AIDS Related Lymphoma

[Swimmer8176]

I was diagnosed with NHL at the end of summer 2007 and began radiation therapy at the end of September 2007. Although everyone told me that radiation was the easiest treatment to endure, I found myself to be completely exhausted (more tired than I think I have ever been in my entire life). The radiologist told me that it was abnormal to be so tired, especially since I was just 26 years old and had been very healthy up until this point. By the end of November, I had completed approximately 1 month of radiation (5 times a week).

During the radiation treatment, my body swelled up like a balloon and I began to have other problems that I hadn't had before. My hands swelled and it was difficult for me to walk and use my knees due to all the swelling. I met with the radiologist who told me that it had nothing to do with the radiation and sent me to see my primary physician for further testing. After performing a few blood tests, my primary care physician put me on prednisone and some pain meds (they found that my ANA level was significantly elevated). Eventually the swelling went down, but the knee pain remained. My knees got so bad that I was unable to work for a while (I had trouble just walking a little bit, couldn't drive, and forget about walking up or down stairs).

At this point I was referred to a rheumatologist. The rheumatologist did some tests and found some markers for a connective tissue disorder (primarily Lupus and Scleroderma) and shared all the information with my other doctors. My oncologist primary care physician and rheumatologist conferred and agreed that the best thing was to keep going with the care they had planned on prior to these new symptoms (radiation and Rituximab).

In January of 2008 I underwent 4 treatments of Rituximab. At this time the doctors expected that Rituximab would elleviate my knee pain because they said that the signs pointed to Lupus in addition to the NHL. A few months after my treatment, and no relief from the knee pain, they decided that they needed to rethink everything. A little while and a few tests later, I was diagnosed with a non-specific connective tissue disorder. It seems to me that they are all just stumped. They really don't know what to make of all of my symptoms (hot flashes, extreme sensitivity to the sun, hot spots, random rashes, random swelling of the body, eye pain and sensitivitiy to light, very bad headaches, ringing in the ears, exhaustion, trouble focusing, jaw problems, etc.)

It has now been approximately 3 months since I was told that my cancer was in remission and I am feeling worse than ever. I have all kinds of weird symptoms and I don't seem to be getting any better. My eyes are now involved and I was recently given, by the eye doctor, steroid drops to put in them all the time.

I am just wondering if anyone else with NHL has been diagnosed with anything else. From the research that I have done on the Internet, it seems that these diseases and NHL can sometimes be linked. Has anyone else experienced anything like this before?

Thank you and best of luck to everyone!

~ Swimmer8176

[Abbys]

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[reneewink]

Have your difficulties eased? I just posted a query re: after effects of chemo for NHL. My husband endured 8 chemo infusions with little difficulty and now he's falling apart. I think he's having some neourological issues -- although he still can talk about point spreads for football games, etc., today he didn't remember that his mother died years ago, and needed some directives on answering his cell phone. He's sleeping for most of the day and night.

I'm terrified. I'm hoping this eases off.

He also had problems with swelling but, just today, there is no notable swelling in his legs or feet. His last session was mid-October. All the scans are great, but I'm afraid to leave him alone and I took his car keys.