CancerCompass message board discussion started by Sandy L. on 10/1/2003 http://www.cancercompass.com/message-board/message/all,946,0.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 was wondering if anyone out there has been diagnosed with Fallopian Tube Cancer as I have? My diagnosis was Stage IIIc and I'm on my 3rd round of chemo - Doxil. Was on Taxol/carbo at first, then taxotere. I'm interested in also joining any forming online support groups. Ideally, if there is one with Fallopian Tube Cancer patients I'd love to know about it. If not, are there any others who'd like to get together and form one? Would also like to hear of any and all Ovarian Cancer support groups online as well. Thanks for any info. Sandy L.L. Sandy L. Wed, 01 Oct 2003 00:00:00 GMT Sandy- My mom was dx with this cancer in May 2002. It was found after her radical hysterectomy for what we thought was primary cervical cancer. Only after the pathology report came back did we find out she had fallopian tube cancer. It was never properly staged since the surgeon did not want to go back in to do this so she was treated as a stage 3. Her last chemo tx was Oct 2002 and she has done well so far knock on wood. There is debate on where her cancer started but we all think it did start in her tubes and skipped to her cervix. There's an interesting article regarding skip metastasis that fits my mom's profile. I hope you are doing ok with your cancer. I see it has been a while since your originally posted. Good luck to you. KarynB karynb Fri, 02 Jul 2004 00:00:00 GMT Greetings K-- I have been dx with this last month. It has been a hard time finding information on this. I have had one tube removed with a tennis size tumor removed, My regular doc, gyn doc thought that I had problem with my ovary, in surgery it was a shock to the gyn, that he just removed it and left a small (one inch) tube left. Possibly thinking that the cancer surgeon would go in and take everything out. I don't want to do this. I am trying to go the alternative route. I need more information than "just remove everything". Have you found a source yet? The cancer surgeon said that this had started in the lining of the tube. Hope things are going well for you. Regards, Padarnell Padarnell Mon, 08 Nov 2004 00:00:00 GMT Hi Padernall- I'm sorry to hear of your diagnosis. From everything that I've read over these last 2 years, tubal cancer is tricky in that the cancer is in a 'tube' with open ends. Therefore the cancer cells have a way to get out into the abdomen. The proper surgical treatment is to remove everything and stage the cancer by doing a 'wash' of the inside of your abdomen. There's no other way to stage it. My mom's tubal cancer was found after the fact and the surgeon did not want to do more surgery to stage it, so they gave her the max treatment of 6 cycles of chemo. Her tumor was approximately 8-16mm, can't quite remember now. I'm very surprised with a tennis sized tumor your ob/gyn didn't just remove the whole tube. I don't have any advice on alternate treatments. All I know about this disease is it is important to be vigilent in treatment like you would if you had ovarian cancer. It is extremely important that you get second and third opinions, preferably from a university type program or doctor. Time is of the essence with this diagnosis. I know I haven't been much help. I'm sorry I couldn't direct you better. If you do find some alternative treatments, please let me know. I'm collecting information as much as I can. Please take care and I wish you lots of luck! Karyn karynb Tue, 09 Nov 2004 00:00:00 GMT Hi, My mom was just dx with Fallopian tube cancer and has had her ovaries and her tubes all taken out plus 1 lymph node has a tumor in it. She is starting next week on chemo taxol/carbotin combo for 6 - 8mo. She isvery scraed b/c she was told by a freind that the prognois was worst for fallopian and that she maybe had 2 years left. I see that your mom was dx in 2002 and your last email was 2004. Is she still in remission? Has she had to go back thru any more rounds of chemo? Thanks for any info on this rare diagnois Jilltwill Jilltwill Wed, 16 Mar 2005 00:00:00 GMT Hi, My mom was just dx with Fallopian tube cancer and has had her ovaries and her tubes all taken out plus 1 lymph node has a tumor in it. She is starting next week on chemo taxol/carbotin combo for 6 - 8mo. She is very scraed b/c she was told by a friend that the prognosis was worst for fallopian and that she maybe had 2 years left. I see that your mom was dx in 2002 and your last email was 2004. Is she still in remission? Has she had to go back thru any more rounds of chemo? Thanks for any info on this rare diagnosis. Jilltwill Jilltwill Wed, 16 Mar 2005 00:00:00 GMT Sandy, There are so few of us with this particular cancer that maybe forming our own group would be a good idea. Maybe I'll try starting a yahoo group and see what happens. Will keep you posted. Pam Pambsky Wed, 18 May 2005 00:00:00 GMT Is there a website or organization dedicated to Fallopian tube cancer? Eyoste Wed, 27 Jul 2005 00:00:00 GMT I was recently diagnosed with FTC stage 3c after carrying around a 10cm mass for 5 years. All the docs thought it was endometriosis. Since they waited so long to bipsy, I now has metastis. I can't have chemo or radiation due to a rare bone marrow disorder. I'm