Post by admin on May 6, 2005 18:48:40 GMT -5
Any discussion about this disease is welcome . . I do not know in what direction this type of thread might take. I suppose there are still many of us who are new to the cancer world, new to sarcoma, and new to this specific disease. In fact I am so new that I am not entirely certain of the difference between the various desmoplastic titles. My son was diagnosed with Desmoplastic small round BLUE cell tumor. Which I am assuming is the same type of cancer as desmoplastic small round cell tumor. I have also seen the term, Intra-abdominal desmoplastic small round blue cell tumor.
Originally I had thought to separate out the Childhood cancer from the Adult cancer . . but the line seems a bit blurry to me. My son is 17 and he is being treated as a pediatric cancer patient. In all honesty, I do not know what the difference is.
I do think that I will record his medical condition in this thread. From what I have read it isn't that dissimilar from others who have been inflicted with this type of cancer.
So, the facts, as I know them. Nathan is 17 years old, and a Junior in high school. He played JV basketball for the first time since Freshman year. His coach was new and had his team basically working hard for them all to become physically fit. Nathan had a complete physical in December. Nothing remarkable was noted at that time. But Nathan was complaining to me that he was having a difficult time keeping up with the other boys during his practice sessions. Like any mother of a typical teen I just told him to try harder.
In mid January the entire basketball team came down with the flu, including Nathan. He never rebounded from that episode, and I thought he might have mono, so I scheduled a doctors appointment. In the meantime Nathan became physically weaker . . and oddly enough his face and shoulders began to look gaunt. The rest of his body, however, still seemed okay . . although truthfully I thought it was odd that he would be going through all this excerising and not lose weight. In High school Nate has always been a big kid, not over weight, but not skinny either. So, I really didn't think anything of it until I saw him play basketball towards the end of January. He literally could not run down the floor, although he exerted a tremendous effort. It is than that we became really concerned.
He went to the doctor, who sent him for blood tests. Our doctor also could not explain the gaunt look . . and I wish right than and there our doctor had poked Nathan in the stomach . . but he didn't. Our doctor thought that he just might be having a growth spurt. We were sent for blood work. It came back showing that he was anemic and had a thyroid condition. Our doctor also noticed indications of an infection . . but was unable to explain what caused it.
We made an appointment to see an Endocrinologist for the thyroid condition. Nathan was put on Levothyroxine. In the meantime, while we waited for the appointment, Nathan seemed to be getting sicker and sicker. For one thing, his stomach was bloating . .increasing in girth every day. At first I thought it had something to do with hypo thyroidism. But, it was confusing because he did not have all the symtoms. I called his doctor who became alarmed when I described Nathans stomach. But, he thought we should wait for the Endocrinologists report. The appointment was the next day so we agreed. That was March 3, 2005.
Nathan kept his appointment. The Endo took one look at him and asked if there was something else going on with Nathan. I know now that he suspected cancer, but did not want to tell us. He called our pediatrician and than we were sent home (a 2 hour drive, by the way). Nathan's doctor saw him immediatly, and I could tell he was alarmed by that time. He tried to rule out everything that could possibly be causing the bloating.
Finally he sent us to the local hospital for xrays, and than to the Emergency room to hold us. There had been concern at first that a long two inch splinter had been embedded into his belly. A surgeon came and spoke to us, and said that there was no foreign object there. Our doctor than made phone calls searching for the best hospital to send Nathan to. He finally chose the Barbara Bush Children's Hospital in Portland, Maine. There is a fine new pediatric cancer ward and clinic there, and I am sure our pediatrian had that in mind (though he didn't tell us - he just said Nate would receive good care there and the doctors would get to the bottom of his illness). Nathan was sent there in the middle of the night as an emergency patient.
