Last year was certainly busy but looking back it seemed pretty uneventful in regards to Travis’ health.  Don’t get me wrong, I am more than thankful that he is defeating his tumor but I feel somewhat removed from the caregiver role.  I am not sure that I will ever “retire” from being a caregiver but Travis is significantly more independent than he was a couple of years ago.  He is now in school full time and is working full time.  He still lives with chronic pain in addition to other permanent adverse effects stemming from his tumors and the surgeries. However, over the last 12 months or so he has really learned how to manage his conditions in a way that allow him to live a more typical lifestyle. This does not meant that he does not have bad days; he still does from time to time.  But he has more good days than bad.

This year we went on our first major vacation as a couple. Hawaii.  I was nervous about going because I was worried he might not be able to participate in the physical activities that Hawaii is known for.  He ended enjoying the ocean and snorkeling so much that within a month after we returned home he became a certified open water scuba diver another month later he became a certified advanced open water scuba diver.

This July 13^th will mark the 4 year anniversary of Travis’ second (and last) surgery to remove his brain tumor.  I doubt that when he was laying in the hospital trying to recover from surgery that he ever expected that he would be well enough to be doing everything that he is doing now.

As I reflect on the last 6 years I realize that the old saying, “no news is good news” pretty much sums up why this website had been on hiatus.  I never thought that life could or would go back to normal for us but I was obviously wrong.  I hope that this post gives you strength and encouragement that things can get better.  Please do not ever hesitate to contact me regardless of the length of time in between my posts.  I receive inquiries and comments from many people with many different stories and I am always willing to listen and do my best to help.

Trina

Much has changed in our lives over that last two years. Travis has retired from the Marine Corps. We moved out of our old apartment into the one that we are living in now. Travis had CyberKnife radiation. Victoria started middle school. We received AMAZING NEWS that Travis’ pesky Schwannoma tumor succumbed to Dr. Adler’s treatment. NO MORE TUMOR!!!! I started back at work and went back to college.

Travis accepted his dream job at Northrop Grumman. He entered through a wonderful program called Operation Impact. Since retiring from the Marine Corps. Travis has been seeing new doctors. He struggled through Methadone withdrawal and is now 100% METHADONE FREE. He has a prescription for Vicodin to use for breakthrough pain but he has not taken any since June 30th. He has come a long way from his daily doses of 3000mg of Neurontin and 10mg of Methadone.

Our offer was accepted on our first home. (We are in escrow right now.)

Travis came down with Diverticulitis and then suffered from a secondary infection as a result of the antibiotics given to him to treat the Diverticulitis.

So much has happened over the last two years.  Life sure has not been easy but things seem to be turning around.  We are learning to see the glass as half full rather than half empty.  I expect that we will continue to face hurdles but what I have learned is there is nothing that Travis and I cannot accomplish if we put our hearts into it.

In my opinion, this is proof that CyberKnife radiation works.  It is the best treatment for a schwannoma brain tumor.  If you have a tumor or know somebody who does then ask the  doctor is CyberKnife would work for you.

I want to write more but I donated blood today and my finger is really sore from the prick.  I will try and write more soon.

You can’t ask for anymore than that.  I also got excited thinking that Travis was one of the patients included in the study.  We have not confirmed that Travis was one of the individuals discussed in the article but he will be asking his surgeon tomorrow on his visit.

I will paste the article below and a link to where I found it.

http://journals.lww.com/neurosurgery/Abstract/2009/02001/Cyberknife_Radiosurgery_for_Trigeminal_Schwannomas.4.aspx

