CancerCompass message board discussion started by Harmless on 2/4/2008 http://www.cancercompass.com/message-board/message/all,20628,0.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/ Hi,I have been reading the board on primary periteal carconoma. I was diagnosed with this cancer in 4/06. I was loaded with fluid and I found no help from all drs. I went to. I had an ultrasound of my gall bladder and they saw all the tumors in there. I had them attached to everything and then they were floating too. I talked to the radiologist who found this and he said the tumors take from your body and blood source and the tumors do not have a skin to hold all this fluid in so it weeps and makes you look like your pregant. I had a lot of fluid removed before my debulking surgery. You need a cancer center who does this type of surgery. Not anyone can do this and do a good job. I had my omentum removed and anything else I could live without. God was taking very good care of me because they did not have to resection my intestines. A month after surgery I was given chemo in a regular port with sysplat and also IP chemo. That is belly chemo. They dump the chemo in and then have you go from side to side every fifteen minutes for 2 hours every time you have chemo. I did this for six sessions. At the end I was not in too good of shape, but I eventually got my strenth back. I started out with a CA 125 of about a 1000 and now it is down to a minus 2. I am doing very well. I started in a stage 3 with a 30% chance of survival. I am now in a 50% chance it will not come back. I am at 1 yr. and 3 mo. When I reach two years my percentages increase. My Dr. told me 2 people in a million get this cancer. They have nothing to treat it with, but because it is so much like ovarian they can treat it that way and hope for the best. Belly chemo is not very good either because there are so many people who can just not do it. I had people all over the world praying for me. I believe, good support, prayers, a positive attitude , and God to help you get through this.           Harmless Harmless Mon, 04 Feb 2008 00:00:00 GMT Hi, I believe God sent you my way today. My mother goes into the office this thursday to discuss her operation. She is stage four, has had stomach pains since last May but just diagnosed about a month ago with cancer. They kept telling her she has ovarian but she has no ovaries.I know under a scope this shows as ovarian.  Then they say its breast cancer cause she has breast cancer cells too. So but there are no masses in her breast. And her pet scan shows cancer in her lymph nodes, liver, clusters in her abdomen. So the only other possible thing they will more than likely treat it as is this. Ive just read so much horrible things about this cancer i cant find it in myself to find a positive attitude but when im around her. The whole operation scares the living crap out of me so does the chemo.. Im so glad you are doing better and have this wonderful attitude. You have given me some hope. Thank you. I will carry this with me.... Trisha twithers Mon, 04 Feb 2008 00:00:00 GMT Hi Trish,I will keep praying for you and your family. It is not just the person who has it but it affects the whole family. I had a hysterectomy 11 years ago and it was done vaginally. They said they took everything out but when this came up they told me it was caused from a little piece of overy left in there. My recomondation would be if there is nothing wrong with them leave them in and deal with them if there is a problem. When they did my debulking surgery they said they would find a piece of ovary in there and tehy did. It was full of cysts and just plain nasty. I guess we as women should be picky about who does what to us. Also my gyny did not do all of peoples checkups and stuff herself. She had assistants and mid wives. You never had the same person ever and when I told them my symptoms they told me to go to the gas Dr. Did not even take a note about it. I am glad I have given you some hope. I do believe there is hope for all of us. A positive attitude in all of this helps to get you a long way. If I can write to anyone else to help them feel better about this kind of situation I would be glad to anwer. Blessings, Harmless Harmless Mon, 04 Feb 2008 00:00:00 GMT Can I ask you personally how did the surgery go. It sounds pretty invasive. I read there about five days in ICU afterwards and put on a feeding tube. Im really scared of what they will find when she goes under. How did they diagnose you? Did it take a long time.. Shes been going through this since May was told back in November from her hometown dr. she had cancer but wasnt sure where. When sent to a very well known MD Anderson In Jan.  they a month later still arent sure. Here we are in Feb. . Very frustrating! I hope we can keep in touch. twithers Mon, 04 Feb 2008 00:00:00 GMT Hi... I am sorry you are going through this, but nice to hear you are doing pretty okay.  I believe this is what my Dad is going to be diagnosed with, it is their educated guess right now and we were told it is very rare.  We are at a top hospital, luckily live near one, Hillman Cancer Center in Pittsburgh.  I am just so hoping we can find some hope as I am truly devastated by this.  We just lost my Mom in October to colon cancer and now just a few months later this with my Dad... my Mom was just 63 and Dad 65... I can't believe this is happening again so soon.  I myself am a childhood leukemia survivor and can't beleive our family has had all this going on!  