CancerCompass message board discussion started by Cyberspacemama on 2/1/2008 http://www.cancercompass.com/message-board/message/all,20567,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My daughter is 50 years old. Had large cyst on ovary removed May 2007 and they only found a tiny bit of cancer, less than a postage stamp the gyne/oncologist said, A1A, so didn't think she should have chemo. In Sept. 2007 her legs began to hurt and she saw a chiropractor thinking it was sciatica, but they swelled so badly she went to ER, and subsequently hospitalized. They discovered blood clots in both legs, both upper and lower. While there, she requested a CA125 and found it had gone up to 94, when it had only been 22 pre-surgery. CT scan showed cancer on kidney, liver, bladder.  First oncologist barged in and wanted to immediately start chemo and put in a filter to protect her from clots. They clashed badly so she was discharged for a few days until she was so sick and couldn't walk at all. Hospitalized for a week and started with different oncologist, during which she had her first Taxol/Carboplatin treatment. She continued to be very ill because of the blood clots. Coumadin didn't help, Lovenox didn't help, finally started on Arixtra for the clots (that's expensive!). She has had a Fentanyl patch 25 mg since the beginning. After 4 rounds of Taxol/Carboplatin, she reminded the doc about CT scan. He found the cancer had NOT responded but had spread even more, now to ribs and lung.She has had 2 treatments with Doxil and is about to start her fourth. So much nausea and vomiting, eats very little. Her hemoglobin is always low. She has had blood transfusions every few weeks and it seems to almost disappear -- the cancer seems to eat it up.We have been referred to a consult with a different gyne/oncologist next week. I hope he has some better thoughts and treatments.  Does anyone else have to have blood transfusions all the time? She has received 15 pints since October but the doc said that wasn't a lot. She has lost her job because she was unable to work since Sept but thankful she will have COBRA insurance for 15 months.I don't understand what some messages call debulking - what is that? Any input you have or suggestions would be welcome. Thanks to all.   Cyberspacemama Fri, 01 Feb 2008 00:00:00 GMT Hi, I am so sorry to hear about your daughter's illness. It is indeed very worrying. Unfortunately, I can't comment on her treatments, but I can answer your question about debulking.Debulking is a surgical procedure, where the surgeon attempts to remove whatever cancer is found in the abdominal cavity.  So, the medical decision that is made is whether debulking would be beneficial to the patient.  I can tell you that in my case, for example, debulking was done once, and when I returned for another surgery with the intention of debulking, while on the operating table, and having 'gone inside', the surgeon decided that 'debulking' could not be done, because as he said: "your cancer is like salt spread over all the abdomen"; therefore it really could not be removed, without affecting other organs. Regarding blood clots, I also had some. They found that a recurrence of the disease was  pressing on a major blood vessel to the leg. So, it could indeed happen. I was on coumadin for several years, but not anymore. It sounds like they are trying to find the right medication for that. I hope this is helpful and your daughter continues to have more treatment options. My heart goes to you and her. G.                                                                                                               I hope that helps and that your daughter continues to have more treatment options. Hawaii Sun, 03 Feb 2008 00:00:00 GMT