Latest Fallopian Cancer discussions http://www.cancercompass.com/message-board/cancers/gynecological-cancers/fallopian-cancer/1,0,119,38,73.htm Sun, 06 Jul 2008 00:00:00 GMT Sun, 06 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi I have not seen any new activity for fallopian tube cancer.  Is everyone doing OK.?  Anyone is remission and how is everyone feeling?? http://www.cancercompass.com/message-board/message/all,23928,0.htm rybar5 Sun, 11 May 2008 00:00:00 GMT My mom was first diagnosed with stage 3c fallopian tube cancer in August of 2005.  They did debulking, a complete hystorectomy and six rounds of chemo (carbo and taxol).  In January 2007 it came back in her lymph nodes.  She did 5 rounds of chemo.  Today (03/19/2008) she called me and her CA 125 is at 80.  It was at 8 so this is not good.  She will have a CTscan on Monday, March 24, 2008 to see what is going on.  My mom is now 73 years old.  She seems to be feeling okay and is in a relatively good mood about what is going on.  I wonder if there is anyone out there who has been on the 3rd round of this cancer and is doing ok?  I really need to feel some hope.  I had a baby on August 11, 2006 (my mom's first grandchild) and want my mom to see her grow up.  My daughter is 19 months old and she really needs to know my mom.  My mom is the most amazing person I have ever known.          http://www.cancercompass.com/message-board/message/all,22158,0.htm Fallopiantubes Wed, 19 Mar 2008 00:00:00 GMT Hello:I found this site and see a number of women on the message board who are dealing with fallopian tube cancer. I recently had laproscopic surgery to check out some masses that were found on an ultrasound and have been told I have fibroids and endometriosis and a hydrosalphinx (water in the fallopian tube). I had one CA 125 test that was 41, and was told it is only slightly elevated by one doctor and a concern by another. The main focus now is on the tube and whether there may be more going on in that area than just fluid. The doctors want to rule out cancer in the tube which of course, will require open abdominal surgery and complete hysterectomy has been recommended. A year ago, I was really not feeling well with intestinal problems and a CT scan was done, but nothing was reported at that time. A year later, another CT scan was done with the recent findings and apparently there was something going on with the tube, just did not make it on to that original report (which of course, has me upset!) I am interested to know what other women have experienced with their symptoms before they were diagnosed? I had the intestinal problems last year which are better now and more recently, a bit of spotting in between periods as well as the fluid detected in the tube. Any information you could share on what you experienced before your diagnosis would help me immensely. I am trying to make an informed decision given the major surgery being suggested! Beth     http://www.cancercompass.com/message-board/message/all,18988,0.htm Jaguarbeth Tue, 18 Dec 2007 00:00:00 GMT Hello looking for fallopian tube survivors.  I would love to hear you stories and any advice you can give me on this .   I truly appreciate it.Jeanne http://www.cancercompass.com/message-board/message/all,18095,0.htm rybar5 Mon, 19 Nov 2007 00:00:00 GMT Hi, anyone out there having problems with normal scans, feeling great, looking great and rising CA125's.  I had breast cancer 10 years ago, both removed and reconstructed then5 years ago had fallopian tube, not a metastases, a primary, got it early, encapsulated.  BUT have trouble with rising CA125's.  Have been through Femara, Tamoxifen, Arimidex, the Faslodex shots and still rises, so did a round of just carboplatin.  It dropped like a rock then went up during treatment, to only 31 which is still normal, but in three months it has risen to 48, which is not recommended for treatment, so they say "WAIT" another 3 months, if elevated slightly will still wait, and then if substantially elevated, since I am sensitive to the test (which is supposedly a good thing), then they will do another round of carboplatin and if it rises during treatment they will not add Taxol, thyat nasty thing, they will add a new medicine recommebnded by Dana Farber Cancer Center which you do not lose your hair, no neuropathy and no nausea. I have been blessed I have handled my 3, chemos good.. mostly fatigue and emotinal.  Still walking a lot and staying busy.  Anyhow a friend who had a friend whose CA125's were 15,000 and they couldn't find anything started drinking this all natural, no hormones, anything juice called Acai, berries from the amazon rain forest... her counts dropped to 7500...she is still on it.  Has anyone out there tried it.  it does not interfere with any of your chemo, chemo meds or meds in general...  I ordered a bottle and will try it...  Everytone telle ms I should go to Dana Farber but if I have to do chemo again I can handle it, don't want to but I can, just want to figure this out as I am sure the docs do.  