I will keep you in my prayers... my Dad's biopsy is Tuesday and then we go from there... Msmittens Sun, 17 Feb 2008 00:00:00 GMT  On 2/4/2008 twithers wrote:Can I ask you personally how did the surgery go. It sounds pretty invasive. I read there about five days in ICU afterwards and put on a feeding tube. Im really scared of what they will find when she goes under. How did they diagnose you? Did it take a long time.. Shes been going through this since May was told back in November from her hometown dr. she had cancer but wasnt sure where. When sent to a very well known MD Anderson In Jan.  they a month later still arent sure. Here we are in Feb. . Very frustrating! I hope we can keep in touch.Hi, I pray for the best at your dads biopsy. What are they doing a biopsy on? Im so sorry your family has been hit so many times by this desease. My mom, well they started her on her chemo. She thought she was going in to discuss her surgery but instead did six hours of chemo. She comes back in a week for her second set. They will do one more then maybe the surgery. She has a lymph node to close to her heart that they are trying to shrink and hopefully the spot in her spine. She got pretty sick and in pain, so i can just imagine what this next round will do to her. They are also going ahead and saying this is what she has. Is your dad haveing this debulking surgery? My  mom is also 62, just seems so young still. Well I hope you keep in touch. And you will be in my prayers. God Bless.Hi, twithers Mon, 18 Feb 2008 00:00:00 GMT Hi.  My mother was diagnosed with Peritoneal Cancer in July 2006, at 67.  She had surgery( luckily it was contained in the abdomen) and then 6 rounds of chemo via a belly port and was declared "in remission" in December of 2006.It was very frustrating as it was nearly impossible for me to find any information regarding this cancer, my own doctor had never even heard of it.Initially I got most of my info from a website started by Francine Milano, another ppc patient.  Just recently mom was tested and two hotspots were located, one in the abdomen and a smaller one in the chest area, so it's back.  Much more quickly than any of us had anticipated.  After a CT her physician told her it was small and they wouldn't need to begin chemo right away.  I don't know why they would wait...maybe due to the strain on the body.  I've spent so much time on the computer trying to learn about this cancer but I think I'm tired of medical jargon,it's too depressing, and just want to reach out to real people with real stories. She has told me that she learned from another patient that they rarely perform a second surgery with this cancer.  Anyone out there with recurrence info on that?? I'm scared to death but trying to remain positive and brave for my mom...as that is the way that she has approached it.  I appreciate the stories that are out there..I want to know as much as I can.  My heart goes out to all. momof3boys Sat, 15 Mar 2008 00:00:00 GMT Hello, please let me know how ths bout with the second ones goe. My mom too was diagnosed with this terrible disease about 1 1/2 years agol. We were informed yesterday that despite her chemo treatments the cancer has progressed and she now is at %20 to 540 percent with chemo. I am told that there is not a lot we can do at this point but hope for the best. A miracle if you will.I have looked and talked with others about herbal treatments and alternatives but it all seems very grim. If anyone has any more info on this please let me know.Kssfrmangl   Kssfrmnangl Thu, 20 Mar 2008 00:00:00 GMT  On 3/15/2008 momof3boys wrote:Hi.  My mother was diagnosed with Peritoneal Cancer in July 2006, at 67.  She had surgery( luckily it was contained in the abdomen) and then 6 rounds of chemo via a belly port and was declared "in remission" in December of 2006.It was very frustrating as it was nearly impossible for me to find any information regarding this cancer, my own doctor had never even heard of it.Initially I got most of my info from a website started by Francine Milano, another ppc patient.  Just recently mom was tested and two hotspots were located, one in the abdomen and a smaller one in the chest area, so it's back.  Much more quickly than any of us had anticipated.  After a CT her physician told her it was small and they wouldn't need to begin chemo right away.  I don't know why they would wait...maybe due to the strain on the body.  I've spent so much time on the computer trying to learn about this cancer but I think I'm tired of medical jargon,it's too depressing, and just want to reach out to real people with real stories. She has told me that she learned from another patient that they rarely perform a second surgery with this cancer.  Anyone out there with recurrence info on that?? I'm scared to death but trying to remain positive and brave for my mom...as that is the way that she has approached it.  I appreciate the stories that are out there..I want to know as much as I can.  