Mother just diagnosed with stage iv peritoneal cancer - Seeking advice

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

dorothymarion said:

Hello Tara

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

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

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

Millie2011 said:

Alternatives in treatment

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

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

Hello Swenzke:

As I identify with your mother, I have given you my best advice.  Mom needs treatment now, but I have answered in more depth via a separate topic line because the links I have provided should be so beneficial for all who post under this topic, Peritoneal Cancer.  Even the male population is not exempt from this cancer.  I met a young man while I was at the University of Pittsburgh Medical Center recuperating from my Cytoreductive cancer.  He was 23 and had a lovely wife and 2 young children.  He had his appendix to burst, which subsequently set up a bacterial infection in his body that resulted in Peritoneal Carcinomatosis.  I wish your mother well, and hope that your mom's treatments will result in a long period of "progression free survival" with a good quality of life.

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

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See this link here:  http://csn.cancer.org/node/305907

Dear bsannapa,

Your father is certainly suffering.  I'm unable to give you my usual set of references at this moment.  I've just read your letter.  I was first diagnosed with Peritoneal Carcinomatosis, then a SECOND opinion and exploratory surgery found cancer in both my ovaries as well.  That was in November of 2012.  No my particular cancer is not curable, however with chemo treatments of Carboplatin and Taxol, as well as cytoreductive surgery, I am still alive 4 and 1/2 years later.  It appears that the doctors have given up on your father.  If I were you, I would find another set of doctors and have a second opinion.  I don't know where you live, but I would not have the same medical facility examine your dad.  I would take him to a different place.  Pardon me, but from what I read, they are doing nothing for your dad--eating nothing and constantly being given pain killers would not be what I would want for myself, nor any of my loved ones.  

Cancer is painful, but often there are treatments that can make the patient able to live with a better quality of life.  It doesn't sound like this group is making much effort to try to do anything.  Pardon me, that's just the impression I get from reading your pitiful letter.

I suggest you talk this over with your father.  Ask him what he wants to do.  He should be the ones making the final decisions even though the doctors seem to have taken matters into their own hands, and written him off.  I'm so sorry to know that he is suffering so.  And chemo can cause suffering too, but afterwards the cancers can be reduced and the patient feels like they can live again.  Why haven't the doctors done enough to test your dad to at least accurately determine the stage?

As I said, I will not be able to answer in a more detailed matter today, but if you read down through some of these letters that has my name attached, under Peritoneal Cancer, you may find helpful links to give you some direction.  Again, I hope you can find another set of doctors as soon as possible.

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer, Stage IV, diagnosed November of 2012.  Cytoreductive Surgery at University of Pittsburgh Medical Center (UPMC) July 1, 2013.

Dear Adenice~

As yet it seems as though no one reading your letter knows anything about support groups in your area.  However, needless to say we're not just going to say "Hope you find help and just say, “Have a nice day.”  I sometimes cringe when I hear those words and wonder if the words would be different if “well wishers” knew they were talking to a cancer patient.

 Actually, here in the South, it’s not unusual to greet someone for the first time, smile and say, “Hi how are you?”  Now most often, they only expect to hear a “Fine-thank-you” response.  But I’ve chosen to answer a bit differently much of the time.  I reply, “Well, for a Stage IV Ovarian Cancer patient, I’m actually doing quite well!”  I sometimes say, “Terminal” cancer patient.  Many don’t know what to say, others are interested to know more, and usually have someone dear to them that has had cancer of some type.  At other times, I respond by saying, “Do you really want to know?”  Sometimes that has resulted in 15 to 20 minute conversations that were usually helpful to the person with whom I’m talking and it makes me feel better if I can help to  “lighten someone else’s load.”  If we can use our own cancer diagnosis to help others, then I believe we should.  After all, we’re only human, and many are hurting in some way, even if we’re not telling “the world” about it.

I’ve said all that to say this, I hope you have already asked the MDAnderson branch there in Atlanta about support groups.  There may be others that write here that can help more with that than I.  However, I find not many write on this particular forum as Peritoneal Cancer is not as common as other types of cancers that we women have.  Have you been assigned a “Patient Navigator”?  This is supposed to be their job—making you totally acquainted with treatments and support.

Sad to say the one assigned to me left me her name after one meeting, and then I suppose I was supposed to “call her”.  In fact, I think it is their duty to have a roster of their patients, and check on them on a routine basis.  But then I’m 78 now and that’s what would have been done “way back when.” 

We still have some very dedicated medical personnel today, but I’ve met some that are also not very personable nor qualified.   I’ve only got good things to say about my present medical team…except for my “patient navigator”.  Actually, I’ve forgotten her name.  And I’ve found that in this world of cancer, you will become your own navigator, sometimes agitator, counselor, advocate and researcher. 

I don’t have any magic solutions or cures for my cancer, but I do have peace in my soul. At some point, in my case, I will say of continued “treatments”, “Enough is enough.”  But so far, I’m nearing the 5-year mark for surviving my terminal diagnosis.  Now that’s not to say it has been smooth sailing.  There's been some rough waters, but so far the treatments have afforded me a period of “progression free survival” (PFS) which has given me a good quality of life, even with residual side effects from chemo regimens.  And so, for you, I wish that you will be offered every type of treatment known to be beneficial, and that you will have all the best of doctors that make you feel that you are their “#1 patient”.    I’m still around almost 5 years later.  I do believe that having “Cytoreductive Surgery” has contributed to my longevity.  May you find some comfort in knowing that some of us are still here. 