Thanks for any input..... soccergranny  http://www.cancercompass.com/message-board/message/all,16808,0.htm soccergranny Fri, 05 Oct 2007 00:00:00 GMT I'm looking for fallopian tube cancer survivors.  Stage 3-4.  Any out there? charla  http://www.cancercompass.com/message-board/message/all,16737,0.htm charliT Wed, 03 Oct 2007 00:00:00 GMT The long run If you are browsing these pages, I am certain you carry tons of uncertainty and sorrow in your feelings. It is not unlikely that you also develop some repulse by the constant afflictive tone undergoing every word you read about this disease, a tone that constantly undermine our strength, leaving us even weaker to face what is usually a flush of though decisions, doubts and pain.Maybe this is the main reason I kept myself from write in all these forums for such a longtime. However for me these are though times, and they demand though talk.I sincerely had no intention to offer cheap advice. Most of my experience may not apply to everyone. Despite the common nature of this disease, we are all blessed with singularity, making us unique in our beings and above all, in our decisions to manage life.All journeys begun with a tale and this is mine.In 2004 I found out the person I would like to share my life with. My girl in fact was a long time college sweet heart I did not meet for a decade, and despite the years, the flames were there.One year before she was diagnosed with GBM IV, undergone surgery, radio and chemo (Temodar), the whole package you are all familiar to. Despite the odds, I decide to not betray my own feelings, and without second thoughts, started our own life together. I was not naïve regarding the disease. Ironically at that time, I found myself working with radiotherapy devices, and cancer was somehow I daily issue in my professional life.If you already made the counting she is a four year survival, completing five in November.There are no days that were not lived fully and intensely. More than one time, we kept ourselves planning vacations to the very next day. Putting ourselves on the places we dream of, and best of all, living life in every small thing completely. It may sound desperately, I disagree, it was only right.No wonder we got to a point physicians elected her case as an astonishing out-of-the-curve. In 2006 they decided to stop the chemo rounds, afraid of causing some chemo resistance in those remaining cells. This event also brought us to another decision. After consulting each of the doctors involved about their opinion, and also fighting our on demons, we decided it was time to fulfill our dreams with a child.Despite chemotherapy – and after a cautiously wait for its effects to wash out – fertility was not a problem, and in the end of 2006 we found ourselves marveled in front of a two lined home pregnancy test.In fell lines, it is obvious that it is not only joy. Fears were all over us. The remission nightmares mixed with all the parenthood related anxiety, were terrifying.In a dark twist of fate, during the 27th week of pregnancy, one MRI brought dreadful news. It was back.Controlling its evolution in a two week interval, we went as close as possible to a reasonable due date, for a schedule c section. Our daughter born remarkably healthy, after a 35 week pregnancy, and went home after the usual three days stay at the hospital.The very next week we went trough surgery. The tumor was completely removed, and the motor deficits she carried, could be considered mild compared to an expected full paralysis of the right-side. For weeks she struggled in daily physiotherapy sessions to regain her walking abilities and it pay out quickly with her achieving the one goal she promised to herself while in bed at hospital: be able to walk and carry our child in her own arms.It all may sound astonishing, but as I said initially, these are though times.Two months after resection, the tumor is back according to the MRI. There are no other signals of neural damage, despite those remaining from the surgery. Temodar cycles are back, and up to now another round of radiotherapy is out of question due to the lesions it may cause.Summoning, black days.Even in my sleep deprived thoughts, watching the gigantic amount of medicines falling from our shelves strangely sharing the space with baby care manuals, I can assure. There is no reason to change a thing for this disease. It will of course perform a monster alteration in your way of life, but there is no reason to let it alter your being. I choose more than ever to help my girl to find grace in every little moment, despite the blues of uncertainty. Uncertainty itself is more painful than fading away. The tricky task is to catch the moment, hold it tight so it can always be yours. It will end surely. As pain will. And when both ceased, you will have to choose which one you will remember the most. Sincerely, Mazzo http://www.cancercompass.com/message-board/message/all,16533,0.htm Mazzo Wed, 26 Sep 2007 00:00:00 GMT Hi, can someone who has fallopian cancer tell me what are the symptoms before they were diagnosed with the cancer? I have had discharge for over a week now and some irregular bleeding. I read that these could be symptoms of fallopian cancer or uterine cancer. any feedback would be greatly appreciated! http://www.cancercompass.com/message-board/message/all,16383,0.htm curioustoo Fri, 21 Sep 2007 00:00:00 GMT HI are there any fallopian tube survivors out there??  