Sunday, September 05, 2010

Living with Pain

I am EXTREMELY lucky in that my life with NF has been for the most part pain free (of course as expected there is a short period of pain after surgeries and I had some minor neuralgia in the extremeties after radiosurgery and a 2 week episode of severe facial trigeminal neuralgia before my first brain surgery).

I have come across many reports however of both people with NF1 and NF2 experiencing chronic pain (it seems more common among NF1).

While I cannot give advice on how to deal with it, I can tell you that a few people have personally told me that either they experience relief or a lessening of symptoms following acupuncture treatment.

Recently, an NF2 mother who is a pretty strong advocate for our cause, posted a recent article about how acupuncture has proven useful in lessening or treating symptoms or side effects of cancer treatment.

Here is the direct link to the article I have included below:

Acupuncture Effective in Treating Side Effects

Acupuncture Helps Ease Side Effects and Symptoms of Some Cancers
Released: 9/3/2010 8:00 AM EDT
Source: Memorial Sloan-Kettering Cancer Center

Newswise — Recent studies have shown that acupuncture can help control a number of symptoms and side effects -- such as pain, fatigue, dry mouth, nausea, and vomiting -- associated with a variety of cancers and their treatments. Experts from Memorial Sloan-Kettering Cancer Center's Integrative Medicine Service, who have either conducted or reviewed many of those studies, recommend that cancer patients interested in acupuncture seek a certified or licensed acupuncturist who has training or past experience working with individuals with cancer.


Acupuncture treatment, a two-thousand-year-old component of traditional Chinese medicine, involves stimulating one or more predetermined points on the body, called acupoints, with needles for therapeutic effect. Heat, pressure, or electricity may be added to intensify the effect of the acupuncture needles. According to traditional Chinese medicine beliefs, energy flows throughout the body along channels, or "meridians." Specific acupoints are stimulated to increase energy flow along various channels throughout the body to a particular tissue, organ, or organ system.

Treatment is usually customized to treat each patient's particular symptoms. A typical acupuncture session, which takes about 30 minutes, involves the insertion of ten to 20 very thin, stainless steel needles. Most patients receiving acupuncture experience no pain from the insertion of the needles, and there is minimal risk of injury from acupuncture treatments, with reports of fewer than one adverse event in more than 10,000 treatments.

According to the Centers for Disease Control and Prevention, each year more than eight million Americans use acupuncture to treat different ailments. Studies have demonstrated its effectiveness in the treatment of a host of non-cancer-related health issues, such as back pain, chronic headaches, osteoarthritis, high blood pressure, infertility, and hot flashes. Its use for the treatment of symptoms and side effects of a variety of cancers has recently been investigated in a number of studies and reviews.

Acupuncture for Head and Neck Cancer

For many of the more than 100,000 individuals diagnosed with head and neck cancer each year in the United States, the cancer spreads from its primary location to lymph nodes in the neck. When this occurs, nerves known as spinal accessory nerves must also be removed along with the affected lymph node, which can lead to shoulder function problems.

A study conducted by Memorial Sloan-Kettering investigators and published in the April 2010 issue of the Journal of Clinical Oncology sought to determine if acupuncture could reduce pain and dysfunction in individuals with cancer of the head or neck who had received a surgical dissection of lymph nodes in their neck. The study evaluated 58 patients who were suffering from chronic pain or dysfunction as a result of neck dissection. For four weeks, study participants were randomly assigned into one of two groups: those receiving weekly acupuncture sessions and those receiving standard care, which included physical therapy, as well as pain and antiinflammatory medication.

The study found that individuals in the group receiving acupuncture experienced significant reductions in pain and dysfunction when compared with individuals receiving standard care. Individuals in the acupuncture group also reported significant improvement in xerostomia, a condition in which patients receiving adjuvant radiation therapy experience extreme dry mouth.

Acupuncture and Leukemia

Many people with leukemia try additional treatments outside their standard care, hoping to manage symptoms and, in some cases, to improve their treatment outcome. In a commentary on the subject in the September 2009 issue of Expert Reviews Anticancer Therapies, Memorial Sloan-Kettering investigators examined the results from available studies testing the effectiveness of such approaches. They report that among the complementary therapies used to decrease symptoms and side effects, acupuncture is very beneficial for symptom management.

For some leukemia patients, cancer chemotherapy drugs can damage the peripheral nervous system (a condition known as peripheral neuropathy), causing pain, numbness, tingling, swelling, and muscle weakness in various parts of the body, especially in the hands and feet. In some cases, doctors must reduce the chemotherapy dose in order to prevent the neuropathy from progressing further. Acupuncture has been found to decrease these difficult neuropathy symptoms, allowing the maximum amount of chemotherapy to be used, thereby increasing the patient's chance for a successful outcome.

Acupuncture is also known to reduce the effects of nausea caused by a variety of chemotherapy agents used to treat leukemia. Research has shown that timing the acupuncture sessions one to two days before chemotherapy infusion and continued weekly throughout the chemotherapy regimen produces the best results. In addition, the authors note that acupuncture has been proven safe for patients receiving the anticoagulation drugs Coumadin® or heparin during their leukemia treatment.

