Count has dropped

This topic contains 8 replies, has 8 voices, and was last updated by  tom 13 years, 2 months ago.

Viewing 9 posts - 1 through 9 (of 9 total)
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  • #91264

    ivanwarwick
    Participant

    My consultant tells me that my paraprotein cells have dropped from 17 to 6 which I believe is fantastic however what does this mean. I take it if I get to zero I will be in remission and what does 17 mean is it 17 parts per 100 or what does anyone know.
    Ivan

    #91265

    Helen
    Participant

    Hi Ivan
    As I understand it, paraproteins are released by the myeloma cancer cells and are what are known as 'marker' cells, they only occur when there is something going wrong and are specific to this type of condition. So 0 is the best number to have. The level for treatment seems to depend on the overall condition of each individual, this is worked out by the staging system so if you have serious anaemia, or bone involvement or kidney damage or another raised protein (beta) you will fit either stage 1,2 or 3. I think treatment doesn't always start until you fit into group 2 or have 'end stage' damage, ie treatment is the only option to stop the disease progressing. I think that lots of people are in the 'watch and wait ' group because the treatment causes so much trouble for a lot of people.
    There are people who do not have high paraprotein but will have high 'light chain' counts and even others who have no signs of either in their blood but only get diagnosed when they have bone or kidney problems. So, many different presentations and none very straight forward, hence the difficulty recognising it sometimes.
    Does this make sense?
    Anyway a drop from 17 to 6 is brilliant and if it stays down and keeps going down you are on the right track, well done keep going in this direction.
    Helen

    #91266

    Perkymite
    Participant

    Hi Ivan, just so you can compare my Paraprotien were 33 when a Tumour in my neck ate my 4th Vertebrae. After Radio/operation/Chemo and an SCT I am now at 2.3 and have been there since November 2010. This is for information only and as Helen says it can be different in each person so do not take my readings, for example, as a bench mark for your own readings.

    Well done with the reduction keep it up.

    Kindest regards ? Vasbyte

    David

    #91267

    eve
    Participant

    Hi Ivan
    It does depend on what type of Myeloma you have and how much bone damage and tumours,plus lesions.some are more aggressive than others.
    This is such an individual decease you cannot go on anybodies bench makers.
    Did you ask why they had taken you off CDT and put you on Velcade after just a few cycles???? You would normally do at least 4 cycles unless you are having massive side effects,CDT is first front line drug as Velcade is 2 line drug????
    Saying all that it does sound very positive so you must be very pleased,it does sound very positive.Eve

    #91268

    ivanwarwick
    Participant

    They took me off CTD because I was getting small blood vessel clots on my right leg. Thanks Dave, Eve and Helen for your comments, it's much appreciated. I obviously have a lot to learn about this MM however I'm feeling positive at the moment and I do take much encouragement for positive results like the paraproteine count.
    Ivan

    #91269

    gina45
    Participant

    Hi Ivan, my mum went down to 19 when she was having treatment and i think they called it partial remission she did really well and didn't need treatment for another 12 months because of this. 6 is a really good number.
    Take care
    Gina x

    #91270

    Mari
    Participant

    Hello Ivan,

    Very pleased to hear your counts are down, as the others have said any drop in PP levels is good.

    If would like any more information about what paraproteins are, and some of the other indicators that are monitored, have a look at the Myeloma Uk Infosheets. I am pretty sure that you can find them under the
    'What is myeloma?' tab on the home page.

    Good luck with the rest of your treatment and i hope you continue to feel well,

    Best wishes, Mari

    #91271

    CarolBradley1
    Participant

    Hi Ivan – what fantastic news. I donĀ“t understand all the "ins and outs" but I do know that such a drop indicates that they have the cancer on the run!
    Best wishes for continued good news.
    Carol xxx

    #91272

    tom
    Participant

    Well done Ivan, am sure the count is great:-D keep it low and keep getting remission8-)

    Tom

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