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Mother just diagnosed with stage iv peritoneal cancer - Seeking advice

Marys daughter
Posts: 1
Joined: Mar 2013

Hello,

My mother was just diagnosed with stage iv peritoneal cancer. Pathology came back as serous papillary carcinoma of Mullerian origin, but they are considering this primary peritoneal cancer. During her first surgey they were unable to remove the cancer (due to bleeding), they basically closed her back up, said the prognosis was grim and that we'd try chemo. They are now planning the following treatment: three months of chemo (hoping to shrink the cancer), then surgery (hysterectomy, debulking of intestines and removal of part of her colon), followed by three more months of chemo. I have been doing tons of research and would love any personal feedback regarding the following topics:

1. What type of traditional worked is recommended for this specific type of cancer. Please share yr experience and or knowledge.

2. HIPEC

3.Intravenous vitamin c therapy, again personal experience or knowledge appreciated, specifically regarding dosage.

4.  Alternative treatments, (specifically the combo of wheat grass, bovine cartilage and Q-10)

 Thanks very much in advance,

Tara

dorothymarion's picture
dorothymarion
Posts: 28
Joined: Apr 2012

So sorry to hear of your Mum's cancer, but you've come to the right place for some answers to your questions.  Since my own diagnosis of Stage IV Primary Peritoneal Cancer back in February of 2011, and spending a lot of time on the internet researching the disease as well as its treatment options, I finally stumbled on this particular website last year.  I have found these forums to be very informative, with posts from fellow cancer sufferers, and it's encouraging to hear so many positive comments. 

I had surgery to remove my ovaries and my omentum (my uterus was not removed as it showed no signs of cancer) back in August, 2011, following seven rounds of chemotherapy with carboplatin/taxotere.  Most of the surgery was done via the Da Vinci robot system (less invasive with smaller incisions).  However, the omentum was too large to remove robotically (it was where most of my cancer was located), so a regular incision was made in my abdomen to remove it.   I was told post-surgery that I would still need extensive and lengthy chemotherapy treatments, and since my surgery I have had six different types of chemo with very few breaks in between.  Unfortunately, my CA125 levels have continued to rise, but I am currently on Taxol and am finally seeing a drop in those numbers (from a little over 14,000 to just above 6,000).  I still have a long way to go though, and have resigned myself to the fact that this cancer is a chronic disease and that I will probably have to receive chemo on an ongoing basis.  Hey...if it means I can still stay around then I'm not complaining!

I haven't had any of the treatments you mention above, other than the various chemotherapies, but I'm sure that there will be some of our members here who will be able to offer you some additional information.

Be there for your Mum.  (I know I get great comfort from my own daughter, especially on those days where the fight just seems to be so overwhelming).  Sending positive vibes your way and wishing Mum all the best.

Dorothy

PatsieD
Posts: 100
Joined: Jun 2012

Hi Dorothy... just wanted to send you a hug. x

PatsieD
Posts: 100
Joined: Jun 2012

Hi there Tara. It's not the ideal place to meet is it? However, I hope you find some answers here as I have. This disease is a rollercoaster and hard to deal with. When I was first diagnosed, I was told that I had a poor prognosis by my hospital doctor and he then arranged for me to be transferred to the nearest specialist centre. I didn't have surgery as I'd already had a lot of my organs removed prior to being diagnosed so the uterus, fallopian tubes, ovaries, appendix and gallbladder were all gone anyway. When I had a laparoscope done to confirm my diagnosis, it was hard for my surgeons to get in the abdomen to get a bioposy due to adhesions, but they managed to find a small channel. In the end, I was diagnosed with Stage 3c serous papillary primary peritoneall carcinoma. There were marks on the liver and the lungs but these were thought to be benign. I had carboplatin (I asked not to have Taxol and my doctors agreed to keep this drug in reserve) for six sessions. I was in the same position as your mother except the regime was in a different order. I've still got my omentum as it was thought too difficult to operate due to scarring and doing so may be counterproductive. After 3 carboplatin infusions, my doctor said that the marks on my liver had shrunk so it was assumed that these growths too were cancerous. I had a partial response to treatment in that, although the growths had shrunk rather than gone away, they weren't growing very fast. Then, two months after chemo, I was told that the supposed scars on my lungs had grown and were assumed to be cancerous too so, in fact, I had always been Stage 4. However, although cancer had been throughout my abdomen, I was handled in a much more positive way and then, late last year, I met a friend of my aunt's who had treatment for a large cancerous ovarian mass in the 80s. Serous PPC behaves like advanced ovarian cancer and is treated using the same regimes. She was given a poor prognosis, debulked (when a lot of the abdominal organs are removed) and had radiation therapy. She looked very well to me and has lived over 30 years since diagnosis. Her oncologist says that she's the person who has lived the longest with the disease so far as he knows. Now that's a long time isn't it? I know we're all different and I don't know if her cancer is serous or not so I'm not drawing absolute parallels, but her story did give me hope. Since my initial diagnosis and treatment, I've come to terms with living with the disease and cope better although I do have some pretty bleak moments. I have to go now, but will post on HIPEC later. x

