Hello,Â
I'm quite confused by my recent blood test results and wondering if anyone can shed any light on them for me?
I live in the UK and 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?Â
Are my paraprotein levels indicating that I'm developing multiple myeloma?
I've also been taking Chlorella (an algae) which has amazing health benefits, 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 so much
Jayne x
Jayne-
Welcome to beating-myeloma.org. A possible mm dx is a bummer but the fact that you're here is a real positive.
I will try to address those questions that I have some personal experience with and I will stear you to forums that may help with other issues- like paraprotein levels.
I was also originally dx with a simgle plasmacytoma. It was removed and the site was stablized- sounds like you. Your numbers are still low. The mmasupport forum may be more specific about this.
I believe that the prognosis for a single plasmacytoma with low paraprotein levels is good- though myeloma is considered incurable, it has become a very treatable form of cancer.
I recommend reading the article by Peter Tischler about staging- chose the "diagnosis" buttom on the left side of the page and you will be taken to this article.
Paraprotein levels can fluctuate. The important thing is to monitor the trend. Like staging, diagnositic tools such as pet scans have improved in mm treatment and keeping an eye on your levels is important going forward.
I believe a bone marrow biopsy is limited by the location of the biopsy itself. I rely on a freelight chain test (the Binding Site is the maker of this test- UK co.) 24 hour urine analyis and blood tests will give you more info on your blood levels.
In your post you ask about one of the most heatedly debated topics in mm therapy today-
"I've also been taking Chlorella (an algae) which has amazing health
benefits, 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? "
On the topic of immune boosting supplements I can only relay to you my personal experience and perhaps other members will contribute their own experience on this subject
I recommend you choose "therapies" on the left side of the screen then choose "supplementation." There are articles and studies that discuss supplementation before, during and after chemotherapy and radiation.
Personally, I supplement extensively- as outlined under the supplement section of the site. I have been a myeloma survivor since 2/94.
Note- I was just reading over my outliining of the supplements that i take and I realized that I have not updated the list to add both curcumin and resveritrol. There are articles in the digest archives discussing the antimyelomic properties of these two supplements- to learn more about curcumin, please visit Margaret's Corner- Margaret is the curcumin queen and there are many members of beating-myeloma.org who supplement with curcumin daily.Â
Good luck- regardless of your stage/diagnosis, try to take a deep breath, learn as much as you can about myeloma and continue to ask questions and interact with survivors and caregivers.
David Emerson
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