A website for discussions about any type of cancer, including lung cancer, breast cancer, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others
+ Reply to Thread
Results 1 to 13 of 13

Thread: Primary Peritoneal Cancer

  1. #1
    Newbie New User
    Join Date
    Sep 2012
    Posts
    6

    Primary Peritoneal Cancer

    Hello, this is my first post on the forums ( aside from my newbie thread). I come to you seeking advice and support as I have hit a wall that I don't know how to conquer. My mother was diagnosed with Stage 4 Primary Peritoneal Cancer( PPC) about 2 weeks ago. It has been active for about six months, or so her oncoligist thinks. It has grown to her bladder, colon, rectum, ovaries, and uterus. As PPC is generally treated as Ovarion cancer I thought this would be the right place to post this. My mother is the light in my world. There is nothing that she wouldn't do for me, her love knows no bounds.
    I have become her primary go to girl with her treatments as my father doesn't quite know how to handle these things. So I go to chemo, consult the dotors, and generally freak myself out. I read the articles online. I know that outlook, and I am scared.
    She did her first Chemo 1 day after her official diagnoses. She had a 5 hour round of what I assume is the basics, Carboplatin, and Taxol. they consider her in-operable at this point. The plan is to do chemo until they can do a hysterectmy/exploratory removal surgery.
    Are there any PPC survivors out here? I don't really know what to put in my first post. I hope to hear from survivors. Please give me a ray of hope!

  2. #2
    Hi cjwy, I'm sorry your mother is going through this. Yes, PPC is treated as ovarian cancer. And for what it's worth, I don't think that means she's getting a second-rate treatment. I've read various theories about how ovarian tissue might get planted on the peritoneum during the course of life, or maybe when we're embryos -- doesn't really matter -- the bottom line is, it's a type of ovarian cancer as far as they know today.

    So if you've already seen statistics, please note this one -- 80% of women with ovarian cancer go into remission after six treatments of carboplatin and taxol. I know one woman who was diagnosed with stage 4 PPC almost seven years ago, and she did recur after the first series of treatments, but she's still here. Like your mom she was considered inoperable. So there is hope.

    How did her first treatment go? Are the chemo nurses good about giving her tips on how to avoid side effects? Mine told me to take the anti-nausea meds before getting nauseated, drink at least 2 quarts (liters) of fluid a day, and rinse my mouth three or four times a day with some salt and baking soda in water to prevent mouth sores. All of that worked for me. And watch for constipation! I really didn't have much trouble with constipation, but many people do, and they work out various routines with taking stool softeners, Miralax, etc. just before and for some days after chemo. If you need information on constipation remedies, I think asking the question in the "General Cancer topics" folder will probably bring lots of answers from people who've had experience. It's a problem that seems to be caused by lots of different kinds of chemo.

    Oh, did I forget to mention drinking plenty of fluid? Seriously, it sounds like a small thing, but important. It protects the kidneys, and flushes the chemo out of the body after its done it's job. Anything wet except caffeine and alcohol counts as fluid - soup, juice, popsicles, etc. Helps with constipation, too. Dehydration can create a crisis.

    I don't have PPC. My primary tumor was on one of my ovaries. But when I recurred, I recurred with tiny implants all over my peritoneum, and that's pretty typical of recurring ovarian cancer. The mystery of PPC is that with PPC, it seems to start with that pattern of disseminated growths on the peritoneum instead of progressing to that from a single primary tumor on the ovary.

    It's so good of you to help your mom through this. Please remember to be kind to yourself, as well!
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking. 2010 - laparoscopy showed inoperable recurrence, so started chemo. Frontline chemo - carboplatin and cyclophosphamide, six cycles; Avastin - ten cycles; Weekly Topotecan - 4 cycles. Spring 2012 developed pleural nodules. Topotecan plus Avstin - 1year. April, 2014, had surgery to remove Aspergillus infection from right lung.

  3. #3
    Newbie New User
    Join Date
    Sep 2012
    Posts
    6
    Serious, thanks for your response, I really appreciate it. Her first treatment went well, they gave her a drug (the name is slipping my mind right now) that would deal with her nausea for 5 days right off the bat before he chemo. As far as things look now, no nausea to speak of, no constipation. Might I add that she also had the associated issues of pleural effusion as well as a large amount of fluid in her abdomen(acities). The most discomfort that she feels at this point is the fluid building up in her abdomen and pushing on her stomach. The pressure makes it pretty tough for her to eat, as well as drink a large amount of anything at any given moment. ( Note: at the hospital upon first diagnoses she has 1L of fluid drained from one lobe of her lung as well as 2.5L of fluid drained from her abdomen)

    She has always been a serious water drinker, wine as well. Since she became ill she quit drinking. So alcohol is not really much of an issue. I do worry about popcicles, as the sugar is like food to the cancer. I am working on getting her into a modified diet with quite a few small meals a day, as well as her tracking her water consumption. Thank you for your advice!

