What Patients Say About Treatment

From M. D. Anderson Sarcoma: What Can You Expect, part 7
Date: February 11, 2008
Duration: 07:16

What happened after they removed my uterus…I came back after 3 months of checkups, and then on the 6-month checkup it reoccurred in my lungs. So that’s when they decided to do chemo. They did 6 rounds of chemo, shrunk my tumors down to nothing, and that’s when Dr. Benjamin decided to just go ahead and change my chemo, and I could do the chemo back at home in McAllen. The only side effects is soreness; bone, body aches—that kind of side effects. Of course I have been losing my hair and the basic stuff that goes with it. No, I haven’t had any fatigue—a little fatigue but that’s normal. But it’s been good. The side effects are not as bad.

I did 18 months of extensive chemotherapy. After that I stayed in remission for 13 years. It reoccurred in 1997 in the lung; in the right lung. Found the spot on the right lung and actually had it resected; the middle and the lower lobe and didn’t have treatment. And I think 1 year later it reoccurred in the diaphragm; the lower part of the diaphragm. And then from that point on I did chemotherapy again—stayed in remission probably another year and reoccurred in the diaphragm again, up high. And did another reconstruction surgery on the diaphragm and chemo…then in 2004 I had another small reoccurrence; in the clavicle. They did 12 days of radiation and it cleared it up and then I stayed in remission again for 2 more years. Then I was re-diagnosed again in 2006 with 5 small tumors in both lungs.

I’m on 5-day treatments every 21 days. So I’m on a 21-day cycle. I receive Ifosfamide and Doxorubicin which are 2 of the stronger ones, because I also have a secondary cancer. I have secondary breast cancer in my left breast. I get very, very, very little nausea every once in a while but not a lot. I’ve got that under control with good nutritional eating habits and really that’s the only side effect that I have; the very mild nausea. From my understanding, it will be a combined surgery with the cardiothoracic surgeon and a breast surgeon. The plan is to remove the sarcoma and do a bilateral mastectomy at the same time. There are also plans for reconstructive surgery in that same surgery, so I’m kind of excited about that.

So our primary doctor, at home, called down to M.D. Anderson and they told us that they would be doing everything totally different. The chemo—because at Kansas City they were only giving me the dose of a 3 year old and they said they would be giving me a full dose down here at MD Anderson. Being pregnant I was really tired and the side effects—I was just mostly tired and then I got a sore throat and your gums get sore. That’s basically all I’ve had for side effects and then after I had the baby I wasn’t as tired. I was a little bit tired but not as tired as being pregnant.

Glen Allen:
I did nine rounds of chemo, and in the process, they did a chest x-ray, and they found tumors on my t9, t10 rib and part of my vertebrae, and after I did 9 rounds of chemo they removed five inches off my t9 and t10 rib and part of my vertebrae and fused bone back on my vertebrae, and everything looked good, and then they found 3 tumors outside of my right lung, one in the front and 2 in the back. So they started me on some chemo pills, and they seemed to be working, and they decided they weren’t working fast enough, so they put me on this clinical trial.

I went thought a course of six three-week courses of chemotherapy here in the hospital. And the tumor shrank to the point that it was operable. And they removed my spleen, stomach and part of the pancreas and nip of the liver. Here I am. They watched me very carefully every three months initially…catscans and so on…and then it went to six months so, I’ve been having them every six months since then, and that’s four years…spent three or four days in the hospital taking the chemo for 72 hours. Then I got to go home for a week and then come back a week later and start it all over again. They managed it extremely well. I can’t say I was ever nauseous. I was very weak, lost a lot of weight, lost some hair…that sort of thing.

The first day or two… I get home. I feel nauseated, but I don’t ever really get sick. It doesn’t make me tired. They told me that whenever I do chemo, that might make me infertile, and that if I want to have kids, or most people want to have kids, so I need to go to a sperm bank and donate my sperm…not donate it but freeze it or whatever they do it, and so they gave me like a list of people to call, and it wasn’t bad.

It came up overnight, and it was a tumor probably the size of grapefruit, and it got as big as half the size of a football, when they removed it. I had a 15 hour surgery. They told me that I was the risk of losing my left arm. So I just prayed that I would go in there and come out with my arm. I just had my children, and I needed to be able to hold them. I needed to be able to take care of them, and luckily I did. I have pretty good function of my left arm now. I’m going to be starting chemo in about two to three weeks after everything heals.

Chemo was administered in the morning, and in the afternoon, I’d go home and sort of lay down and try to rest and then usually in the evenings my wife and I would go out to dinner, so I mean I felt ok. After they finished all the chemo and radiation, they had to go in and remove the remainder of the tumor, which was still there…even though they had shrunk it quite a bit. I was in the hospital, I think, three days, and I was anxious to get out of there, and they said if I could get up and walk around the nurses station 2 or 3 times a day, they'd let me go, so I started walking around there pretty quick.