My heart goes out to all. Sorry after re-reading my response it didn't really answer any of your questions. I apologize. I just get very emotional and angry towards this cancer. It is very rare. I don't know anyone else personally who has PPC. Most people have never even heard about it.So my opinion is go get a second opinion. Where do you live? Don't wait for the tumors to get bigger. Is that what those doctors would tell their own mothers. Lets just sit and wait for the tumors to get bigger and make you more ill. Doesn't that seem silly?? Diet and Nutrition is vital with any kind of cancer. Try and see a nutritionist or go to the library and get out some books on diet and cancer. Start eating totally organic. Sugar is the worst as cancer feeds off sugar and acid. NO acidic foods. Vinigar and grapefruits are out. Just google diet and cancer. Good Luck. I totally understand your situation. It is stressful and you want to do what you can but feel hopeless.Christine    CLisaO Fri, 21 Mar 2008 00:00:00 GMT Hello, My mom has PPC, she had surgery on March 7th. They removed a tumor from her colon and one from her intestines. She is still not fully recovered. They have put off her chemo (supposed to start Friday) for another week or so. She said she is a satge 3 or 4 (relating to ovarian cancer). We are all having a really hard time with this, mainly because we don't know what to expect. She has went and made her own funeral arrangements and she's only had cancer for a couple of months. It worries us that she will give up. I am ecstatic that I found this message board. It's a lil more comforting to know more of what to expect. Does anyone have any advice I can share with my mom. She is only 49. My sister and are worried about my dad too. He doesnt talk about it. How do we handle both of them?    ANNIEBB Wed, 02 Apr 2008 00:00:00 GMT  On 4/2/2008 ANNIEBB wrote:Hello, My mom has PPC, she had surgery on March 7th. They removed a tumor from her colon and one from her intestines. She is still not fully recovered. They have put off her chemo (supposed to start Friday) for another week or so. She said she is a satge 3 or 4 (relating to ovarian cancer). We are all having a really hard time with this, mainly because we don't know what to expect. She has went and made her own funeral arrangements and she's only had cancer for a couple of months. It worries us that she will give up. I am ecstatic that I found this message board. It's a lil more comforting to know more of what to expect. Does anyone have any advice I can share with my mom. She is only 49. My sister and are worried about my dad too. He doesnt talk about it. How do we handle both of them?   I was diagnosed May 06 stage 3c ppc. I had a 7 month remission after chemo. My ca125 started rising oct. to 160. Second look surgery and ptct did not show cancer but had microscopic cells. Started gemzar/carbo for recurrence in Nov.  ca125 now 32. Hoping for another remission. Stay positive, there are a  lot of chemo drugs out there. Try not to worry and enjoy good days together.    Missy53 Fri, 04 Apr 2008 00:00:00 GMT Hi!  I have been on so many different boards for PPC on this site I have a hard time keeping track of them.  So I never knew I had any responses.  Since the initial message I have learned that the "hot spot" in Mom's chest had actually shrunk a bit.  She has been on Tamoxofin since the end of the chemo and they feel that for now that seems to be doing a good job of keeping it in control.  She is VERY happy to hold off on the chemo and is feeling good so I accept that and try not to question whats going on.  She has an excellent medical team that she trusts very much to do the right thing for her.  It's difficult because she is in Arizona and I'm in Texas with a job and 3 children...so I'm not there for appointments etc. so that I can ask my own questions. And Mom just wants to protect me..just like always.  She feels after the last tests that she is looking at a few more years at least.. I hope so but am always waiting for the other shoe to drop. In the meantime I just keep loving her as much as I can and see her as often as possible. On another board there is a survivor of 4+ years....Bravo momof3boys Sat, 12 Apr 2008 00:00:00 GMT To all of you on this stream and any others that are following it, it is remarkable how similar the situations seem to play out.  My mom was diagnosed stage 3 PPC in March 2007.  She had surgery which wasn't able to do much.  She then went through 6 rounds of chemo (Carboplastin/Taxol combo if i recall right).  She responded wonderfully.  Other than losing her hair and mild nausea occassionally, she was great.  She went into remission but in January 2008 they said the cancer was back although she still looked and felt great.  She started a new series of Doxil in February and has had three rounds.  Over the last 2 weeks, she started having gastro discomfort and abdominal distension.  Yesterday her oncologist told her the chemo wasn't working.  It was definitely a huge disappointment for all of us.  He is starting her on a 3rd type of chemo drug in a couple of weeks (Topotecan).  Anyone know anything about it?  It apparently is much stronger so while we are hopeful that will mean it will be more effective, it will also undoubtedly take a bigger toll on her body.  Her spirits have been so strong throughout this but now she is really scared for the first time.  I live far away from her so it's very hard on both of us as i can't be there as much as I'd like. Maxalliemom Thu, 17 Apr 2008 00:00:00 GMT  On 4/17/2008 Maxalliemom wrote:  He is starting her on a 3rd type of chemo drug in a couple of weeks (Topotecan).  Anyone know anything about it?  Hey there...just found this site...PPC was diagnosed in October 2003. I was given a 20% year to live...so I picked the 20%...so far it's working for me. Been through ALL treatments that are available and am now on an experimental. I was on Topotecan...that worked for a few months...it was much more milder than the carboplatin or taxol or Cisplatin or Doxil or Gemzar...in fact I felt much better on the Topotecan. When everything is exhausted they will try them all over again...right now I'm on Avastin and Taxol. This has made my numbers fall the best out of everything...but I think until some more time has passed this will not be offered and the docs will try to use the tried and true....I hope and pray that there is a true remission and she lives a long life...and to those others out there...you are not alone!!!!!  