Abnormal paraprotein levels.....and my story....

Jayney · New User Joined: 04 Jul 2008 Posts: 1

Hello,

What a great forum this is....

I got diagnosed with a large tumour (plasmacytoma) in my right shoulder in May 2007, after 2 years of being in pain and being continually misdiagnosed, at the age of 28. My bone marrow biopsy showed my bone marrow was clear of myeloma cells and my consultants were hoping it was just a random tumour in my shoulder. Therefore, I just had numerous courses of dexamethasone and 25 sessions of radiotherapy. Unfortunately, these didn't work and my tumour grew during treatment. My consultants were were quite baffled by this and my only option was to have my right scapula (shoulder blade) removed, as apparently I wouldn't respond to chemo. Luckily, my amazing consultant went to the states and researched prosthetic implants. I then had the tumour removed, my shoulder blade removed and the prosthetic scapula implanted. After a week's stay in hospital and my shoulder and arm immobilised for 3 months, I'm now on the road to recovery.....kind of!

They managed to take all of the tumour out and I got told that all of the abnormal proteins in my blood had disappeared (they reckoned the paraproteins were maybe just 'leaking' from the tumour in my shoulder) . My 2nd 3 month check revealed all was well, with my protein levels: 3 Kappa at 16Gg and cyol ratio at 1.1.

However, I had another 3 month check a couple of weeks ago and have been told that my abnormal protein levels have risen and I'm now just outside the normal range. The 3 kappa is now at 22.1 (the upper limit is 19.4) and the cyol ration is at 2.1 (the upper limit is 1.65).

My consultant said he isn't overly concerned, just slightly concerned, but he said the numbers are still quite low. He has brought my PET scan forward to the end of August ( I was due for one in November) and will do my bloods the week before.

I've obviously been hoping and praying that the tumour in my shoulder has just been a random blip but I'm scared now that it's all going to start again and that I'm going to develop multiple myeloma in the future.

I've tried to resech on the internet about paraprotein levels, but it all seems very medical and confusing.

Does anyone know if your levels of paraproteins can fluctuate naturally and, if so, what would cause this?

I've been taking Chlorella for the last 4 months but have read on a couple of websites that people with myeloma should avoid immune-boosting supplements. Does anyone know anything about this and whether chlorella is safe to take?

Thanks for listening to my story and I would really appreciate any advice or thoughts on my paraprotein levels and whether it looks like I'll have an uncertain future.

Thanks

Jayne x

In

Jayne,

Firstly, welcome to the Forum, I'm so happy to hear that you like it as much as i do.

secondaly, I'm sorry about your concerns and scary news to do with your tumor. I have no medical idea to anything you have said. I do hope you'll get the information you need really soon.

All I can say, is keep your chin up and think you beat this once, you can do it again.

Keep us informed.
_________________
Thinking of you Inica

*Administrator*

~Nose Cancer~
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Sternum~
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My Story-
http://cancerforums.net/viewtopic.php?t=6731

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brainman

Jayne, I am not sure what the "normal" fluctuation in paraproteins level is. However, I am like your on doctor... slightly concerned that it is above the normal range. I am glad that you are not waiting until November to have another scan.

You are in my thoughts and prayers. Keep us informed.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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