CancerCompass message board discussion started by Marymskcc on 10/18/2007 http://www.cancercompass.com/message-board/message/all,17211,0.htm Mon, 13 Oct 2008 00:00:00 GMT Mon, 13 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I was dx in January 2007 with stage 3C Ovarian cancer, which devasted me to my soul, but I had to push on and now  I've completed 18 rounds of chemo, including 6 rounds of IP chemo - Cisplatin/Taxol.  I am currently on a clinical trial of Avastin every 3 weeks.  While I got through the chemo with the usual horrible side effects.  I am currently suffering with bone pain and neuropathy and generally tired most of the time.  While I am responding well to treatment, my CA125 is dow to 5; I think the treatment itself is killing me.  Anyone else having these problems.  Love to talk to someone in my shoes.  God Bless us all. Marymskcc Thu, 18 Oct 2007 00:00:00 GMT I've been on the same drugs & a lot more - its the Taxol that mostly causes the neuropathy - it does get better - in time.  You said you completed 18 rounds of chemo & are now on Avastin - Avastin can't run alone are you still on the original drugs with it.  I thought the tiredness would never go away the important thing to focus on is that your CA125 is so low - that's great..I just finished with Avastin and it seems to have done well.  I also had  Stage 3C I wish you luck & watch your diet.  I heard so much about the importance of eating less fat & less sugar.   JoAnn M. Wed, 24 Oct 2007 00:00:00 GMT I would like to suggest that you could find some excellent answers to your questions on the ACOR ovarian cancer discussion list. ACOR stands for Association of Cancer Online Resources. go to www.acor.org, and look for the tab that says mailing lists. Locate the list for ovarian cancer, and follow the instructions to subscribe. The subscription is free and you do not get any junk mail or spam as a result of joining. The list is an excellent resource, over 1000 women who have ovarian cancer are on this list, and the answers to questions such as yours are easily found through the experiences of other women who have gone through this. It is truly an excellent discussion forum for women with ovarian cancer. Quite a few on that list are on the Avastin regimen and can share their experience with you, as well as give advice on the chemo and it's effect. By the way, as a personal note, I would agree that too much chemo can be a bad thing. With your CA 125 under control, why not suggest to your doctor that you take a break? If you feel like it's killing you, it probably is. Remember, this stuff is like a poison - it kills the cancer cells but also kills a lot of good cells too, like red and white blood cells. It's not a bad idea to stop or take a break if you are feeling this bad. There is really not great evidence to show that extended chemo improves overall survival. Ovcasurvivor Wed, 24 Oct 2007 00:00:00 GMT  On 10/18/2007 Marymskcc wrote:I was dx in January 2007 with stage 3C Ovarian cancer, which devasted me to my soul, but I had to push on and now  I've completed 18 rounds of chemo, including 6 rounds of IP chemo - Cisplatin/Taxol.  I am currently on a clinical trial of Avastin every 3 weeks.  While I got through the chemo with the usual horrible side effects.  I am currently suffering with bone pain and neuropathy and generally tired most of the time.  While I am responding well to treatment, my CA125 is dow to 5; I think the treatment itself is killing me.  Anyone else having these problems.  Love to talk to someone in my shoes.  God Bless us all.My mother has been battling the same cancer as you for the past 5 years.  In addition to chemo, she did a lot of complementary medicine, such as specific nutritional supplements, intravenous vitamin C, etc.  I believe these treatments helped a great deal with the side-effects of chemo and boostinggiving her immune system.  She went 2 1/2 years after the first round of chemo before the cancer was out of control again.  I agree with you on how hard chemo is on the body. I have compiled some information on complementary therapies and resources we found.  I'd be happy to send it to you. I'll send an attachment if you want to email me directly, I don't know if you can send attachments from this email.  You can email me at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html-- Blessings and prayers,Lynnette Lynnette Thu, 25 Oct 2007 00:00:00 GMT I'm also 3C ovca, and am celebrating my 6th year since dx.  I have neuropathy and it worsens if I miss supplements...calcium citrate, glucosamine blend, L glutamine and vit. B6.  I am currently in treatment or I would be taking an armload of anti-oxidants too.Try to rejoice with your good numbers and take it a day at a time.  Do the things that give you the most pleasure.  Turn the channel on negative emotions.  Visualize where you want to be, not where you've been.  I know it seems impossible sometimes, but you have had such a positive response to the chemo, and now is the time to heal from wreckage it leaves behind.  The body needs time and good nutrition to get right again.  Tell your oncologist if the bone pain is intolerable.  A low dose pain med may be needed. Good thoughts and healing energy to you!   Paula Paula3 Thu, 25 Oct 2007 00:00:00 GMT  On 10/24/2007 JoAnn M. wrote:I've been on the same drugs & a lot more - its the Taxol that mostly causes the neuropathy - it does get better - in time.  You said you completed 18 rounds of chemo & are now on Avastin - Avastin can't run alone are you still on the original drugs with it.  I thought the tiredness would never go away the important thing to focus on is that your CA125 is so low - that's great..I just finished with Avastin and it seems to have done well.  