Cyberknife Radiosurgery for Trigeminal Schwannomas
Sakamoto, Gordon T.; Borchers, D. John III; Xiao, Furen; Yang, Hee-Jin; Chang, Steven D.; Adler, John R. Jr.
Abstract
OBJECTIVE: Trigeminal schwannomas (TS) are benign tumors that are managed by surgical resection and/or stereotactic radiosurgery. Most radiosurgical series report results using the gamma knife. The CyberKnife (Accuray, Inc., Sunnyvale, CA) is a frameless, robotic stereotactic radiosurgical system. In this series, we report our experience using the CyberKnife in the treatment of TS.
METHODS: We retrospectively reviewed the medical records and diagnostic imaging in 13 consecutive patients with TS who were treated with the CyberKnife from 2003 to 2007. Seven patients had a previous surgical resection. The mean tumor volume was 6.3 mL (range, 0.39-19.98 mL), and the mean marginal dose was 18.5 Gy. Six of the tumors were treated in a single session. The mean clinical follow-up period was 21.8 months (range, 7-53 months).
RESULTS: In this series, the tumor control rate was 100%. The average reduction in tumor volume was 45% (range, 14-98%). A modest improvement in facial pain was noted in 4 of the 6 patients who presented with this symptom. One patient had improvement in facial numbness, and another had improvement in pretreatment headaches. One patient developed jaw weakness and facial dysesthesia, and another patient developed asymptomatic radiation necrosis.
CONCLUSION: Although the length of follow-up is limited, we report our initial experience with CyberKnife treatment of TS. Our results demonstrate tumor control rates and clinical outcomes that parallel those of previous reports using gamma knife radiosurgery; however, long-term follow-up studies are needed.

We got a call from Travis’s neurosurgeon.  He explained to us that the reason two treatments are needed is because the residual tumor is very close to Travis’s optic nerve.  To be safe the radiation should be broken up into two treatments.  Travis explained to his neurosurgeon that we could not really come back for the second treatment and the neurosurgeon said that having one treatment on Friday morning and the second treatment on Friday evening would work out fine.

Not an hour later we got a call back from the neurosurgeon.  He asked Travis is he could come in”now” for the first CyberKinfe radiation treatment.  We told him that we would be there in 45 minutes or less, we were still in our pajamas when he called.  So we rushed to get ready.  I was excited because I want this tumor to be done with.  Travis started getting really nervous, even more nervous than he was for his surgeries.  I thought that this was odd.  He told me it was because he did not know what to expect.  On Tuesday we were given a DVD to watch that explained the whole CyberKnife process.  We had not gotten around to watching it yet. I suggested that Travis take one of his Ativans to help him relax.

By the time that we got to the hospital the Ativan had kicked in.  Travis was much more relaxed.  Travis was told to lie on the bed of the CyberKnife machine and they fitted the mask over his face.  He was given instructions to stay as still as possible and that if he needed to move (to sneeze, cough, or because he back got sore) to raise his hand and they would stop the treatment and help him.  I took a quick picture of Travis and then let the machine do it’s magic.

About an hour later Travis walked into the waiting room.  He looked like the same guy that I left on the table.  He said that he hardly remembered the experience.  He dozed off for the entire hour but was woken once when a technician offered to put on some music for him.
 

The first radiation treatment has been completed.  Now we have one more tomorrow.  I will try and get a couple more pictures tomorrow.

The IV went in smoothly and Travis waited on the gurney for his turn.  They wheeled him in a room that had the CT machine.  They positioned him on the bed and made the custom mask which will be used to keep his head in place when he gets his radiation on Friday.  When they attempted to administer the contract for the CT Scan there were some complication with the IV.  Luckily the Ativan was working and Travis was pretty calm.  The CT Scan took less than 5 minutes.  After the scan they wheeled as back to a waiting area so that we could wait for Travis’s MRI. 

Dr. Adler (Travis’s neurosurgeon) came by to tell us that there was a “slight problem”.  They were not able to see Travis’s tumor on the CT Scan.  What a sigh of relief.  This does not guarantee that the tumor is gone forever.  What it does tell us is that it did not quickly grow back.  Dr. Adler said that he knew that he got a lot of the tumor out but it appears that the residual is smaller than he expected it to be. 

I will take this great news as an early Christmas gift.  Even though the appointment yesterday went well there was still a little bit of doubt in my mind.  The picture (CT/MRI) does not lie.  There was a chance that the tumor could have grown back like last time.  The fact that the tumor was not seen on today’s scan is a great sign. 

