Friday, December 16, 2005

Lymphedema and Lymphoma - an Update

It has been awhile since I put an update on my lymphedema and lymphoma so thought I would sharewas has been happening.

I went through four weeks of Rituxan chemo in August/September. I experienced immediate results and even a tumor of the lower back calf actually shrank and started to look like it was caving in on itself.

The results were shortlived however, and the tumor resbustly sprouted back to life...seemingly to grow actually faster then it had before.

So, I was off to have a "punch" biopsy. The results took forever and getting an actual diagnosis was even more complicated. This was a result of possible inflammation and the fact that this tumor had already been hit with chemo.

But, what it showed was more then interesting and has caused more questions then it provided answers.

The B cell lymphoma is still definitely there and apparently active. But the results also showed that about 40% of the cell population of the tumor was comprised of "T" cells which also came back with a positive stain for CD3. Is this because of possible inflammation...or are we witnessing the birth a yet another lymphoma? Possible T cell lymphoma? We honestly can't say and don't know.

Another very interesting report was on the skin itself. My lymphedema is caused by "hypoplasia" of the lymphatics. This means the lymphatic system is constricted and/or missing important parts. Tests when I was a teen showed that I am missing significant lymph nodes in the inguinal regions.

However, the pathologist reported lymphangiectasia of the skin. This means that the lymphatics of the skin are actually dialated instead of constricted.

I had never heard of this with primary/hereditary lymphedema. But, apprently after much research, I have found this is not so unsual with lymphedema as long standing as mine.

The deep lymphatics are constricted, while the superficial lymphatics are dialated....both cause the lymph system to be inefficient and unable to move fluids properly...which of course adds to the leg swelling.

I had another round of Rituxan on December 2nd. Kind of disappointed as this time that tumor has not even slowed down. Not only has it continued to grow, but the area surrounding it has changed significantly too.

After 53 years of lymphedema, I am still learning and still finding out new things about this condition.

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