I also had  Stage 3C I wish you luck & watch your diet.  I heard so much about the importance of eating less fat & less sugar.  Thanks for your response.  Hope you are doing well.  My clinical trial is only Avastin running with no other drugs.  I also have heard a lot about less sugar as well as flour.  I have yet to change my diet, just trying to keep my weight up.  Good Luck and Bless us all. Marymskcc Mon, 29 Oct 2007 00:00:00 GMT I see that your markers are low. I am also 3c and on a study for six months I received three drugs and now on avastin alone and my makers are going up. I was dignosed dec. 2006 I am worried. I just had chemo on wednesday had another ca 125 taken, will be getting another ct scan on Wednesday and seeing him on monday. I had two ct scans and they showed nothing. We are all here in the same condition together I pray but need to talk to someone that is going through what I am going through help me please. Dlove Sun, 11 Nov 2007 00:00:00 GMT  On 10/24/2007 Ovcasurvivor wrote:I would like to suggest that you could find some excellent answers to your questions on the ACOR ovarian cancer discussion list. ACOR stands for Association of Cancer Online Resources. go to www.acor.org, and look for the tab that says mailing lists. Locate the list for ovarian cancer, and follow the instructions to subscribe. The subscription is free and you do not get any junk mail or spam as a result of joining. The list is an excellent resource, over 1000 women who have ovarian cancer are on this list, and the answers to questions such as yours are easily found through the experiences of other women who have gone through this. It is truly an excellent discussion forum for women with ovarian cancer. Quite a few on that list are on the Avastin regimen and can share their experience with you, as well as give advice on the chemo and it's effect. By the way, as a personal note, I would agree that too much chemo can be a bad thing. With your CA 125 under control, why not suggest to your doctor that you take a break? If you feel like it's killing you, it probably is. Remember, this stuff is like a poison - it kills the cancer cells but also kills a lot of good cells too, like red and white blood cells. It's not a bad idea to stop or take a break if you are feeling this bad. There is really not great evidence to show that extended chemo improves overall survival. I tried to acess the web site you mention and it was very difficult, 3 different times and it still would not recognize the pass word that it had confirmed by email to me. It does look like a great site if you could get into it. Darlene7 Sat, 05 Jan 2008 00:00:00 GMT  If you feel comfortable sending me your email address, I can have the list owner contact you and help you with any sign in issues. Typically when you subscribe, there is a several step process, and usually the site sends you a confirmation email with a confirmation link (not just a password) and you need to use that link the first time to sign on. Also the password may be case sensitive so if you set it up in all caps and then use cap and lower case it may reject it. I realize you probably don't have time to deal with all this, but if you want to provide an email address I will gladly have the list owner contact you to figure out how to get you onto the discussion board. I can tell you this site is well worth it. You can email me at: (email address spelled out in long form to avoid spambots trolling for email addresses) --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--    You will have to switch the "at" for an "@" and the "dot" for a .  If you contact me I will try to help you get on the site. On 1/5/2008 Darlene7 wrote: On 10/24/2007 Ovcasurvivor wrote:I would like to suggest that you could find some excellent answers to your questions on the ACOR ovarian cancer discussion list. ACOR stands for Association of Cancer Online Resources. go to www.acor.org, and look for the tab that says mailing lists. Locate the list for ovarian cancer, and follow the instructions to subscribe. The subscription is free and you do not get any junk mail or spam as a result of joining. The list is an excellent resource, over 1000 women who have ovarian cancer are on this list, and the answers to questions such as yours are easily found through the experiences of other women who have gone through this. It is truly an excellent discussion forum for women with ovarian cancer. Quite a few on that list are on the Avastin regimen and can share their experience with you, as well as give advice on the chemo and it's effect. By the way, as a personal note, I would agree that too much chemo can be a bad thing. With your CA 125 under control, why not suggest to your doctor that you take a break? If you feel like it's killing you, it probably is. Remember, this stuff is like a poison - it kills the cancer cells but also kills a lot of good cells too, like red and white blood cells. It's not a bad idea to stop or take a break if you are feeling this bad. There is really not great evidence to show that extended chemo improves overall survival. I tried to acess the web site you mention and it was very difficult, 3 different times and it still would not recognize the pass word that it had confirmed by email to me. It does look like a great site if you could get into it.   Ovcasurvivor Sat, 05 Jan 2008 00:00:00 GMT Hi Paula! Just wanted to say THANKS! Just read your message and made me smile! My sister in law was diagnosed stage 3C during the birth of her daughter back in July......I'm trying to get her connected with positive individuals like yourself. I am trying so hard to be strong and keep her positive but she is so scared........THANKS! to all who write here...I'm glad I'm here!Lisa  teamsheryl Fri, 19 Sep 2008 00:00:00 GMT