As we waited in the Radiation Therapy unit we had interaction with a lot of different doctors, nurses and Stanford associates.  It is rare when you come across ONE caring person in a day.  In this unit and the entire hospital EVERYONE here is so caring.  It means so much to be in such a comforting environment when you are dealing with medical hurdles.  The majority of life you are a number everywhere you go.  In a classroom, at the bank, at a restaurant, but here, they really make you feel like they care about you. 

Travis went on to have an MRI.  After the MRI we were instructed to return to the Radiation Therapy Unit.  When we returned we were told that they would call us to confirm the radiation appointment for Friday.  After a long day we were ready to go back to the hotel so that we could rest.

I will update again soon.

©Family Caregiver Alliance

http://www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=568  

Definitions

A brain tumor is a collection of damaged cells that multiply out of control within the brain. Also called a neoplasm, growth, mass or lesion, a brain tumor is classified as either primary or secondary (metastatic), and can be benign or malignant.

• Primary brain tumors develop and generally remain in the brain.
•  Secondary brain tumors, or metastatic brain tumors, are cancers that develop elsewhere in the body and spread to the brain. The most common cancers that spread to the brain are lung and breast cancers.
• Malignant brain tumors grow rapidly and invade other cells.
• Benign brain tumors generally do not grow rapidly. However, even benign tumors can be life-threatening.

While diagnosis of a brain tumor is difficult for families, there are also many reasons to be hopeful. Substantial progress had been made in the medical understanding of cancers and more effective treatment of brain tumors. Many of these treatment options are discussed below.

Facts

According to the North American Brain Tumor Coalition, an estimated 40,000 new cases of primary brain tumors are diagnosed in the U.S. each year. Some research indicates that the number of primary brain tumors is rising, particularly in the elderly. Primary malignant brain tumors represent 2.4 percent of all deaths due to cancer in the U.S. However, nearly half of all primary brain tumors are benign and can be treated successfully.

An additional 150,000 individuals are diagnosed with metastatic brain tumors each year. The frequency of metastatic brain tumors appears to be increasing: improvements in treating primary cancers elsewhere in the body allow people to live longer, but stray cancer cells can find their way to the brain.

There are more than 100 types of brain tumors. Certain types of primary brain tumors most commonly occur in children, while others occur more frequently in adults. Adult brain tumors typically appear between the ages of 40 and 60 years, and occur slightly more often in men.

Symptoms

As tumor cells multiply within the brain, they can press against, irritate and/or destroy normal brain tissue. As a result, brain tumors may cause symptoms such as:

• headaches
• seizures
• speech problems
• weakness
• bad vision
• pain or numbness
• movement problems
• paralysis
• nausea or vomiting

Brain tumors may cause feelings of tiredness or fatigue. In addition, brain tumors can cause problems with memory, reading and talking. However, not everyone gets every symptom. About one-third of people with brain tumors have no symptoms at all.

Diagnosing Brain Tumors

Brain tumors may be diagnosed and evaluated using one or more of several different types of procedures:

• MRI – Magnetic Resonance Imaging
• CT – Computerized Tomography
• PET – Positron Emission Tomography 
• Biopsy

MRI, CT, and PET scanning are all ways to take pictures of the inside of the body. They are all painless, and do not require surgery. These procedures are discussed in more detail below.

MRI – Magnetic Resonance Imaging

MRIs use an extremely strong magnet to produce images. With contrast-enhanced MRI, the patient is first injected with a dye that makes normal and tumor tissue display differently. If your loved one requires an MRI, be sure to tell your doctor of any history of allergies or drug reactions.

Because the MRI uses a magnet, no metal can be brought into the room while the MRI is taking place. Patients who have pacemakers and/or metal implants cannot have an MRI. People who suffer from claustrophobia (the fear of being in tight spaces) may have difficulty dealing with the enclosed space of the MRI tube. There are a few possible solutions to this problem. If the imaging site allows it, a friend or relative can be there during the MRI. Another option, if the doctor agrees that it is appropriate, would be to take a tranquilizing medication before the scan. A third option would be to have the scan in a newer “open” MRI, which does not use a tube.