forsed to look for alternative or targeted therapies. What treatment worked for you and who is your doctor? Any news on the support group? thanks a bunch jonie Jonie Tue, 11 Oct 2005 00:00:00 GMT Sandy, I am searching for people who have had this type cancer. How are you doing? My mom has this cancer. Anna Fallopiantubes Fri, 21 Oct 2005 00:00:00 GMT Dear Anna, I have falopian tube cancer stage 3 am on 6 chemo treatments I would be interested to know how you are doing? Kindly, Britta Britta Thu, 27 Oct 2005 00:00:00 GMT My mom has fallopian tube cancer stage 3. Today she had her second chemo. She is doing fine right now. Her hair is falling out. I cut it very shot tonight. She basically has a lot of fatigue and some depression. We started her on meds for depression today. It will take a few weeks to work. Where are you in the treatment schedule? Are you at the 6th chemo yet? Please keep in touch. Anna Fallopiantubes Thu, 27 Oct 2005 00:00:00 GMT Dear sandy. Am on my 4th. chemo taxotere. am awfully tired. i am 64 years old and have never been sick before. Have 2 more treatmennts to go!! what ever you wish to know i hope to be of help to you. Kindest thoughts and look forward to hearing from you. Britta Jensen-finke Britta Thu, 27 Oct 2005 00:00:00 GMT Dear anna thank you. Your mom and i are on the very same treatment. Today i start number4 chemo have then 2 left. I am 64 and was in Denmark visiting my mom who is dementia and in a nursing home. Started there to have dreadful stomach pains,came home and saw the doctor after a few round abouts they found cancer of the remaining fallopian tube [the other tube i had an ectopic pregnancy 35 years ago.] it had spread into the lympnodes.so everything was surgically removed andI am at stage 3. I have chemo every three weeks. the treatment is aggresive called taxotere. Most of the time i feel hopeful but lately i am very tired,having help with depression.we will come through this with flying colours!!!! kindests thoughts Britta Britta Fri, 28 Oct 2005 00:00:00 GMT Good to hear from you. My mom seems to be feeling a little better this time after her second chemo. I think the steroid that she has to take helps with the fatigue for the two days after treatment. Do you have the take the steroid? It is just for the days after chemo and then it stops until the next treatment. She is taking lexapro for depression (started it yesterday). Generally she is a VERY up person but this cancer thing is trying to kick her butt. I know she will beat it. You will also beat it. Try to stay positive and surround yourself with positive people. Take care of yourself and keep in touch. Anna Fallopiantubes Fri, 28 Oct 2005 00:00:00 GMT Dear Eyoste, Have you learned anything since your message about a website or organization supporting those with fallopian tube cancer? I have just been dx as IIb following a total hysterectomy 3 wks. ago. It appears there is not much research on this cancer and even prognosis statistics are shaky because its so rare. Thanks! Cityrose Cityrose Fri, 06 Jan 2006 00:00:00 GMT I have only just found messages from people suffering this type of cancer. Are any of you still monitoring this message board? I am in remission after having a complete hysterectomy, six treatments of taxol/carboplatin and a second operation halfway through my chemo. I was dx as Stage 2C and my treatment finished in December 2003, so have been in remission just over 2 years. I was given a 50/50 chance of a recurrence. To start with I was dx as ovarian cancer but after the lab results came back they told me it had originated in the fallopian tube. Hope you are all doing well and like you, would be interested in more information & support for this type of cancer. Judy (New Zealand) Judy nz Sat, 04 Mar 2006 00:00:00 GMT Dear judy,so good to hear that you are in remission!!!!! I was diagnozed with Ftc stage 3 in august 2005. finished chemo rounds and am now waiting for the first bloodtests plus the CA125 test to come back. Am still very tired.Please tell me how you handled all this ??? love Britta Britta Sat, 01 Apr 2006 00:00:00 GMT Dear Britta Hope you have now had the results of your first CA125 and that you are in full remission. Yes it took me a long time to feel better. I was told to give myself at least 2 years! I still get tired at times and it has now been over 2 years but perhaps the younger you are the quicker the recovery. Did you have the taxol/carboplatin combination? Found it really knocked me each time Please keep me informed as to how you are progressing and wish you all the very best. Judy Judy nz Sun, 02 Apr 2006 00:00:00 GMT dear Sandy, i have the same diagnosis as you have.finished Chemo 3 month ago. Mine was July 2005. how are you doing ??? Please write Thank you Britta Britta Thu, 11 May 2006 00:00:00 GMT Dear Sandy and others whose postings I've read: I was diagnosed with tubal cancer December 2003, following a complete hysterectomy for a benign ovarian cyst. This past March (2006) my CA125 became elevated, and my gyn oncologist found a tumor in the upper vaginal area. I had surgery in June in which he removed that tumor and an additional one he found attached to the outside of my colon; three lymph nodes, all metastatic, were removed as well. I just completed my second round of chemo last week (Taxol and Cysplatin)and so far so good: