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Primary Peritoneal Cancer

Jrsndz
Posts: 1
Joined: Apr 2017

Hello, 

My name is Juanita and I was recently diagnosed with Primary Peritoneal Cancer.  It's been about 9-10 weeks since my diagnosis and I have already had a full hysterectomy. They removed my uterus, ovaries and fallopian tubes which came back clear so no sign of cancer in any of those. They found two tumors and they were as well removed, the cancer did travel to my right lymph node so I am about to start chemotherapy next week to begin a six cycle treatment on paclitaxol and carboplatin.  This disease I was told by my Gyn/Oncologist that was categorized under Ovarian cancer since it acts and is treated the same however, I am having a hard time finding even some ovarian cancer foundations that have any resources or awareness about PPC.  I also have not found a lot of forums that have any recent information on this type of rare cancer.  Anyone out there that can provide with some Advice, support, recent survivor stories?

 

Thanks in advance and God bless! 

Juanita 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2354
Joined: Mar 2013

Jaunita, I am sorry we have had to meet through this board - I am a visitor from the Uterine board, but there is an Ovarian board here as well.  

They sometimes go a little "quiet" but there is a lot of good information here for you as a GOOD resource.  Lots of us (gyn cancer warriors) have had that chemo cocktail and can help you through it.  Please visit the Uterine board too as there have been a lot of good discussions on radiation, chemo, etc...you are not alone and there are a great group of women here to support you.

Soup52's picture
Soup52
Posts: 823
Joined: Jan 2016

I agree with Notime! Check out ovarian and uterine board. I'm from the uterine board, too. I believe Loretta on the ovarian board had peritoneal cancer as well as ovarian. She has much info in her posts. Prayers for you!

MKG
Posts: 3
Joined: Sep 2017

Dear Juan it, 

Am new to this website,

I hope by now you haven finished your treatment and is on the road to recovery.

I am also getting treatment for Primary peritoneal cancer,  am at a stage 3C. 

I have undergone 3 rounds of cabotaxol and had surgery to remove my growths in my abdomen, including one on the upper/outer curve of my stomach, my omentum also had a lot of malignant growths, my appendix and a full hysterectomy was done.

I am continuing with another 3 rounds of cabotaxol which also includes Avastine.

After which my oncologist will continue administering Avastine every 3 weeks for at least about 6 months.

I too am looking for more forums to inform me about my cancer which seems to be quite rare.

God bless 

Malaika 

CarolHerbert34
Posts: 1
Joined: Feb 2018

I have been treated for Primary Peritoneal Cancer for 3 yers. Each time it returns I sign on for more chemo. I have lost my hair 3 times.. I am thankful for every day and would not change my decisions because I would be dead if I did not continue with paclitaxol which hits the tumors right away. It is given once a week every 3 weeks.  I would answer to help anyone who wonders what to do when diagnosed.

I reasently received an error in my chemo by a nurse who gave me my intire paclitaxol treatment in 45 minutes, instead of the 3 hrs, it was supposed to run for.  I have tremendous neuropathy in my feet and hands since the infusion. Is there anyone out there that can advise as to what to do with this mistake? Has this ever happened before? Nothing written in any side affects in the literature.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2354
Joined: Mar 2013

hello, CarolHerbert34.  It is so good to meet you, I am sorry it is this forum.  I think the help the warriors have offered eachother is of so much help.  I am a visitor from the Uterin board and I know how much I appreciated all the advice from experience that was shared with me.  

I think it can be a little quite here sometimes.  I can't imagine where people with primary peritoneal cancer can go and hope they find this sight.  I would encourage you to check back as I am sure others would find your story insprirational and advice useful.

I am sorry to hear about the neuropathy that you now have.  Could it be cumulative vs the one treatment?  Regardless, chemo is hard and people just don't have any idea.  

loristory77
Posts: 6
Joined: Feb 2018

My mother had a full hysterectomy 9 years ago.  She recently had symptoms of bloating, inability to eat, stomach pains and was sent to the ER.  Her abdomen was filled with fluid and it appears from her CT Scan that the abdominal walls have cancer and they have been throwing around the term Peritoneal Carcinoma.  Which is why I am here right now... She is having her tissue biopsy on Monday. Please tell me what to ask, what treatments or tests I should be demanding etc.  I want her treatment to be aggressive.  I am not ready to say good bye to her and the things I have read online have not been positive as far as life expectectancy.  I'm here for hope, and advice! 

 

Northwoodsgirl
Posts: 465
Joined: Oct 2009

I am so sorry to hear that your Mom has cancer. The first thing to do is to take a deep breath. Please remember that no matter what you want your Mother to do in terms of treatment, ultimately it will be her decision and she will need your support. If you go to the NCCN.org website you can read what the evidence based standard of treatments are based on cancer type. Basically until your Mom’s biopsy report comes back from pathology you don’t know the type, stage or grade of cancer. Once that is determined based on any other chronic health conditions your Mom may have could affect treatment options. Typically you will want to understand the standard chemotherapy protocols,  possible surgical interventions (if any), radiation treatments and the timing or plan in terms of what will be done first. Ask about getting a port placed in her chest to make getting chemo and multiple lab draws less painful- that will save your Mom’s veins in her arms. Also ask if your Mom can meet with a dietician to help her understand her nutritional needs. Make sure the oncologist writes prescriptions for anti-nausea medications like sublingual Zofran ( melts under the tongue) , also for Compazine for nausea. Often more than one drug is needed to control nausea. Chemo can be constipating so make sure to stool softener like Ducolax ( make sure it is the stool softener and NOT the

a laxative. Get some AquaPhor ointment for skin and sensitve tissues if getting radiation. The radiologist nurse/doctor will review with you symptoms and side effects of radiation. 

Buy a notebook with pockets so you can keep notes and write down questions. Also your Mom will need to keep a calander of the many appointments. She also should keep a file for her medical bills. Before your Mom gets treatments have her call the member services number in the back of her insurance card to check to see if each of her doctors and hospital and Clinic are in-Network. If she is on Medicare just make sure the providers accept Medicare. If your Mom has surgery ask the oncologist for the name of the radiology group and anesthesiol group to make sure they also are in-Network for your Mom’s specific insurance company. So much to think about but your Mom is blessed to have such a thoughfull daughter as you are.

 If you work find out if your company has Family Medical Leave (FMLA). It offers up to 12 weeks unpaid job protection to you to take care of a family member with serious health condition. You can take leave in hourly increments. So you can take time off from work as needed to take your Momto appointments or go to chemo with her if necessary. You DO NOT need to disclose to your supervisor anything about your Mom’s health. All your supervisor needs to know is that you will be using FMLA leave to care for a seriously ill family member. There is some simple paperwork for you and your Mom’s doctor to fill out. It is managed by a third party company. 

You will feel less anxious once you and your Mom have a treatment plan. 

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2354
Joined: Mar 2013

Northwoodsgirl gave a good wrap up.  I would also suggest that you be careful what you read online.  Your mom is a statistic of one, and none of us know how much time any of us have.

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