CancerCompass message board discussion started by Kaypat123 on 6/2/2005 http://www.cancercompass.com/message-board/message/all,2188,0.htm Thu, 21 Aug 2008 00:00:00 GMT Thu, 21 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, My mom was just diagnosed with Fallopian Tube Cancer, Stage 3. She had surgery to remove a mass that they knew about on the outside of her colon, and when they went in, they determined that the mass was cancerous, and it was not the primary source. It appears to have originated in the Fallopian tube, and spread up into the abdominal wall. During the surgery, they removed the mass, a small part of the colon that it was attached to, plus her ovaries, uterus and fallopian tubes. Now they want her to undergo 6 rounds (21 day intervals) of chemo. She is trying decide whether to proceed with chemo or not. She is hesitant because she has had many friends go through chemo (for other types of cancer), without positive results. Some of my questions are: For those of you also diagnosed with Fallopian Tube cancer, did you have high CA-125 numbers to begin with? My mother's was 25. The reason I ask is that if her number was normal to begin with, how can that be a good way to see if the chemo is "working"? (They said that was one thing they would check throughout the chemo). Has anyone else had similar surgery, where they took all cancerous material that they could see? And has anyone refused chemo and gone a different, more alternative route? Lastly, for those who have had 6 rounds of chemo,(she will be getting taxol and carboplatin)how were the side effects for you? I realize it's different for everyone, but still good to know. There are so many questions, and it's quite overwhelming at the moment. Any information would be greatly appreciated. Lynn NH Kaypat123 Thu, 02 Jun 2005 00:00:00 GMT Lynn: I am sorry to here about your mother's illness. She is very lucky to have a concerned daughter to help her educate herself about the road ahead. I would suggest that you go to a website for women who have had hysterectomies, it is called "Hystersisters" and look under the cancer concerns message board. You might have to register (no charge), but it will be worth it since I believe that your mother's disease is rare and the women on that site seem to know all of the latest research about the gynocological cancer field. Submit your question and you should find someone who will be able to answer your questions. Please tell her that although her friends have had chemo, different types of cancer have different results to treatment and she should leave all her options opened. My best wishes to you and your mom. LB Sthair Tue, 07 Jun 2005 00:00:00 GMT Hi Lynn, My mom was diagnosed in October of 1999 after many mis-diagnoses (the last one was gallstones). By the time they finally figured it out, her CA125 was in the thousands and she required immediate surgery for a "mass debulking". The cancer had spread from the tube out into the abdomenal cavity. It had constricted part of her colon, and was pushing her stomach out of position. She had a complete hysterectomy and 6 inches of colon removed, along with her omentum (the fat layer in front of her abdomen). They even removed tumor attached to the underside of her diaphragm. She had three rounds of chemo and then an additional surgery in February of 2000 to clean up the smaller (grain of sand) sized tumors that remained as well as scar tissue from the first go-round. She was on rounds of chemo almost continually for the next 5 years -- she'd do one type until she no longer responded, and then move on to another, etc. until she ran out of combinations. She did take one summer "off" with no treatment. Throughout this entire time the doctors were happy to keep her CA125 below 100. I think the lowest it ever got was in the high 30s. Even though she did not really handle the initial surgery well, due to some complications, she had a good quality of life for the last 4 1/2 years (she finally was removed from chemo last August and passed away on September 11th). Her main side effects were varied (depending on the drug cocktail at the time) but not as bad as I had thought they would be -- hair loss, severe anemia (thank God for Procrit), and occasional nausea that was controlable with medication when necessary. The hardest part for her was that her brain still thought she could accomplish a lot in a day, but her body couldn't always follow through. It forced her to really choose what was important for her to be spending her energy on -- and even though the disease process was anything but positive, I believe she was a happier person emotionally at the end. I have never laughed so much with her as I did in that five years -- and she learned to laugh at herself, heartily! We used to crack up at how she got her HMO to pay for weight reduction surgery, albeit an extreme method. I hope some of this information was helpful -- I can completely empathize with what you're going through. If there's anything else I could fill you in on, just ask. Karen Karenm Wed, 22 Jun 2005 00:00:00 GMT What a GREAT place, I have recommended it to others and go on it every day. There is so much to learn and they are a great, supportive group of women. Thank you so much for leading me to it! Lynn Kaypat123 Wed, 22 Jun 2005 00:00:00 GMT Hi Karen, I cried when I read your post. You must certainly be proud of your Mom for how hard she fought and how brave she was. Your post demonstrates one of the "positives" of a diagnosis like this..you have some time to make some memories, appreciate and savor all the things you might have taken for granted before, and even laugh. Many people never get that chance, and for that I am grateful. My mother will start treatments next week. I don't know what the future holds, but we'll deal with it a day at a time. For now I will