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My Mom Age-80 diagnosed Dec 2015-- Looking for Anyone w/Similar Story

Lesli814
Posts: 5
Joined: Dec 2015

I Have been searching for a similar story to mine- But have not found one yet:

Here is the Breakdown:

She is an ACTIVE lady- Age 80

Diagnosed in Dec/2015 -Stage 4 Primary Peritoneal Cancer 

CA125=9800

Since she had her ovaries removed a long time ago - Dr is doing Chemo ONLY to try to shrink it-

He suggests with her age she will not be able to handle the surgery very well.

She has lots of Allergies - So we are waiting until January to see if Chemo is working - 

Has anyone JUST done Chemo and gotten a few more years by doing that?

Appreciate Any Similar Stories...  Thank you in Advance!

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

 

Dear Leslie,

           When you say active, am I to assume that means that your mom is in excellent health, other than the allergies.  I was almost 73 years of age when I was first diagnosed with Peritoneal Carcinomatosis.  I went to the Emergency room (Nov. 2012) with a strange “knot like” in my abdomen.  They asked, “Why are you here?”  I said, “I think I have a hernia.”  Two hours later the doctor gave me a copy of the CT scan that showed numerous large tumors floating all around in the Peritoneal Fluid of my abdomen.

          Back when I was 36, I had my uterus removed, but not my fallopian tubes or my ovaries.  In hindsight, I should have had everything removed.  Research now indicates that most likely Ovarian cancer begins in the Fallopian tubes.  The CT scan did not show anything in my ovaries, only in the Peritoneal fluid.  When I went to the University of Pittsburgh Medical Center (UPMC) for a Second Opinion, a PET/CT scan was performed.  The tumors showed up in my ovaries as well.  Exploratory surgery revealed that the tumors were too large and too numerous to do Cytoreductive surgery.  Their advice, “Go home, have chemo and then we will take another look.    

             That is what I did.  Chemo of Carboplatin and Taxol for 6 sessions (once every 3 weeks) completely zapped me of strength, and took off all my hair in the first 2 weeks. However, no one minds losing something insignificant to gain something much better.  The results showed that the tumors had been reduced to a size that I was now a candidate for Cytoreductive surgery (CRS).  My surgery took place at UPMC on July 1, of 2013.  The incision went from between my breast to the pelvic area.  It was a massive incision, and a major operation.  My spleen, gallbladder, omentum, ovaries, and fallopian tubes were removed and my intestines were resectioned.  The purpose was to remove all non-essential organs to which the cancer could spread.  Although the surgery went fine, within the first few days after surgery, I developed an infection that resulted in the sutures breaking open.  A wound vac had to be applied, and I was in the hospital for 42 days.  And for the first few days, I despaired of life. 

             Since then I had 3 tumors attach themselves to the Caudate lobe of my Liver.  They were successfully removed with targeted radiation by “Cyberknife” at Norfolk General Hospital.  All along my regular CT scans were showing increased nodularity, but not until I went to the Emergency room two times in two weeks, did I come to a place where I had to make a decision.  The pain was as bad as childbirth.  My oncologist said, “You’re describing symptoms that indicate possible intestinal blockage.  Loretta, we do chemo here.  But you have come to a place where you’ve a decision to make.  You can opt to sign up with Hospice Home Health or opt to do more chemo.  I think that you responded well to the first chemo and it has been two years.  My recommendation would be that you consider another round of chemo, but that is entirely up to you.  I think it would give you many more “months” of a good quality of life.”

           And really, other than those two episodes of intense pain and abdominal swelling, I had been able to continue a normal lifestyle, although my energy level is not what it used to be.  And also, irregularity with my bowels, is something that is an aftermath of having my intestines resectioned, so that is to be expected, I have learned. 

             So, I said, “Well, let’s do this.  Let’s have another PET/CT scan and see what’s going on in the inside.”  The results were two new nodules between my breast and 3 on the right side of my chest.  Since I felt so good, I agreed to have another round of the same chemo formula.  Once again, my hair fell out in two weeks’ time.  That can be expected with Taxol.  The chemo weakened me as I knew it would, but after completion, the scan showed that the tumors had reduced in size, and the “nodularity along the intestinal wall” had decreased, but not been eradicated. 

