Second line Therapy

Following treatment with Alimta and Cisplatin you may have a respite period until your tumor begins to once again become active.  This is the time to explore second line therapy.  There are many drugs and combinations of drugs that have demonstrated some activity in mesothelioma but have not been studied in large enough numbers to get FDA designation as approved second line therapy.

Insurance companies can deny these therapies but in many cases will permit treatment once a denial followed by an appeal process takes place.  Each insurance plan is different but it usually is a multi step process that takes place over a few weeks which though creating much anxiety and angst can in most cases be resolved.  If you have completed you initial treatment and are in the “watch and wait phase” then you have the time to explore the next treatment option.  There are a number of clinical trials available as second line and we should discuss them together as there are factors that make you eligible or ineligible for these trials. Second line therapies that are not part of a trial can be used at any time but Phase II studies usually require that you have failed one standard regimen and sometimes will disqualify you if you have had additional treatments so it is important to get this right and leave as many options open for future needs. If your tumor has progressed and you need to seek immediate treatment be assured that a new treatment will not be introduced until you are one month out from prior treatment.  This is required as we want patients to have a resolution of toxicities from the prior regimen so there will be no confusion as to what side effects have been induced from which agent.  You will need a new work up which usually includes labs and scans and if on protocol you might have some protocol specific testing as well.

Scans are planned close to the time of the start of your new regimen so measurements can be obtained for future comparison.   If on a clinical trial with a new agent not yet approved for cancer you will be given the drug at no cost but will incur costs associated with what is considered standard of care.  This should all be discussed with you at the time of the consent process.  You have a right to know your financial obligations and should insist and a full disclosure of what to expect.  If you are having financial difficulty then you should schedule an appointment with an out patient oncology social worker.  They are trained to discuss insurance issues, help you identify organizations that provide financial assistance, network with pharmaceutical companies to help you obtain free or discounted drugs if you qualify.  This is a valuable resource as is your case manager at the insurance company.  Ask your health insurance company to assign a case manager to you.

This person once identified should become familiar with your care and often assists in an appeals process should you have treatment or testing denied. This is done in conjunction with your physician’s office.  They are used to the appeal process and know the correct wording to assist in getting approval.  Do not try to do this on your own as it can lead to further blocks.  Look into what plans are offered and be prepared if necessary to make a change during your company’s open enrollment time.  If you are on Medicare explore what options are available including AARP which gets high approval ratings from many on this site.  They have some great plans to supplement your existing policies.  Medicare has a help center where you can directly ask questions pertaining to your coverage….and beware of Medicare HMOs they tend to be very restrictive so explore them carefully before you sign on.  With all of this in mind you should be ready to explore the various treatment options.

~Mary Hesdorffer, NP

Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376

Meso Awareness Day

This year’s Meso Awareness Day is creating much needed meso awareness thanks to you, the meso community.  The Meso Foundation was fortunate to be invited to our City Hall to receive the proclamation of September 26th as Meso Awareness Day from our Mayor and City Council.  After the Mayor read the proclamation, Chris was permitted to say a few more words about the Foundation and why we are here.  He thanked our local government for joining with the meso community to raise awareness at home and how that information translates to awareness throughout the nation.

Sharing our stories and experiences helps educate the many mis-informed people about the dangers of asbestos and the necessity of commiting research funds to create better treatments and a cure for meso. Many of you have been effectively creative in your thoughts on  how to raise meso awareness.  I’ve joined multiple groups on social networks who are spreading the word to others about the disease.  In addition to many of you connecting to others online,  I’ve heard of  some of you making posters, t-shirts and buttons to observe and share our experience with meso; all of which are great ideas.

Many of us have asked our government to recognize mesothelioma on Meso Awareness Day by issuing its official proclamation on September 26th. The following is a list of some of the proclamations sent to the Foundation:

Pennsylvania- Yearly proclamation of recognition for September 26th as Meso Awareness Day by Governor Ed Rendell.  This has been issued annually since 2003.

Kentucky- Resolution proclaming Meso Awareness Day on September 26th by Governor Yvonne Hall.

Michigan- Resolution proclaming Meso Awareness Day on September 26th by Governor Wendy Martin.

Illinois- Executive Department proclamation for September 26th, 2008 as Meso Awareness Day issued by Governor Blagovich.

Georgia- Proclamation of Meso Awareness Day on September 26th issued by Governor Sonny Purdue.

Vermont- Proclamation of Meso Awareness Day on September 26th issued by Governor James H. Douglas.

Rockland County, New York- Meso Awareness Day Proclamation for September 26th from the Honorable Harriet D. Cornell.

Roselle Park, NJ- Declaring September 26th as Meso Awareness Day.

