Advice About Mesothelioma » Coping & Support

Pain Management in Mesothelioma

Steve Holder — Sun, 28 Dec 2008 22:01:02 +0000

Pain is one of the symptoms of mesothelioma. Managing pain associated with mesothelioma is essential for more than just the patient’s comfort. Chronic, uncontrolled pain adversely affects treatment because it:

Affects the patient’s ability to sleep and eat, leading to fatigue and worsening health
Interferes with being able to schedule treatments
Contributes to a negative mental outlook
Makes it more difficult for the family to help the patient cope

Avoiding these negative effects by successfully managing pain is essential to improving treatment outcomes and lengthening survival.

Initially, the pain and discomfort of the disease is mild and controllable with over-the-counter medications. In the end stages, the pain progresses to severe and chronic but is treatable with strong narcotics. Throughout the course of the disease, the patient also has other options for keeping pain under control.

Pain Causes

Initially, discomfort and pain is normally caused by the build-up of fluid between the two layers of the mesothelium. In pleural (lung) and pericardial (heart) mesothelioma, fluid build-up in the chest area results in pain in the chest or back. In peritoneal mesothelioma, the pain occurs in the abdomen.

As the tumor grows, it begins pressing against nerves and other organs causing an increase in pain sharpness and longer-lasting episodes. It can also cause a burning or tingling feeling. Surgical treatment, radiation, and chemotherapy can also contribute to short-term pain issues.

In the later stages of the disease, as the cancer spreads farther into adjacent tissue, it begins to have a greater effect on nerves and organs. This greater involvement leads to increasingly severe and chronic pain symptoms.

Medications

Pain Relievers

In the early stages of the disease, pain is controllable with over-the-counter medications such as acetaminophen or ibuprofen. When pain advances to the point that these are no longer effective, the doctor will prescribe a narcotic medication such as:

Codeine
Hydrocodone
Oxycodone
Hydromorphone
Fentanyl
Morphine

The choice of medication is usually determined after considering the patient’s condition and the drug’s potential side affects or interactions with other medications. These drugs – whether delivered orally or using a patch – are usually slow-release to help maintain a constant amount of pain-reliever in the bloodstream. Note that narcotics do not stop pain. In the right dose, they simply reduce the perception of pain to a tolerable level.

Occasionally, however, the patient on narcotic pain relievers experiences breakthrough pain, which is an intense episode lasting a short while. If breakthrough pain becomes a problem, the doctor can prescribe a fast-acting narcotic such as oral immediate-release morphine to be taken when breakthrough pain occurs.

Other Medications

Anti-depressants can actually be effective for some types of pain, and anti-convulsants can control burning and tingling pain. When pain results from swelling, steroids can reduce the swelling and thus the pain.

Because there is such an array of choices, it’s important to discuss with your doctor exactly what type of pain you’re experiencing, when and where it occurs, how intense it is and how long it lasts. When one medication is not working, he or she will be able to adjust the dosage or choice of medication to be more effective.

Medical Treatments

Paracentesis

When pain is being caused by fluid build-up on the lungs (pleural effusion) or in the abdomen (peritoneal effusion), the doctor can relieve the pain by draining the fluid in a procedure generally called paracentesis, or more specifically:

Thoracentesis when fluid is removed from the membrane lining the lungs (pleura)
Peritoneocentesis when fluid is removed from the membrane lining the abdomen (peritoneum)
Pericardiocentesis when fluid is removed from the membrane lining the heart (pericardium)

To accomplish this, the doctor applies a local anesthetic and uses a fine needle to locate and withdraw the fluid from the chest or abdomen.

Pleurodesis

If fluid build-up in the mesothelium is a recurring problem, the doctor can perform pleurodesis. In this procedure, an irritant such as Bleomycin, Tetracycline, or talc powder is injected into the space between the layers of the mesothelium. This causes the membranes to stick together and eliminates the space where fluid would otherwise collect. Preventing further fluid build-up effectively eliminates this as a source of pain.

Surgery

Although surgery involves inevitable short-term pain, removing the tumor that is invading adjacent organs, tissues, and nerves can remove some of the source of a patient’s more chronic pain. After recovering from surgery, the resulting pain relief should last for some time until the cancer begins to recur.

Radiation

Radiation has the effect of killing cancer cells and can reduce the size of a tumor. Studies have shown that this can reduce pain symptoms for up to several months following treatment. Sometimes no more than a single treatment is necessary to have an effect on pain. A long course of radiation therapy may itself become a source of pain, however, if extensive treatments begin to damage healthy tissues.

Spinal Catheter with Infusion Pump Implant

When pain is no longer controlled satisfactorily with standard medications and delivery methods, the doctor may change the pain management strategy to a spinal catheter with an infusion pump implant.