             Now this is where it gets personal, and your mom will have to make her own decision.  But my diagnosis of Peritoneal Carcinomatosis was terminal from the start.  The Cytoreductive surgery was to eliminate more spread to other organs within the abdomen.  I do believe that this has given me these additional years, but ultimately I am not going to live a long time.  Now knowing what I went through, if I were your mother at age 80, I would opt to skip the surgery and just go for the chemotherapy.  That is itself is a major undertaking.  It often zaps one of most of their strength.  My oncologist did order a CT scan, halfway my treatments to be certain that the chemo was indeed having a good effect.  But keep in mind, chemo is not a magic bullet, and we never know how long it will keep the cancer at bay.  So I think that your mother is doing the wise thing to opt for the chemo.  At 80, knowing the complications that can result, and still the surgery is NOT curative, I believe your mom has made the right decision.  Furthermore, I doubt that she could find a surgeon that would operate on a lady at 80 years of age.  I called one specialist that said, “We don’t normally do this surgery on someone over 60.”  So that was out for that doctor.  The fact that I was in such excellent health at age 72 was what guided the surgeon’s decision. 

           Now just two weeks ago, my CA125 level jumped from 10 to 39.  So you can see that the CA level will vary greatly, and it really doesn't give a complete picture of what is going on in the "inside."  That means that the cancer inside me is very much alive and well and continuing to grow.  Incidentally, the doctors are treating me under the diagnosis of Ovarian Cancer, Stage IV, but we never bothered to find out which was the primary origin because at this point, why bother?  The treatment is the same, and it is all stopgap.  So life is good for me.  I long ago made my peace with God, and although He could heal me, He doesn’t have to.  I have learned more in my sorrow than in the good times.  It builds character and perseverance, and increases your level of sympathy for others who have problems that will not be solved in this lifetime.  I think this poem sums it up well for me.  Psalm 139 is a comforting Psalm for me.  I am convinced that God knows the number of my days and that I will not die one day sooner, or live one day longer, than my allotted time on this earth.  And only He knows how long it is.  So for me, having made peace with God, each day is a blessing.  He has given me some good doctors and I long ago turned it all over to “HIM”.  Leslie, I truly pray that the chemotherapy your mother is presently taking will give her some quality time to enjoy doing the things she loves, and most of all being with you and the other members of your family.  There's never a time when we want to part with our loved ones (under ideal circumstances).  

 

                                            Along the Road

 

by Robert Browning Hamilton

 

 I walked a mile with Pleasure;
She chattered all the way,
But left me none the wiser
For all she had to say.
I walked a mile with Sorrow ;
And ne'er a word said she.
But oh, the things I learned from her
When Sorrow walked with me!

 

Sincerely,

 Loretta (Peritoneal Carcinomatosis/Ovarian Cancer)

 

 

 

 

 

Lesli814
Posts: 5
Joined: Dec 2015

Thank you so much for your story Loretta!  I  plan to print this off and give it to my Mom to read!

I really appreciate the time you took to write this, and I will be pushing positive thoughts your way-

Sincerely,

Lesli

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2661
Joined: Mar 2013

Thank you, Loretta.  As Lesli said, I appreciate you stopping to tell us your story.

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Hello again Lesli:

Just thought I would try to find some more info to describe Primary Peritoneal Cancer.  I’ve scanned the PDF file mentioned in reference 4, and picked out some info that will just familiarize you with terminology.  I didn’t find anything too uplifting or encouraging in these references, but I pass it along as information.  I do like the drawing that shows the different parts in the abdomen that can be affected. (However, it can’t compare to the virtual 3-D body map that I’ve referenced below.)  I didn’t bother to include references to surgery, because I doubt that your mother will want to consider surgery, since at her age of 80, she would most likely have more quality of life going the chemo route, since surgery won’t cure anything either.  Let’s hope that the chemo results that she gets this month will show that the tumors have been greatly reduced, and that there will be a long period of remission before she has to make another big decision as to continuing treatments. 

But before you read the links about Primary Peritoneal Cancer, I just want to pass along this link to you.  It is a “virtual” 3-dimensional body map. 

  1. http://www.healthline.com/human-body-maps

First you choose “male” or “female”.  Then “mouse over the body part that you’re interested in.  Then you can “take a look inside”.  So pick out any part of the anatomy that you wish to know more about.  Then at the top of that particular page, you will find several views of that part of the anatomy.  You choose one, then move your cursor along the bar, and as you do, the body part rotates.  It is amazing that we have doctors that can understand how the different parts work, and in many cases “fix them.”  If these pictures aren’t evidence of “intelligent design”, then I don’t know what is!  Doctors are a gift from God, and I pray that your Mom has some of the best ones.    

Loretta

 

2,  http://www.macmillan.org.uk/Cancerinformation/Cancertypes/Primaryperitoneal/Primaryperitonealcancer.aspx

“Primary peritoneal cancer (PPC)

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

The peritoneum

The peritoneum covers and helps protect all the organs in the abdomen (tummy area) – for example, the stomach, liver and bowel, as well as the womb, ovaries and fallopian tubes. It also produces a lubricating fluid which helps these organs move around smoothly inside the abdomen…http://www.macmillan.org.uk/Images/Cancerinfo/Cancertypes/MACD049_Side-view-of-female-organs_labelled_20151215_large.jpg

 

Side view of the body, showing the peritoneum and abdominal organs

Causes of PPC

The causes of PPC are unknown. Like most cancers, it’s more common in older people. PPC rarely happens in men.

