I saw both the oncologist and the rheumatologist yesterday. Good news from both of them. My Free Light Chain numbers are still going down, although not as dramatically as in the beginning. My Lambda was up at 30 at one point, so seeing it at 4.67 is great (normal is 0.57-2.63) . In other words, I am still making good progress reducing the amount of amyloid being produced in my body.
Although my heart's NT Pro BNP came up slightly, my energy level and improved heart symptoms indicates the heart has improved. There is some controversy anyway about using NT Pro BNP as a marker for how the chemo is working so my energy level and reduction in heart failure symptoms are probably the best markers. We aren't sure how the kidney's may have improved but may do one of those 24-hour urine tests soon. Thank god for my oncologist!
I am so grateful to have found my rheumatologist and know there are reasons for my pain. Apparently there are areas where amyloid can build up in connective tissue and in bones. There is an arthritis that is associated with the build up of amyloid.
My rheumatologist suggested physical therapy for me. I am scheduled for my first treatment mid month. I am really looking forward to it! A friend that found me through one of the amyloidosis lists and has similar issues found physical therapy very helpful so I am looking forward to it. It appears that I don't have the bone pitting that seems associated with the arthritis like symptoms that amyloid can produce, but I do the soft tissue problems with connective tissues and inflammation. I also have bursitis in the hips that the first steroid shots in my hips helped.
I have some links to share. First are guidelines for identification of systemic amyloidosis organ and soft tissue involvement, and criteria for remission that the experts put together at the big conference in France a few years back. Although it came out in 2005, they are being circulated on the lists as the latest thing on the criteria for remission. I thought it was interesting and had some information that I was not familiar with. If interested, you can download a PDF at the link below (It automatically downloads it).
http://www3.interscience.wiley.com/cgi-bin/fulltext/110573875/PDFSTART
Next is a link to Chris' Journey and fundraising for the Amyloidosis Foundation. A nice article about the bike ride Chris' son is doing to raise awareness can be found at:
http://www.metrowestdailynews.com/news/x1556828605/Spitz-Son-is-riding-for-moms-life
You can read about the ride at:
http://chrisjourney.com/
Stay healthy my friends! I'll tell you all about the new puppy in another post.
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