Maria Schlegel (Switzerland)
DSRCT Diagnosed at age 31 - Passed Away 4/10/98
From Maria's web page:
|I am 31 years old, married and since last
december mother of a son. I just wanted to start my work again as a
freelance journalist in April when, at once, everything but my survival and
our happy family life became quite unimportant to me and to my husband
Some weeks after the birth of our son Jo an easy birth after an easy, complication-free pregnancy - I kept having a stomache ache. I thought this was normal after giving birth, But when a strong pain started to come and go, I told my gynecologist. She found out I had a bladder infection. With the antibiotics she gave me, the infection eventually went away but the pain was still there. In early April, an ultrasound of my kidney area showed something my doctor thought it was a cyst. On April 12 I was sent to Triemli Hospital, Zurich, for a labroscopy of my belly. What was meant to be a cyst around the ovaries turned out to be a tumor around the intestine. The doctor doing the labroscopy didn't waste any time. As I was already under anaesthetic, she called a surgeon and my husband to get permission for a completely different surgical procedure to the one we had talked about.
I woke up with a big cut in my belly, twenty centimeters of my colon and the small intestine less and with the bad news I had a malign tumor with metastasis on the liver (they had seen them during the surgery). Some days later they had found out it was DSRCT, and a tomography had showed lots of small metastasis on my liver and some very small ones on my lungs. My case was taken over by the chief oncologist of Triemli hospital, a specialist on desmoplastic tumors, professor Hanspeter Honegger. He got all the available information on DSRCT through the Internet and had already started to contact Dr Kushner in New York, whom he met, some weeks later, at the US-oncologist congress to discuss the case.
What Dr Honegger told (and keeps telling) us, is very worrying, but not hopeless. «I would», he said, «not propose this treatment to you if I didn't believe there was a chance». I agreed to do the chemotherapy that was described to us as a «long and hard marathon». It is virtually the same that is done by Dr Kushner in New York.
I recovered very quickly from the surgery and two weeks later we started with the first cycle of chemotherapy. They are four-day-cycles with Adriblastin (4 days), Ifosfamid (3 days), Platinol (1 day). Now I've finished my fourth cycle. Whereas, after the first cycle, my blood recovered fast enough to go back to chemotherapy after two weeks, I now usually have to recover three to four weeks, always with the help of Neupogen, the medicine I inject for five or six days after the therapy and that accelerates the recovery of my white blood cells. Besides that, I take Zantic against too much acid in my stomach and Zyloric. And, for and two days after the therapy, Zofran against vomiting.
Zofran is working very well, and generally we expected much worse side effects than the ones I have had to cope with so far. I don't ever vomit, I don't have any nausea and I'm just tired sometimes during the four days in hospital. When I come home, I always feel very hungry and physically as strong as usual. There were just two problems: After the second therapy a wisdom tooth started to hurt. I had to be hospitalized and received antibiotics for three days because my white blood cells weren't numerous enough to fight the infection. The tooth was pulled out afterwards without any further complications. Then, one week after the third therapy, when my blood cells were at a minimum again, I had a bad therapy-related stomach ache for two or three days.
Besides these complications we have quite a normal life when I'm not in hospital with the only difference that I'm not working and my husband is just working two days a week. We go out, we eat and drink normally, we are looking after and enjoying Jo. Last month we went for a week's holiday to Scotland.
A computer tomography after the second cycle showed nothing worrying in my stomach and that the metastasis on the liver had not grown any more since the first control two and a half months ago. They didn't look at the lungs. After the next, fifth cycle we'll have another complete tomography. In the very best scenario, according to my doctor, it should show a good regression of the metastasis, which will mean that the stem cell therapy can be discussed and prepared.
That's, so far, what happened with my treatment in hospital. It is not the only thing I'm doing, though. It was clear to me from the first day after the diagnosis that I would not rely just on chemotherapy. After reading the book about the Simonton therapy I started to do relaxation and visualisation exercises, the latter with a psychotherapist in Zurich. Besides that, I'm taking ayurvedic medicine I got from the nepalese cancer specialist Doctor Mana who works at his ayurvedic clinic in Kathmandu (e-mail: email@example.com). It's a long story why I'm doing this, but until now I can say that this treatment gives me a lot of hope, sometimes more than the one I get in hospital. Anyway, my doctor in Zurich knows about this and didn't see any problem, and the ayurvedic doctor, too, is convinced that the two treatments won't disturb each other.
Maria Schlegel, Zurich/Switzerland
www.dsrct.com desmoplastic small round cell tumor