CancerCompass message board discussion started by Ginny on 10/8/2005 http://www.cancercompass.com/message-board/message/all,3143,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I have had two rounds of Doxil. My CA125, which was 254 before starting Doxil, has skyrocketed to 1519. A CT scan from last week indicates a rapid growth of cancer in my abdomen. My left leg has swollen to twice the size of my right leg. My oncologist is stopping the Doxil. If anyone out there has had to stop the Doxil for other than side effects, what chemo drug did your oncologist put you on, and how is it working? Thank you and may God be with you all in your battles with this disease. Ginny Sat, 08 Oct 2005 00:00:00 GMT Ginny, never been on doxil (unless there is another name for it). I am also dealing with ovarian cancer (fallopian tube). After the hysterectomy, I was given taxol and carboplatin. For the first relapse, I was given taxetere and carboplatin--could only tolerate 4 treatments, then, just carboplatin. For the second relapse, just carboplatin. Wish you well. Don't hesitate to get a second opinion. Have you considered going to a naturopathic doctor, too? Philly Tue, 11 Oct 2005 00:00:00 GMT Elaine - thanks for your input. I do have a second oncologist - a gyn specialist from Indianapolis. I saw him this past Friday. He wants to do a surgical biopsy on Oct 28th. He will send some of the tumor tissue to a lab which will try to determine which of five remaining chemotherapy drugs would give me the best response. So that is what I am going to do, even though it makes me nervous to wait three more weeks for any treatment to start. I'm not sure just what a naturopathic doctor does. Are you going to one yourself? If so, what benefits do you feel you are deriving from his/her treatment? Thanks. Sincerely, Ginny B. Ginny Sun, 16 Oct 2005 00:00:00 GMT Ginny, I understand your nervousness for waiting 3 more weeks. I don't know why your doctor doesn't try something else in the mean time. I thought carboplatin was the main drug in treating ovarian cancer--although some do not respond to it. A naturopathic doctor is considered "alternative". They are not recognized in Kentucky, therefore, insurance does not cover it. You purchase medicine from them (one reason my regular doctor doesn't like them). A lady in a support group that I go to suggested it. A naturopathic doctor helped her--after a year following her last chemo, she could barely get out of a chair on her own. She went to a naturopathic doctor and she was back 80% within a month. I am going to one to help postpone or hopefully prevent another relapse. I was told that they really help people while on chemo--help prevent getting sick and making the chemo more effective. I have had only one appointment with one--she gave me a list of blood tests she wants my primary care physician to do (by my regular doctor doing these tests, insurance will cover it). I will let my doctor know of any medication I get from my naturopathic doctor. Since I just had my 2nd relapse, I am looking into alternative treatments, juicing, using essential oils, and meditating. Is there a chance your doctor can refer you to MD Anderson or Cancer Centers of America? Wish I had done one of these originally. Keep me informed. You are in my prayers. Elaine Philly Mon, 17 Oct 2005 00:00:00 GMT Dear Ginny, Sorry Doxil is giving you such a hard time. I am on it and have been experiencing moderate side affects. In regard to your problem, there is a test called "A Drug Resistance Assay" It tells you what chemotherapy is best to use and which is worst. In other words, which would be most effective in killing off the cancer cells and which would be least effective. Every person is different. In the world of oncologists, this test seems to be ignored. They usually will start everyone on the standard in the community which is Taxol and Carboplatinum (for ovarian cancer). These were at the bottom of my list. This test is done by the Oncotech Company and has to be done at the time of surgery. The surgeon has to "harvest" some cancer cells and compare them to the various chemos in a petri dish to see which has a better kill off rate. Its sort of like a culture and sensitivity, if you know about how those work. At CTCA, My Dr. does go by this test and actually knew the man who invented it who himself said it was not accurate (many years ago) but has since reversed his opinion on it. Others have not caught up. Ask your surgeon if you