The national news is full of stories like this video where patients who are uninsured and under-insured are suffering not only from the ravages of their cancer or its treatment, but also bear a terrible financial burden because of their medical bills. Nowhere is this more true than those suffering with brain cancers. Most brain tumors are very stubborn to treat, and the treatments themselves can be very debilitating. Even if their treatment is successful, patients may have residual nerve damage that prevents them from returning to their work.

There are a number of valuable resources that can be of help to patients with brain cancer, and other forms of cancer as well. Let me summarize a few that I especially like:

National Brain Tumor Society: This video features the National Brain Tumor Society (NBTS) as one resource for social and financial assistance of patients with brain tumors and their families.  NBTS was formed in 2008 by the merger of two leading organizations that had served the brain tumor community: the National Brain Tumor Foundation and the Brain Tumor Society. Both legacy organizations had been formed in the 1980s by parents and other concerned individuals who were committed to increasing both research funding and access to resources specific to brain tumors. I would highly recommend that you visit their website my.braintumorcommunity.org.

Patient Resource Cancer Guide: Our companion website has information about brain tumors and a list of trusted websites for more information. It also has extensive information from organizations that offer financial and social services assistance for people affected by cancer. Visit patientresource.net for more information.

The Patient Advocate Foundation (PAF): A national organization that provides free advice and assistance about financial services and social services for cancer patients as well as those with other serious chronic disease. They are also helpful in providing grants to patients to pay for some drugs or the co-pays (the patient portion of the payment). Their Co-Pay Relief Program provides direct financial support to insured patients, including Medicare Part D beneficiaries, who must financially and medically qualify to access pharmaceutical co-payment assistance. The program offers personal service to all patients through the use of call counselors; personally guiding patients through the enrollment process.

If you have health insurance but are still struggling to meet your out-of-pocket cost you would be considered underinsured.  PAF recently launched a new directory –The National Underinsured Resource Directory– intended to help underinsured individuals and families locate valuable resources and seek alternative coverage options or methods for better reimbursement.

For more information visit their website at patientadvocate.org.

CancerCare: This is another national organization that can help patients. CancerCare provides financial assistance to help with some types of costs, including transportation, homecare, childcare, and pain medication. They have social workers and case managers are knowledgeable about financial issues and will work closely with you to get you the help you need.

 Like PAF, they can also provide you with helpful resources, in addition to offering direct financial assistance for people who qualify. In some circumstances, they can help individuals who cannot afford their insurance co-payments to cover the cost of medications for treating cancer. They currently offer assistance for people who have been diagnosed with breast cancer, colorectal cancer, glioblastoma, head and neck cancers, non-small cell lung cancer, pancreatic cancer, and renal cell cancer. CancerCare publishes a free resource guide –“A Helping Hand Resource Guide—which includes both national and local financial assistance resources for people with cancer and their loved ones.

For more information visit their website at http://www.cancercare.org/

American Society of Clinical Oncology (ASCO) and Cancer.net: ASCO is the largest cancer professional organization in the world. It has a great patient website. ASO has published a booklet about finances –“Managing the Cost of Cancer Care”—that can be ordered through its website at: http://www.cancer.net/managingcostofcare.

Pharmaceutical Patient Assistance Programs: Most drug companies have patient assistance programs that help cancer patients get access to their drugs, usually through an intermediary such as the Patient Advocate Foundation or CancerCare.

Since Avastin (bevacizumab), made by Genentech Oncology is a newly approved drug for glioblastomas of the brain, I will use their company and its website as an example. Through its Genentech Access Solutions program, the company provides patients and healthcare providers with coverage and reimbursement support, patient assistance and informational resources. Patient assistance support is for those eligible patients in the United States who do not have insurance coverage or who cannot afford their out-of-pocket co-pay costs.

Since 2005, Genentech has donated approximately $390 million to independent non-profit organizations that provide co-pay assistance. To learn more about these independent, public charities, patients can speak with a specialist from Genentech’s Access Solutions group. The Aviston Patient Assistance Program provides an opportunity for physicians and eligible patients who are treated for an FDA-approved indication and who reach an annual dosage of 10,000 mg to receive free Avastin from Genentech for the remainder of the 12-month period. This program is open to all patients receiving Avastin regardless of insurance coverage and is accessible through the Genentech Access Solutions program.

