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Month: September 2013

Fluid Buildup in Patients with Peritoneal Mesothelioma

Wake Forest Study Shows Treatment to Reduce Fluid Buildup in Patients with Peritoneal Mesothelioma

A new study from cancer researchers at North Carolina’s Wake Forest University reports that undergoing cytoreductive surgery (CRS) and hyperthermic intraperitoneal chemotherapy (HIPEC) can improve the lives of those suffering from peritoneal mesothelioma by controlling the buildup of fluid in the abdomen.

CRS/HIPEC Offers A More Permanent Solution To Fluid Build Up

The accumulation of fluid in the peritoneal cavity (the space between the lining of the abdomen and abdominal organs) can cause those with mesothelioma a great deal of discomfort. However, according to a recent article in the Annals of Surgical Oncology, undergoing CRS/HIPEC can offer a more permanent solution to fluid build up.

Left untreated, the building up of fluid can cause not only discomfort, but also bloating, disfiguration and shortness of breath as it interferes with diaphragm movement. Although peritoneal mesothelioma sufferers can have fluid drained, it generally accumulates again in time. So, how can treatment help?

Cancer researchers at Wake Forest University studied 299 patients, 15% of whom had peritoneal mesothelioma and the rest of whom had various types of primary cancers that had spread to the peritoneum.

All patients underwent cytoreductive surgery (CRS) to remove as much of the cancer as possible, followed by hyperthermic intraperitoneal chemotherapy (HIPEC). The procedure involves bathing the abdominal cavity in heated chemotherapy drugs to destroy residual cancer cells. According to the study, 93% of participants had a complete resolution of their ascites after a three-month period. This included some cases in which the cancer itself could not be completely removed.

Authors of the study, published in the Annals of Surgical Oncology, wrote that, “Although complete cytoreduction (the removal of cancerous cells) remains the goal of this procedure, HIPEC can provide palliative value in selected patients with malignant ascites.” This can improve the quality of life for mesothelioma patients, even in cases where it may not necessarily be able to improve survival rates.

Exposure To Asbestos Primary Cause Of Peritoneal Mesothelioma Peritoneal

mesothelioma accounts for 10 to 20 percent of the nearly 3,000 cases of mesothelioma diagnosed in the United States every year. The primary cause of peritoneal mesothelioma tumor is exposure to asbestos. Symptoms may include:

  • abdominal pain
  • anemia
  • blood clotting abnormalities
  • bowel obstruction
  • swelling due to a buildup of fluid in the abdomen (ascites)
  • weight loss.

If you’ve been exposed to asbestos, it’s important to see your healthcare professional immediately to determine whether you may have developed mesothelioma. Many mesothelioma victims were exposed to asbestos fibers and dust particles decades ago and far too many aren’t diagnosed until the cancer is in its later stages.

While life expectancy rates for untreated peritoneal mesothelioma are grim, early detection and effective treatment, such as CRS/HIPEC are available to combat symptoms and may improve prognosis.

Words of Faith and Hope for Mesothelioma Families by Jennifer Gelsick

When asked to write a message for mesothelioma patients and their families, it proved to be rather difficult for me.  I racked my brain and prayed for the right words to say.  I don’t want to patronize anyone with seemingly meaningless platitudes like, “I know how you feel” or “I’ve been there.”  Even though I have been there, I don’t know exactly how you feel, as everyone deals with each situation in a different and unique way. The best thing I can say is that there is hope.

Going through my Dad’s diagnosis of pleural mesothelioma in January of 2012, I ran the gamut of emotions: fear, sadness, confusion, and anger.  These turned to thankfulness, faith, and peace after a while. Throughout everything, I found hope.

Hope, for me, came in many different forms.  Hope came from Jeff Rzepka who told us about a doctor in NYC who could help Dad. Hope came from this amazing doctor, Dr. Harvey Pass, who performed Dad’s surgery. Hope came from his scans saying he was cancer free. Hope came when the scan wasn’t perfect, but Dad could have radiation.  Hope comes with every new day.