God bless you as you travel this road.

Loretta

DX Peritoneal Carcinomatosis/Ovarian Cancer Stage IV - Nov. 2012

P.S.  Some references are listed below that you might wish to review if you aren’t already acquainted with them.  Here is a website from MDAnderson in Texas that seems to deal specifically with support groups for their cancer patients and their families.  One would think that if you contact them, they can certainly put you in touch with the Atlanta, GA affiliate.  So this might be a good starting point.  It's always helpful to talk with others who have similar diagnoses, and have already traveled the road that you are now on.

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  https://www.mdanderson.org/patients-family/diagnosis-treatment/patient-support/mycancerconnection.html
  
  

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1.  http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/primary-peritoneal/

“Primary Peritoneal Cancer

Cancer occurs when cells in an area of the body grow in an abnormal way. Primary peritoneal cancer (PPC) is a relatively rare cancer that develops most commonly in women. PPC is a close relative of epithelial ovarian cancer, which is the most common type of malignancy that affects the ovaries. The cause of primary peritoneal cancer is unknown.

It is important for women to know that it is possible to have primary peritoneal cancer even if their ovaries have been removed.

[My note:  This article is quite extensive and needs to be studied in depth.  It gives me more insight into how I might have come to be diagnosed with Peritoneal Carcinomatosis without the symptoms listed below, except for discovering a miniscule knot right below my waistline on the left hand side.  I immediately diagnosed it myself…not a good idea…as a hernia.  A CT at the emergency room had a different diagnosis…Stage IV right out of the gate!]

2.  http://emedicine.medscape.com/article/281107-overview

“Peritoneal Cancer - Updated: Dec 10, 2016 

• Author: Wissam Bleibel, MD; Chief Editor: N Joseph Espat, MD, MS, FACS  more...

Practice Essentials

Peritoneal neoplasia can originate de novo from the peritoneal tissues (primary) or invade or metastasize into the peritoneum from adjacent or remote organs (secondary).

 Primary peritoneal cancers, some of which have been implicated in many cases of carcinomas of unknown primary origin, include ovarian cancer arising in women several years after bilateral oophorectomy.

 Other described primary peritoneal cancers and tumors include malignant mesothelioma, benign papillary mesothelioma, desmoplastic small round cell tumors, peritoneal angiosarcoma, leiomyomatosis peritonealis disseminata (LPD), and peritoneal hemangiomatosis…”

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 [My note:  I always find this site from the UK to be “user friendly” when explaining different cancers.  It is a good site.]

 3.  http://www.cancerresearchuk.org/about-cancer/ovarian-cancer/types/primary-peritoneal

 “Primary peritoneal cancer

Primary peritoneal cancer (PPC) is a rare cancer of the peritoneum. It is very similar to the most common type of ovarian cancer called epithelial cancer. 

The peritoneum is a layer of thin tissue that lines the inside of the tummy (abdomen) and covers all of the organs within it, such as the bowel and the liver.

The peritoneum protects the organs and acts as a barrier to infection. It has 2 layers. One layer lines the abdominal wall and is called the parietal layer. The other layer covers the organs and is called the visceral layer.

There is a small amount of fluid between the two layers, which separates them and allows them to slide over each other. This fluid allows us to move around without causing any friction on the layers.

Primary peritoneal cancer (PPC) is a rare cancer of the peritoneum. It is very similar to the most common type of ovarian cancer called epithelial cancer. This is because the lining of the abdomen and the surface of the ovary come from the same tissue when we develop from embryos in the womb.

PPC is a cancer that mainly affects women. There are no exact numbers for how many people get it in the UK. Research suggests that between 7 and 15 out of 100 women (7% to 15%) who have advanced ovarian cancer will actually have PPC. It is very rare in men. Most people are over the age of 60 when they are diagnosed.

4.  http://www.macmillan.org.uk/information-and-support/primary-peritoneal-cancer

Primary PeritonealCancer (PPC)  is a rare cancer that starts in the layer of tissue called the peritoneum. The peritoneum lines the inside of the abdomen.

The cause of PPC is unknown. PPC is more common in older people, and in women.

Symptoms might not be obvious at first, but can include:

• losing your appetite…………indigestion…………..feeling sick……weight gain........swelling or pain in the abdomen………………breathlessness.

After seeing your GP, you may be referred to a specialist doctor (usually a gynaecologist). They will examine you to check for lumps or swellings. You may also have other tests such as a chest x-ray, blood tests, an ultrasound, CT or MRI scan or laparoscopy.

In PPC the cancer is either stage 3 or 4, depending on its size, position or where it has spread.

The main treatments for PPC are usually surgery, to remove as much of the cancer as possible, and chemotherapy. The aim is to control the cancer for as long as possible. Sometimes people have radiotherapy treatment.

Reviewed: 30 Nov 2016 Next review: 2019

• How we write our information and the sources we use

1. What is primary peritoneal cancer (PPC)?
2. The peritoneum
3. Causes of PPC
4. Symptoms
5. How PPC is diagnosed
6. Staging PPC
7. Treating PPC
8. Clinical trials
9. Follow-up for PPC

5.  http://www.hipec.com/peritoneal-cancer/

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6.  http://www.hipec.com/hipec/

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