a bit wild and mental which made me self-conscious being back at work etc. I was reluctant to lose any of it but the cut really helped, and actually I think it's a bit less curly now… so maybe over the next few months it'll go straight. We shall see!!
Helen
