CancerCompass message board discussion started by Sue W. on 9/19/2003 http://www.cancercompass.com/message-board/message/all,769,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, My name is Sue. I was diagnosed in January with Stage 3B ovarian cancer. I had a complete hysterectomy, and a debulking of the omentum. I was treated for 6 months with carboplatin and taxol. My CA125 dropped to 11. I was them put on maintenance of just the taxol but had a breakthrough with CA125 of 152. They suggested doxil and I had 2 treatments and the CA125 went down to 83. The bad side of this is I have the PPE syndrome (hands and feet very very bad). There is no cure for this and they treat it with pain meds and B6. I have not had a chemo treatment in 8 weeks. Yesterday I had my first and they cut the dose by 20% and treated me with pre-meds first. I live in Pompano Beach, FL - if anyone out there has had similar experience with this or with any treatment I may not know of, please contact me on this message board. I could really use the support. Thanks, Sue Sue W. Fri, 19 Sep 2003 00:00:00 GMT Hi Sue... Read your E mail and while it's not exactly like mine found it similar. I was treated for ovarian cancer for 9 months - taxol and carbo - then had a 6 weeks remission - then the cancer reappeared. Now I'm on Doxil. I've only had two rounds - the third coming up on Oct 1. Fortunately haven't had your problem. Doxil for the first 10 days makes me sick - vomitting all the time and extremely weak. The doctor did say if I had any hand and foot problems would remove me from the treatment - but that hasn't happened. I'm on pain medication, zofran, compazine and basically anything that allows me to get up off the couch and move around. I understand Doxil has funny effects - meaning that they may happen to me as my treatment progresses. I am scheduled to have Doxil until 2/2004. Guess, I really am just grateful for the days I'm feeling good. Allows me pleasures with my grandchildren as well as my adult children. I've decided since my doctor won't allow me to return to work- to do some fun things. Planning to take pottery/ceramics and two oil painting classes in adult school. There are some days I just can't go - but when I do - it's really all worth the fun Bless you -will try to keep in touch. With love and hugs to you...hang in there - THAT'S ALL WE CAN DO !!!! Carole T. Carole T. Mon, 22 Sep 2003 00:00:00 GMT Carol, I too became very weak on Doxil. I lost my appitiate. I did not have any vomiting or feeling sick. I do know that if I take any kind of pain meds, it does make me extremly ill. I wonder if your pain meds are your reason. I wiil keep you in my thoughts and prayers, Donna Donna P. Tue, 23 Sep 2003 00:00:00 GMT Hi Sue, I was diagnosed with Fallopian Tube Cancer (treated as Ovarian) Stage IIIB 8-02 and after surgery was started on Carb/Taxol and stayed on that for 6 treatments. My CA125 never went lower than 200 and so after much frustration my husband and I decided to get a 2nd opinion. We actually got 5-2nd opinions. The last Dr. we "interviewed" fit everything we were looking for in a Dr. She started me on taxotere in March '03 and after 4 treatments my CA 125 was still at 157. Backing up just a bit, we believe that the first cancer center that did my surgery "neglected" to remove two tumors, one near the rectum and one near the uretha. (These two showed up on pre-op CT scans as well as post-op scans) The Dr. at first didn't think she wanted me to go through another surgery and wanted to try and get the counts down with chemo. In addition the one nearest the rectum could have been dangerous to remove leaving me with a possibility of a colostomy. Finally the first of Sept. after much consideration she determined that surgery was in my best interest. Surgery was the best option for me and while a pathology revealed that the two tumors had some small cancer cells in the lining of the tumors, there was no additional cancer anywhere else in my abdomen and they were removed without needing a colotomy. Praise the Lord!! I just had my first chemo treatment since the surgery and I'm on Doxil. I'm a little nervous about the side effects, especially with hearing what all the ones wrote about on this message board. Oh well, I read a lot of info on the side-effects of taxotere and yet I had a very easy time on that, just wish