Jeremiah 29:11 says: “For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.”  This hope and the future God promises, continue to get me through my toughest times, the moments of darkness when I feel as though nothing is going right.  Remember, God has a plan, and everything happens according to His plan and His will.

Please know that there is no problem too small or too large for God to handle.  Prayer and faith can move mountains and my family has seen that first hand.  Don’t give up hope.  God’s plan is perfect.

Ring of Theory

“Ring of Theory”

When a friend or family member is diagnosed with mesothelioma, knowing what to say to them is critical. Jennifer Gelsick, whose father is fighting the disease, offered some suggestions about saying the right thing like ensuring what you say “comes from the heart.” Now, a clinical psychologist offers the “Ring of Theory” as a guideline when communicating to mesothelioma patients and others who are facing a debilitating disease or other serious medical condition.

In an April Op-Ed in the Los Angeles Times, Susan Silk proposes using a series of concentric circles as a “simple technique” to help people avoid the mistake of saying the wrong thing. The theory being that the patient has the right to say anything he or she would like. As Silk explains, the patient “can kvetch and complain and whine and moan and curse the heavens.” But, anyone else talking to the patient or close family member needs to consider “if what you are about to say is likely to provide comfort and support.”

Mesothelioma is a scary disease, and dealing with the treatments, such as chemotherapy and radiation, are challenging. During this time, patients and caregivers are under a lot of stress and the more help you can provide the better. Sometimes listening is better than saying the wrong thing.

To build the ring, write the patient’s name in the center of a piece of paper and draw a circle around it. Next, write the name of the person closest to the patient outside that circle, such as the spouse or child, and draw another circle. Continue adding names and circles until you have a “kvetching order,” as Silk calls it, with those closest to the patient in the smaller, inner rings, and friends and colleagues in the larger, outer rings.

Saying things like, “I don’t know if I can handle this,” to the spouse of someone who may have a terminal diagnosis, is not helpful, and is inappropriate, according to Silk. The spouse needs someone to offer comfort, and does not want to offer comfort to someone else. Although you may be upset, discuss your feelings with someone in the outer circles and farther removed from the trauma.

“Remember, you can say whatever you want if you just wait until you’re talking to someone in a larger ring than yours,” said Silk.

Dealing with Mesothelioma

Dealing with Mesothelioma and The Reality of this Disease

The sad thing about having any illness, be it cancer or arthritis, is that no one tells you how it will really affect you. Having mesothelioma is no different. There are thousands of websites out there telling you how you will be diagnosed, the outcome of the cancer and the treatments available, but no one tells you the ins and outs of what to really expect.

I have tried over the years to convey how I am feeling through my blog – “Mesothelioma – Jan’s Journey.” I didn’t write my blog when I was originally diagnosed or when I was on chemotherapy for the first two cycles. In a way I am pleased I didn’t because I went through a living hell, but that was me, not everyone is the same. Unfortunately, a lot of sites don’t truly represent that you may go through this or that.

I know there are several discussion groups on line these days, boy do I wish they had been there in my early days. The internet has helped many get answers, but still the sites we hope will give us the information we desperately seek, sometimes don’t.

Mesothelioma is a strange cancer, it is the second most painful to endure, the first being bone cancer. Over the years I have surfed the net to see if anyone was having the same symptoms as I was going through, but many times I was left with no answers.

I am glad to share my story on MesotheliomaHelp because this site is unique by offering the perspectives of a caregiver (Jennifer Gelsick), a nurse (Lisa Hyde-Barrett) and a patient. I know that all the information presented is thoroughly researched, and they turn to me sometimes to get “real information.” I hope that by sharing my information here, I can help others find the reality of what happens to people with mesothelioma.

I was quite happy believing that mesothelioma was what they classed as a local cancer, that means it didn’t travel to other areas but stayed in the area it was found. In my case, it is in my left lung. Now we know that mesothelioma can travel, in some cases it has even traveled to the brain. But this isn’t what this article is about, it’s about the lack of knowing what to expect.