A small number of PPCs are thought to be caused by an inherited faulty gene| linked to ovarian and breast cancer in the family. People who are worried about cancer because of their family history can be referred to specialist clinics where their risk will be carefully assessed…”

 

3.  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.

The abdominal cavity and the entire surface of all the organs in the abdomen are covered in a cellophane-like, glistening, moist sheet of tissue called the peritoneum. It not only protects the abdominal organs, it also supports and prevents them from sticking to each other and allows them to move smoothly within the abdomen. The cells of the peritoneal lining develop from the same type of cell that lines the surface of the ovary and fallopian tube for that matter.

Certain cells in the peritoneum can undergo transformation into cancerous cells, and when this occurs, the result is primary peritoneal cancer. It can occur anywhere in the abdominal cavity and affect the surface of any organ contained within it. It differs from ovarian cancer because the ovaries in PPC are usually only minimally affected with cancer…”

More information can be found in the PDF file noted below:

4.  http://www.foundationforwomenscancer.org/wp-content/uploads/Understanding-Primary-Peritoneal-Cancer-2014.pdf

                                   “FALLOPIAN TUBE CANCER (FTC)
The fallopian tubes are a pair of floppy tube like structures that originate at the top (fundus) of the uterus, where they enter the endometrial cavity, and course away from the uterus, on either side, towards the ovaries where they “flop” over the ovaries with their finger-like (fimbriated) end. Cancers of the fallopian tube are also relatively rare and very closely related to cancers of the ovary and PPC. They share many commonalities and emerging data is even suggesting that many of the previously felt to be ovarian cancers may indeed have been FTC…

Both PTC and FTC are usually diagnosed when a woman sees her doctor complaining of abdominal swelling and bloating. As described above, the symptoms of either cancer are more commonly gastrointestinal than gynecologic in nature. These symptoms are related to the accumulation of fluid, also known as ascites, which commonly occurs with either cancer.

Gastrointestinal symptoms also occur because seedlings of tumor often line the peritoneal surface (the outer lining) of the intestines, a process called carcinomatosis.

The omentum, an apron of fatty tissue that hangs down from the colon and stomach, often contains bulky tumor, described as omental caking. Although omental cakes can be detected on a physical exam, they frequently are subtle and difficult to detect.

When a woman is found to have fluid in the abdomen (ascites), the usual first step toward a diagnosis is a CT scan. This is a special type of X-ray test that allows doctors to assess the entire abdomen and pelvis. Omental caking and ascites, as well as other tumor growths, are commonly seen, and point toward the diagnosis of PPC, FTC or ovarian cancer. Other cancers can cause these findings, thus, further tests are needed and are usually focused around ruling out other more common cancers, such as colon and breast cancer…

There are several blood tests that are frequently performed when either PPC or FTC is suspected. The most common of which is the CA 125 blood test. CA 125 is a chemical that is made by tumor cells and is usually elevated in patients with PPC and FTC. Unfortunately, it can also be elevated in a variety of benign conditions, as well as other cancers, and thus an elevated CA 125 blood test does not mean the patient has cancer. More recently a newer blood test, HE4, can also be used as it is less likely elevated than CA 125 in benign conditions. For more information about CA 125, please review the Foundation’s brochure, “Understanding CA 125 Levels: A Patient’s Guide.”

                                                     SURGICAL STAGING
Surgical staging of cancers is performed in order to fully assess the extent of disease. This allows for decisions to be made regarding additional therapy, which is usually in the form of chemotherapy. Surgical staging generally involves removal of all visible disease, as well as removal of the ovaries, fallopian tubes and uterus. It can also include removal of the omentum, lymph nodes and other organs depending on the surgical findings. It is imperative that this surgery be performed by a gynecologic oncologist. These specialists are most familiar with the treatment of this cancer, thus offering patients the best chance of survival. There is no formal agreed-upon staging system for primary peritoneal cancer.

Because it is so similar to ovarian cancer with respect to treatment, it is staged in a similar fashion. Tumor state is typically assigned using guidelines established for ovarian cancer…

Stage I: The cancer is found in one or both ovaries. Cancer cells also may be found on the surface of the ovaries or in fluid collected from the abdomen.

Stage II: The cancer has spread from one or both ovaries to other tissues in the pelvis, such as the fallopian tubes or uterus. Cancer cells may also be found in fluid collected from the abdomen.