my counts had come down more. I experienced relatively few side-effects, the worst being eye-tearing. Although this was very troublesome, it stopped a few weeks after I ended the chemo treatments on this. Sorry it took me so long to get to this point, but regarding the neuropathy, I've suffered with this in both feet and hands almost since the beginning of chemo. I did find an MD who is nutritional oriented who suggested Lipoic Acid and Biotin. Dosage; Lipoic Acid 1,200 to 1,500 MG per day - Biotin 3,000 mcg. per day. I'm certain that this is what has helped me a lot. No it is not completely gone, but so much better than before. I now can at least type on the computer and use my fingers a lot more comfortably than ever before. Best place I've found for purchasing Lipoic Acid so you don't have to take a zillion tabs is online at Vitacost.com. and I get the brand called Source Naturals. There seem to be few companies that sell 300 MG tabs each, but this one does. Well, hope this helps. Let me know how you are doing. I really care. Some of the best "advice" I've found has been on similar message boards. From one who's confident that the Lord can be your strength and your hope through this "journey" we're traveling through. Blessings, Sandy L.L. :) Sandy L. Wed, 01 Oct 2003 00:00:00 GMT I just started Doxil last week for recurrent breast cancer. I am concerned about the side effects I read, like the hand and foot problems. I am glad to hear you have not had them. Maybe I will not either. Is the tiredness from the Doxil or combo with pain meds? I know I am on a pain killer too for pains in my back where the cancer may be hiding and that knocks me out. Any advice you can give for coping with Doxil would be appreciated. Thanks and hang in there! Barbara Barbara B. Sun, 26 Oct 2003 00:00:00 GMT Dear Sandy L., My cancer started in the Fallopian Tube as your did and like you am being treated as an Ovarain C.patient. My story is so similar to yours. Detected 8-02, surgery, treated, 2 months "vacation" and now back for chemo and am on Doxil. I have had 4 Doxil treatments. 3 were 21 days apart and the 4th one 5 weeks apart because of itching and pain in feet. This treatment (the 4th) has gone well. I had 3 days (mostly in the evening hours and bed time) when my feet itched and were painful. I take 2 benadryl for the itch and 2 Ibuprofen for the pain. Also my feet are pealing where they were inflammed. Doxil is working for me. I am at 70 CA-125. I thank the Lord for being so near. Carole T. Mon, 27 Oct 2003 00:00:00 GMT Hi... Today I went in for my doctor's visit and another Doxil treatment. But it seems that Doxil is not attacking the cancer cells as needed. My cancer CAT is rising up to 380 and on the climb So my next step will be to take a CAT Skan - evaluate the findings and change chemo treatment to Topopecan. Just got a read-out on the facts and effects and I'm not quite sure what I like in reading them But since I don't have the knowledge and not a doctor, I have to trust my current physician and pray that the new Chemo Treatment with Topotecan will be much more effective. This particular Chemo does not affect the hands and feet but, of course, has other side affects which I will have to deal with. I have found with the Doxil the effects aren't as accumulative as with Taxol and Carbo. They seem to let me have a break at the end of the month right before I have another treatment. But that's for you who are continuing to take Doxil I'll let you all know how Topotecan will work after I start my new chemo in about three weeks. Thanks again for all your suppport and remember we all have to just hang in there and make the best of our lives - which are so precious to us all. Love to you all .....Carole Carole T. Wed, 29 Oct 2003 00:00:00 GMT Dear Carole, My oncologist says if Doxil quits working he will go to Topotecan. So I think it is the way to go. Best of wishes, Carole Carole T. Thu, 30 Oct 2003 00:00:00 GMT Thanks for letting me know you too are changing from doxil to topocante. Did you have a chance to read the literature on Topocante? While there seems like that other complications that are far more worse , I just have to march forward and attach the new chemo. I think the thing that bothers me most is the unknown what the chemo may bring or do to me, of if it will help at all. Guess I can only hope I'll be