This approach places a catheter below the skin and directly into the fluid at the base of the spine and attaches it via tubing to an infusion pump. The programmable pump delivers precise doses of narcotic into the spinal fluid where pain signals are then blocked. This direct drug delivery method requires much smaller doses and therefore reduces side effects.

Even better for the patient, the pump – about the size of a hockey puck – can be implanted just under the skin of the abdomen providing the patient with a highly effective and portable pain relief system. Batteries last up to five years and the doctor can refill the pump’s drug reservoir with a simple injection.

Other Pain Relief Strategies

Some patients may be interested in alternative pain relief techniques that don’t involve drugs and narcotics. Though many of these approaches will not completely alleviate pain – especially severe pain – many people find that they can reduce their reliance on pain medications by using one or more of these techniques. If any of these techniques appear interesting, you may want to do further research to learn more.

Relaxation
Biofeedback
Imagery
Distraction
Hypnosis
Transcutaneous Electric Nerve Stimulation
Acupuncture
Massage
Acupressure
Vibration
Cold or Heat
Menthol
Skin Stimulation

Mesothelioma Support Groups

Steve Holder — Tue, 23 Dec 2008 18:49:27 +0000

Besides the medical and financial challenges mesothelioma patients face, they often are dealing with difficult emotional issues as well. Support groups provide a community where people who are grappling with similar problems can discuss their common issues – whether related to treatment, or money and other practical needs, or simply coping with their feelings.

Support groups can be face-to-face groups or online communities. The face-to-face groups often provide the deeper emotional support that comes from actual human contact. To find a local group, ask your oncologist. Because mesothelioma is a relatively uncommon form of cancer, a mesothelioma-specific group may not exist in your area. In that case, you might consider joining a local lung cancer or general cancer support group.

An online support group is another alternative. Though you’ll rarely meet face-to-face with other members from across the country or the world, you’ll have no trouble finding one to join, and no lack of people to talk to who are in your shoes. Members are often very active in discussing the latest treatment information and how they deal with the myriad everyday problems they face, as well as sharing their deepest feelings and helping one another cope.

Online Support Groups

Association of Cancer Online Resources (ACOR) – In addition to useful information and resources for cancer patients, ACOR manages a mesothelioma mailing list. Subscribers to the list are linked into a community where each member’s email to the group is received by all other members, An independent study revealed that the shared experiences in these types of communities help members feel less isolated by their disease.

CancerCare - Offering support for all cancer patients, Cancer Care has online groups specifically for men and for women, and for patients and for caregivers.

Cancer Hope Network - Although they can’t always match you with someone having the same cancer, they attempt to match you one-on-one with a Cancer Hope Network Support Volunteer. They are actively recruiting support volunteers with mesothelioma in case you’ve thought of reaching out to help another sufferer.

Cancer Survivors Network - Sponsored by the American Cancer Society, the Cancer Survivors Network has a variety of discussion boards and chat rooms for cancer sufferers and cargeivers. Although there is not a mesothelioma-specific forum, you can find discussions of mesothelioma by going to the lung cancer forum and entering mesothelioma in the search window.

LUNGevity – The LUNGevity Foundation offers extensive support resources for lung cancer patients, and a mesothelioma-specific discussion forum on its Message Board.

Mesothelioma Applied Research Foundation – Joining the Meso Foundation community gives you access to discussion boards offering information and support, as well as the most up-to-date treatment information.

OncoChat – OncoChat offers a live chat room for anyone whose life has been touched by cancer.

The Wellness Community – The Wellness Community provides a discussion forum and online support groups for cancer sufferers and caregivers. They don’t yet have a mesothelioma-specific forum, but many of the current forum topics apply to most any cancer patient. Their unique support group format enrolls a maximum of 10 people in each group and is led by a trained counselor in a 90-minute once-a-week live chat.

Financial Resources for Mesothelioma Patients

Steve Holder — Mon, 22 Dec 2008 22:31:43 +0000

Even with health insurance, mesothelioma can create a substantial financial burden. Without insurance, it can be devastating.

Worrying about money while fighting a potentially fatal illness is difficult at best, so we’ve assembled a list of resources that may help you obtain financial assistance for:

You should also know that lawsuits in past mesothelioma cases have created settlement funds that are available to current victims. See our discussion on how to file a claim in the Mesothelioma Compensation article in the Legal Issues section of this web site.

Medical Payments

Health Insurance

Private Health Insurance – Having your own health insurance or insurance through your employer will significantly ease your financial burden. However, insurance won’t pay for everything and insurers have been known to make mistakes that leave you owing for services they should have covered. Before you know it, you can be deeply in debt for just your share of medical expenses. Your best advice is:

Know your insurance policy’s terms and limits.
Keep your records organized.
Question anything the insurer says is not covered. Sometimes it can be as simple as a mistake in a billing code. Some insurers offer Case Managers who can work on your behalf to cut through red tape and fix mistakes.