  4. #4
    They really expect chemo to dry up ascites and pleural fluids. The ascites and effusions caused by ovarian cancer are a little weird, in a good way -- many women have either or both at diagnosis but find when chemo chases it away it doesn't come back. If it does come back, chemo usually dries it up again. It's very hard for us to learn anything useful about ascites because almost everything I've read is about ascites caused by some other cancer or by cirrhosis, and those don't behave like ovarian cancer. I'm keeping my fingers crossed that she'll get a good response from the chemo and be able to put the fluid issue behind her.

    I had both ascites and a pleural effusion before I was diagnosed. The pleural effusion was treated before they found my ovarian tumors, and it has never come back. My ascites is chronic, which is unusual, but it's moderate and I get it drained as needed. When it kills my appetite I've earned to pack a lot of nutrition in with protein drinks and other liquids.

    Having a lot of ascites is just miserable, and so is a pleural effusion. I sure sympathize.

    Don't worry, she doesn't have to eat popsicles! A lot of people find their taste buds change during chemo, and that may limit what she wants to eat and drink for a while. It will go back to normal later.
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking. 2010 - laparoscopy showed inoperable recurrence, so started chemo. Frontline chemo - carboplatin and cyclophosphamide, six cycles; Avastin - ten cycles; Weekly Topotecan - 4 cycles. Spring 2012 developed pleural nodules. Topotecan plus Avstin - 1year. April, 2014, had surgery to remove Aspergillus infection from right lung.

  5. #5
    Newbie New User
    Join Date
    Sep 2012
    Posts
    1

    There is a hope

    Hi cjwy,
    My wife is 4 years survivor and going strong. She also was diagnosed with 4th stage PPC. She's life scientist by training and, after conducting some research, end up using dendritic vaccine treatment prepared based on her CSC (cancer stem cells , which are responsible for metastatic and drug resistance cancer behavior). You can read on Internet more about it. Right now find companies, which can store for you cancer tissues (or pleural fluids).
    And yes - she had an operation and chemo too.

    Alex

  6. #6
    Newbie New User
    Join Date
    Sep 2012
    Posts
    6
    It has been a few busy weeks since I have been able to update but here is the fantastic news.. Mom has completed her second chemo with almost no real side effects, she is staying strong, her appetite is back, and she is happy and bald. At her second chemo appointment she finally got the numbers for her CA125. Upon diagnoses of her PPC , her CA level was at 2250, after her first round of chemo her CA came down to 580, her Dr. thinks that it might be down to 150 before her next appointment (Tuesday). If that is the case then hopefully we can head into surgery after this next Chemo. Thank you all for your kind words and support. I am sighing a huge sigh of relief. Only a few more steps left until remission!

  7. #7
    cjwu. thank you for the update! It all sounds fantastic. It's so good she's getting such a good response and feeling well!
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking. 2010 - laparoscopy showed inoperable recurrence, so started chemo. Frontline chemo - carboplatin and cyclophosphamide, six cycles; Avastin - ten cycles; Weekly Topotecan - 4 cycles. Spring 2012 developed pleural nodules. Topotecan plus Avstin - 1year. April, 2014, had surgery to remove Aspergillus infection from right lung.

  8. #8
    Newbie New User
    Join Date
    Sep 2012
    Posts
    6
    Round 3 of Chemo was yesterday, CA levels are down to 100, in 3 weeks she is going in for a CT to make sure there are no out of control lymph nodes , and to see if she can head into surgery. The Doc hopes that yesterdays chemo will be the last one until after debulking/hysterc. Yay!

  9. #9
    cj, that's just wonderful. Thanks for sharing the good news!
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking. 2010 - laparoscopy showed inoperable recurrence, so started chemo. Frontline chemo - carboplatin and cyclophosphamide, six cycles; Avastin - ten cycles; Weekly Topotecan - 4 cycles. Spring 2012 developed pleural nodules. Topotecan plus Avstin - 1year. April, 2014, had surgery to remove Aspergillus infection from right lung.

  10. #10
    Newbie New User
    Join Date
    Feb 2013
    Location
    Australia
    Posts
    3
    Hello alexg
    I hope this finds you all well. My mum was diagnosed with PPC (apparently stage IIIC, local metastasis with some ascites and little pleural effusion) last November, and had surgery (total hysterectomy/ovariectomy, peritoneum etc & 80% colon) & started chemo (taxotere & carboplatin) this year. Mum is in Japan and she is going to have the dendritic cell treatment once her chemo is completed (I think). On the day of her surgery my brother and I took her sample to the private company lab...it was such an emotional journey.