Once in Portland, it took the doctors only a few hours to deliver the news that this was cancer. They were caring and compassionate, but there is no easy way to tell a child and his parents that we were dealing with cancer. Nathan was examined, xrayed, and had a CT within 24 hours. He also underwent a biopsy of his lympth nodes, bones, bone marrow, and had a central line placed into his chest at the same time. A team of doctors came in and basically gave us even more cancer news. They were hoping that it was lymphoma, but of course the news kept getting worse and worse. It was a sarcoma, and he was a stage IV because the cancer had spred from his abdomen to his chest wall, with spots on his lungs and liver. Probably, the most horrifying news I've ever heard in my life. I'm really not sure how many tumors he has, just alot . . plus one large one around his belly button that actually you can see (well, now you can see it, before he was too bloated)
The doctors still could not confirm the diagnosis, but suspected that it was desmoplastic small round blue cell tumor (or, as Nathan says, "Oh great. It's bad enough to have cancer, but why does it have to be a rare one too.") They sent a speciman away for verfication. They wanted to make sure of exactly which cancer he had before he began chemotherapy. We were told that he was not operable at that time because he had too many tumors to remove safely. As soon as the doctors had confirmation of the desmoplastic small round blue cell tumor, Nathan started chemotherapy.
He started with Vincristine, Doxorubicin, and Cytoxan. Because he was really still quite bloated he had been having a hard time peeing. So the doctors determined that he needed to have a cathetar. That turned out to be pretty traumatic. Nathan immediatly began to have spasms. He was terrribly uncomfortable. And, he ended up almost afraid to move. If he even flinched he had a spasm. The chemo was done in three days, but his doctor than decided since Nathan had a cathetar to try and get rid of the excess fluid with a diuretic. He began peeing volumes. All in all he shed almost 50 pounds of fluid.
Just as he came off chemo, the doctors decided to keep the cathetar in to help drain off all that fluid. Nate was miserable with the spasms, but getting rid of the fluid was making him more comfortable. Than he woke up one morning, got up to go to the bathroom, and began to have breathing problems. He plummeted to about 50% oxygen. He was transported quickly to the Critical Care Unit. He had xrays and another CT was ordered. At the time there was talk about inserting a breathing tube for him, but his oncology doctor pulled me aside. He explained that he thought that Nathan had blood clots causing the problem, but until he saw the CT he would not be sure. He said it could also be tumors growing in his lungs. He said that I might need to make a decision about placing breathing tubes in or just taking him home. Not a very fun moment. To their credit though, the CT was done quickly, and I knew within an hour that it was indeed blood clots in both lungs.
Once we knew it was blood clots and not tumor, than Nathan could be treated. He is now on coumadine to thin his blood. The blood clots have thinned out, and no longer are giving him trouble.
Nathan remained in the hospital for one month and 3 days. Basically the majority of the time was spent trying to get rid of the fluid and than trying to adjust his blood thinner. The day that he had his second round of chemo was the same day that they finally solved the blood thinner issue. Nathan came off the IV for the blood thinner, but was hooked up for the chemotherapy. The second round he received Etoposide and
Ifosfamide.
Inbetween the chemotherapy he is receiving the G-CSF NEUPOGEN injections.
His last chemotherapy cycle was April 21st. He had a repeat of the Vincristine, Doxorubicin, and Cytoxan. He also had a CT to check on his progress. The doctors reported a 20% decrease overall. Nathan is scheduled to return for Cycle 4 on May 12th for more Etoposide and Ifosfamide.
Minor occurances, other than the expected nausea has been an odd rash around his central line. The rash has also spred to the backs of his arms. He has been treated with nystatin and hydrocortisone since they are unsure if it bacterial or an allergy. The central line rash has cleared up, but he is still bothered on his arms.
His appetite fluctuates with the chemo. He eats well in between, not so well immediatly after chemo. Not unexpected.
One oddity that has occured is that Nathan has noticed that the large tumor in his belly has moved in its position. It used to be on his left side, but now it is floating around his belly button area. We're really not sure what is going on there, but I have mentioned it to his doctors.