The review's authors note that, in general, it is important to distinguish between complementary therapies -- including acupuncture, self-hypnosis, yoga, meditation, and therapeutic massage -- and alternative therapies, which are unproven and ineffective, and may interfere with mainstream cancer treatments.

Acupuncture and Breast Cancer

A significant number of breast cancers have receptors for the hormone estrogen. These receptor-positive breast tumors are more likely to respond to therapy with anti-estrogen medications, which take advantage of the cancer cells' dependence on hormones for growth. Women with these tumors are often given treatment that blocks the production of estrogen, which is meant to slow the growth of the tumor. These treatments can induce early menopause, leading to symptoms such as hot flashes, fatigue, and excessive sweating. Because these women cannot receive hormone replacement therapy, which is usually used to treat such symptoms, doctors typically prescribe antidepressants such as the drug venlafaxine (Effexor).

A recent study examined whether acupuncture reduces some of these common side effects and produces fewer adverse effects than antidepressants. In the study, published in the February 2010 issue of the Journal of Clinical Oncology, 50 women with hormone-receptor positive breast cancer were assigned into one of two groups. The first group received 12 weeks of acupuncture, and the second group received treatment with venlafaxine.

Both groups experienced significant decreases in hot flashes, depressive symptoms, and other quality-of-life symptoms. However, women in the group taking venlafaxine began to re-experience their symptoms about two weeks after stopping drug therapy. In comparison, it took 15 weeks for the symptoms to return for women in the group receiving acupuncture. In addition, women in the acupuncture group reported no significant side effects during treatment, while the group taking venlafaxine experienced 18 incidences of adverse effects, including nausea, dry mouth, dizziness, and anxiety.

Finding the Right Acupuncturist for Cancer Patients

The National Certification Commission for Acupuncture and Oriental Medicine (NCCAOM) provides a list of practitioners who are nationally certified in Oriental medicine, acupuncture, Chinese herbology, and Asian bodywork therapy. The Integrative Medicine Service at Memorial Sloan-Kettering Cancer Center has trained thousands of acupuncturists from across the United States and many other countries. Its previously face-to-face, three-day courses were replaced in April 2010 with Internet-based courses to facilitate international requests. The Integrative Medicine Service also maintains a list of cancer-trained acupuncturists. Our integrative medicine specialists stress the importance of using an acupuncturist who is NCCAOM certified or licensed and who has training in working with cancer patients

Saturday, September 04, 2010

Climbing Kili to Kill Tumors

Taken from my seasonal blog for the Gold's Gym Be Golden big climb team blog -

Kili Climb to Kill Tumors

STAY TUNED!!!!!!!!
Keep checking in for updates on our team.

10-10-10 Kili Climb to Kill Tumors

In October 2010, 6 members of the Gold's Gym big climb team will tackle a REAL "big climb" as they pursue to summit the "Roof of Africa" on Mt. Kilimanjaro. Follow team captain Rebecca Dufek and Gold's Gym Big Climb team members Redmond gym personal trainer Merrie Vieco, Pedro Vieco, Chris Pierard, Shane Pierard, and Harley Dufek as they aim to reach the top on 10-10-10. The date is not only of historical significance but is also the 1 year anniversary of Skip's passing and 10 years after the dream of climbing Kilimanjaro for NF2 awareness was conceived while Rebecca and Harley were on their honeymoon. Skip will definitely be there with them in spirit!!!!

Like her friend Skip, Rebecca, her grandfather, and a 3rd cousin were diagnosed with various forms of blood cancer. Rebecca is the only remaining survivor, now surpassing 17 years of remission for Hodgkin's Lymphoma - the same cancer that Rebecca's inspiration and Everest/7 summit climber Sean Swarner was stricken with as a child. (visit to read more about Sean's story)

Although Rebecca was fortunate to sustain a long remission from blood cancer, her life has not remained tumor free. As a matter of fact, it has been very far from tumor free as numerous benign yet slowly growing tumors were found within her brain and spine as the result of a genetic disorder known as Neurofibromatosis, more specifically type 2 (NF2) in Rebecca's case where tumors primarily occupy the central nervous system.

To date, Rebecca has undergone one radiosurgery and two brain surgeries for 6 of the multiple brain tumors. The side effects incurred have been complete deafness, loss of balance function, several vision impairments, and facial paralysis affecting the ability to eat, drink, smile, kiss, and keep the right eye protected from drying out.

As with cancer, Rebecca has known several people who have died and lost loved ones from both NF1 and NF2. While Rebecca and her team embark on this dangerous and challenging adventure, the Seattle Producer Cesari Direct will be making a movie documentary of their trek called "The Perseverence Factor" with anticipated release in 2012. Through the movie, Rebecca and Harley's vision is to bring awareness to the world of NF, cancer, deafness, disability, challenged athletes, and perseverence as well as to inspire.

To learn more of this upcoming adventure and to donate, please visit:

To Donate

Help Stop NF2 Foundation

Climbing Itinerary

Details on how to join the team for the Seattle Big Climb 2011 coming in November.