CancerCompass message board discussion started by Myra Shirley on 7/21/2006 http://www.cancercompass.com/message-board/message/all,6131,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I am scheduled to have my third doxil treatment on August 1st. After the first two my ca 125 only went down 33 points...is this normal...does it act slowly? I have been on carbo/taxol,carbo/topatecan/ and just taxol and just carbo...this recurrence was too soon after the last carbo treatments and so we are using doxil...it has caused extreme fatigue and am very frightened that it is not working. My dr. says we have to do 4 rounds, but I am very impatient. I was dia in July 02, stage IIIC peritoneal ova ca, had surgery and debulking and the longest period of remission was ll months. Refuse to give up yet, but I am feeling miserable and in turn making my family feel helpless in not knowing what to do for me. I am not eating properly...even tho I cook for my husband normal dinners...I just can't force them down. Any suggestions? Have just begun physical therapy and hopefully it will build up my strength and energy level. Do have a great doc at the U of Pa in Philly and have faith in his decisions, but am now getting depressed and not so sure that I will beat it. Have always been optomistic, but am slipping now and again. Any ideas? Do belong to a Ovarian Cancer Advocacy group...great gals and guys...some are family of victims and some are survivors. It's a great group, but not a support one. Do support groups help? We'll keep fighting this and will lick it!!! I know it and keep hoping!!!! Myra Shirley Fri, 21 Jul 2006 00:00:00 GMT Hi Myra, I just had my first Doxil treatment July 20th and have been worried about the same thing - how do we know this is working - My doc said it will take a few treatments to take effect. Are you getting it every 4 weeks? 33 points down for your CA125 is good - better than up, right? Continue to have hope!!! I am stage IV and am going nuts b/c the cancer is in my lymph nodes and i can see the swelling in my neck. I don't have advice for you in regards to getting your energy back but when it comes to eating and feeling sick i think you have to eat whatever you can keep down and try not to worry about the nutrition value right now. Being hard on yourself won't do anything but cause you more stress and you're under enough stress right now. Give the support group a shot - it helps to talk to other people that are in a similar situation. They may be able to answer some of your questions and vice versa - what do you have to lose - hair? We've done that already! I too feel like you, hopefully but wavering at times. I think that is normal - we are in a sucky situation but we can't give up - we have to keep fighting! Try to visualize yourself healthy and happy, be outside and listen to the birds or walk or sit by a river - I have found nature to be very healing. Good Luck Myra and keep up the good fight!!!! Kellygreen Thu, 27 Jul 2006 00:00:00 GMT I was diagnosed on Oct. 04 with Stage IV, Class C. Carboplatin did nothing for me, and have been on Doxil and Topetecan (sp),separately. My last Chemo was Feb 28, 2006 and the cancer has been quiet since then. Knowing it is still there is something that sometimes overwhelmes me - just waiting for the other shoe to drop. I have found guided imagery and affirmations very helpful. I get the CDs from healthjourneys.com. What also helps is the support I have gotten from my family, friends and church. I have been living by the 4 "P's". Professionals, Prayer, Patience, and Perseverance. This tiny community is wonderful. Eating was very hard for me also - I really needed to gain weight. My husband and daughter always had something at my bedside to snack on - mellon, grapes, nuts. I craved pickles and O'Doules. Some days that was all I had. My friends dropped food off constantly. They are from my Red Hat group, knitting group, and book club. My husband ate well, but I couldn't! I was very sick from 2 surgeries and couldn't have stood to cook. I ate when I wanted, when I wanted - no matter what it was. And I would suggest you do the same if it can be worked out. I do think it's much harder to gain weight than to lose it. I feel good now most of the time, but have to prioritize (sp) and have found that some things are just not importand - like housework! I spend time with people I really want to and do what is importand to me. I wish you all the luck in the world - it is really a tough journey. Sara Saraknitter Thu, 27 Jul 2006 00:00:00 GMT I have had