Not knowing what to expect - Mesothelioma the final stages

Hi Chesanne9my heart went out to you when I read your comments here. My husband and I celebrated our Ruby anniversary in November last year. He had Non-Hodgkins Lymphoma 17 years ago and recovered only to be diagnosed with Mesothelioma in December last year (just before Christmas)

He decided to take the chemo offered as palliative care treatment and after the 1st round of chemo was so ill I worry he won't agree to more.

Like Pete my hubby is sleeping a lot.....he is angry and very scared and like you I struggle to watch him disappearing each week in front of my eyes.

 I hope that Pete is well enough to renew your vows and my thoughts are with you both in the journey ahead. I cannot tell you how much I have raved about the injustice of all this as I know you probably have already done the same.

Love and thoughts are with you both

Pl

Just like many other types of cancers, Mesothelioma Stage 4 is the most advanced and difficult to treat. Sadly, most people do not develop any symptoms until the disease has progressed to Stage 3 and Stage 4. In fact, by the time they are diagnosed, the disease is often in the late stage.

"If you’ve been diagnosed with early–stage mesothelioma, you’re most likely eligible for traditional treatments—surgery, chemotherapy, radiation therapy—that can extend your life expectancy."

In Stage 4, mesothelioma usually has spread from the point of the origin throughout the patient’s chest cavity, abdomen, heart, distant lymph nodes, brain, spine, prostate as well as into the bloodstream.

Sadly, the prognosis for mesothelioma Stage 4 is usually very poor. Most patients at this stage usually have a year or less to live. At this stage, invasive surgical procedures and aggressive treatments are not recommended as the side effects may be severe. In other words, most treatment options are palliative rather than curative. This means that the mesothelioma patients’ medical needs are focused on end-of-life care such as pain relief management, emotional support, improving symptoms, and generally improving their quality of life. (See alternative treatments for mesothelioma patients)
Mesothelioma Stage 4 Symptoms

Since the tumors have spread widely throughout vital body organs, the symptoms of mesothelioma Stage 4 tend to be very much severe compare to other stages. These symptoms only appear after the cancer has progressed in the body. The common symptoms of Stage 4 mesothelioma include;

- Shortness of breath and difficulty breathing

- A general feeling of unwellness or intense fatigue

- Fluid accumulation in the chest and abdomen

- Abdominal pain and discomfort

- Difficulty swallowing (Dysphagia)

- Coughing up blood (Hemoptysis)

- Chest tightness and pain

- Unexplained weight loss

- Night sweats and fever

Some mesothelioma patients suffer from cachexia, a syndrome that involves weight loss, general body weakness, loss of appetite, muscle atrophy, and fatigue. Stage 4 mesothelioma may also cause blood problems such as anemia (low red blood cell count) and thrombocytosis (high platelet count).
Mesothelioma Stage 4 Treatment Options

The treatment plan for asbestos-cancer is palliative (pain relieving and comfort) than curative. The main treatment options available are intended to extend the life of the patients, alleviate the symptoms, and make them more comfortable. Here are the main treatment options for the late stage of mesothelioma.

• Chemotherapy: It is one of the most common treatments for Stage 4 mesothelioma. Chemotherapy drugs are administered so as to stop the growth of tumors and shrink them. Chemotherapy is used to alleviate the cancer symptoms and also to extend the patient’s life.
• Radiation Therapy: Doctors use targeted radiation to shrink the tumors and kill mesothelioma cells. Different types of radiations are used depending on the location of the tumor. In Stage 4, radiation therapy is used to help alleviate pain caused by the tumors.
• Palliative Surgery: Curative surgery is not usually recommended as the tumor is usually too large to be removed. However, palliative surgery may be used to target problematic tumors so as to decrease pain and even help the patient breathe much more comfortably.
• Supportive Care: Supportive care in Stage 4 is usually recommended to help alleviate symptoms and improve the patient’s quality of life. The doctor may recommend oxygen therapy, pain medication, and respiratory therapy to improve lung function, control pain, and increase comfort.

"If you’ve been diagnosed with advanced–stage mesothelioma, traditional treatments may not be an option, but you can participate in clinical trials where researchers are testing newer treatments like immunotherapy."

