CancerCompass message board discussion started by Joanna C. on 6/1/2003 http://www.cancercompass.com/message-board/message/all,833,0.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/ Does anyone have experience with this drug? I have a friend who is starting on this in June. Thank you. Joanna Joanna C. Sun, 01 Jun 2003 00:00:00 GMT I am in my 3rd year of treatment for stage 3 ovarian. my tumor marker climbed back to 80 8 months ago and I was started on Doxil. I had a severe reaction after 2 treatments, i.e., my hands swelling to the point I could not use them - very painful, and some swelling in my feet. The treatments were changed. I'm now on Topotecan (Hycamtin), which is keeping it in check, the marker now down to 41. This is all I can tell you except to know not all experience the same side-effects. Marilyn S. Mon, 02 Jun 2003 00:00:00 GMT Thank you Marilyn. I am glad this new drug is working for you and that you will be remission soon. Keep in touch. I was diagnosed in May 01, also stage 3. Warmest regards, Joanna Joanna C. Mon, 02 Jun 2003 00:00:00 GMT I received Doxil for approximately 10 treatments for Stage 3C ovarian cancer last year. It was one of the most tolerable chemo drugs I have received thus far (for 3 years). Had minimal side effects. Felt great! The only thing I experienced was that my skin was prone to a rash for the first 3 days after treatment...but knowing this, was able to avoid too much of a problem. I would highly recommend the use of this drug as long as your friend is able to tolerate it. Debbie B. Mon, 09 Jun 2003 00:00:00 GMT Hi, thank you very much for writing. I was diagnosed in May 01, stage 3. How are you doing? I have forwarded your reply to my friend. Rgds, Jo Joanna C. Mon, 09 Jun 2003 00:00:00 GMT Hi. My mother has been taking chemo for ovarian cancer off and on for almost 5 years. Recently she was taking Topotecan (for about 2 years) and her CA-125 began to rise. She was put on the Doxil (along with 3 other women locally). I hovered over her for about 4 days after each treatment and because she took it easy (no hot foods or beverages, no hot baths, lounging in loose clothing, etc) she never had a bit of trouble, and I thank God for that. However, after 3 treatments, she and the other women that had been put on the Doxil were all taken off - their CA-125 numbers shot through the roof (into the thousands)...She is now back on Taxol and Carboplatin and by the grace of God, her numbers have been going down. Good luck with the Doxil, but keep a close watch on your counts, and you need to take it extremely easy for a few days after each treatment and you may not have any of the rashes, etc. Good Luck! Susan G. Tue, 10 Jun 2003 00:00:00 GMT Thank you very much, Susan. I am glad to hear that your mum's numbers are coming down. Just to share a little with you, I am also diagnosed with Ovarian cancer, stage 3 in May 01. I have since changed my diet and lifestyle - I eat more of the food that are known to be anti-cancer - garlic, broccoli, etc. But since I took up Qigong in Sept (chilel.com), my fatigue is gone,and so is my constant fear that the cancer may be back. I will forward your letter to my friend, she just started on it today. Thank you for writing. I wish you and your mum all the best. Warmest regards, Joanna Joanna C. Tue, 10 Jun 2003 00:00:00 GMT I have been on different cancer chemotherapies for over 5 years. At first I was taking Taxol and Carboplatin. That brought my count down but a year later it was up again and was again put on the Taxol and Carboplatin. On my last treatment of that session I developed a severe reaction to the Carboplatin. My count remained down for a couple of years. Then the count was up again and I was put on Topotecan. The first few treatments seemed to help and then the count was up again. Treatment was changed to Taxotere, which also helped for a short while. I was then put on Doxil. All of the previous treatments made me lose my hair but the Doxil did not do that. The only reaction that I had from the Doxil was hand and foot syndrome. For awhile my heels were raw and I could not wear shoes. My last treatment was in February and I am feeling OK. Now...just a little tingling in my feet at times. The Doxil brought my cancer count down to normal range but it is rising again. They have me on Tamoxifen now. Marie W. Tue, 10 Jun 2003 00:00:00 GMT Dear Marie, thank you for writing. I am sorry your counts keep going up. Would you like to try qigong? (chilel.com) I kept recomending it to everyone because I benefited from it (fatigue was gone just one week after I started on it - have been doing it daily since, just 30 mins. everyday - I learned it from tapes and books). I am also eating more of the anti-cancer food, esp garlic. Lots of it, both raw and cooked. I will forward your note to my friend. Thanks again, and take care. Jo Joanna C. Tue, 10 Jun 2003 00:00:00 GMT Joanna, My name is Lucy J. Yes I had 3 rounds of Doxil. Within 5 minutes of the first infusion I had an allergic reaction. They discontinued the chemo for that day & scheduled me for the next week. I was to be pre-medicated before each infusion with a cortisone/steroid several hours before each infusion. Had no noticeable problem until I was approaching a week before the 3rd infusion. It looked like prickly heat on the trunk of my body. It didn't itch or bother me in any other way. Two or more weeks after my 3rd infusion of Doxil my