my 5th doxil treatment and my numbers dropped 200 more points, but I am having a rotten time of it...running fevers and chills(cultures show no infections)am terribly nauseaous, have absolutely no engery, but I keep reminding myself the numbers are going down. Has anyone else had awful symptoms? I have spoken to the doxil people and they had a nurse contact me and they want to contact my dr. after I sign a release they are sending me. How are others handling doxil? Help! keep fighting and hoping...xxx000 Myra Shirley Myra Shirley Wed, 06 Sep 2006 00:00:00 GMT I know we have to keep up the fight, it's getting harder and harder. My numbers did drop, but the side effects are culmultive and causing fevers and chills,(had cultures done...no infections thank goodness). I have had five rounds of doxil now and don't know if I can handle the 6th. Have no appetite and the nausea is really awful sometimes. I know we have to keep fighting and will hopefully win!!!! xxx000 Myra Shirley Myra Shirley Wed, 06 Sep 2006 00:00:00 GMT hello all, i am so sorry for everyone else's pain, as i am horrified also. i was diagnosed in 1/1999, had surgery, and 6 rounds of carboplatin/taxol. stayed in remission till 3/05, had surgery, and 8 rounds of the same (last 2 rounds just taxol, as i became allergic to the carbo.) 9 months later, july of this year it is back again by catscan. no one will operate and now i am on doxil for 4 rounds... second one is next week. ca125 is not a marker for me... it has never been above 12. one of my dr. opinions is topetecan instead of doxil. does anyone know which one should be used? also, what are the cumulative effects of doxil... does anyone have that hand/foot syndrome?? and when do the symptoms occur? my prayers are with us all, arlyn Arlyn Tue, 19 Sep 2006 00:00:00 GMT Hi, I am lucky(?) enough to have gotten the hand/foot syndrome after my 5th treatment...also it has effected my bladded (it does nasty things to the mucous membranes). I called the doxil hotline and they were kind enough to send a bag of gel packs, cream, a hat, water bottle, suntan lotion and lots of info. For my hands I use Bag Balm and the moo cream,wear cotton gloves at night and ice packs on my wrists. It looks as if I spilled boling water on them. Don't know is I am able to wear decent shoes...do the same cream for my feet and have been wearing keds. My numbers have dropped and I have labs on Friday and hope and pray they've dropped again. Think happy thoughts...and keep positive...we will win. xxoo Myra Shirley Myra Shirley Tue, 19 Sep 2006 00:00:00 GMT It sound like you are realling having a rough time with Doxil side effects. It makes me sound like a sissy. I have not experienced any nausea. Prior to the Doxil, i receive 4-5 other drugs, at least one is for nausea. Do you have something for the nausea? My appetite is also pretty good, I eat a lot of cereal with Yougurt smoothie. My side effects are Hand/foot syndrome. A major episode occured about 6 wks ago after I play 18 rounds of golf on a warm day. (no more golf this year). I had 3 treatments at that time. My feet are red, raw, like a really bad sunburn. I could not wear any shoes for a week, now I wear ballet slippers. Constantly putting cream on my feet. I considered switching drugs - but my numbers are really, really good. And side effects from a new drug could be worse. I decided to track how I felt daily on a scale of 1-10 for a month. Although I really thought I felt awful most of the time, there were only 5 days that was i felt really poorly. Good luck and keep us posted. Rita Ritas Fri, 22 Sep 2006 00:00:00 GMT Hi Myra, My heart and prayers go out to you in this, the fight of your life. I'm battling primary paritoneal cancer that acts like ovarian cancer and have already done the 6 carbo/platinum based treatments and my CA-125 went down, but it rose again between the 5th & 6th treatment. So now I'm on the Doxil also, my skin has gotten very fragile, but thankfully after 2 treatments I haven't gotten the hand/foot syndrome. I did get an ulcer on the side of my tougue, as like you said, it does terrible things to the mucous membranes! Myra, I hope your numbers dropped at your last appointment! We must stay positive and try to be pro-active. I try to keep my plate full to give me "drive" and a reason to get up. I'm on oxygen 24/7 so I'm on a tether to the concentrator. I have been hanging wallpaper and making curtains so far, even though I don't last very long. May God bless you and keep you in His care. Karen Karen s Thu, 28 Sep 2006 00:00:00 GMT