CT – Computerized Tomography

A CT scan may be used for patients who cannot undergo MRI because they have pacemakers, metal implants, allergies or claustrophobia.

CT scan machines take multiple x-rays of small areas of the brain from different angles. The computer then combines the scans to make a detailed, three-dimensional image.

Because iodine may be used as a contrast agent to enhance the image, you should tell the healthcare provider if your loved one has any allergies, diabetes, asthma, a heart condition, kidney problems or thyroid conditions.

Side effects from iodine use are infrequent. Your loved one may experience a brief warm or hot “flushed” sensation during the actual injection of the iodine and a brief “metallic” taste in the mouth. If your loved one experiences itching over various parts of their body, tell the healthcare provider so that they can prescribe medication to treat this response. Serious reactions are rare, and may include breathing difficulty, swelling of the throat, or swelling of other parts of the body. Any of these reactions should be reported to the healthcare provider immediately.

PET – Positron Emission Tomography Scan

PET scans are sometimes used in addition to MRI or CT to evaluate brain tumors. After receiving treatment for a brain tumor, PET scans can also be used to detect new tumor growth and scar tissue or any necrosis (cells killed by radiation).

Biopsy

Under certain circumstances, a doctor may need to take a biopsy. This means that a small piece of the tumor tissue may be surgically removed to be studied.

Treating Brain Tumors

There is a range of options to be considered in the treatment of brain tumors. Your healthcare team will design a plan to help treat the tumor as well as to relieve any symptoms the brain tumor may be causing.

The following healthcare professionals may be part of the treatment team:

• Neurologist: a doctor who specializes in the management of patients with diseases of the brain and other parts of the nervous system.
• Neurosurgeon (or brain surgeon): a doctor who specializes in surgery of the brain and the rest of the nervous system.
• Neurooncologist: a doctor who specializes in the management of patients with brain tumors and other nervous system tumors.
• Neuropsychologist: a psychologist who specializes in how the brain works and the impact that damage to the brain has on the patient.
• Radiation Oncologist: a doctor who specializes in the management of cancer patients and treats them with radiation therapy.
• Physical therapist: a healthcare provider who teaches and guides the patient through various exercises to prevent pain and restore function or help the patient to adapt to new physical limits.
• Speech-language pathologist or speech therapist: a healthcare provider who specializes in the treatment of communication and swallowing problems.
• Social worker: a healthcare provider who provides a wide range of services directly to persons with cancer and their families including counseling, support and education.

Surgery

The first treatment of choice, depending on the location and size of the tumor, is surgical removal of as much of the lesion as possible (also called resection). Surgery can also reduce symptoms caused by swelling in the skull, thus reducing the need for medication. Improvement in surgical techniques in recent years has made surgery much safer; however, surgery always has risks that you and your loved one should discuss with the oncologist and neurosurgeon. Surgery may be followed by radiotherapy (see below) to help prevent the formation of new tumors. In deciding whether surgery is right for your loved one, your doctor will consider the size, location and type of the tumor, overall health, and medical history.

Radiation Therapy or Radiotherapy

Patients with more than one tumor, or with one tumor that is not readily accessible, are typically treated with radiation therapy. Radiation Therapy is the use of painless x-rays directed to damage or destroy tumor cells. Radiation may be used after surgery to prevent the tumor from coming back (recurrence), or to destroy tumor tissue that could not be completely removed. In cases where surgery is not an option, radiotherapy may be used instead of surgery to destroy tumor tissue or to relieve symptoms. Radiation is painless, and is typically given in 15-minute visits over several weeks. Radiation has the potential to cause various side effects, depending on your treatment plan. Ask the radiation oncologist about potential side effects of treatment.

Different types of radiotherapy are described below.