For more information, you can call (866) 4 ACCESS or visit GenentechAccessSolutions.com

Finally, and just as importantly, your oncology social worker, hospital patient services representative, local cancer organization and local United Way can guide you to additional sources of financial assistance.

Hot flashes can be a very debilitating condition for women who undergo estrogen depletion, either naturally (with menopause), with surgical ablation (of the ovaries), with certain types of chemotherapy, or with pelvic radiation, any of which can induce sterilization.  For many women, hot flashes are a tolerable condition, even though it has great “nuisance value”. For others, the symptoms are much more severe and can be quite debilitating.  Of course, estrogen or progesterone replacement are “natural therapies”, but there are known risks of taking estrogen for a prolonged period of time.  And some women are still symptomatic with estrogen replacement therapy, except in high doses.

A new study has identified yet another drug for hot flashes.  This trial was conducted by Dr. Charles Loprinzi and colleagues from the Mayo Clinic in Rochester, MN (see video) who found that a commonly used neurology drug can significantly reduce the frequency and intensity of hot flashes. A substantial number of these women had a history of breast cancer and many of them were taking various anti-estrogen hormone therapies for their breast cancer.  In this trial, a total of 207 women were enrolled into the trial because they had “bothersome hot flashes,” as defined by occurrence at least 28 times per week and sufficient severity to make the patient desire therapeutic intervention.

Two doses of Lyrica (Pfizer, NY, NY) were administered (75 mg twice a day, or 150 mg twice a day) compared to a placebo (sugar pill). The investigators found that Lyrica decreased hot flashes and was reasonably well tolerated. The lower dose was recommended (75 mg twice daily) and its effects were roughly comparable to those previously reported with other drugs. The higher dose of Lyrica (150 mg twice daily) had significantly more toxicity than the placebo and was primarily associated with symptoms of dizziness, mental confusion and memory disturbances.

Compared to base-line, the frequency of hot flashes was reduced by 58.5% with the lower dose of Lyrica, and 61% with the higher dose.  Interestingly, there was a 36% reduction in the frequency of hot flashes for women were on the placebo! (This emphasizes the need for such control trials when the end points of the trial are symptom relief.)

This is a very nice clinical trial with a convincing result that adds another tolerable and safe drug to the list of those that physicians can use for treating severe hot flashes. There have been a number of other drugs that provide a 50% or greater reduction in hot flash frequency or severity. A partial list of those prescription drugs approved for use in treating hot flashes include:

1. Gabapentin (Gabarone, Pfizer, NY, NY)
2. Venlafaxine (Effexor, Wyeth Laboratories, Pfizer, NY, NY)
3. Desvenlafaxine (Pristiq, Wyeth Laboratories, Pfizer, NY, NY)
4. Fluxotine (Prozac, Lilly, Indianapolis, Indiana)
5. Citalopram (Celexa, Forest Laboratories, NY, NY)
6. Sertraline (Zoloft, Pfizer, New York, New York)
7. Paroxetine (Paxil, GlaxoSmithKline, Philadelphia, PA)
8. Estrogen (Premarin, Wyeth Laboratories, Pfizer, NY, NY)

Here’s more information about hot flashes from our companion website, patientresource.net:

A hot flash is a sudden, intense hot feeling on your face and sometimes upper body. A rapid heartbeat, nausea, dizziness, headache, weakness, and/or sweating may also occur at the same time. A “flush” follows the hot flash; during a flush, you become red and perspire. Hot flashes are perhaps the menopausal symptom that women find the most uncomfortable and inconvenient.

Among the general population of women, hot flashes may last for a year or two after menstrual periods have stopped or may persist for several years. The intensity of hot flashes caused by tamoxifen usually improves after the first 3-6 months of treatment. Hot flashes vary in duration and frequency; most episodes last a few minutes, and they often occur at night, with night sweats often waking up women in the middle of the night.

