CancerCompass message board discussion started by Cmaid on 1/25/2008 http://www.cancercompass.com/message-board/message/all,20315,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was diagnosed with stage 3 Ovarian Cancer last March. I had the usual debulking surgery with an iliostomy bag. I have gone through 6 carboplatin/taxol treatments.  My CA 125 was down to 36 in July.  Sept. was another surgery to reconnect my bowels and my CA 125 was up to 80.  December,  the CA 125 was over 500 so I was put on Doxil.  I'm heading towards my 3rd treatment with my last CA125 well over 1000.  It's my understanding that Doxil takes at least 3 sessions to make the CA 125 come down.  I'm getting pretty worn out from the chemo and need a break.  Does anyone have any statistics on the success of doxil?  I've read that after  carboplatin/taxol treatments, 75% went into remission.  I'm also researching and considering the Burzynski Clinic in Houston.  I'm thinking that chemo, in the long run, is not the way to go.  I'm also very cautious about my diet and started wheatgrass every morning, no sugar, no red meat. Veggie juices. Everything I've read points to strengthening the immune system as much as possible and eating as many various colored raw veggies.  Any thoughts or experiences with the above? Cmaid Fri, 25 Jan 2008 00:00:00 GMT Hello. I'm sorry to hear that you are experiencing a recurrence. My mother was diagnosed IIIC and used monthly doxil/carboplatin as a second-line treatment. Her CA-125 began to fall after three treatments. She never went into complete remission, though her disease was kept stable for 8-9 months, and she enjoyed a relatively high quality of life for all but a few days each month.  As for response rates to doxil (partial and complete), I have seen  trials resulting in statistics between 25-35%.Best wishes. I have my fingers crossed for you.     Esthers Daughter Fri, 25 Jan 2008 00:00:00 GMT I'm sorry to hear about your Mother.  It's always hard to lose someone.  I'm doing pretty well, energy wise. I figured that the rates on Doxil were not great so will more seriously persue alternative routes.This website has been a wealth of information.  Thank you to everyone for sharing. Cmaid Fri, 25 Jan 2008 00:00:00 GMT Hi cmaid, I too am on Doxil and am going to have my 6th treatment on the 8th of February. Doxil is my 2nd line treatment. I was diagnosed in Sept of 06 with stage 4 at 36 yrs old. I too had to have an illeostomy at the time of initial surgery and did 6 rounds of taxol and carboplatin. I became stable after that and had the illeostomy reversed in March of 07 with a CA125 of 43. My CA125, at the time of diagnosis was 4300. I was stable for roughly 7 months and CA125 rose to 936 thus began Doxil at the end of Sept of 07. I have had great results from Doxil so far and have not been "typical" as far as the CA125 not going down for 3 or 4 treatments. Mine went down from 936 to 396 after the first treatment; after second treatment it continued to drop and continued to drop after each one and was at 122 starting my 5th treatment. I will find out what it is going into my 6th one next week right before I have hopefully my last one for awhile. I will keep you posted. I do need to warn you that although I'm sure you're already aware of the possible side effects, I have had the worst itchy rash that is possibly going to prevent me from having my 6th treatment on schedule. I see my doctor tomorrow and he will decide if it's safe to continue on schedule. I'm aprehensive because it could possibly be my last chemo treatment for awhile as I'm hoping to become stable again after this last one. I hate the idea of waiting especially since CA125 is not dropping as much as it did in the beginning. I have not had the typical hand and foot syndrome other than my hands being very tender to touch and some peeling of skin. Besides that and some fatigue, no real bad side effects. I've been told that Doxil is one of the least toxic drugs available and considered a "miracle drug". I had a terrible time with taxol and carboplatin and was very weak and sick and had horrible joint pain along with the added problems of the illeostomy. The illeostomy was probably the worst part of the first 7 months of this nightmare. It was very painful for me and never could quite find a way to attach the appliance without leakage and burning of the skin around the bag. I hope you didn't have all the problems I had with that. So, my experience with Doxil after all of that has virtually been a piece of cake. I will say that all in all I really don't feel great though and am very nervous of another reoccurance and my choices of chemo. Unfortunately, I have to keep working and am afraid that the side effects from future chemos will not allow that to happen. Also, just the thought of feeling horrible for months on end. I don't know about most but I struggle with deciding when enough will be enough. I've always said that when and if it gets to the point where I have more bad days than good, I will not continue with chemotherapy. Most of my family and friends don't understand that thought process but I feel very strongly about that. Unlike some, I don't fear dying,{don't get me wrong, I don't want to die}, but I'm okay with it if that's my alternative to not feeling good for the rest of my life. I'm sorry for being so long winded but I'm sure you can appreciate the need to vent to someone going through the same thing.I am truly interested in your thoughts and concerns and hope that sharing my experiences with this awful disease have been helpful, even if only a small way. Oncologists are so very different in their approach to this disease that it is very helpful to get others experiences. Well, I guess that's all I'll bother you with now but I hope to hear from you. I really hope that you respond fabulously to Doxil and breeze right through it with no major complications. Take care and find something every day that makes you smile.  Love, KristaJ KristaJ Tue, 29 Jan 2008 00:00:00 GMT Here's my history...I am currently on Doxil. I have never been in remission.Feb 06 diagnosed with OVCA stage 3c. Sugery debulking insertion of IV port, Carbo/Taxol IV for 6 treatments.  6 treatments Taxol IV only as maintenance. Feb 07, recurrence. April 07 Sugery debulking, IP port inserted. IV Taxotere/IP Cisplatin/Taxol. I made it through 5 treatments, with 1 to go. Every month I was in the hospital for something. May was fevers. June was good-no hospital. July 10-bloodclot in the Superior Vena Cava vein. end of July 07-Aug 07 surgery to remove infected IP port - staph infection -in the hospital for 20 days. Home with vancomycin IV's.  Sep-October 07 - Fistula draining through the vag area.  It took 3 days to take me down to critical levels.  Surgery torepair fistula, and added an ileostomy as my intestines had a hole in them. My doctor was thinking it was a bladder fistula, but it was the middle of the night when I called.  I did not agree so I went and ate a few Coco Puffs cereal...the evidence was clear when I went to the bathroom, so I knew it was more serious than what he was thinking. I was in the hospital the next day.  There are side effects with Cisplatin IPs.  I was in the hospital for 25 days and sent home with vancomycin infusion as well as TPN and lipids infustion (food for my body to give my intestines time to heal) also to get me to gain weight and get my levels back to where they needed to be. I was on this for 4 weeks at home, and now it is hydration only.  I started Doxil in December 07. I had the rash on my hands, and spots on my arms.  I just applied ice and some Biofene (it is an ointment that firefighters use for heat burns on their face) - works almost immediately.  I felt bad for about 10 days but that was the first treatment.  Most people I am told just have to do the ice and feel bad for about 6 days. I do my chemo on Wed and by Monday I can tell the worst is over. Just lay down and keep ice packs on your feet and hands, and drink drink drink - anything and everything.  Eat if you can. Get the miracle mouthwash as I have thrush in my mouth each treatment.  Just comes with the territory, and if  you don't eat, it gets worse.  Even if it is just boullion or soups. Popsicles with ice cream in the middle. Eat something.  Jan 08 - we added carboplatin along with Doxil.  I was down longer, but it seems that the first infusion of a drug takes longer to get used to. Nausea is real big with Carbo and Doxil.  Take Zofran or a nausea drug when needed.  Jan 30 was my third treatment..since I have chemo on Wed, I usually have Friday before it hits.  I am not one who can depend on the CA125 results.  But in December it was 13. Jan  was 9.  I am told for most women who take Doxil, it pushes the CA125 higher. But after the third treatment it goes down. I have a CT scheduled for Feb, so we will know if there is any cancer there. I was clean when we started, except for microscopic of course, so we will see. Doxil is not that hard.  I am a person that has unusual side effects at times.  Some of them my doctors and nurses have not seen in other patients. We are all different.  