Stage III: The cancer has spread outside the pelvis or nearby lymph nodes. Most commonly the cancer spreads to the omentum (an apron of fatty tissue that hangs down from the colon and stomach), diaphragm, intestine and the outside (surface) of the liver.

Stage IV: The cancer has spread to tissues outside the abdomen and pelvis. Most commonly the cancer has spread to the space around the lungs. If the cancer spreads inside the liver or spleen, it is considered stage IV. The cancer will also be assigned a grade. Grade refers to how abnormal the cells appear under a microscope. Low grade tumors, also called grade 1, have features that resemble normal ovarian cells. In contrast, in high grade tumors (grades 3) the microscopic appearance is greatly altered from normal.

Stages I through IV describe how far the tumor has spread. Nearly all patients diagnosed will have Stage III or higher because warning signs are typically few until the cancer is widespread. Patients with PPC or FTC may have fluid around the lungs, known as a pleural effusion. If an effusion is present, some fluid may be removed in order to look for tumor cells. If tumor cells are found in this fluid, the patient has Stage IV disease…

The most commonly used chemotherapy medicines for PPC are the same as those used for ovarian cancer. These include one of the platinum-based medicines, Cisplatin or Carboplatin, as well as ataxane (Paclitaxel or Taxotere) in combination…

                                              RECURRENT DISEASE
Recurrences are common in patients with PPC or FTC because most patients with either cancer are diagnosed when they already have advanced stages of disease. The majority of patients will initially go into remission, but the disease commonly returns months to years later when the CA 125 levels begins to rise or new masses are found on physical exam or imaging studies. Unfortunately, the prognosis for this cancer is not favorable once it recurs, but a longer remission before recurrence is associated with a better chance for a second, third and even fourth remission.

There are several treatment options for patients who recur, depending on the location of recurrence, time since the initial therapy and the patient’s overall performance status. These options include repeat surgery, re-treatment with the same chemotherapy that was given initially or a different type of agent. They can also consider radiation therapy for selected cases. Each recurrence is different, so their treatment must be individualized based on a variety of factors including those listed above. It is also important to investigate whether there is a clinical trial that is appropriate for the patient.

Unfortunately, once a recurrence is diagnosed, one must re-focus the goals of treatment to help prolong quality of life rather than a cure…”

_________________End of excerpts___________________

 

 

 

 

 

Lesli814
Posts: 5
Joined: Dec 2015

I printed all this info and gave it to my mom to read thru - and she did - It was very helpful!

So This week - We will do a family meeting with the Dr -

I guess since we are 9 weeks in & the Chemo is working - Now we need to consider doing Surgery...  (I guess I misunderstood the Dr originally & thought surgery was off the table because of her age - But I guess he wants to give her options)

She will have a CAT scan on Wed and more blood work back so we have all the info needed to make a decision --

She wants Quality of LIFE - and does not want to go thru a lot of **** for only a few more months...

So the Dr visit is next Friday...   We will know more then!

Hope everyone reading is Loving Life! 

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Hello again Lesli

Thanks for the update on your Mom.  Interesting how high her CA-125 count was 9800 when you first wrote.  Obviously, the count is coming down if she is responding well to chemo.  That’s an accomplishment in its own right, to be able to tolerate the debilitating effects that chemo can bring on.

 When you talk to the doctor, I hope he is one that will be truthful and answer every question you ask.  I prefer a doctor that will be completely honest with me because most articles I read indicate that doctors need more training in telling patients the “whole truth.”  While I know he isn’t a fortune teller, his experience with this type cancer gives him a special insight that we patients don’t have.

You certainly know your Mother, and as you listen to the doctor, it will undoubtedly be difficult for you to contemplate what options are available, and what she should choose. So I’m sure you will want to take a lot of notes.  Even though I don’t know the extent of your own research, I’ve listed some sites that might be helpful in understanding PPC/Ovarian Cancer.

As is stated below, “There is no formal agreed-upon staging system for primary peritoneal cancer.”  So we’re treated with guidelines similar to Ovarian Cancer.  So although my first CT Scan revealed Peritoneal Carcinomatosis, the PET/CT Scan and exploratory surgery also revealed cancer in my ovaries.  So it’s one of those questions, “Which came first, the chicken or the egg?”  That isn’t difficult to answer for me.  The Genesis account says God created the animals, therefore the chicken came first.  Wouldn’t it be nice if all of life’s questions could be answered so simply?  But in this case, treatments are pretty much the same as for Ovarian Cancer, even though the original diagnosis was Primary Peritoneal Cancer. I’ve put your name on my calendar for this Friday so I can remember you and your mom in prayer. 

All the best,

Loretta

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV

Additional info that might be helpful below~

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.

