A few people have asked about paraprotein levels (for the
Swedes amongst you, that’s ‘M-komponenten’), so here’s a simple explanation
from the Myeloma UK website. Myeloma is a type of cancer arising from plasma
cells which are found in the bone marrow. These plasma cells form part of your
immune system. Normal plasma cells produce antibodies that help fight infection.
In myeloma, malignant plasma cells in the bone marrow produce large amounts of
an abnormal antibody known as paraprotein. Unlike normal antibodies,
paraprotein lacks the capacity to fight infection and has no useful function (apart
from giving you the looks of Quasimodo!!). It is often through the measurement
of this paraprotein that myeloma is diagnosed and monitored.
From what I currently understand, the ideal is for this count
to reduce to zero, at which point you’d to be considered to be in complete
remission. Again, myeloma is such an individual disease, so there’s nothing
exact about these values, and as far as I know you can have a paraprotein count
of 2 to 3, and still be considered in remission. That’s something I will understand
more about in the future, but for the time being, I’m responding to the
treatment and things are heading in the right direction. I’m counting my
blessings. Anyway, back to why I haven’t been in the mood to post a blog for the last few days. I’ve had a real lack of energy, partly due to an on-going cold, and certainly not helped by my broken sleep. It’s turned into a bit of a running battle for me. My brain on the one side, trying to convince me that I’m OK to carry on with my normal routines, and my body on the other, telling me to stop and listen. I’m frustrated by this standoff at the moment, but as everyone says, I need to listen to what my body is saying. I need to make that adjustment, to accept that this treatment will weaken me. It’s difficult, because I just want everything back to normal, back to the way it was. The feeling of numbness that I’ve previously experienced really took over, and in hindsight I probably wasted energy trying to fight it. No one said this was going to be easy, and hopefully this weekend has been a lesson for me……just listen to your body! Either that or stop complaining and just get out there a cut the bloody lawn!!
Len and I often talk about these kinds of issues. We learn a lot from each other (though mainly her off me obviously!!), but when it comes to these more ‘behavioural’ issues and techniques, Len takes the lead and is clearly the more informed member of our family. She re-emphasised that, if myeloma is what we’ve got to deal with, how grateful we should be that the tumour on my sternum exposed this disease so early. How fortunate I was to have the trauma in the summer of 2010 (sounds more convincing than ‘mishap on a water slide’…) that seemingly weakened the bone and allowed this otherwise hidden disease to surface. Most people are not so lucky, and many do not even discover they are sick until their kidneys are no longer functioning. As I’ve said before, considering I have multiple myeloma, and how it could have continued to attack my body and destroy my plasma cells for many more years, I’m in a good place.
Hi Patrick,
ReplyDeleteGood news that you are responding to the treatment. We are reading your blog and thinking of you.
Linda, Emma, Tilda and Christian in Andalen.
Hi guys, thanks for your thoughts and hopefully see you in Sweden sometime over the summer.
DeleteWise woman, your wife... I always thought so :0)
ReplyDeleteWouldn't it be great if we just had an "off switch" for our brains? Just to give us a little peace ...
Billy, you're amazing, your blog is amazing, your personal insight is amazing, the way you're handling all this is amazing. The rest of us are in awe - but do cut yourself a little slack occasionally hun. One day at a time, one treatment at a time (God, did that sound patronising? Wasn't meant to). You're going to have low times, it's all part of the journey towards your final goal. You are strong and you are fighting this - all the signs are positive and you are winning. Get angry, scream, cry, punch something - and then get out there and mow that bloody lawn if it ever stops raining for long enough! Much love to you all xxx
Hi I'm Emma.I've been diagnosed with mgus last December.I am just trying to make out my blood report and I have no idea what they all mean.my paraprotein is 19.0 at the minute.am I right in thinking it needs to be lower? The higher is the more chance of mm. Also the light chain thing is confusing too.any help would be grateful
ReplyDelete