CA125 went down to 4, and yesterday's pelvic exam was clean. I am trying to have a positive attitude but this is all very scary. Any words of encouragement would be greatly appreciated. DaviC Davic Thu, 24 Aug 2006 00:00:00 GMT Hi I had fallopian tube cancer 2 years ago and also chemo. I think it is important to go the doctor appointments and don't rely completely on the ca125 results. crackers are good during chemo and no chocolate. please let me know about your mother. Criss Fri, 25 Aug 2006 00:00:00 GMT Dear Judy. thank you for your e-mail. Yes to your ??? My ca 125 went up to 1080!!! scan test did still not show cancer. It is still going slowly am still very tired. Finished chemo last December. Where in N.Z do you live? Please tell me if you too have high ca 125 tests. Also I have stomack pains. They put me on tomaxafen a month ago. So at this stage i am feeling pretty low. love Britta Britta Tue, 26 Sep 2006 00:00:00 GMT Hi Britta Sorry you are having stomach pains and that your CA125 levels are high. Have they always been high or did they come down after you finished your treatment? So far I'm lucky and my CA125 has stayed fairly stable at 14-18 since I finished chemo. Yes you will still be feeling tired. Hope you have better news soon. I go back for a checkup in November and as this time it is six monthly instead of three, hope nothing has gone wrong in this time!! Where do you come from? You asked where I live in New Zealand. I live in Auckland. All the best to you. Judy Judy nz Tue, 26 Sep 2006 00:00:00 GMT Dear judy. thank you for your response it felt good to hear from you . Am glad that you are doing well and that you will continue to do that. I finished chemo last Dec. Have had elevated 125 test and have had 3 scantest all negative. Now last week my 125 went from 89 to 1087!!!!! Again nothing showed up!.. Will see the surgeon tomorrow, as i continue to have stomack pain. I am a little down these days,as i am so tired. My cousin live in Tauranga and we have visited them, beautiful country!!! I am originally from Denmark, have lived in San Fransisco area for 40 years. I do hope to hear from you Judy. I am 65 and have two adopted children. my husband died of Leukemia 10 years ago. All the best of good luck to you. Britta Britta Tue, 26 Sep 2006 00:00:00 GMT Dear judy. I am just now told that my cancer is back. the ca125 went from 89 to 1080!!! catscan showed several cancer spots in my stomack. I am on vicaden as my stomack hurts. Will start Chemo this monday. I have been in remission for only 9 months. I am as you will understand very sad and depressed about it all. Please stay in touch and i want to know how you are doing. love Britta Britta Fri, 29 Sep 2006 00:00:00 GMT Dear Britta I am so very, very sorry that your cancer is back. It does sound though that your doctors are getting on to it straight away which is a good thing. Suggest you read some of the messages on the Ovarian Cancer site as Fallopian cancer is treated in the same way. There are survivors on these forums who have had more than one recurrence and are still going strong so that does give you hope, doesn't it. Stay strong. I hope you have a supportive family & friends to help you through the tough times. Will be thinking of you and please stay in touch. Love Judy Judy nz Sat, 30 Sep 2006 00:00:00 GMT Hello I am also a survivor of fallopian tube cancer. My last chemo was June 17, 2005. I have neuropathy in my right foot and a little in my fingers. Otherwise I have been doing very well. I saw my oncologist in September and after telling her I had some discomfort she ordered a PET scan and cancer has come back in 2 lymph nodes however my CA 125 was 13. The areas are small but it was hard dealing with it coming back but I know it is common to have reoccuranes. I am going to start chemo on Friday, using Doxil this time around. I am very open to any questions about what I went through etc. before and after having surgery and chemo so please feel free to ask anything. I hope you are doing ok! Sue Flamingograndma Wed, 01 Nov 2006 00:00:00 GMT Just read your message and hope the chemo is going well. My CA125 is still normal but after reading that yours was too but the cancer had returned realise that this test is not always correct. We do not have a scanner in New Zealand that does the PET scans so cannot ask to have that done however I am feeling well so am not too worried. Please let us know how you are progressing and good luck. Judy nz Thu, 09 Nov 2006 00:00:00 GMT I'm on Doxil this time around and doing ok. I will have chemo every 28 days. When I had chemo before I was so sick to my stomach all day every day and this time I have taken Emend to control that so all is going well so far. I have my next chemo December 1st. Do they have ct scans? PET scans go deeper into your tissue, I believe, but ct scans can also pick it up. My 2 areas are small so I'm hoping Doxil will do it's job so I am rid of it again! Sue Flamingograndma Fri, 10 Nov 2006 00:00:00 GMT Hi Sue Glad to hear that the Doxil is going okay and hope you have a positive outcome at the end of your treatment. Yes we have CT Scans and all the other type of scanning equipment here except for the PET scans though we can fly over to Australia and have them done. Keep posting your progress and good luck. Judy Judy nz Fri, 10 Nov 2006 00:00:00 GMT