The abdominal cavity and the entire surface of all the organs in the abdomen are covered in a cellophane-like, glistening, moist sheet of tissue called the peritoneum. It not only protects the abdominal organs, it also supports and prevents them from sticking to each other and allows them to move smoothly within the abdomen.

The cells of the peritoneal lining develop from the same type of cell that lines the surface of the ovary and fallopian tube for that matter. Certain cells in the peritoneum can undergo transformation into cancerous cells, and when this occurs, the result is primary peritoneal cancer. It can occur anywhere in the abdominal cavity and affect the surface of any organ contained within it. It differs from ovarian cancer because the ovaries in PPC are usually only minimally affected with cancer…”

2.  http://ovariancancer.about.com/od/testsdiagnosis/a/stage_grade.htm

“Ovarian Cancer Stage & Grade : Two Critical Factors

Bottom of Formovarian cancer metastases - Photo © A.D.A.M.

 Updated November 25, 2014.

Ovarian cancer spreads mainly within the abdominal cavity and not to other parts of the body.  Photo © A.D.A.M.

If you are diagnosed with ovarian cancer, the two most important things you must know about are the stage and grade of your cancer.

Stages

Ovarian cancers are categorized by "stages", depending upon how far they have spread beyond the ovary. This is determined by biopsies that the surgeon takes during initial surgery, as well as “washings” or “cytology” (looks for free floating microscopic cancer cells inside your abdomen).

Biopsies are taken from multiple areas including the lymph nodes (part of your immune system), the omentum (a fatty carpet that is attached to your intestine which acts as a “band-aid” in case of infection in your abdomen), and various areas of peritoneum (similar to skin lining the inside of your abdomen).

If you are diagnosed with ovarian cancer, the two most important things you must know about are the stage and grade of your cancer.  Based on whether or not cancer cells are found in each of these areas, a stage is assigned. The lower the stage number, the better the situation. But, don’t get discouraged. There is significant hope for a cure, or at least years of good quality life in remission, even with higher stage cancers.

Stage I: Ovarian cancer that is confined to one or both ovaries.
Stage II: Ovarian cancer that has spread to pelvic organs (e.g., uterus, fallopian tubes), but has not spread to abdominal organs.
Stage III: Ovarian cancer that has spread to abdominal organs or the lymphatic system (e.g., pelvic or abdominal lymph nodes, on the liver, on the bowel).
Stage IV: Ovarian cancer that has spread outside to distant sites (e.g., lung, inside the liver, brain, lymph nodes in the neck).
Recurrent: Ovarian cancer that has recurred (come back) even though the patient has completed treatment.

There are sub-stages to the above which you can learn more about by visiting FIGO Staging System.

Grades

Biopsies that are taken from the ovary are also “graded” for how abnormal or ugly they look when viewed through a microscope.

Ovarian cancers are given a grade from 1 through 3. Other cancers use different numbering systems, so don't get confused by someone else's advice if they have or had a different cancer type.
Grade 1 represents cells that are more normal looking and therefore usually better behaved.
Grade 3 cells look very abnormal, almost unrecognizable, which usually means the cancer is more aggressive.
Grade 2 is in between…”

  3.  http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/primary-peritoneal/surgical-staging/

“Surgical Staging

Surgical staging of cancers is performed in order to fully assess the extent of disease. This allows for decisions to be made regarding additional therapy, which is usually in the form of chemotherapy. Surgical staging generally involves removal of all visible disease, as well as removal of the ovaries, fallopian tubes and uterus. It can also include removal of the omentum, lymph nodes and other organs depending on the surgical findings. It is imperative that this surgery be performed by a gynecologic oncologist. These specialist are most familiar with the treatment of this cancer, thus offering patients the best chance of survival. There is no formal agreed-upon staging system for primary peritoneal cancer.

Because it is so similar to ovarian cancer with respect to treatment, it is staged in a similar fashion. Tumor state is typically assigned using guidelines established for ovarian cancer. Stages I through IV describe how far the tumor has spread. Nearly all patients diagnosed will have Stage III or higher because warning signs are typically few until the cancer is widespread.

Patients with PPC or FTC may have fluid around the lungs, known as a pleural effusion. If an effusion is present, some fluid may be removed in order to look for tumor cells. If tumor cells are found in this fluid, the patient has Stage IV disease.”

4.  http://www.foundationforwomenscancer.org/types-of-gynecologic-cancers/primary-peritoneal/once-youve-been-treated-then-what/

Once You’ve Been Treated, Then What?