We live about two hours from the cancer clinic and his oncology doctors. We have a critical care nurses come into the home to draw blood. They are also available as needed. So far, we've done okay. I currently give him the G-CSF NEUPOGEN injections. I'm not very good at it, but he doesn't complain.
All in all, his spirits are good, and other than the cancer he is medically stable.
Originally I had thought to separate out the Childhood cancer from the Adult cancer . . but the line seems a bit blurry to me. My son is 17 and he is being treated as a pediatric cancer patient. In all honesty, I do not know what the difference is.
I do think that I will record his medical condition in this thread. From what I have read it isn't that dissimilar from others who have been inflicted with this type of cancer.
So, the facts, as I know them. Nathan is 17 years old, and a Junior in high school. He played JV basketball for the first time since Freshman year. His coach was new and had his team basically working hard for them all to become physically fit. Nathan had a complete physical in December. Nothing remarkable was noted at that time. But Nathan was complaining to me that he was having a difficult time keeping up with the other boys during his practice sessions. Like any mother of a typical teen I just told him to try harder.
In mid January the entire basketball team came down with the flu, including Nathan. He never rebounded from that episode, and I thought he might have mono, so I scheduled a doctors appointment. In the meantime Nathan became physically weaker . . and oddly enough his face and shoulders began to look gaunt. The rest of his body, however, still seemed okay . . although truthfully I thought it was odd that he would be going through all this excerising and not lose weight. In High school Nate has always been a big kid, not over weight, but not skinny either. So, I really didn't think anything of it until I saw him play basketball towards the end of January. He literally could not run down the floor, although he exerted a tremendous effort. It is than that we became really concerned.
He went to the doctor, who sent him for blood tests. Our doctor also could not explain the gaunt look . . and I wish right than and there our doctor had poked Nathan in the stomach . . but he didn't. Our doctor thought that he just might be having a growth spurt. We were sent for blood work. It came back showing that he was anemic and had a thyroid condition. Our doctor also noticed indications of an infection . . but was unable to explain what caused it.
We made an appointment to see an Endocrinologist for the thyroid condition. Nathan was put on Levothyroxine. In the meantime, while we waited for the appointment, Nathan seemed to be getting sicker and sicker. For one thing, his stomach was bloating . .increasing in girth every day. At first I thought it had something to do with hypo thyroidism. But, it was confusing because he did not have all the symtoms. I called his doctor who became alarmed when I described Nathans stomach. But, he thought we should wait for the Endocrinologists report. The appointment was the next day so we agreed. That was March 3, 2005.
Nathan kept his appointment. The Endo took one look at him and asked if there was something else going on with Nathan. I know now that he suspected cancer, but did not want to tell us. He called our pediatrician and than we were sent home (a 2 hour drive, by the way). Nathan's doctor saw him immediatly, and I could tell he was alarmed by that time. He tried to rule out everything that could possibly be causing the bloating.
Finally he sent us to the local hospital for xrays, and than to the Emergency room to hold us. There had been concern at first that a long two inch splinter had been embedded into his belly. A surgeon came and spoke to us, and said that there was no foreign object there. Our doctor than made phone calls searching for the best hospital to send Nathan to. He finally chose the Barbara Bush Children's Hospital in Portland, Maine. There is a fine new pediatric cancer ward and clinic there, and I am sure our pediatrian had that in mind (though he didn't tell us - he just said Nate would receive good care there and the doctors would get to the bottom of his illness). Nathan was sent there in the middle of the night as an emergency patient.