love and support her as much as humanly possible, and cherish every minute. I'm sorry to hear your mother passed away. She was lucky to have such a caring and supportive daughter. I'm glad you have some happy memories to reflect on, and know that she is now at peace. Thank you very much for responding to me. It helps a lot. Lynn Kaypat123 Wed, 22 Jun 2005 00:00:00 GMT Hi Lynn D, On May 11th I had a radical Hysterectomy. They found Fallopian tube cancer and cancer in two lymph nodes. All my female organs, 2 lymph nodes, appendix, and the lining were removed. This discovery was the result of asking for a CA 125 blood test. I had received an email saying if his wife had received this test yearly she would be alive today. I was having some spotting and cramping, however the doctor said this was due to very thin lining that was cracking. I was told I did not need the CA 125. As far as he was concerned I had a very healthy exam and this test was only for people who were having problems. A very shocked nurse called me and said my CA 125 came back 832. The normal high is 35. Two days later I was on my way to a larger city to see an Oncologist GYN as there was not one in this area. I was in surgery May 11, 2005, a week later. I don't know why your mom CA 125 was so low. I know they say that it isn't always accurate. I will be having my 3rd chemo on the July 21st. I also am having Taxol and Paraplatin. My schedule is also chemo every 21 days for 6 treatments. So far I have done very well. I lost my hair sixteen days after my first chemo, but I was ready with a wig. I had some tiredness after the first chemo but I was also dealing with my surgery. I still find I don't want to stand very long, I am always looking for a chair to sit down. But at this point what is bothering me the most is a very painful pricking all over my body. Sometimes it settles very intensely in an area of my body and can last for several hours. However, I have read that only 1% of cancer patients seemed to be bothered with this itching. I have taken nausea medication so I have not had any problems in that area. I have a very good outlook on life and am very much as peace with my situation. I feel I had a true miracle in that it was located before stage 4. I know that God is in control, and I won't leave this world until He says so. I could have gone quickly in a car accident and not had this extra time to be with my family. My doctor said that 40 out of a hundred make it past 5 years. Maybe your mother and I will be one of them. My mouth has a bitter taste sometimes first thing in the morning, so I start my day with a nice slice of cold watermelon and then have a large dish of cut-up fresh fruit with breakfast. I'm grateful I'm going through summer months with all the fresh fruit in season. Maybe all the fresh fruit is helping me. I have decided to go through with the chemo, and then look for a diet that will help cancer patients when my chemo is finished. I wish the best for you and your Mom. Life sometimes throws us a curve. Keep your chin up!! Shirl Fri, 15 Jul 2005 00:00:00 GMT Hi Shirley, Thank you for your reply. Your situation is very much like my mom's situation, other than the CA125 test. Fallopian Tube Cancer is SO rare, that it's very interesting to hear stories of others with the same diagnosis. My mother had her first chemo treatment 2 weeks ago, on July 7th. She felt great at first, then on the 3rd day after treatment through about her 6th day after treatment she was very achy and tired. On the 7th day she felt better. She is also starting to see a Naturopath as well. Her oncologist supports it completely and she's heard wonderful things about combining Naturopathy with chemo. Thought I might also mention that I just read an absolutely fantastic book that my mom is now reading as well called "There's No Place Like Hope" by Vickie Girard. It is very easy to read and very inspirational. It is a very "down to earth" look at the process she went through (she is a cancer survivor)with some very practical suggestions. I wish you all the best as you continue with your treatments and hope your 6th round will be a whole new beginning for you. Thank you again. Lynn Kaypat123 Sat, 16 Jul 2005 00:00:00 GMT Hello Lynne, I was diagnosed with stage III FTC Oct 04. I had chemo (taxol/carbo) and radiation after a radical hysterectomy with the removal of some lymph nodes. The only side affects I had with chemo was hair loss and itchy feet and hands. I was told sometimes the itching doesn't go away but mine did. My CA125 before surgery was 800 and the last one was 4. After a year, I have regained almost all feeling in my thighs. I was one of the lucky/unlucky people that didn't loose my appetite and I gained weight. My doctor advised against eating your favorite foods during treatment because it can turn you off to it. I didn't listen and now I no longer like my favorite ice cream. I read as much as I could find about cancer and treatment. I was warned that treatment could cause constipation or diarrhea. I read that eating yogurt with live cultures would take care of the problem. I ate yogurt before each treatment and never had a problem. I now have checkups every three months for two years and then every six months for three years. I will have an MRI on Nov 10 to make sure everything is okay. If it is my doctor is going to remove my access port. She didn't want to remove it until after one year incase I needed to repeat treatment. My doctors did tell me to make sure I got out of bed each day and try to get back into a routine as soon as possible. She said that it would help you recover faster/better. I know you want to "baby" your mother but I think it is better to let the person do at least one thing today they didn't do yesterday. Celebrate doing the small stuff. Linda Jean Mudname Mon, 31 Oct 2005 00:00:00 GMT