Hot flashes may have specific triggers. These triggers vary among women, but the most common ones include alcohol, caffeine, spicy food, stress, hot weather, hot showers, and saunas. Identifying and avoiding triggers can help decrease the frequency of hot flashes.

Some suggestions for coping with hot flashes include the following.

* Wear cotton and avoid wool and synthetic materials.
* Dress in layers, so you can remove clothes in layers if needed.
* Keep ice water nearby to drink when a hot flash begins.
* Wear cotton pajamas or a nightgown and use cotton sheets on the bed.
* Take a cool shower before going to bed.
* Open the refrigerator door and put your head in when a hot flash begins.

Some studies have shown that vitamin E or vitamin B6 supplements can help reduce hot flashes. If hot flashes are severe, your doctor may suggest a low dose of an antidepressant. The drug that has been shown to be most effective is venlafaxine (Effexor); paroxetine (Paxil) is another alternative and may be better tolerated by some women. Mild sedatives may also be of benefit but there are risks associated with their use.

Many menopausal women have turned to herbal remedies, such as ginseng, black cohosh, evening primrose oil, licorice root, and others to alleviate hot flashes. However, the safety of these remedies in women with breast cancer has not been determined. Do not take any herbal supplements without talking to your doctor first.

This is an amazing story and an inspiration to all cancer patients! See below for news about a mother who had the foresight to preserve the sperm of her teenage son who was being treated for leukemia…no doubt something that was not on the radar screen of a young person who has been given a diagnosis of a serious and life-threatening cancer. Most cancer patients first think about surviving their cancer, and only later on think about the consequences of treatment and cancer survivorship. The teenage boy benefited from the miracle of modern day chemotherapy, which is now pretty standard for most forms of leukemia and lymphoma affected children, teenagers, and young adults. As a consequence, he became sterile and could no longer have children.

Dial forward 22 years after the diagnosis of leukemia and you have a grown man who is married and wants to have children. Thanks to his mom, he was able to do this…on the first pass of in vitro fertilization no less!  This story demonstrates that there is no “shelf life” for appropriately preserved sperm or eggs. They can be frozen for 22 years and then literally brought back to life again!

See my blog on fertility issues in women with the same inspiring results:
“Fertility Preservation: An Issue Less Than Half of Affected Cancer Patients Are Told About”

The common factor about these stories is that the patients, their family, and their doctors were all supportive of these fertility issues and made appropriate arrangements so that these cancer survivors could have the benefit of being parents with children of their own genetic make-up! Unfortunately, the majority of studies show that less than half of eligible cancer patients actually receive this information and thus are rendered infertile (sterile) for the remainder of their life. So be sure to talk to ask your doctor about fertility issues!

See the news article below for more details.

From The London Times, April 14, 2009

A former leukaemia patient who had his sperm frozen as a teenager has fathered a baby after doctors successfully thawed his sample a record 22 years later.

Chris Biblis was 16 when doctors told him that he needed radiotherapy that would leave him sterile and recommended before going ahead with the life-saving treatment that they put a sample of his sperm into cryogenic storage for future use.

Now aged 38, he is celebrating the birth of a healthy baby daughter, Stella, who was conceived after scientists injected a defrosted sperm into an egg from his wife, Melodie, and implanted it in her uterus.

The 22-year lapse between storage in April 1986 and conception in June 2008 is a world record, according to specialists at the US fertility clinic who carried out the procedure.

“From my life being saved to being able to create a life, words just can’t describe where we are now,” said Mr Biblis, of Charlotte, North Carolina, who has been free of leukaemia since the age of 18.

“I’ve got this bundle of joy to appreciate. It’s truly a miracle,” he told ABC News.

The case is being hailed as an illustration of how far infertility treatment has advanced in the past two decades and proof that sperm can remain viable for decades if they are preserved in liquid nitrogen. The previous record was 21 years.

The procedure used to create Stella did not even exist when Mr Biblis gave the sample in 1986 during his six-year struggle against leukaemia.

“I was trying to get through high school and, you know, living one day at a time just hoping I was going to make it,” he said.