But the nausea and the rashes happen with everyone. So you would need to look for it. If it doesn't happen, Great!Keep posting so we can see what you decided.  I'm sorry this is long winded. Vicki in Wylie  wylieadmin Thu, 31 Jan 2008 00:00:00 GMT  On 1/31/2008 wylieadmin wrote:Here's my history...I am currently on Doxil. I have never been in remission.Feb 06 diagnosed with OVCA stage 3c. Sugery debulking insertion of IV port, Carbo/Taxol IV for 6 treatments.  6 treatments Taxol IV only as maintenance. Feb 07, recurrence. April 07 Sugery debulking, IP port inserted. IV Taxotere/IP Cisplatin/Taxol. I made it through 5 treatments, with 1 to go. Every month I was in the hospital for something. May was fevers. June was good-no hospital. July 10-bloodclot in the Superior Vena Cava vein. end of July 07-Aug 07 surgery to remove infected IP port - staph infection -in the hospital for 20 days. Home with vancomycin IV's.  Sep-October 07 - Fistula draining through the vag area.  It took 3 days to take me down to critical levels.  Surgery torepair fistula, and added an ileostomy as my intestines had a hole in them. My doctor was thinking it was a bladder fistula, but it was the middle of the night when I called.  I did not agree so I went and ate a few Coco Puffs cereal...the evidence was clear when I went to the bathroom, so I knew it was more serious than what he was thinking. I was in the hospital the next day.  There are side effects with Cisplatin IPs.  I was in the hospital for 25 days and sent home with vancomycin infusion as well as TPN and lipids infustion (food for my body to give my intestines time to heal) also to get me to gain weight and get my levels back to where they needed to be. I was on this for 4 weeks at home, and now it is hydration only.  I started Doxil in December 07. I had the rash on my hands, and spots on my arms.  I just applied ice and some Biofene (it is an ointment that firefighters use for heat burns on their face) - works almost immediately.  I felt bad for about 10 days but that was the first treatment.  Most people I am told just have to do the ice and feel bad for about 6 days. I do my chemo on Wed and by Monday I can tell the worst is over. Just lay down and keep ice packs on your feet and hands, and drink drink drink - anything and everything.  Eat if you can. Get the miracle mouthwash as I have thrush in my mouth each treatment.  Just comes with the territory, and if  you don't eat, it gets worse.  Even if it is just boullion or soups. Popsicles with ice cream in the middle. Eat something.  Jan 08 - we added carboplatin along with Doxil.  I was down longer, but it seems that the first infusion of a drug takes longer to get used to. Nausea is real big with Carbo and Doxil.  Take Zofran or a nausea drug when needed.  Jan 30 was my third treatment..since I have chemo on Wed, I usually have Friday before it hits.  I am not one who can depend on the CA125 results.  But in December it was 13. Jan  was 9.  I am told for most women who take Doxil, it pushes the CA125 higher. But after the third treatment it goes down. I have a CT scheduled for Feb, so we will know if there is any cancer there. I was clean when we started, except for microscopic of course, so we will see. Doxil is not that hard.  I am a person that has unusual side effects at times.  Some of them my doctors and nurses have not seen in other patients. We are all different.  But the nausea and the rashes happen with everyone. So you would need to look for it. If it doesn't happen, Great!Keep posting so we can see what you decided.  I'm sorry this is long winded. Vicki in Wylie  Hi Vicki,You sure are a trooper!  Wow!  I'm doing 180 degree turns every few days on what I want to do.  I have my blood test results next Tuesday so I'm hoping "the way will become clear".  Today.....I feel like I should give Doxil a chance to see if it's going to do it for me.  My thinking (at the moment) is to commit to the 5 or 6 sessions, if I can stand it, and see what happens.  So far,  after 2 treatments,  I haven't had any symptoms other than some muscle weakness and slight fatigue.  I read on the Doxil website that if you ice your hands and feet WHILE receiving the chemo,  it reduces the side effects of the hand and foot symdrome by 95%.  The nurses didn't know of this.  My doctor says that you have to take your health into your own hands as much as possible.  I'm also finding that diet and exercise help tremendously.  Sometimes,  I feel just too tired to go to the gym but I force myself and as a consequence, get energy and feel much better.  Are you able to get out and walk?  I'm thinking of you and sending you energy.  