• Whole Brain Radiation Therapy (WBRT) delivers an even dose of radiation to the entire brain. Whole brain radiotherapy is the preferred treatment for brain tumors, because it can treat small, undetectable tumors that may be developing in different areas of the brain. The advantages of whole brain radiotherapy are that it can treat large and small tumors, many tumors at the same time, and tumors deep in the brain that cannot be removed through surgery. Whole brain radiotherapy is often used to reduce the risk of tumor recurrence after surgery. Side effects of whole brain radiotherapy may include nausea, vomiting, headache, fever, and temporary worsening of neurological symptoms such as memory loss and difficulty thinking. Discuss any concerns you and your loved one might have about side effects with the radiation oncologist.
• Stereotactic Radiosurgeryis a more targeted form of radiation therapy, and is not actually surgery at all. It is called “radiosurgery” because it is so precise and focused. Other names you may hear for stereotactic radiosurgery include Gamma Knife™, X-knife™ and Cyber-knife™. This form of therapy delivers a higher dose of radiation to a small tumor (usually 1.5 inches or less in diameter) in a single treatment session. Because this form of radiation targets the tumor more precisely, it is less likely to hurt healthy tissue. Stereotactic radiosurgery only treats tumors that can be detected on MRI or CT scans. Possible side effects of radiosurgery include swelling, neurological problems, and build up of dead tumor cells in the brain that may need to be removed by surgery. Ask the doctor about side effects.
• Brachytherapyalso called interstitial radiation therapy, is another form of targeted radiation for patients with tumors that are not responsive to other types of treatment. In contrast to external radiation, brachytherapy delivers radiation from inside the body through implanted radioactive pellets or liquid radiation balloons. The implant may be removed after a few days or longer. Surgery may be needed after brachytherapy to remove dead tumor cells. Brachytherapy delivers radiation directly to the local tumor site (i.e., rather than whole brain radiation which is more global). Brachytherapy is rarely used anymore.

Chemotherapy

Chemotherapy is the use of special drugs to kill tumor cells. Some chemotherapy drugs are given by mouth; others are given by injection. In some cases, chemotherapy may need to be given without stopping over a long period of time. In this case, a pump or catheter may be placed underneath the skin to deliver the drugs.

There is a chemically protective layer around the brain called the blood-brain barrier. This barrier can prevent the drugs or chemotherapy given by mouth or injection from reaching the brain. To solve this problem, new ways of giving chemotherapy are being developed to deliver the drug directly to the tumor. One example of this is chemotherapy wafer implants that are surgically implanted in the tumor site and deliver treatment over time.

Because chemotherapy affects both healthy cells and tumor cells, side effects can occur. These vary depending on the type of drug and the individual. Side effects of drugs used in chemotherapy may include nausea or vomiting, skin rash, and occasionally soreness of the mouth or mouth ulcers. These side effects are usually reversible and may vary with each individual.

For a listing of common chemotherapy drugs used to treat brain tumors and their specific side effects, visit: www.braintumor.org/patient_info/surviving/treatment/chemotherapy_effects.html

Treating the Symptoms

The following treatments can help with the symptoms of a brain tumor, such as headaches and nausea, although they will not actually help to remove the tumor or cure your loved one:

Steroids (Corticosteroids)

Brain tumors often produce swelling and inflammation inside the skull. This can cause headaches, sleepiness and other problems. Steroids (corticosteroids), usually dexamethasone, reduce the swelling quickly and can improve mental functioning. Most patients feel better with short-term steroid medications; however, some will need to take steroids for more than a few months to control symptoms. If your loved one takes steroids as part of the treatment plan, be sure to tell the doctor or nurse about any changes in their health that you may notice. Steroids can cause side effects such as weight gain, increased appetite, insomnia and irritability. Also, your loved one should speak with the doctor if they decide to stop taking steroids as stopping suddenly can be dangerous.