It was not until 1992 that the method of intracytoplasmic sperm injection (ICSI) – by which scientists carefully select a healthy sperm cell and insert it into an egg in the laboratory – was successfully pioneered.

The technique carries an increased chance of conception beyond conventional IVF procedures, in which sperm and eggs are mixed in the laboratory to fertilise spontaneously, and was used because only 35 per cent of Mr Biblis’s sperm cells were deemed viable after thawing.

Doctors selected the best of the remaining cells and injected them into ten eggs harvested from Mrs Biblis, of which seven fertilised successfully in the laboratory. Two of the embryos were implanted, though only one survived, and five remain in storage, allowing the couple the option of having more children.

“They achieved pregnancy on their first cycle of ICSI . . . We had every reason to expect a perfect baby but are thrilled nonetheless,” said Richard Wing, a fertility specialist and founder of Reproductive Endocrinology Associates of Charlotte: “I had no concern about working with old sperm – bovine and equine sperm has been frozen for long periods and has resulted in successful gestations.”

Cigarette smoking and tobacco use result in significantly more deaths each year than illegal drugs and AIDS. Smoking damages nearly every organ in the human body, is linked to at least 15 different cancers, and accounts for some 30% of all cancer deaths. And it costs billions of dollars each year in health-related expenses. Yet one in five Americans still lights up.

In 1982, the United States Surgeon General’s Report stated, “Cigarette smoking is the major single cause of cancer mortality in the United States.” This statement is as true today as it was in 1982. Smoking is responsible for nearly 1 in 5 deaths in the United States. Because cigarette smoking and tobacco use are acquired behaviors, activities that people choose to do, it is the most preventable cause of premature death in our society.

According to the Centers for Disease Control and Prevention (CDC), 44.5 million U.S. adults were current smokers in 2006 (the most recent year for which numbers are available). This number represents 20.8% of all adults (23.9% of men and 18.0% of women), or more than 1 out of 5 people.

Below are tips to quit smoking from Everydaychoices.Org, a collaboration between American Cancer Society, American Diabetes Association and American Heart Association.

Tips to Help You Quit

About 48 million Americans smoke cigarettes, but most smokers are either actively trying to quit or want to quit. Since 1965, more than 40 percent of all adults who have ever smoked have quit. You can be among that group too. Here are some helpful hints to get you started.

* List all the reasons you want to quit smoking (e.g., better health, save money, play with children/grandchildren) and read them several times a day.
* Ask your physician or pharmacist if you are a good candidate for using a nicotine replacement (e.g., patch, gum, lozenge) or other medication to help you quit. Consider smoking cessation counseling or support groups.
* Choose a quit date – it could be a significant date (e.g., a birthday or anniversary) or just a date about two to three weeks away. Before your quit date, get rid of all smoking-related materials in your home and work area (e.g., ashtrays, matches, cigarette packages).
* Stay busy! Go to the movies, exercise, take long walks, go bike riding.
* Find healthy substitutes for smoking. Carry sugarless gum or artificially sweetened mints. Munch carrots or celery sticks. Try doing crafts or other things with your hands.
* Let your friends, family, and co-workers know that you plan to quit – and ask for their help and support. And if your spouse or partner smokes, ask them to help you out by not smoking around you for the first couple of months after you quit.

If you slip up, don’t punish or blame yourself – simply try again and ask for help.

Fertility is an important quality of life issue for cancer patients of child-bearing age. Some types of cancer treatments (especially certain forms of chemotherapy and with radiation to the pelvis) can impair fertility. Such patients may benefit from referral to a reproduction specialist before they start their cancer treatment. Unfortunately, the majority of studies show that less than half of eligible cancer patients actually receive this information and thus are rendered infertile (sterile) for the remainder of their life. One can understand that at the onset of a cancer diagnosis that the primary focus is on a life-threatening situation. The dilemma comes later, when patients are actually enjoying a long-term life and these survivorship issues then become paramount.