PatsieD
Posts: 100
Joined: Jun 2012

The HIPEC regime consists of debulking and then introducing a chemo agent into the abdomen directly where it washes the abdomen in what is like a warm bath. This way, it's thought that the treatment gets straight to the site. It's not an easy treatment though. If you look  up the phrase Sugarbaker method, you'll find more on this. I wasn't offered this treatment at all and, although I did ask my consultant, I was told that this wasn't suitable for me. I wasn't told why this was although I probed and I wasn't at a stage in my illness when I was able to tackle the answers. Not all centres have the expertise and it would be worth asking whether your mother would benefit from this treatment or whether she was simply not offered it because of the lack of local skills and knowledge on the subject. The regime your mother has been put on is standard for the course.I've not heard of the intravenous Vitamin C treatment but I would like to know more about it too so maybe someone else here could answer the other questions you have. Best wishes to you, your mother and your family. x

knmchugh
Posts: 1
Joined: Sep 2013

My mother was diagnosed with Primary Peritoneal Carcinoma (Stage 4) in March of 2012.  She just passed away on July 26, 2013. 

Millie2011
Posts: 28
Joined: May 2011

I am too a daughter that lost my mum to this dreadful cancer but she was diagnosed in a later stage than your mum, according to your questions and we experienced a prolonged time together (two years). I have tried to answer to your questions below:

1. What type of traditional worked is recommended for this specific type of cancer. Please share yr experience and or knowledge.

It depends in which stage she is diagnosed. HIPEC regim below is an option (described as method from other members above) when the cancer has not spread outside the abdomen. Also surgery (debulking) can be an option when not spread outside abdomen. Once spread, there are other options. Most common here on the board is a regim of carbo/taxol, taxotere, avastin or different combonations of theese depending on how it works for each person. How many rounds of these that are given also depends on how the response is which varies from each person. This is measured by monotoring the CA125 indikator in blood tests, scanning and of course the overall well-being of the person.

2. HIPEC

As method, bescribed above by other members of the board..

3.Intravenous vitamin c therapy, again personal experience or knowledge appreciated, specifically regarding dosage.

No experience from this.

4. Alternative treatments, (specifically the combo of wheat grass, bovine cartilage and Q-10)

My mum started an alternative treatment along with the traditional medicine treatments. The thought they complemented each other. We both read a book called "My incredible life" that was about a croatian woman defeating her peritoneal cancer staged IV through changing her eating habits. We both liked the book and tried this with changing into a more easy to digest, less sugar, more of a raw food diet or japanese food kind of according to the findings in the book. She felt much better, dealt with the different regimes of carbo/taxol 8 rounds and hormone therapy much better and we were able to travel a lot during the two years we got. The doctors were amazed that she could do this and we had a wonderful time despite the horror of the cancer.

As I saw it, the making of the food got her out of bed, boosted her immunological defense and gave her a satisfaction to eat. I am very sure this prolonged her life.

According to research, anxiety and sugar are both some sort of triggers that sets off the cancer cells in growing. So what my mum and I did was to lower both of them as much as possible..

As you can see on this board, many women lives with this cancer as "chronic" and are able to both travel and work in between treatments. I hope the best for you and your mum and hope you find your specific way on this journey.

Lots of love,

Sophie, Sweden

Nflinchum
Posts: 73
Joined: Jun 2012

Hi Sophie,

I just read your post to Tara. I to have stage IV primary peritoneal. I was in remission for about 7 months and now it is back. Getting ready to try a different  chemo drug tomorrow. I was trying to research the book you were talking about but unable to find it. I am in the USA. Thanks for the advice about the alternative treatments which I am going to try. Thanks again.

Nadine

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