Santa Barbara, CA- Issued proclamation of Meso Awareness Day on September 26th, 2008 by Mayor Marty Blum

Please contact me if you would like to add to this list as well as for any other questions on how we can use our stories to educate our lawmakers and obtain the much needed attention and resources from our government.

Today, as we listen to Warren Zevon and sport our Meso Awareness gear we unite in the fight and pledge to continue our efforts throughout the year.

Thank you all for your hard work and hope!

Believing,
~Jeni

Newly Diagnosed Patients

I am so pleased to let those who are newly diagnosed know that there are a number of clinical trials either open or getting ready to open at sites across the country that offer  some exciting new options.  If you have not begun treatment please call me at 877 363 6376 X7275 so I can discuss all of the new options available to you.  Making appropriate referrals is important so time is not wasted.  I make these referrals based on stage of disease, type of mesothelioma, current and past health status and insurance.  Taking the time to made a good decision can positively affect your future. Welcome to the community, you will find great support and information on our site.  Take some time to get acquainted with the site as there is much to offer in terms of education and support .  If you have begun treatment we can discuss disease and symptom management and also look at what future treatment are available should you require a second line of treatment.

~Mary Hesdorffer, NP

Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376

Hospice Care

Choosing hospice care does not mean that one is giving up on life but rather choosing to  end treatments aimed at attempting to cure the disease or condition and elects treatment that eases pain and discomfort Hospice services are available once a patient is thought to be in the final 6 months of life. Hospice nurses receive special training in both pain management and grief counseling.

The Medicare benefit for hospice care does not cover expenses for room and board at nursing homes or long-term care and assisted living facilities. Medicaid and some personal insurance plans, however, cover these room and board expenses.  You should discuss this with your private insurance companies to find out what your benefit options are.  There is no stigma attached to having your loved one admitted to a facility. Many of you require complex care, have caregivers with multiple health problems or feel ill equipped to render the necessary care.  Many skilled nursing facilities have hospice services so if you have extended care insurance you will be able to obtain inpatient hospice as well.   Find out which facilities are  covered and visit them to see if they meet your expectations.  If you are currently receiving visiting nurse services  some have contracts to render hospice care as well.  This can be so comforting as you will already have established a relationship with many of the nursing staff.

The decision to accept hospice care should be made by the patient.  There should be a frank discussion with the oncologist about his/her present condition and if any further treatment would be thought to be beneficial.  Sometimes chemotherapy is not given for a ‘curative” effect but to relieve symptoms such as shortness of breath or pain control.  Radiation therapy is also given for the same reasons.  Some insurance companies will permit short term therapy aimed at relieving symptoms while on hospice but this usually entails a process of denials and appeals.  The most difficult time for the caregiver and family is to accept the patients’ decision to enter hospice.  So many view this as giving up and feel that if they all rally behind the patient they can encourage them to change their minds.  This can cause quite a bit of tension among family members and results in the patient retreating and not being able to express their wishes.  If the oncologist thinks that hospice is appropriate and if the patient is in agreement then the decision should be supported.  If on the other hand the oncologist is not a mesothelioma specialist and you have doubt about whether all options were explored, then seeking a second opinion might be valuable.  If the patient is exhibiting signs of depression and you feel that in their normative state they would make a different decision than they should be treated for depression.  Remember, there is no harm in choosing hospice nor is it a decision that cannot be reversed.  Patients often times leave hospice care if they feel stronger and some begin treatment at a later point in time.  There is definitely the exception to the rule but the possibility always exists.

If you have not chosen hospice and your loved one dies outside of these services it does not mean that you cannot access their bereavement services.  Most hospice facilities offer support groups and grief counseling and this can be so helpful to those of you who have lost a loved one.  While I am not going to address grief and dying in today’s blog I am going to encourage all of you who might read this to call a friend or family member who has lost a loved one.  It is all too common that we are all there to offer our support in the immediate mourning period but forget that grieving takes place over a prolonged period of time and anniversaries and holidays are especially difficult.

~Mary Hesdorffer, NP

Click here to contact Mary Hesdorffer, Nurse Practitioner or call 877.363.6376

Pain Talk

One topic that pops up consistently in the meso community is how to manage pain.  I’m not surprised, as this is generally the chief concern of all patients faced with major diseases and their treatment.

Way back when I started in Nursing, decades ago, there were very few options for controlling pain. A patient who complained of pain would have to request medication (a short acting drug of 2-4 hour duration) each time he/she felt it was needed. If the disease had progressed to the point that the person was deemed terminal, or they were in considerable pain the majority of the day, the only other option was to “snow” them into oblivion with a heavy-duty drip of intravenous morphine. Needless to say, these options were pretty unsatisfactory to the patients and families involved.