Staying on top of the paperwork can be a challenge when you’re ill and trying to manage critical care and treatment at the same time. If you need to, don’t be afraid to ask a loved one or friend to help you.

To understand the ins and outs of the typical health insurance policy, refer to the following well-written article on Traumatic Brain Injury – The Medical Insurance Maze.

Medicare – In some respects, this federally sponsored health insurance for people 65 and older is similar to private health insurance. You need to know what’s covered, what’s not, and coverage limits, and you also need to keep your records organized. Medicare, however, offers trained counselors to help you with a wide variety of issues related to:

Medicare, Medicaid, and Medigap insurance
Claims and billing problems
Other health plan and long-term care options
Referral to other medical and financial assistance programs

These Medicare counselors are sponsored by the federally-funded State Health Insurance Assistance Program (SHIP). You can reach your local SHIP counselor by calling 1-800-MEDICARE and asking for health insurance counseling.

Assistance with Medical Expenses

Medicaid – This is a state and federal program to provide financial assistance to people who need help paying medical expenses. Qualification is based on income and assets. For more information, contact your local state health department, social services agency or welfare department.

Hospital Funds – Many hospitals have access to state or federal funds that are available to offset the medical bills of people who are unable to pay. If you’re struggling with hospital bills, ask someone in your hospital’s billing department what help may be available.

Medical Office – It’s also possible to negotiate with your physician or clinic for reduced charges on services, especially if you’re paying a significant portion of the bills out of your own pocket. It doesn’t hurt to ask. Explain your situation and ask if there is any discount they can apply to their services.

Non-Profit Organizations – Many charitable organizations provide financial and other forms of assistance to cancer patients in need. In addition to those listed below, you can also check with your local United Way, Salvation Army, Lutheran Social Services, Jewish Social Services, and Catholic Charities to see what other assistance may be available in your area.

Drug Assistance Programs – A variety of resources are available to help with the costs of prescription drugs. To find out what assistance programs you qualify for, visit:

HRSA and Hill-Burton – These government programs that provide free healthcare and assistance with medical payments are often cited as potential resources for mesothelioma patients. In reality, the health clinics and hospitals involved in these programs will rarely be capable of treating mesothelioma. If you would like to check them out anyway, here are the web sites.

Living Expenses

Disability Insurance

Private Disability Insurance – If you have a disability insurance policy, now is the time to discuss your coverage with your insurer. Even though you may still be physically able to work, being diagnosed with a fatal illness is sometimes de facto evidence of disability.

Be sure to check with your employer, too. Disability insurance might be an employment benefit that you didn’t know you had. Disability insurance payments can be used for any purpose.

Also, check your credit cards. You may have disability insurance on one or more. It won’t provide actual cash for you to use, but it will suspend the need for you to make payments, freeing up your available cash for other needs. You’ll want to be cautious, though, because activating such insurance may put a temporary freeze on your ability to make additional charges.

Social Security Disability Insurance – Contact your local Social Security Administration office to inquire if you qualify for Social Security Disability payments. Qualification will depend on your age, work history, and prognosis.

Veterans Disability – Qualified veterans can receive VA disability payments when their mesothelioma is caused by asbestos exposure in the military. For more information, see the article on Assistance for Veterans with Mesothelioma in the Legal Issues section of this web site.

Life Insurance

Cash or Loan Value – The cash or loan value of a life insurance policy can be a source of funds for living expenses.

Viatical or Life Settlement – Another way of obtaining cash from a life insurance policy is by selling the policy to an individual or corporate investor. After the sale – referred to as a viatical or life settlement – the investor becomes the beneficiary and is responsible for making the premium payments. The selling price is typically much higher than the policy’s cash or loan value, but you lose the policy.

Notice: Do not attempt to obtain money from a life insurance policy without first consulting a knowledgeable financial advisor.

Reverse Mortgage

If you have significant equity in your home, you may want to investigate taking out a reverse mortgage. With a reverse mortgage, the lender sends you a check each month and adds that amount to your mortgage balance.

Supplemental Income

Supplemental Security Income (SSI) – When contacting your local Social Security Administration office concerning Social Security Disability, also inquire about Supplemental Security Income. This program provides monthly payments to qualifying seniors and the disabled who have limited or no income.

Temporary Aid to Needy Families – This program replaced many of the former state and federal welfare programs in 1997. The program is now administered by the states with block grants from the federal government, so qualifications vary by state. Contact your state social services agency for more information.

Other Assistance

GovBenefits.Gov – This Web site provides access to an extensive list of Federal aid programs from nutrition assistance to help with utility bills. To use the site’s search tool requires answering a 133-item questionnaire, but the resulting list of programs is quite comprehensive. Even though it may list many programs you qualify for but aren’t interested in, it’s very likely you can find helpful resources included.