Many cancer patients interested in fertility preservation prefer to have biological children rather than adopt or use third party reproduction. Studies of cancer patients report that loss of fertility is of immense concern that can cause great distress. The American Society of Clinical Oncology (ASCO) and the American Society for Reproductive Medicine (ASRM) have developed guidelines on this issue. These guidelines suggest that oncologists “should address the possibility of infertility with patients treated during their reproductive years and be prepared to discuss possible fertility preservation options or refer appropriate and interested patients to reproductive specialists”.  Addressing this issue with patients is an important aspect of quality cancer care.

With advances in reproductive biology and technology, fertility preservation methods are now available that allow some cancer patients to preserve fertility before treatment. Sperm cryopreservation is the primary option available to males and has high likelihood of success. For women, fertility preservation issues are more complex. Embryo cryopreservation is the most established option, which involves fertilization of egg with sperm through in vitro fertilization. Egg freezing, an experimental option, is typically used in women who do not have a partner or do not wish to use a donor sperm.

In a recent article published in the Journal of Clinical Oncology (JCO, volume 27: [page 5952, 2009), Dr. Guinn and colleagues conducted a national study about fertility preservation and physician attitudes. Forty-seven percent of 516 physician respondents routinely refer their cancer patients of child-bearing age to a reproductive specialist. Referrals were more likely when patients routinely asked about fertility preservation, and also when among female physicians and those with a favorable attitude towards fertility preservation. On the other hand, half of the physicians are not referring patients.

Not all drugs cause problems with ovulation or sperm viability… others do. Discuss it with your doctor. Remember that radiation to the pelvis may also result in sterility (but not if radiation is given to other parts of the body). If you are interested in pursuing this, ask your doctor to refer you to a reproductive specialist. Studies have found that banking sperm or embryos was viewed as a positive factor to help patients cope with their disease, even if they never used them in the future.

The most important message for those of you reading this blog who are of child-bearing age… or who are a partner or care-giver of a cancer patient of child-bearing age: please discuss fertility options with your oncologist!

For more information, go to our companion website www.patientresource.net.

This is one of the best stories on a prostate cancer journey that I have seen on video since I posted a blog on Rudy Giuliani.  These two political icons had access to a massive amount of information about their prostate treatment options….and then made opposite decisions: Senator  John Kerry chose surgery , while Mayor  Rudy Giuliani chose radiation seeds and external beam radiation.

Taken together, their compelling stories illustrate that there are many options in prostate cancer (as there are in breast cancer) and that men with prostate cancer need to be informed about all of their options, including the benefits, risks, and side effects of surgery on the one hand, or radiation therapy on the other. While the best evidence is that these two treatment approached have the same survival outcomes, the side effects and toxicities  are quite different. In the end, many men with prostate cancer have a major role in deciding which treatment is best for them.

Speaking at a LIVESTRONG Conference (Lance Armstrong Foundation ), Senator Kerry began his story by describing his personal experience with the tragedy of his father who died of prostate cancer. In his situation, Sen. Kerry had a PSA of 2.2 that rose to 2.7 based upon his annual physical exam. His wife, Teresa Hines Kerry told him, “That tick of 0.5 is significant and you should go back to your doctor”.  (I might have ignored this small elevation too! Husbands: listen to your wives…it may save your life!).  He then described the process of getting a rectal ultrasound, prostate biopsies, and communicating the “bad news” to his family.  He pointed out that “relationships change” when you carry the diagnosis of cancer.

How did Sen. Kerry approach this issue as a newly diagnosed prostate cancer patient? First, he read everything he could about prostate cancer, on the web and also from Dr Patrick Walsh’s book on prostate cancer. Next , he talked to many doctors of different specialties as well as other prostate cancer survivors about their experience. After reviewing all of his options, he chose surgery (at Memorial Sloan Kettering Cancer Center), with a prostatectomy and reported that he did very well after his surgery.

I have posted blogs about several famous people with prostate cancer, including Rudy Giuliani, Don Imus, Arnold Palmer, and Sen. Chris Dodd. Note that all of these stories include the importance of a physical exam (i.e. a rectal exam) and a screening PSA which was the method of first detecting the prostate cancer for all of these gentlemen. They also describe having a PSA as a monitor for recurrence.