presently suprised. Let me know what your experience might be. I understand that I will be taking three injections for three days and wait 21 days before repeating the process. My doctor explained that after Taxol and Carbo there are a series of Chemo drugs which they can chose from - one being Doxil another one being Topocante...he says it is his choice to pick the one he things that will deliver the best results....if not then we will need to make a change to another drug. While it seems like a guessing game, I have to put my faith in an onocologist that has been there before. Let me know how you get along with this new drug with thanks...and blessings Carole Carole T. Thu, 30 Oct 2003 00:00:00 GMT Hi Carole, Sorry for the delay in getting back to you. I'm so-o-o-o happy that Doxil is working for you and that your CA125 is at 70! I too thank the Lord for all that He has blessed me with, and for how good I'm feeling. My CA 125 two weeks ago was down to 66 from 147 right after surgery on 9-12-03. I just finished my 2nd treatment on Doxil two weeks ago. I go every 4 weeks for treatment and am wondering when the problems with itching and pain began for you? I've had a lot of problems with nausea lasting much longer than the Dr. expected. Sometimes it has hung around for two weeks after the treatment. I'm given meds during the infusion for nausea and then compazine, ativan and zofran after to help. I really can't complain too much, because there has been no vomiting just nausea. I've noticed that since the last round of chemo (taxotere) my appetite has decreased so in order not to lose weight I just make myself eat in spite of it. Sometimes I really have to be "creative" and fix different kinds of meals to "perk up" my appetite. So far it's working and I haven't lost any weight. I hope I don't sound like I'm complaining, just giving you an idea of how I'm doing Please do the same. I really am so grateful to the Lord for doing as well as I'm doing. I'm able to do a lot, have little fatigue, and most of all am able to enjoy my Lord, my family and all my grandkids as never before!!! I praise Him for His bountiful supply!!! If you want you can email me at home (or the message board). I live in Calif. where do you live? Talk to ya later. My continued prayers are with you that your CA125 keeps moving on down!!!!! Love ya, Sandy L. Sandy L. Fri, 07 Nov 2003 00:00:00 GMT I was on Doxil for five cycles. My ca125 went from 155 to 9 after 2 infusions, and my doctor and I are both convinced that it worked so well and with so few side-effects because of the supplements I took with it. Here is my regimen: WHEY protein (processed at low temperatures) with GREEN TEA 3 times a day, QUERCITIN with BROMELAIN, TURMERIC, FISH OIL (3 times a day) and MILK THISTLE capsules in the evening. Good luck! Jordan Thu, 12 May 2005 00:00:00 GMT I am told there are nutritional no-no's to be avoided while taking Doxil. I could use some help with meal planning for my wife during her treatment. What sources are available, if any. Mcodent Wed, 18 May 2005 00:00:00 GMT My Endometrial cancer was discovered in Stage 3, and it returned in February 2005. I am currently going thru Doxil chemo and have one more to go. I have found that if I follow "the law" on the instructions, I do not have the severe feet and hand problem. I have had peeling, sore and itching feet, but that was after I wore heels a few days after my treatment. It was a hard, long painful lesson to learn to never do that again! I'm not sure if I'll have any more treatments after the Doxil, I'll go later in August for an additional CT/Chest Xray to determine if that's needed. I am getting a Steriod Shot and an anti-nausea medicine before I start the chemo and it has helped tremendously. Good luck and God bless to all of you as we all go thru this ! Tlc1angel Thu, 30 Jun 2005 00:00:00 GMT Jordan, It was so great to read your message! My mom was diagnosed with Stage 3C ovarian cancer in Nov '03. Had surgery then the initial round of traditional chemo. I am a health nut, did a ton of research and had her on life extension vitamins, extra vitamin C, MGN-3 (now immune assist), and a very healthy diet with emphasis on low sugar (as i'm sure you know, cancer cells love sugar). She got thru the chemo great - only side effect being that she lost her hair; slight neuropathy. Anyway.....it's now a year since that chemo's been over. They detected a "nodule" down near her bowels, and want to start her on Doxil. I've read all about it, including PPE. I was searching for NON-DRUG, healthy ways to prevent/treat it. Can you tell me more about your regimen? 