had a Oncotech Assay for drug resistance/efficacy. If he says he doesn't believe in it, then find someone who does. It lists out 10 different chemotherapy meds. Doxil was at the top of my list for efficacy. Now, this test can tell you nothing about how you may experience side effects. For side affects, guided imagery and hypnosis are used for helping allay them at the CTCA. Hope that helps! Kathleen W., Cancer survivor and RN. Sedonalady Tue, 18 Oct 2005 00:00:00 GMT Kathleen, thanks for this information. I think the surgery biopsy I have scheduled for Oct. 28th must be similar to this test. The gyn oncologist is going to take some tissue from the tumor in my abdomen (close to the bowel) and send it to a lab. The technicians and doctors will then determine which of five chemo drugs (they have already eliminated Doxil) would give me the best results. It is actually a research study that is blind, so my doctor does not choose the drug himself. However, if it does not work, another of the five will be tried, just as if I was not in the study. This gyn oncologist, Dr. Gregory Sutton, is supposed to be one of the best in the nation. He thinks another two or three weeks won't make that much difference, so I am trying to believe that not having any treatment for this long won't cause me any irreversible damage. Good luck with your treatments and God bless. Ginny B. Ginny Wed, 19 Oct 2005 00:00:00 GMT Dear Ginny, Blessings to you as well on your healing journey. I see how a biopsy could be used in the Onco-test that I spoke of. It does sound like this MD is on the right track. I am not an Ocologist, just a Nurse that has had ovarian cancer for over 10 years. In regard to your concern about stopping therapy for 3 weeks to do this test, I would put my money on getting on the CORRECT chemotherapy as opposed to being on the wrong therapy, which probably would cause more problems than help. After my surgery in April, I had to wait for 2 months because my surgical site dehissed (that is it separated)2 days after the surgery, while in the hospital. When I returned home, I had to have home health nurses come to attach me to this wound vac, which is a machine attached to this sponge-like dressing that they put in this gaping hole I had in my abdomen. It made my wound heal in half the time. During this time, I could not have chemo as chemo attacks any new, fast growing cells making the chances of healing very slim. I couldn't go around with an open wound like that and be subject to all kinds of infections which may have eventually led to my demise. It was bad enough that I got MERSA thanks to the hospital that did the surgery, a very resistant bug and now have to be in isolation until 3 series of cultures come back normal. I just finished my last one. When I go to the CTCA I have to be in a private room and can't attend all the neat activities that they have for outpatients. Sometimes I get ignored or forgotten about but then sometimes the privacy is nice. I'm glad it's coming to an end though. Well again, blessings and God's guidance on your healing journey! I'll keep you in my prayers, especially on the 28th! Warm regards, Kathleen Sedonalady Wed, 19 Oct 2005 00:00:00 GMT Dear Kathleen, Thank you so much for your messsage. I feel so much better emotionally after reading it. In fact, compared to what you went through and are still going through, my worries don't seem so bad. You are a real blessing to those of us who are scared and confused about what is happening to us. May God keep you in his loving hands. I am praying for you also, Kathleen. Sincerely, Ginny Ginny Sat, 22 Oct 2005 00:00:00 GMT Check out Mayo clinic "measles vaccine" clinical trial. Angelben Thu, 27 Oct 2005 00:00:00 GMT Ginny B - Hello! I just found this board by Googling on Doxil. Ginny, you would never believe this, but my name is also Ginny (C) and I live in Greenfield, which is 20 miles east of Indianapolis! I have had OVCA for a little over two years, and have tried taxol, carbo, topotecan, taxotere, gemzar, & cisplatin. Latest treatment was gemzar & cisplatin, and my CA125 rose 115 points in 7 days (to 430). I begin doxil next week. I read your post about your doc. Sutton but don't recognize the name. I had Dr. Moore for my surgery at IU Med. Ctr. My regular onc. is an east side practice and I go to Community East for my chemo. Isn't it a small world and a coincidental one??? How did your surgery on 10/28 go? Ginny C (ginind) Ginind Fri, 04 Nov 2005 00:00:00 GMT