I see a lot of messages but looks like people have not been back on.  I am searching for people to talk to..  My mom was dx.  I hope all of you are doing well and will keep everyone and your families in my prayers. Thanks http://www.cancercompass.com/message-board/message/all,16029,0.htm rybar5 Mon, 10 Sep 2007 00:00:00 GMT Hello everyone I am looking for everyone one with fallopian tube cancer.  This is such a RARE disease and limited information on it.  My mom was dx July 30 by MRI had a hysterectomy with primary fallopian tube ca with mets.  Still a sm remainder on the outside lining of her rectum.  She starts chemo taxol/carbo next week.  She is IIIB and clear cell carcinoma.  Anyone else out there fighting this?  We would like to be armed with as much information that we can.  We hope to raise awareness for this rare cancer affecting our loved ones. ThanksJeanne http://www.cancercompass.com/message-board/message/all,15975,0.htm rybar5 Fri, 07 Sep 2007 00:00:00 GMT Hi, Just wondering if there is anyone out there that is being treated for fallopian tube cancer right now that just needs to vent.  I'm being treated for the 4th time in just over 5 years and I would love to be able to "talk" with someone who could relate. http://www.cancercompass.com/message-board/message/all,10829,0.htm Turtlebugs3 Thu, 29 Mar 2007 00:00:00 GMT Hi, I am Judee and this is my 1st post.  I was told I might post my question on this board since the fallopian board is not quite as active.  My mother had surgery 3 weeks ago and found Stage 3b fallopian cancer.  Her CA 125 number then was 74.  The doctors feel that they got it all.  She is almost due for round 2 of Taxol and the belly wash.  Her CA 125 number today was 35.  The doctor said that it should not be over 25.  What does this actually mean? Thanks, Judee http://www.cancercompass.com/message-board/message/all,8512,0.htm Judeed Fri, 29 Dec 2006 00:00:00 GMT HI, I am Judee and this is my 1st post.  My mother had surgery 3 weeks ago and her CA 125 number then was 74.  They did surgery and feel that they got it all.  She is about to start her 2nd round of chemo.  Her CA 125 number came today at 35.  What could that mean?  The doctor expected it not to be over 25.   Thanks, Judee http://www.cancercompass.com/message-board/message/all,8511,0.htm Judeed Fri, 29 Dec 2006 00:00:00 GMT If you are reading this Britta please let me know how you are geting on with your chemo treatment and whether your CA125 levels have decreased. Have been thinking of you and would really like to know. Judy xxx http://www.cancercompass.com/message-board/message/all,7710,0.htm Judy nz Thu, 09 Nov 2006 00:00:00 GMT Hello everyone, I am new to this board. I have a close relative who has been undergoing treatment for fallopian tube cancer. She's finished with intra-peretonial chemo and two small tumors were found after that, so she is now undergoing radiation therapy. She had a colostomy done during her original surgery back in January, and the plan is to reverse the colostomy after she finishes radiation. So here's the issue: Her oncologist insists the surgery should be completed 4 weeks after she completes radiation, to avoid any scar tissue that may build up. Her surgeon, on the other hand, wants to wait at least 6 months to be sure the cancer is completely gone. Needless to say, this is causing her much anxiety. If anyone has any similar experience, we would appreciate your insights. Thanks, Kathy http://www.cancercompass.com/message-board/message/all,6862,0.htm Portland47 Wed, 13 Sep 2006 00:00:00 GMT 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 http://www.cancercompass.com/message-board/message/all,6665,0.htm Davic Tue, 29 Aug 2006 00:00:00 GMT Hi, I hav been in remission now for 2 years and now I am having these pains in my groin area that feel like pressure but not too sharp. can hardly walk but I know my doctor won't think too much of it. I had a full hysterectomy and chemo 2 years ago. Does anyone know about these symtoms? thank you. http://www.cancercompass.com/message-board/message/all,6606,0.htm Criss Fri, 25 Aug 2006 00:00:00 GMT Our 74 year-old nanny has just been diagnosed via biopsy with fallopian tube cancer. Her children live an hour and a half away so my wife and I have been providing moral assistance and helping her sort through her medical decisions. Unfortunately, we are not cancer novices as my wife is successfully battling brain cancer. I would like to hear any advice that you have for a newly-diagnosed patient. The treatment plan currently calls for surgery (advice on finding the right surgeon would be appreciated) and the reevaluate based on pathology. I am also curious as to markers, chemo drugs, use of radiation, etc. Her mother is 99 and still living independently and she is otherwise healthy. Thank you for your