entire trunk of my body looked like I had severe sunburn. I felt like it too. Ran a slight fever and was very weak and tired. Was unable to get in touch with my doctor or a dermatologist I use to work for because it was the Labor Day weekend. When I finally saw my dermatologist he put me on a decreasing dose of prednisone and it started helping me recover from the burn. I actually peeled just like with bad sunburn. I also had some funny black dots under my big toe toenails and the toenails started to pull away from the toe. It didn't hurt but for some reason walking was difficult. They discontinued my last 3 infusions of Doxil, gave me a rest for one month til my body healed, then started me on Adriamyicin for 3 more infusions. I was never nauseated because they gave me meds for it during and after each infusion. I have had CT scans every 3 months since and all have been CLEAR. My cancer is called Leiomyosarcoma, very rare. Only 4 in one million get it. It was a recurrence that started growing on the omentum. First surgery was a complete hysterectomy to remove a fibroid in the uterus & they told me it had a slight leiomyoma in it that required no chemo or radiation. Just follow up visits, Internal and CT scans. Within 3 years it was back with a vengeance. This time I learned how to use the computer and started my own search for knowledge. Good Luck Joanna to you and your friend. I will keep you both in my prayers. I know they work. Please send me a message if you need any further help. Lucy J., ULMS Survivor, 2 years Lucy J. Thu, 12 Jun 2003 00:00:00 GMT Dear Lucy, I am so happy to hear that everything is clear now. I must say I have received more bad news about Doxil than good. I don't want to scare my friend, so I will keep your letter for the time being. She has no bad reaction to it when it went in. I will keep collecting information for her, in case she needs them. Don't you love the internet? I learn so much from it, apart from meeting people like you. Thank you so much for writing. Take care, Jo Joanna C. Thu, 12 Jun 2003 00:00:00 GMT Jo, What a GOOD FRIEND you are!!!! That is what helped me through my Chemo...caring and loving friends. My family was devastated and in shock. They did what they could BUT my friends really are the ones that helped us all through it. Because I had difficulty, and I really don't think mine was all that bad, doesn't mean she will. By the way what is her name. I'll keep her in my prayers and you too. MAKE SURE SHE DRINKS A LOT OF SPRING OR FILTERED WATER. Lucy J. (Ga.) Lucy J. Fri, 13 Jun 2003 00:00:00 GMT Hello again. I am doing fine. I am currently on Carboplatin (just rec'd dose #11). None of these chemo drugs seem to get RID of my cancer, but at least we are able to keep it stable! And eventually, I am sure, we will find a drug that will work for my cancer! Please keep me in your thoughts & prayers. Good luck to you and your friend!! Deb Debbie B. Sat, 14 Jun 2003 00:00:00 GMT Hi, Debbie I have been on many chemos for breast cancer that spread to my lungs. I have been lucky like you that the chemo's have keeped the cancer stable with minamal changes in the past 5yrs. I just started Carboplatin, Taxol and herceptin. I haven't had any test to see if it is working, I see my Oncologist on Wednesday. Do you do Carboplatin weekly or every 28 days? I have heard this is a good drug and as you said they will find something that will work, its just finding the right drug. I wish you the best of luck... Donna Donna P. Sat, 14 Jun 2003 00:00:00 GMT Hi Donna, I am receiving the Carboplatin once every 4 weeks. I have only 2-3 days of nausea afterwards, then I do really well. The doctor has offered it every week or every two weeks using a lesser dose to avoid this nausea; however, I would rather go only once a month rather than 2-4 times per month. If there was any benefit for more frequent doses, I would do that in a minute! So far, it is keeping the tumor markers stable with minimal side effects. Good luck with your treatments!! Hope all goes well for you! Please keep me posted how this combination of meds works for you. Debbie Debbie B. Sun, 15 Jun 2003 00:00:00 GMT Yes, I just wrote to Steph to tell her to drink more water. I have not heard from her for a few days, but the last time she wrote she was working, so that's good. Thank you for your prayers. Take care, Jo Joanna C. Sun, 15 Jun 2003 00:00:00 GMT Hey Debbie, hang in there. I can't imagine going for chemo # 7, let alone #11. After my 3rd one I was ready to quit, but I thought, well, at least I am at the halfway point. After the 4th, I told myself I have only 2 to go. My blood count dropped the most after the 5th, and my last chemo was postponed for one week. Fine hair started to grow the day I went for my 6th. I was both amazed and sad. It has been more than a year now, but the thought of going to chemo still overwhelms me. Which is why I was motivated to try other methods to improve my health. Yes, I will keep you in my prayers, Deb. Take care, Jo Joanna C. Sun, 15 Jun 2003 00:00:00 GMT Jo, Hello again! Oh yes. I will hang in there!! No doubt about that. I have a very positive attitude. And even though I am on chemo #11 (of the Carboplatin)...I have actually been on chemo monthly x 3 years straight!! I am not about ready to give up or get down at this point!! I have too much living to go!! We all need to stay positive and we shall conquer!! Deb Debbie B. Mon, 16 Jun 2003 00:00:00 GMT