There's a lot of support out there to pull us all through.  I"m hoping that you are getting as much quality of life daily as possible.  Keep in touch and let me know how you are doing. BTW, what is that miracle mouth wash?  I had some painful mouth sores but they said to swish with baking soda and water.  They went away very quickly but up until that point, I was having trouble eating.Cheers, Bonnie Cmaid Fri, 01 Feb 2008 00:00:00 GMT  On 1/29/2008 KristaJ wrote:Hi cmaid, I too am on Doxil and am going to have my 6th treatment on the 8th of February. Doxil is my 2nd line treatment. I was diagnosed in Sept of 06 with stage 4 at 36 yrs old. I too had to have an illeostomy at the time of initial surgery and did 6 rounds of taxol and carboplatin. I became stable after that and had the illeostomy reversed in March of 07 with a CA125 of 43. My CA125, at the time of diagnosis was 4300. I was stable for roughly 7 months and CA125 rose to 936 thus began Doxil at the end of Sept of 07. I have had great results from Doxil so far and have not been "typical" as far as the CA125 not going down for 3 or 4 treatments. Mine went down from 936 to 396 after the first treatment; after second treatment it continued to drop and continued to drop after each one and was at 122 starting my 5th treatment. I will find out what it is going into my 6th one next week right before I have hopefully my last one for awhile. I will keep you posted. I do need to warn you that although I'm sure you're already aware of the possible side effects, I have had the worst itchy rash that is possibly going to prevent me from having my 6th treatment on schedule. I see my doctor tomorrow and he will decide if it's safe to continue on schedule. I'm aprehensive because it could possibly be my last chemo treatment for awhile as I'm hoping to become stable again after this last one. I hate the idea of waiting especially since CA125 is not dropping as much as it did in the beginning. I have not had the typical hand and foot syndrome other than my hands being very tender to touch and some peeling of skin. Besides that and some fatigue, no real bad side effects. I've been told that Doxil is one of the least toxic drugs available and considered a "miracle drug". I had a terrible time with taxol and carboplatin and was very weak and sick and had horrible joint pain along with the added problems of the illeostomy. The illeostomy was probably the worst part of the first 7 months of this nightmare. It was very painful for me and never could quite find a way to attach the appliance without leakage and burning of the skin around the bag. I hope you didn't have all the problems I had with that. So, my experience with Doxil after all of that has virtually been a piece of cake. I will say that all in all I really don't feel great though and am very nervous of another reoccurance and my choices of chemo. Unfortunately, I have to keep working and am afraid that the side effects from future chemos will not allow that to happen. Also, just the thought of feeling horrible for months on end. I don't know about most but I struggle with deciding when enough will be enough. I've always said that when and if it gets to the point where I have more bad days than good, I will not continue with chemotherapy. Most of my family and friends don't understand that thought process but I feel very strongly about that. Unlike some, I don't fear dying,{don't get me wrong, I don't want to die}, but I'm okay with it if that's my alternative to not feeling good for the rest of my life. I'm sorry for being so long winded but I'm sure you can appreciate the need to vent to someone going through the same thing.I am truly interested in your thoughts and concerns and hope that sharing my experiences with this awful disease have been helpful, even if only a small way. Oncologists are so very different in their approach to this disease that it is very helpful to get others experiences. Well, I guess that's all I'll bother you with now but I hope to hear from you. I really hope that you respond fabulously to Doxil and breeze right through it with no major complications. Take care and find something every day that makes you smile.  Love, KristaJ Hi Krista,I also had the 6 sessions of carboplatin/taxol.  I had a lot of leg pain in my bones for a few days afterwards. I didn't have any nausea but a lot of weakness in my muscles.  My CA125 was 36 when I finished. Then, had a few months break until surgery on Sept. 24th to reverse the illiostomy bag.  My CA125 was 80.  In December, it was over 500 when I decided to start the Doxil.  In January, it was over 1000.  