Many of us mesothelioma patients have had fluid at one time or another, either in our lung or abdomen, depending on which site the cancer has flourished. In those articles we read it doesn’t say that the fluid can make you feel unwell. Usually you can’t describe how you feel other than you are clammy, sweaty, maybe your temperature is up and you feel like you are getting a chill. If this happens, you should go to your doctor immediately.

If you have flown recently and feel this way it could be fluid, a pneumothorax or a DVT.  Where does it tell you this? Nowhere, but now you know.

Recently, I noticed my stomach was increasing in size, when I returned from holidays not only could I not zip up my jeans, but they didn’t even come close to fitting me. My stomach had ballooned. I had mentioned the growth of my stomach to my doctor prior to my holiday, and I was told that the excessive weight I had on my stomach was probably middle age spread, even though I am relatively slender.

One morning, a couple days after I returned home, I felt as I described above, clammy, etc., and I went to my doctor who sent me for an X-ray. The doctor there had me admitted to another hospital. At first they were only interested in my lung, my good lung now had fluid. I just happened to mention my stomach. On examination they found it was full of fluid, it had probably been accumulating for months and whether the flight had exasperated this or not I will never know. Although it felt like a struggle to get results, finally I had nearly 4 litres of fluid drained from my abdomen, and it is just now slowly returning to a more normal size.

Trying to research whether this was normal for someone with pleural mesothelioma was a dead end. Once again, now you know because of my experiences. I don’t know if it is normal, perhaps nothing that happens with mesothelioma is normal, but it can and does happen.

People writing about their own experiences can help those who aren’t sure if what they are going through is part of the disease. Does this happen? Should I feel this way? These questions are only answered on discussions or by those willing to share what they have gone through.

With mesothelioma it is hard to say this could or couldn’t happen. My illness has given me totally different symptoms to many that I know, while theirs has acted differently to mine. Do most people want to know what they may have to face while dealing with this deadly killer?

By going to the personal blogs out there like Lou’s, Mavis, Tess, and Linda’s [other mesothelioma warriors who blog about their experiences] to name but a few, we know people are looking for more information. Information on how to survive and whether what they feel is what becomes normal.  On my own blog, many search keywords come up like How Do you die from mesothelioma? Can you feel it growing?

I think it is important for mesothelioma patients and their families to know the medical facts of the disease, but it is almost more important to understand the reality of the disease. Perhaps by sharing the “raw” details of what I have gone through for so many years I can allay some of the fears of others, and give them a place to go for what they are up against.

asbestos cancer mesothelioma

Considering the Workers Facing the Risk of Mesothelioma On Labor Day

Mesothelioma is one of many cancers that is still considered to be incurable, and the tragedy is that mesothelioma is an entirely preventable disease. Associated with exposure to asbestos, mesothelioma is a cancer of the lining of the lungs, chest or abdomen that is highly aggressive and is resistant to many cancer treatments. Even small amounts of asbestos and infrequent exposure can create a risk for contracting mesothelioma or other asbestos-related diseases.

Most at-risk for developing mesothelioma are trade workers such as insulators, plumbers and pipefitters, electricians, sheet metal workers, auto mechanics, refinery and factory workers, construction workers and shipyard workers linked to asbestos exposure in workplaces.

According to the U.S. Centers for Disease Control and Prevention, an estimated 1.3 million construction and general industry workers in the United States potentially are being exposed to asbestos.

The World Health Organization estimates that asbestos causes approximately half of all deaths from occupational cancer, and 125 million people worldwide are exposed to asbestos in the workplace due to lack of knowledge about the risks.

Today, as Americans celebrate the Labor Day holiday, a federal holiday designated as a day to celebrate the economic and social contributions of workers, remember that many workers continue to endure unnecessary health risks from asbestos exposure.

Most often mesothelioma patients had been exposed to asbestos over a period of years. Mesothelioma has an extended latency period and strikes 15 to 60 years after exposure to asbestos. Each year 2,500 to 4,000 patients in the U.S. are diagnosed with mesothelioma and asbestos-related diseasesaw.

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