Source: Mesothelioma Stage 4

My 81 year old mother was diagnosed earlier this year with plueral mesothelioma.  She really didn't have any symptoms.  She went in for a routine appointment and the doctor found fluid in her pluera, drained it a couple of times, tested it and was diagnosed.  Her biggest problem is the dysphagia.  It  started with a little gagging and now she can barely eat anything and has most difficulty swallowing liquids.  She has lost a lot of weight.  They tried a procedure to help her swallow better but she said that it actually made it worse.  She was originally offered chemo and declined.  Now he took chemo off the table as he is worried about her lack of nutrition and hydration.  The doctor has strongly suggested that she allow them to install a feeding tube but "she doesn't want anything sticking out of her stomach" not to mention that someone warned her against it due to the possibility of infection.  The doctor told her that those reasons were the least of her worries and that she should seriously consider it.  We are watching her slowly dwindle away.  She still gets around (quite stubborn) quite well for the most part (goes to bingo once or twice a week).  Does anyone know of anything short of the already described options for alleviating the swallowing issue?  Oh and constipation has been an issue as well however she has always had bowel issues so we aren't sure if it is related or not.  Any suggestions would be helpful.  It is so hard to sit by and watch her suffer.

My hubby was Diagnosed in May of 2015, while trials offered some stability in combination with chemo etc we now after 26 months are finished with any currative care and to our shock went from stable in may to the cancer exploding. The Pet scan took our breath away as well as that of the staff who provided care for my hubby at UCSF, California. So many details to share but for me, as a care giver I want to know what to expect so I can be prepared and offer him the best support possible. Kidney's were damaged during treatment and the Plueral mesothelioma has spread to lymphatic system and has spread to his belly and possibly his brain. Fluid is being drained from his belly each week. He has a dry cough that bothers him when he eats and struggles to keep his food down. Are these normal progressive steps of his journey? As a system is overwhelmed by progression other than pain and breathing to manage, what are other things other caregivers observed and what suggestions will help me, practically care for my beloved hubby?

Hi Glenda2,

Sure, I feel your pain and I hope the best for you and your family. 

Dysphagia or difficulty in swallowing, is a common disorder that may be caused by neurological disease, stroke, mesothelioma, especially pleural mesothelioma  inflammation, esophageal spasm (sudden squeezing of esophagus muscles), scleroderma (esophagus tissues become hard and narrow), dementia, and other factors.

With this condition, it usually takes more effort to transport food from the mouth to the stomach.

Some of the symptoms of dysphagia include choking when eating, recurrent heartburn, coughing or gagging when swallowing, bringing food back up, drooling, a sensation of food getting stuck in the throat or chest, including others.

Now apart from increasing the risk of choking and aspiration, this condition also increases the likelihood of malnutrition and dehydration over time.

If you suffer from dysphagia, it’s crucial to make necessary diet adjustments in order to obtain enough fluids, essential nutrient, and energy needed for proper body function.

The list is long, so you can see more about dysphagia diet here....(features of a dysphagia diet)

We expect the best

hello

i am so sorry your and your family have to go thru this especially your dad. My prayers are with you always

i lost my husband two years ago. We were married for 36 years.

we went to the emergency room because he was having a hard time breathing, they did xrays and told him he had a bad case of pneumonia and sent him home with a z pack.

a week later i took him back to the emergency room and they did the xrays again and his lungs were full. you see he was at work (garbage man) and he lifted an empty box and could not breathe at all, lost his bodily functions.

they put him in the hospital, did a procedure where they brushed his lungs. that was successful.

But then we were told he had fluid around his heart that needed to be removed. they did that procedure and did a biopsy of the liquid and the tissue of the sack around his heart.

we were told he had mesothelioma and two weeks in icu and he was gone.

no one will help us with any of benefits they have in place, no one will listen or answer us.

my husband worked so hard for his family and was ready to retire to fish and enjoy life.

but now i have two sons that miss their dad sooo bad.

and me i am so alone and lost without my heart.............

sad to say yes the more pain means getting more hard to deal with..

Love him with all your heart he is the best.