Several events occurred to change this picture, including the establishment of the Hospice movement, and the development of more sophisticated drugs and delivery systems.  What didn’t change however were the attitudes of many practitioners. Even today, we still encounter doctors and nurses who are reluctant to provide the necessary relief from pain, often citing the fear that a patient will become “dependent” or addicted.

Pain is NOT a character-building experience! There are many downsides to unrelieved pain, including diminished quality of life, sleep deprivation, depression, social isolation, decreased appetite, reduced mobility, and even decreased immune response.  In some cases, unrelieved pain can over-excite the nerves involved and result in a chronic over-stimulation of the pain response: in this scenario, even the slightest touch can be perceived by the body as excruciating.

The management of pain is so important to health and well-being, that the organizations charged with regulating healthcare delivery have declared it to be a major patient right, and mandated that all complaints of pain be taken seriously, and addressed to the patient’s satisfaction (not the satisfaction of the doctor or nurse). So what can you do if your health care provider is not managing your pain as you would like?

First, let’s summarize how cancer pain develops. I’ve heard practitioners say “the cancer is gone, so there shouldn’t be any more pain”. Not true. Although cancer itself can cause pain by pressing on organs or disrupting nerve pathways, the treatment of cancer plays an equally large role in discomfort. Surgery, radiation, and chemotherapy can all impact the body adversely and result in pain sensations that persist even if the cancer itself has been eradicated.  Pain is the body’s way of signaling that an insult or disruption has occurred to a body part or system – if the insult is beyond the body’s ability to repair it completely, the pain that results may become chronic.

Happily for us, statistics show that the majority of pain can be treated by medication and/or non-drug interventions. But the first step in relieving pain is to figure out what is your body is telling you. You should keep a pain diary for use in discussing pain with your practitioner. Try to document when the pain occurs, what makes it worse, what makes it better, and describe what the pain feels like to you. Is it sharp or dull? Gnawing? Stabbing? Burning? What part of your body is involved in the pain? Is the pain constant, or does it wax and wane during the day?

Pain does not always occur in the area that has been impacted by disease or treatment. Some pain can be “referred” – that means that the body part involved expresses the pain in another area, such as pain from the diaphragm being referred to the shoulder area.  Practitioners are trained to interpret referred pain and trace it back to its origin.

Pain is not always a clear cut sensation, especially in cancer patients who have undergone multiple treatment modalities. Their pain may be of mixed origin: there can be the burning of nerve pain, the deep ache of bone pain, and the sharp pain of surgical incisions. For this reason, along with other factors, the relief of pain may not entail a single medication or approach. Many cases of pain require a “cocktail” approach to deal with the different sources of discomfort, such as an opiate for general pain relief along with a drug for the nerve pain and an anti-inflammatory agent.

Medications for pain can be short-acting (2-4 hour relief) or long-acting (up to 12 or 24 hours), and many patients find they need a combination of agents – a long-acting medication for general relief, and a short-acting agent for ‘break through’ pain that arises occasionally and breaks through the relief afforded by the longer acting agent. It is usually helpful to stay ahead of the pain if you can, especially with pain of a chronic nature. That means you don’t wait until the pain becomes established, but anticipate it instead and take your medication on a routine or regular basis. If you are on short-acting agents and find yourself in an ongoing cycle of having to take them routinely every 3 or 4 hours, you might need to consider switching to a longer-acting agent.

Each person’s pain is unique to them and involves many factors like ethnicity, genetic heritage, and individual experience and history. This means that you may need to experiment with different drugs and interventions to find what works best for you. Crucial to this process is a practitioner who is well-versed in pain management techniques, and who is willing to listen to you and work with you until optimum relief is obtained. In my experience, surgeons are probably the least effective in managing persistent pain – they are used to addressing the pain of surgery which is usually of short duration and disappears as you recover. Consult a practitioner who specializes in pain management – probably the best option is one who is trained to manage oncologic, or cancer pain.

Don’t worry about becoming addicted. This is an old myth that has been disproved by extensive research that shows that cancer pain patients can handle very high doses of medications with no dangers of drug dependency.  If you find that a medication is not helping the way you wish, don’t give up: you may need to increase the dose or the frequency, or even try a different medication or combination of medications. Again, having a practitioner who is attentive to your feedback is critical to success.  But the most important factor is YOU and your caregiver: don’t assume pain is a legacy you have to learn to live with. You have fought hard for your life, and deserve to have the best quality of life that can be achieved! You don’t deserve to be so exhausted by discomfort that you haven’t got the strength to go on fighting!

For help in understanding cancer pain and how to talk to your practitioner about pain, visit the Cancer Pain website at www.cancer-pain.org.

~June Breit