So, I assume with this upcoming 3rd treatment, it will either plateau or ??? who knows what? That illiostomy bag was torture!!  Mine broke at the most inopportune times.  Like, when I was walking down the street or having lunch with a friend.  Or at 3 am in the morning, in bed, for no apparent reason.    I'm just now feeling like I'm approaching something called "normal". It makes me feel like I've gone beyond humility. I'm glad yours is gone.  I relate to your feeling about when enough chemo is enough.  I think about that every once in a while.  I'll cross that bridge when and if it comes.  Just trying to be in the "present" is helpful and not worrying about something that hasn't happened yet.  I'm 60 this year.  You have so much more to live for and things to do.  I have a really good feeling that you'll go into remission.  Hang in there. I know friends and family don't understand the " I'm done with this" feeling.  Only you can make whatever decision is the best for you.  I agree that when you get more bad days than good, you'll need to re-evaluate. My local hospital has a "Living Strong,Living Well" program which offers a 12 weeks membership with a personal trainer at a YMCA.  I've found it to be tremendously helpful in getting my strength back. Maybe you have something similar in your area?  Just a thought.  I also started to  eat more raw veggies and juices, including wheatgrass juice when I can get it.  I've read that it is important to get your immune system strong to fight this alien we have in our bodies.  Acupuncture is the other  appointment that I keep every week to keep my energy up and any little pains that I may have.  It also helps with sleep. I hope some of this is helpful to you.  Please keep in touch and let me know how you are doing.  Cheers, Bonnie Cmaid Fri, 01 Feb 2008 00:00:00 GMT Hi Bonnie, I too am working hard on trying to build up my immune system. I've sought advice from a pharmacologist and have had a complete blood workup to see what exactly my body is lacking, and take about 15 vitamins and amino acids daily. I think that is partially why I've responded well to chemo. I don't seem to have a problem responding well to treatment, but have a problem getting rid of the cancer completely! I guess that's the problem with having stage 4 OC. Back to the illeostomy nightmares, I also went through my bag breaking pretty much daily or every other day. The worst is when you're in public and you feel something start running down your leg; or in the middle of the night and have to ask your husband to help clean you up! It's amazing he can still look at me without throwing up! I never thought I would have to worry about leaking feces all over the place. Reading your message reminds me of everything I went through, (very similiar to you as far as illeostomy), and looking back, even though it hasn't been that long ago, it's amazing what we can endure. I am totally shocked that you didn't have a very hard time with taxol/carbo. That was, for me, the closest to death I think I've been(except when first diagnosed). Did you say you have nausea with Doxil? If so that surprises me too. I have had none. I do have days that I generally don't feel good but no nausea. From what my oncologist says it isn't one that makes most people sick. But like you said, everybody is so different. I haven't really sought the acupuncture avenue only because I'm afraid one more thing on my plate would just simply put me over the edge. I do believe that it's very beneficial and will probably try it at some point. After reading alot of these messages I feel like I'm one of the few that seems to be emotionally drained from the constant fight for my life. I know those feelings are normal but I am soooooooooo tired of it. Maybe I just reveal too much. I don't think alot of people want to talk about the negativity that they feel about being sick for fear that it will be a detrament (I know I spelled that wrong) to their recovery. I have found that unless I deal with it by talking about it, I'll never get through it. I don't think I'll ever get over being angry about it. Maybe that will help me in the long run, I tend to fight harder when I'm angry. We'll see. I'll end this for now, but I want to tell you that I apreciate your response and hope to hear from you soon. I hope today is a good day and tomorrow will be the same. You seem so positive, I admire that. You've been a big help today in lifting my spirits; before now it wasn't a very good day, so thank you!!!! Be well and take care.        Love, KristaJ KristaJ Fri, 01 Feb 2008 00:00:00 GMT