“After initial treatment is completed, patients with either cancer are followed closely with visits every 2 to 4 months for the first 3 years and then every 6 months for another 2 years or so and ultimately yearly. At each visit they have a physical exam, including a pelvic exam, CA125 testing, and, depending on the patient and her situation, imaging tests, such as CT scans, X-rays, MRIs or PET scans, may be performed. Unless patients are diagnosed early these cancers have a tendency to recur with time. Hence, patients often require more than one round of chemotherapy and may also need additional surgical procedures.”

5.  http://news.cancerconnect.com/frequently-asked-questions-about-surgery/

6.  http://news.cancerconnect.com/newly-diagnosed/questions-to-ask/

7.  http://www.cancer.gov/about-cancer/advanced-cancer/questions

__________________End of references_____________________

Lesli814
Posts: 5
Joined: Dec 2015

She is still handling the chemo pretty good ...

Her CA-125 is down to 500

She is considering doing surgery end of April --- She seems to think since she is down to 500 that she has come so far -- And she has -

But I am not sure what to think about the surgery now -  Maybe just do surgery on the big mass and continue to do chemo for all the other little ones?

She will be 81 in April - and is handling the chemo so much better than I anticipated - It's hard to know what to do at this point!

 

Brian From The North
Posts: 3
Joined: Mar 2016

Hi,

We just found out that our mom at the age of 78 is at stage 3C with PPC.  I do not know her CA125 number - we just had our first visit with the Oncologist this past Wed.

The Dr. says that Chemo will be the treatment and could begin as early as next week.

This is all still so new to our family, we have never had to deal with Cancer in our family before.  Thus we are all dealing with a wide range of emotions and taking each day for what it is worth.

I was happy to find this post though and the information  on it.  

I was hoping to see if there has been any immunotherapy trials for PPC?

 

 

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Dear Brian:

Wow, don’t we both wish there were some promising immunotherapy breakthroughs for Primary Peritoneal Cancer or Ovarian Cancer?  I have asked “Dr. Google” if there are any clinical trials relative to your mom’s diagnosis.  Below I have listed the “Clinical Trials.gov” site.  It seems there was one working on a vaccine, but as I scanned the titles, I didn’t see anything that was a breakthrough.  Some great news came out recently relative to President Carter’s cancer.  I’ve listed that article from the Washington Post.  If I’m understanding the wonders of immunotherapy drugs, they “turn back on immune cells” that have been hindered by cancer so that the cancer cells can once again be attacked.  Since I visit my oncologist on a regular basis, I will ask him if he knows of any promising breakthroughs for our particular cancer.  I was first diagnosed with Peritoneal Carcinomatosis.  A second opinion at the University of Pittsburgh Medical Center also found that the cancer was also in my ovaries.  Recently I read an article that said it was possible to have Ovarian Cancer even if one’s ovaries had been previously removed.  Seems the cells can break away from the surface of the ovaries and though latent for a time, can develop into cancerous cells.  Ovarian cancer and Peritoneal Cancer are usually treated with a combination of Carboplatin and Taxol.

But specifically, I want to say that I can’t be of much help relative to immunotherapy breakthroughs.  No doubt, my oncologist would have brought that up in our many discussions.  Needless to say, I’m sorry that we have to meet under these circumstances, but I do have, as do others here, quite a bit of experience with chemotherapy and its side effects.  I would hope that your mom has had extensive testing to ascertain the exact stage of her cancer, and that she has had a SECOND opinion.

It’s rather late tonight, but if you would like for me to share with you things I have found helpful in my two different sessions of chemotherapy, I’ll be glad to elaborate.  Below my name are just places I visited on the web in an effort to help you, but I wasn’t able to find something specific to your question.

All of us who have been diagnosed with cancer certainly relate to your “wide range of emotions.”  Certainly the best way to handle them is truly one day at a time.  If I let my emotions and worries go wild, I can easily find myself attending my own funeral.  Believe me, that’s too big a load for anyone to carry beginning on the very first day.  There have been some rough times along the way, but I’m still surviving and I was first diagnosed in November of 2012.  We can certainly all pray that there could be a miraculous breakthrough for our cancer. The best advice I can give at this point is for mom to “own her cancer” and find out all she can about it.  I happen to be a realist who wants to know all I can—the good—the bad—the ugly.  But then I ask God to give me the inner strength it takes to cope with it one day at a time.  So far so good.   And as for your mom, may she find the very best doctors, and have successful treatments that afford her a wonderful quality of life.  Every day is not a bad day, so we just have to take the good with the bad, and thank God we’re still able to be with those we love.  And for us moms, to still give our children “advice they never asked for!” After all, by the time we reach 78, it’s time somebody listened to us.  We’ve got a lot of wisdom to share.    You seem like the kind of son that will make your mom proud!Innocent

Loretta (age 77)

Peritoneal Carcinomatosis/Ovarian Cancer Stage IV diagnosed 11-2012

1.  https://www.washingtonpost.com/news/to-your-health/wp/2015/08/20/the-breakthrough-melanoma-drug-doctors-have-given-jimmy-carter/

“…Keytruda, manufactured by pharmaceutical giant Merck, and other immunotherapies work by allowing the body to recognize and attack cancer as it would any other harmful invader. The drug is designed to block a cellular pathway known as PD-1, which hinders the immune system's ability to attack melanoma cells.