Promise!  sweetchesney Wed, 14 May 2008 00:00:00 GMT Thanks for your message.  I'm so glad to hear that your treatments have been successful for you. I will share this news with my mom.  She had the 1st week of Topotecan and fared it okay but was very tired.  On Friday they had to give her 2 pints of blood as her hemoglobin was so low.  That seems to have helped immensely and she is feeling a bit more energetic, albeit not her normal.  She goes to the doctor on Tuesday and hopefully we will find out her CA 125 level has gone down. Maxalliemom Sun, 18 May 2008 00:00:00 GMT Hi to all.  I haven't been on here for quite a while.  Sometimes I just want to kind of let it go for a bit and pretend that this isn't real...even though I think about it everyday.  Mom has informed me that she will be starting chemo again next week, so I guess the remission is officially over.  Also she will be changing from daily  tamoxifin to this topectican (??) that others seem to be on.  I guess the new chemo will not be anything like the original.  No hair loss and much less fatigue and discomfort.  Her number still appears to be low at 40 but she has the hot spots and one is in the chest area so they are concerned about that getting into the lung.  She is still in great spirits and I feel bad because I feel that she is the one trying to keep me positive and convince me that she's not going anywhere for quite awhile.  She says that we can play this chemo game for along time.  Looking forward to seeing her in 2 weeks for a family reunion and then again in July when she is taking me , my siblings and all the spouses and grandkids to SanDiego to live as beach bums for a week.  I'm sure I will feel better when I see her in person..it's been about a year. momof3boys Sun, 25 May 2008 00:00:00 GMT  On 4/17/2008 Maxalliemom wrote:To all of you on this stream and any others that are following it, it is remarkable how similar the situations seem to play out.  My mom was diagnosed stage 3 PPC in March 2007.  She had surgery which wasn't able to do much.  She then went through 6 rounds of chemo (Carboplastin/Taxol combo if i recall right).  She responded wonderfully.  Other than losing her hair and mild nausea occassionally, she was great.  She went into remission but in January 2008 they said the cancer was back although she still looked and felt great.  She started a new series of Doxil in February and has had three rounds.  Over the last 2 weeks, she started having gastro discomfort and abdominal distension.  Yesterday her oncologist told her the chemo wasn't working.  It was definitely a huge disappointment for all of us.  He is starting her on a 3rd type of chemo drug in a couple of weeks (Topotecan).  Anyone know anything about it?  It apparently is much stronger so while we are hopeful that will mean it will be more effective, it will also undoubtedly take a bigger toll on her body.  Her spirits have been so strong throughout this but now she is really scared for the first time.  I live far away from her so it's very hard on both of us as i can't be there as much as I'd like.haven't been on here in awhile...How is your mom doing on the topotecan???  Mine is about to change from tamoxofin to that.  She is also starting chemo again next week but not sure exactly what that will be. Still feels great. Hope your mom is responding to this new drug...let me know. momof3boys Sun, 25 May 2008 00:00:00 GMT  She starts her 2nd round of the topotecan today.  It's pretty intense.  She goes in every day for the chemo for 4-5 days and then has 2 weeks off and starts it all over again.  She should have 5-6 rounds if all goes well.  This has been MUCH stronger than the other 2 types of chemo she had previously.  It has given her nausea and really wiped her out.  She had to get 2 pints of blood infused and 2 shots of procrit b/c both her white blood cells and hemoglobin levels were down so much.  She was exhausted and really couldn't do much as a result.  The blood transfusion really helped though and gave her energy back.  They are cutting the dose for this 2nd round so as not to hit her so hard.  We don't yet know if it's effective or not so saying lots of prayers.  The fluid in her stomach is still there but doesn't appear to have increased so hopefully that's a good sign.  I pray that your mother will continue to feel good and respond well to this new chemo. Maxalliemom Tue, 27 May 2008 00:00:00 GMT It's wonderful that you will see her soon and then with your big family trip!   I know it's hard to be away- i live across the country from my mom so can definitely relate!  I am going back in July and August to see her and just booked my air tickets.  Taking my husband and two kids and we all can't wait!  Good luck with the topotecan.  Maxalliemom Tue, 27 May 2008 00:00:00 GMT My mom will finish up the 2nd round of her new chemo drug today.  She is on topotecan now (the 3rd type of chemo for her).  She gets it every day for 5 straight days and then 2 weeks off and then starts again.  Will be for 5-6 rounds.  Today is the last day of her 2nd round.  The first round was tough and she definitely was very fatigued aftewards- required 2 pints of blood and shots of procrit to get her hemoglobin and white blood cells up.  She is feeling much better now and much more energetic.  Great news is that they told her yesterday that he CA 125 is down to 485.  It was at 785 the day she started the first round so this is great news and seems to indicate that this drug is working. Maxalliemom Fri, 30 May 2008 00:00:00 GMT