The use of screening PSA tests is controversial. And the American Cancer Society has changed its recommendation to downgrade its value as a screening test at a national level (*see their policy statement below). Nevertheless, many men (including me) have an annual PSA because we believe in its value.  For more information about this see my blog “To Screen or Not To Screen: Detecting Prostate Cancer“.

In the circumstance with Sen. Kerry, cancer hit his family hard, since his wife had breast cancer (See my blog on Teresa Heinz Kerry) and his father died of prostate cancer.  Educate yourself so you’re prepared if your family faces similar circumstances. Sen. Kerry read Dr. Patrick Walsh’s Guide to Surviving Prostate Cancer, which I would also highly recommend. Also for more information about prostate cancer, see our companion website: www.patientresource.net.

The American Cancer Society’s position on PSA screening:

“The American Cancer Society (ACS) does not support routine testing for prostate cancer at this time. ACS does believe that health care professionals should discuss the potential benefits and limitations of prostate cancer early detection testing with men before any testing begins. This discussion should include an offer for testing with the prostate-specific antigen (PSA) blood test and digital rectal exam (DRE) yearly, beginning at age 50, to men who are at average risk of prostate cancer and have at least a 10-year life expectancy. Following this discussion, those men who favor testing should be tested. Men should actively take part in this decision by learning about prostate cancer and the pros and cons of early detection and treatment of prostate cancer.

This discussion should take place starting at age 45 for men at high risk of developing prostate cancer. This includes African American men and men who have a first-degree relative (father, brother, or son) diagnosed with prostate cancer at an early age (younger than age 65). This discussion should take place at age 40 for men at even higher risk (those with several first-degree relatives who had prostate cancer at an early age). If, after this discussion, a man asks his health care professional to make the decision for him, he should be tested (unless there is a specific reason not to test). ”

For more information, go to their website at www.cancer.org.

Yet another well-known politician has announced that he has prostate cancer. Senator Chris Dodd (Democrat, Connecticut) described his experience that began with a rising PSA (Prostate-Specific Antigen; a  blood test). This screening test plus a physical exam first detected what is apparently a very early stage of prostate cancer. He then had a biopsy which showed prostate cancer.

Like so many other stories, Senator Dodd described  “getting a lot of information” from others, including fellow United States Senators who previously were treated with prostate cancer. He decided to have prostate surgery at Memorial Sloan Kettering Cancer Center. His story is very similar to that of Sen. John Kerry.

As Sen. Dodd described, his type of prostate cancer is very common and may affect one in six men, depending upon how long they live.  It can be a very manageable cancer with a good prognosis if it is detected early. That’s why I agree with those who recommend an annual PSA blood test as part of their annual physical exam (including a rectal exam). Our readers should know that the American Cancer Society has a more reserved recommendation about the use of PSA for prostate cancer screening (see below for details from the American Cancer Society).

Sen. Dodd joins a number of other famous people with prostate cancer with whom I have blogged in the past. This includes Mayor Rudy Giuliani, Don Imus, Arnold Palmer, and Sen. John Kerry.

For more information about prostate cancer surgery, go to our blogs about this subject. For more print information, go to our companion website www.patientresource.net.

American Cancer Society statement on PSA screening:

The American Cancer Society (ACS) does not support routine testing for prostate cancer at this time. ACS does believe that health care professionals should discuss the potential benefits and limitations of prostate cancer early detection testing with men before any testing begins. This discussion should include an offer for testing with the prostate-specific antigen (PSA) blood test and digital rectal exam (DRE) yearly, beginning at age 50, to men who are at average risk of prostate cancer and have at least a 10-year life expectancy. Following this discussion, those men who favor testing should be tested. Men should actively take part in this decision by learning about prostate cancer and the pros and cons of early detection and treatment of prostate cancer.

This discussion should take place starting at age 45 for men at high risk of developing prostate cancer. This includes African American men and men who have a first-degree relative (father, brother, or son) diagnosed with prostate cancer at an early age (younger than age 65). This discussion should take place at age 40 for men at even higher risk (those with several first-degree relatives who had prostate cancer at an early age).

If, after this discussion, a man asks his health care professional to make the decision for him, he should be tested (unless there is a specific reason not to test).

For more information, go to their website at www.cancer.org