    I'm just so thrilled to find someone who has tried it for PPC. Did she have hers post chemo? Mum is told she should try both synthetic dendritic cell therapy & dendritic cell from her cancer. I haven't read up much yet so this doesn't make any sense to me at this stage.

    I live in Australia and dendritic cell therapy doesn't seem to be done much at all here. I asked a breast cancer surgeon I know and he didn't know much about it. After he asked his international colleagues he got back to me and told me mum should give it a go even though he considers it 'experimental'.

    I am assuming you are in the US, please let me know how it's done over there or any references you recommend. Thank you.


    with kind regards
    Hanagoyomi

  11. #11
    Newbie New User
    Join Date
    Feb 2013
    Location
    Australia
    Posts
    3
    Hello cjwy and Serous2c,
    I hope all is well with you and your loved ones.
    I'm so glad to have found your thread. I am much encouraged.
    I put it in my post to alexg but my mum in Japan has PPC. She had some abdominal pain and went to have her pap smear and abnormality was found. After going to a couple of hospitals she was operated in early December 2012. I left my kids with my hubby and went to spend 5 weeks with her in Japan. The surgery was awful, she really had a tough time post-op, but recovered reasonably well. She is in the middle of 2nd cycle of chemo and so far she hasn't had too many serious side-effects from chemo.

    Mum's doctors are determined to shield her from the truth, and they don't give us much information. She knows it's PPC stage IIIC, though. The only reason we found out it's stage IIIC is because she went into a hospital for her first chemo (they give it in-patient for the first cycle) on a weekend and the locum who admitted her didn't know he wasn't meant to tell her. I'm not pleased with the way they deal with the information, but I suppose they have their reasons.

    She is trying out cancer-beating-diet, low salt, avoiding carbs/refined or processed food items where practical, drinking fresh fruit/veg juice where possible etc. As she doesn't have much colon left (=can't have too much fibre),and she is on warfarin (=need to avoid vitamin K), plus she has too much stomach acid (= need to avoid acidic fruits) it's hard for her to have good dose of fresh juice. Has anyone found the fresh juice 'therapy' helpful?

    She is also in discussion with a private lab to get her dendritic cell therapy done. I'm not sure if it will help, but she will try it anyhow. Also in some anti-cancer books in Japan we found that keeping warm is helpful to beating cancer cells (?!) so she is trying to keep warm...though it's hard in winter, she has always had cold feet/hands.

    All the very best to you and your loved ones. Please let me know how you are going.

    with kind regards
    H

  12. #12
    I don't know much about the dendritic cell research but what I have read sounds quite exciting. I think it's good that she has the opportunity to receive it. If it gives your mom pleasure to change her diet, that can help her feel she's helping herself, but please remember the cancer wants to starve us. She needs food, and for many of us our choices become very limited because of the digestive problems. This is a very dangerous time to be too thin. I was eating very "healthy" things before my diagnosis, but because of the disease I became malnourished and was dangerously thin at diagnosis. I try to make sure I get enough calories and protein; I really don't have the room or the appetite for more than that.
    Diagnosed with stage 2c papillary serous cystadenoma borderline malignancy of the ovary in 2009. Hysterectomy, omenectomy, appendectomy, debulking. 2010 - laparoscopy showed inoperable recurrence, so started chemo. Frontline chemo - carboplatin and cyclophosphamide, six cycles; Avastin - ten cycles; Weekly Topotecan - 4 cycles. Spring 2012 developed pleural nodules. Topotecan plus Avstin - 1year. April, 2014, had surgery to remove Aspergillus infection from right lung.

  13. #13
    Newbie New User
    Join Date
    Feb 2013
    Location
    Australia
    Posts
    3

    Thank you

    Hello Serous2C, thank you. I've been worried about her being so light/frail at the same time as wanting her to eat what she feels helpful - I'll take on your advice and try to get her to eat 'well'. I think psychologically she finds it hard to eat high calorie foods (believing they are detrimental to her fight against cancer) but hopefully she will see sense in eating some carb! Much appreciated.

    H

 
+ Reply to Thread

Similar Threads

  1. Peritoneal carcinomatosis from ovarian cancer
    By gdpawel in forum Ovarian Cancer Forum
    Replies: 2
    Last Post: 02-28-2012, 01:01 AM
  2. Replies: 2
    Last Post: 03-12-2011, 05:57 PM
  3. Replies: 0
    Last Post: 03-11-2011, 07:52 PM
  4. Primary Peritoneal Cancer combined with psych history
    By bubbles in forum Coping and Support
    Replies: 2
    Last Post: 01-27-2011, 07:31 PM
  5. help needed-Metastic breast w/peritoneal cancer
    By tdc2010 in forum Breast Cancer Forum
    Replies: 0
    Last Post: 03-29-2010, 02:47 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts