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When a Person Thought I Was Undergoing Chemo for Cancer, Not Lupus

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I was recently asked by an acquaintance what kind of cancer I had since I’m undergoing chemotherapy. When I informed this person I didn’t have cancer, you would have thought I just told her I was a unicorn flying over a rainbow.

It’s unfortunate there is such a misconception that immunosuppressant therapy is only for cancer patients. This saddens me because it proves there’s a lack of education and awareness concerning autoimmune diseases. If people only really knew what some people endure day in and day out with an autoimmune disease.

Ironically, my husband just overcame kidney cancer without a single dose of chemotherapy, yet here I am doing chemotherapy without cancer. This truly baffles people, and honestly, sometimes it baffles me, too.

Truth be told, I had no clue what lupus was after my doctors first told me about it. I also had no clue that as the disease progressed that chemotherapy was in the treatment plan for me.

Another misconception is that immunosuppressant therapy cures autoimmune diseases, which is not true because there is no cure for lupus at this point. The use of these drugs for diseases such as lupus is to slow the progression of the disease and to help control an overactive immune system with the hope of putting the disease in remission.

Many have asked if lupus is a form of cancer, since cancer patients can also be treated with chemotherapy. No, lupus is not a cancer, nor is cancer lupus.

The dosage of chemotherapy drugs for cancer patients is much higher than for those with autoimmune diseases like lupus and rheumatoid arthritis, although the side effects can be just as severe as someone receiving higher dosages. For myself, I have severe nausea, hair loss and extreme fatigue. Common side effects can include infertility, diarrhea, low white blood cell counts and, of course, those I’m currently experiencing.

I’m only about two months into my chemo treatments. My first round was an IV treatment, and I had an allergic reaction, so we have decided to go the oral route this time.

I have yet to see any positive changes. Rheumatologists agree it can take weeks to months to see benefits of this form of treatment for autoimmune diseases. The benefits are seen gradually.

The more we can provide education on autoimmune diseases, the more people can understand and empathize with our situations. The more people understand the diseases, the more they can understand our treatments.

Lead photo source: Thinkstock Images

Originally published: July 21, 2016
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