1) how did you come up with it? 2) specific doses? I'd really appreciate it! Congratulations on your health success - what an inspiring story! Thank you! Sherri Tue, 12 Jul 2005 00:00:00 GMT Reading the message from Sue and others, I too have been on a lot of different medications, I was on doxil and had the same problems with hands and feet, then my doc took me of it, and put me on gemzar. Had a reaction to gemzar high fevers, so then he added steroids, but my ca 125 was not moving from 392, so then the doc added carboplatin. Bad reaction to that, so I am now on topotecan, had two cycles, six treatments, had blood work done two days ago and will have results on my ca125, tomorrow, and praying the topotecan is taking down my markers, if not they are going to add some other medication to the tpoptecan, I have not had too many side effects from this medication get it three thursdays in a row and then a week off, just pray it is doing its job. My complete hysterectomy will be two years in nov, they could only get 95 per cent of the cancer cells, I am in Sebastian fla. Best of luck to all. Miss my speller on this message board. Fl5505 Wed, 31 Aug 2005 00:00:00 GMT You can check on www.ms-health.com. for more info. Hope someone can translate it for you cause it is in Chinese. This drug is from Shanghai, China. Best supplement so far. Good luck, ivy Ivy w Fri, 10 Nov 2006 00:00:00 GMT Doxil did not help my Mom. After just two cycles her tumors have grown and they have pulled her off.  She is at stage IV ovarian cancer, the tumors are now in her liver.  She was diagnosed in June 2005 at stage 3C.  After major debulking surgery she has had Taxol/Carbo 6-8 cycles twice and been in remission following both times.  She has been a part of 3 studies so far none worked. She has terrible neuropathy but it's better than having cancer.  I don't know her CA125 today but it was 1254 at initial diagnosis.  She will start Gemzar Friday.  I have seen a study that Gemzar in combo w/carboplatin improves PFS (progreesion-free survival) by 3 months.  i hope it works for her.  She is so strong and we hoped that she could just get the taxol/carbo because we know it works for her but i guess the docs say there's a lifetime limit to how much a person can get, she has had 14 cycle of that alone not to mention all the research chemo, too.  Time is truly of the essence now.  Any info and many prayers appreciated.  Prayers and thoughts out to all of you and your loved ones, too! jeans daughter Wed, 15 Aug 2007 00:00:00 GMT Hi!  Im sorry to hear about your mom.  How did she do with her latest treatment?  I hope she's ok. My family and I are looking for treatments, anything that might work for our loved one.  Small cell ovarian cancer reoccurred with three tumors after a year & a half.  Initial treatment consisted of debulking surgery on 3/2006, cisplatin/etoposide combo, then radiation.  In Nov 2007, she started on 3cycles of cisplat/camptosar combo with no significant drop in CA125,and lots of side effects. We switched to carboplatin/camptosar. This regimen had less side effects but seems to have sent CA125 to skyrock.  Right now her platelet count is very low therefore we cannot start on doxil.  Do u think she should have been on Doxil before carboplatin? Is your mom under the care of a gyn oncologist or just an oncologist.  How did she get in the clinical studies? How does she manage the pain? Good luck to your family!  My thoughts and prayers are with you.  aurea Tue, 15 Jan 2008 00:00:00 GMT My mom has Stage IV Breast Cancer and is about to begin treatment on DOXIL.  My mom has been treated with Hormone therapy for 4 years and this is her 2nd traditional infusion chemo treatment.  She just completed Navelbine treatment and her CA125 was rising.  The doctor wants to now try DOXIL.  I am really intesterested in hearing exactly what supplements you took and how (doses etc).  I know you mentioned Whey protein, Quercitin with Bromelain, Turmeric, Fish Oil and Milk Thistle.  How much, what form, when etc? would be great. Please let me know.Maria Maria2 Mon, 11 Aug 2008 00:00:00 GMT