Adult Rhabdomyosarcoma – An Overview

Adult rhabdomyosarcoma is a cancer that many people have never heard of. It isn’t one of those cancers that thousands of people get in a year and it isn’t a cancer that you see a lot of money being raised for. Yet it is a cancer that kills every adult that gets it.

I didn’t know anything about Rhabdomyosarcoma until my partner was diagnosed with it. By the time they figured out something was seriously wrong with her it had progressed to Stage 4 and was in her bone marrow. She was 28 years old.

Rhabdomyosarcoma is a cancer that typically attacks children. St Jude’s is one of the leading researchers of the cancer but only for children. The average age of a child who gets this type of cancer is 5 years old although babies can get it as well as teenagers. It is hard to find any information on adults with this type of cancer because it is so rare.

In June 2006 when my partner was diagnosed with rhabdomyosarcoma there where only two types of the cancer, alveolar and embryonal. The difference between the two is that the embryonal cells look like that of an 8 week old fetus while the alveolar cells look like that of a 10 week old fetus. The doctors said that she was lucky to have the alveolar type because it has a better response to treatment. Actually most of her doctors wanted to give up on her. They figured that she had about 30 days to live if they kept giving her blood and platelet transfusions. They couldn’t find a tumor but the cancer was throughout the lymph nodes in her face and in her bone marrow.

St. Jude’s has been researching this cancer for years and they still don’t have 100% cure rate in children. I haven’t been able to find any account of an adult surviving from this cancer. Some countries have reported that they can give a rhabdomyosarcoma patient two years cancer-free by amputating the limb that the tumor is in. Of course this doesn’t help people who have tumors that are not in a limb or their tumor can’t be found.

One day a new doctor showed up in the cancer wing, the doctors at my partner’s hospital rotate between the cancer wing and the cancer clinic. He said that there is always hope and 28 years old was too young to give up hope. He said that the children with rhabdomyosarcoma get 4 different types of chemotherapy. He said that the hospital hadn’t tried it on adults before because an adult is not expected to survive the treatment. He also said that he had seen too many different results in cancer treatments to give up hope.

Now days there are 6-8 different chemotherapies listed for rhabdomyosarcoma. Of course they also have recently developed two different forms of embryonal rhabdomyosarcoma. That probably explains why doctors used to have a hard time get the embryonal cancer to respond to chemotherapy. Of course now researchers have also realized that rhabdomyosarcoma comes from a problem in the DNA and that is usually why it shows up in children.

My partner did survive about 6 months of the brutal chemotherapy regime. It gave her just about 6 months cancer free which was almost long enough to get back to normal. Then it flared up again so the doctor put her through another 6 months or so of the chemotherapy regime. This time when her liver started acting up she went in for 4 weeks of daily radiation on a tomotherapy machine. After all that and she only got about 4 months cancer free. Not much time to do rebuild.

Cancer research seems to be making big strides lately. They are finding out that DNA has more to do with cancers than they previously thought. They are working on ways to target the DNA and suppress the cancer. As they learn more about DNA they can find out more about cancers and hopefully how to cure them.

By the time my partner’s cancer came back the doctors found out about the DNA link to rhabdomyosarcoma. Her current regime is targeting her DNA and seems to be working. It is also easier on her stomach that her old regime. She has already survived 7 months longer than the doctors thought she would. We are hoping that she survives long enough for researchers to apply their new knowledge to her cancer. I always tell her that if I win the lottery, I will fund a researcher center specifically for her cancer. Researchers are so close but they would be closer if they actually started studying rhabdomyosarcoma.

by Jennifer Schroeder


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