"We’re just taking away the brakes on the immune system," said Antoni Ribas, a researcher at the University of California at Los Angeles and the lead investigator of a crucial study of Keytruda, who added that the drug tends to have far fewer side effects than traditional chemotherapy.

In the span of only several years, immune therapies have quickly become a the fourth pillar of cancer treatment, alongside surgery, radiation and chemotherapy. They are expensive — Keytruda costs roughly $150,000 per year — but they have shown remarkable results in some patients. Dozens of studies are underway in hopes of expanding the treatments for use in bladder cancer, breast cancer, Hodgkin’s lymphoma, head and neck tumors and other types of the disease…”

 

2.     http://www.sitcancer.org/about-sitc/newsroom/immunotherapy-in-the-news

 

3.  http://www.sitcancer.org/journal - JITC

“The Journal for ImmunoTherapy of Cancer (JITC) is the official journal of the Society for Immunotherapy of Cancer (SITC). This open access, peer-reviewed journal not only serves as the global voice of the Society, but also a targeted outlet for the publication of original research articles, literature reviews, position papers and discussion on all aspects of tumor immunology and cancer immunotherapy—from basic research to clinical application.

Today, more than ever before, the tremendous excitement in the field and the increased momentum brought about by the latest approvals of immunotherapy-based treatments in various cancer types has shown the clear need for the Journal for Immunotherapy of Cancer, an outlet devoted to and created by today's leaders in the field.

Indexing

In addition to being indexed in PubMed, PubMed Central, and the Directory of Open Access journals, the Journal has been accepted for indexing in Thomson Reuters’ Emerging Sources Citation Index (ESCI). The ESCI is part of the robust Web of Science collection, the world’s largest compilation of research data, books, journals, proceedings, publications, and patents…”

 

4.  http://www.sitcancer.org/about-sitc/contact-information

“SITC staff is available to answer questions and help with any problems you encounter. Direct all general questions to info@sitcancer.org or call +1 414-271-2456 to contact the appropriate staff person listed below.  The SITC Executive Office is open Monday through Friday from 8 a.m. – 5 p.m. CT.  Direct all mail correspondence to:  Society for Immunotherapy of Cancer - 555 East Wells Street, Suite 1100 - Milwaukee, WI 53202-3823 USA

 

5.  https://clinicaltrials.gov/ct2/results?term=Stage+III+Primary+Peritoneal+Cancer&Search=Search

233 studies found for:    Stage III Primary Peritoneal Cancer

 

6.  https://clinicaltrials.gov/ct2/show/results/NCT01416038

“Phase 1-2 Study of a Cancer Vaccine to Treat Patients With Advanced Stage Ovarian, Fallopian or Peritoneal Cancer

This study is ongoing, but not recruiting participants.

Sponsor:ImmunoVaccine Technologies, Inc. …Information provided by (Responsible Party): ImmunoVaccine Technologies, Inc. ClinicalTrials.gov Identifier: NCT01416038

First received: August 9, 2011- Last updated: December 14, 2015 - Last verified: December 2015

7.  https://clinicaltrials.gov/ct2/help/for-patient

For Patients and Families

“The ClinicalTrials.gov Web site provides current information about clinical research studies to patients, their families and caregivers, health care professionals, and the public. Each study record includes a summary of the study protocol, including the purpose, recruitment status, and eligibility criteria. Study locations and specific contact information are listed to assist with enrollment. (See How to Read a Study Record to learn more about the information found in a study record.) Information on ClinicalTrials.gov is provided and updated by the sponsor or principal investigator of the clinical study. Clinicaltrials.gov is a free service of the National Institutes of Health (NIH) and is maintained by the National Library of Medicine (NLM)…”

--------------------------------End---------------------------

Brian From The North
Posts: 3
Joined: Mar 2016

Dear Loretta,

Thank you so much for the extensive response to my questions.  Your words and knowledge are sincere and mean a lot to me and our family.  We would be greatful to hear of your experiences and knowledge with chemo.  

I agree with you regarding getting a second opinion.  We dealt with an ER Dr. to get a requisition to have the fluid drained from my mom's abdomen, and he was completely fatalistic and negative.  It was unbelieveable and crushing to hear his words of:"it's terminal, you will not survive and you will only feel more pain"  he offered no solutions.  I even asked him if he had ever seen a miracle and coldly responded with a flat:"no".