help. http://www.cancercompass.com/message-board/message/all,6545,0.htm Gagbm Mon, 21 Aug 2006 00:00:00 GMT I guess this type of cancer is one of the rarest and hardest to get rid of. My friend was diagnosed with clear cell fallopian cancer in December 2005. I have watched her go through 2 different types of chemo and 2 surgeries to remove the cancer that kept re-appearing. She just had a pet scan the other day and found out that the cancer is back in the same spot (pelvic wall) after 4 months. This time they are going to try radiation after they operate for the 3rd time to remove this from her. She had one of the worst kind of chemos the second time as the first did nothing but make her lose her hair. The second one, which we thought was working, was given and then she remained hospitalized for days because she was so violently ill, only to find that even though she tolerated this treatment, it did nothing to the cancer. I have watched the mental and physical pain she has endured and just wonder if there is anyone out there going through what my friend is. She is only 48 years old. http://www.cancercompass.com/message-board/message/all,6404,0.htm Peeney Fri, 11 Aug 2006 00:00:00 GMT My wife has recently been diagnosed with Fallopian Tube Cancer and is scheduled to begin the first of six chemotherapy treatments with Taxol at the end of the first week of December. We are told the long term prognosis is good but I am am frankily scared about the whole chemotherapy treatment process. Perhaps I am more scared than she is but the whole thing seems surreal and I an worried that I will not be fully prepared to be her caregiver. We are doing what the doctors have told us to do for preparation. I cannot seem to find much information on this cancer. Does anyone know where I can find any information? Kelly http://www.cancercompass.com/message-board/message/all,3611,0.htm Kellyt Tue, 29 Nov 2005 00:00:00 GMT Is there anyone who has Fallopian Tube Cancer? I'd like to share the ideas. Please e-mail me at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html --- http://www.cancercompass.com/message-board/message/all,2988,0.htm Chiko Sun, 18 Sep 2005 00:00:00 GMT I last wrote May 16th, asking if anyone had information about fallopian tube cancer but have not heard anything back yet so I thought I would update my situation. I had a full hysterectomy April 29th for ovarian cancer and was diagnosed two weeks later with fallopian tube cancer instead. I'm now receiving a six-month treatment of adjuvent chemotherapy in the form of carboplatin and taxol, every four weeks, beginning June 17th. The side-effects have been manageable so far. I too lost my hair after the 3rd week of the first treatment and had purchased a wig to have ready. I feel good most of the time, except for low energy for the first five days after chemo, and am meanwhile regaining strength from the surgery (almost 3 mo. ago now) every day. I'm focussing on whole foods nutrition that supports chemo and fights cancer. Any and all hints and info would be appreciated - I'm just feeling my way along through all of this. Someone wrote about a support group - I'm very interested if anyone knows more about how this is coming along. Please count me in! http://www.cancercompass.com/message-board/message/all,2581,0.htm Annec Tue, 26 Jul 2005 00:00:00 GMT I was dx with fallopian Tube Cancer April 29, 2005 after requesting CA125 blood test. I was told I didn't need it as I had a healthy exam. It came back highly elevated. I was sent by my GYN 5 hr north to an Oncologist GYN. On May 11, 2005, I had a radical hysterectomy. Everything that could be removed was, including 2 lymph nodes. For one of the letter I read, the Oncologist GYN said that 40 out of a hundred make it past 5 years. I am on Taxol and Paraplatin. I have 6 treatments, 3 weeks apart. I have had two treatments so far. Two weeks after my first treatment I developed a very painful pins and needles in my hands. It felt like a hundred bee stings. It lasted about 45 min before it calmed down. I was told it was neuropathy. Since then I am experiencing it all over my body continually. At times it will also attack a certain part of my body and be very intense for a period of time, sometimes several hours. I am going in for my 3rd chemo next Thursday, July 21st and am very concerned as this does not sound like neuropathy to me. Since my first attack I seldom have it in my feet and hand other then an occasional pricks. I'm wondering if I am allergic to one of the chemo's. Has any one else experience this? http://www.cancercompass.com/message-board/message/all,2486,0.htm Shirl Fri, 15 Jul 2005 00:00:00 GMT 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 http://www.cancercompass.com/message-board/message/all,2188,0.htm Kaypat123 Thu, 02 Jun 2005 00:00:00 GMT I had symptoms that led to an emergency hysterectomy two weeks ago. Tissue analysis revealed fallopian tube cancer. Any information about this cancer is of utmost importance and would be extremely appreciated. http://www.cancercompass.com/message-board/message/all,2080,0.htm Annec Mon, 16 May 2005 00:00:00 GMT