Once in Portland, it took the doctors only a few hours to deliver the news that this was cancer. They were caring and compassionate, but there is no easy way to tell a child and his parents that we were dealing with cancer. Nathan was examined, xrayed, and had a CT within 24 hours. He also underwent a biopsy of his lympth nodes, bones, bone marrow, and had a central line placed into his chest at the same time. A team of doctors came in and basically gave us even more cancer news. They were hoping that it was lymphoma, but of course the news kept getting worse and worse. It was a sarcoma, and he was a stage IV because the cancer had spred from his abdomen to his chest wall, with spots on his lungs and liver. Probably, the most horrifying news I've ever heard in my life. I'm really not sure how many tumors he has, just alot . . plus one large one around his belly button that actually you can see (well, now you can see it, before he was too bloated)
The doctors still could not confirm the diagnosis, but suspected that it was desmoplastic small round blue cell tumor (or, as Nathan says, "Oh great. It's bad enough to have cancer, but why does it have to be a rare one too.") They sent a speciman away for verfication. They wanted to make sure of exactly which cancer he had before he began chemotherapy. We were told that he was not operable at that time because he had too many tumors to remove safely. As soon as the doctors had confirmation of the desmoplastic small round blue cell tumor, Nathan started chemotherapy.
He started with Vincristine, Doxorubicin, and Cytoxan. Because he was really still quite bloated he had been having a hard time peeing. So the doctors determined that he needed to have a cathetar. That turned out to be pretty traumatic. Nathan immediatly began to have spasms. He was terrribly uncomfortable. And, he ended up almost afraid to move. If he even flinched he had a spasm. The chemo was done in three days, but his doctor than decided since Nathan had a cathetar to try and get rid of the excess fluid with a diuretic. He began peeing volumes. All in all he shed almost 50 pounds of fluid.
Just as he came off chemo, the doctors decided to keep the cathetar in to help drain off all that fluid. Nate was miserable with the spasms, but getting rid of the fluid was making him more comfortable. Than he woke up one morning, got up to go to the bathroom, and began to have breathing problems. He plummeted to about 50% oxygen. He was transported quickly to the Critical Care Unit. He had xrays and another CT was ordered. At the time there was talk about inserting a breathing tube for him, but his oncology doctor pulled me aside. He explained that he thought that Nathan had blood clots causing the problem, but until he saw the CT he would not be sure. He said it could also be tumors growing in his lungs. He said that I might need to make a decision about placing breathing tubes in or just taking him home. Not a very fun moment. To their credit though, the CT was done quickly, and I knew within an hour that it was indeed blood clots in both lungs.
Once we knew it was blood clots and not tumor, than Nathan could be treated. He is now on coumadine to thin his blood. The blood clots have thinned out, and no longer are giving him trouble.
Nathan remained in the hospital for one month and 3 days. Basically the majority of the time was spent trying to get rid of the fluid and than trying to adjust his blood thinner. The day that he had his second round of chemo was the same day that they finally solved the blood thinner issue. Nathan came off the IV for the blood thinner, but was hooked up for the chemotherapy. The second round he received Etoposide and
Ifosfamide.
Inbetween the chemotherapy he is receiving the G-CSF NEUPOGEN injections.
His last chemotherapy cycle was April 21st. He had a repeat of the Vincristine, Doxorubicin, and Cytoxan. He also had a CT to check on his progress. The doctors reported a 20% decrease overall. Nathan is scheduled to return for Cycle 4 on May 12th for more Etoposide and Ifosfamide.
Minor occurances, other than the expected nausea has been an odd rash around his central line. The rash has also spred to the backs of his arms. He has been treated with nystatin and hydrocortisone since they are unsure if it bacterial or an allergy. The central line rash has cleared up, but he is still bothered on his arms.
His appetite fluctuates with the chemo. He eats well in between, not so well immediatly after chemo. Not unexpected.
One oddity that has occured is that Nathan has noticed that the large tumor in his belly has moved in its position. It used to be on his left side, but now it is floating around his belly button area. We're really not sure what is going on there, but I have mentioned it to his doctors.
We live about two hours from the cancer clinic and his oncology doctors. We have a critical care nurses come into the home to draw blood. They are also available as needed. So far, we've done okay. I currently give him the G-CSF NEUPOGEN injections. I'm not very good at it, but he doesn't complain.
All in all, his spirits are good, and other than the cancer he is medically stable.