My mother however has a strong will and did not let his words impact her.  She dug her heels in and wants to fight this.  Even if the cancer is terminal, we are all determined to give her the best quality of life possible and still hope and pray for the best.

Coming onto here, I have found new inspiration in reading about peoples experiences.  I really appreciate the many posts that you have posted on here and your life and knowledge are truly an inspiration.

My mother and father immigrated from Hong Kong as teen-agers and worked 364 days a year (yes literally 1 day off / year)  for well over 40 years.  I grew up in a restaurant and had a unique upbringing that I would not trade for anything.  Having said that, my mother never got the opportunity to do many things with us outside the restaurant.  Now that she is well into retirement, she has been given a second chance through her grand children to experience life moments outside a restauarant environment.  She has found so much joy in playing with the grand kids, playing in the park, sword fighting, going to someone else's restaurant and eating someone else's food (!) or making the grand kids their favourite foods and saying the looks of joy as they eat.  Even though her energy levels are very low right now she still insists to make a meal for the grand kids once/week because it is those kinds things that bring her joy.  

 

Thanks again Loretta!

 

Brian

Crousseau58
Posts: 2
Joined: Apr 2016

My mom is 83 in good health but does have Parkinson's that is very well managed..She was diagnosed the first of April with Peritoneal cancer from her ovary...She started her Chemo last week and her WBC drop very low so they are now giving her shots to bring it back up..They say this is very common but am wondering if anyone has had this issue the very first round and it was acually 1/3 of a does because they recommended that she start slowly so her body could become accustomed to the Meds before giving her the full does...No chemo this week but should start her back next week...This is a first for our family dealing with cancer and then to be dealing with a rare and very hard cancer to treat!!! Just needing some reassurance and feedback on what we can expect!!! she is very independent and as of now won't accept much help with general things around the house!!! She can be alittle stuborn but I'm praying that will play in her favo!!! Any good feed back is appreciate!!!  She is Stage 3C

Cindy

 

LorettaMarshall's picture
LorettaMarshall
Posts: 682
Joined: Sep 2012

Good morning Cindy –

It is normal for the white blood count to drop during chemotherapy treatments.  If you will bring up the chemocare.com website, and select the name of the drugs your mom is taking, you will find precise information about that particular drug—its side effects—as well as some things to combat the side effects.  In particular, there is a period of time indicated in which the wbc will be at its lowest level when using a particular chemo drug.  For instance, one of my drugs was Carboplatin, the other Taxol.  So see my example below on Carboplatin for instance, as to when the wbc will be at its lowest level.  To combat that my oncologist always brought me back in the next day after a chemo session and had the nurse give me a Neulasta shot.  I had a severe reaction to the other drug Neupogen which is also given to bring the wbc back up quickly.

            So if Mom isn’t getting a follow-up injection of Neulasta (or Neupogen) she should be getting it after each treatment.  Ask the oncologist to schedule it for each chemo treatment.   I never had my wbc drop to such a low level that I had to have a chemo session delayed.   Also be sure mom is getting hydration as well.  Chemo has a way of “draining us all dry!” And fatigue, is an unwelcome partner, but we have to take the good with the bad.

            Note:  Ever since this site “retooled” our pages, many have had difficulty posting.  I’m having great difficulty with this site as far as posting web links goes, and sometimes even normal written content, so I hope you will visit the chemocare.com site and research the particular drugs your mom is taking.  That way, there will be fewer “unpleasant surprises”, although the whole treatment is unpleasant as far as that’s concerned.  But we have to do what we have to do to try to combat the cancer that lurks within.  Hope she responds well in the future.

 Loretta - Peritoneal Carcinomatosis/Ovarian Cancer Stage IV – first diagnosed November 2012, Cytoreductive Surgery (CRS) July 1, 2013

 Information below is provided for your information.  I’m just using it as an example of what “chemocare” has to say about one of my effective drugs “Carboplatin.” 

 http://chemocare.com/chemotherapy/drug-info/carboplatin.aspx

 “ …The following side effects are common (occurring in greater than 30%) for patients taking Carboplatin:

 Low blood counts (including red blood cells, white blood cells and platelets)

 Nadir: Meaning low point, nadir is the point in time between chemotherapy cycles in which you experience low blood counts.

 Onset: None reported
Nadir: 21 days
Recovery: 28 days…”

 http://chemocare.com/chemotherapy/side-effects/low-blood-counts.aspx

 This is a specific page explaining what happens when blood counts are low.

Crousseau58
Posts: 2
Joined: Apr 2016

was wondering if there was a update on Leslie's Mom as her story sounds familiar to ours!!! Thanks

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