Anti-seizure Medications (Anticonvulsants)

Medications may be given to help prevent seizures. These medications are called anti-seizure medications or anticonvulsants. There are several different anti-seizure medications available such as Tegretol, Depakote, Neurontin, and Phenobarbitol. If your loved one is taking an anti-seizure medication as part of the treatment plan and either it does not work or causes unpleasant side effects, the doctor will be able to switch to a different medication.

Complementary Therapies

Your loved one’s medical treatment is carefully planned to control the disease and reduce the symptoms as much as possible. Many people seek out complementary therapies to help them feel better and cope with the stress of cancer. These therapies are not meant to replace the medical therapy, but may help your loved one to manage his or her symptoms. Complementary therapies for cancer may include stress management, relaxation and imagery training, meditation, group support, family counseling, nutrition, herbal medicine, massage, acupuncture and education. Some cancer centers and hospitals offer these services for people with cancer, their families, and their caregivers.

Can Clinical Trials Help Your Loved One?

Clinical trials are research studies to test new treatments. For cancer research a clinical trial might focus on medication, surgery, radiotherapy, a new type of therapy, or some combination of these. Benefits of participating in clinical trials include:

• Being among the first to receive a promising new treatment
• High-quality medical care 
• Helping doctors understand more about cancer treatment, thus helping future cancer patients

The possible risks of participating in clinical trials include:

• An experimental treatment may not be as good as standard care 
• The new treatment may not work for your loved one; also, your loved one may be in the study group that does not receive the new treatment

Doctors are now investigating several treatments for brain tumors in clinical trials. Some new drugs are designed to increase the effectiveness of standard treatments, such as radiotherapy and chemotherapy. Other new treatments are designed to change tumor cells, so that their growth is under control.

There are many ways to find trials that might be appropriate for your loved one. Start by asking the doctor about what trials are available. Various organizations also provide lists of trials along with information about what is being tested, and where the trial is occurring. See the section below entitled Resources for information on how to contact these organizations. Be sure to check with your loved one’s health insurance provider to see whether the costs of participating in the clinical trial are covered.

What Will Happen After Treatment?

After treatment, a patient’s health is monitored closely. An MRI, CT, or other type of imaging scan may be done every so often to see if the treatment is working. Frequent physical exams will help the doctor find out if the cancer has returned or if side effects are a problem. Be sure to report any recurrence of symptoms or other changes in your loved one’s health promptly to the doctor or nurse.

Issues for Caregivers

Q: What effects do brain tumors have on the mind, emotions or personality?

Brain tumors can indeed affect the mind, emotions, and/or personality. Problems with memory, speech, and/or concentration may occur. Your loved one may face serious mental challenges with feelings of confusion. Moods may change, as may the way a person acts. Your loved one may have difficulty doing more than one task at a time. Various treatments may slow the progression of these symptoms, so check with the doctor about what treatments may help.

Be aware that a neuropsychologist can help with rehabilitation. In order to come up with an effective plan, the neuropsychologist will first do a series of tests to look at your loved one’s emotions, behaviors, and mental abilities. Based on the results of the tests, one or more of the following may be recommended:

• Cognitive rehabilitation, which means treatment for mental difficulties
• Occupational rehabilitation, which is education and training about how to be able to continue working
• Counseling to deal with emotional changes

Q: How can the home be safer for your loved one with brain tumors?

Due to possible muscle weakness, changes in balance, and other considerations, the following may help make the home a safer place for your loved one:

• Put handrails in shower and bathtub
• Get a shower chair
• If the home is more than one story, consider putting the your loved one’s bed on the ground floor
• Consider getting a hospital bed
• Consider getting a portable toilet

Q: How can I cope emotionally?

As a caregiver, you may choose to receive counseling either to (1) learn how to help your loved one deal with the mental changes they are having, or (2) learn to deal with your own reactions to changes in your loved one. This is a difficult time for everyone involved. While illness may bring people closer together, it may also cause tension, unhappiness and stress. Here are some suggestions for coping:

• Find family members and friends who are willing to commit to helping you take care of your loved one.
• Involve those people in a caring community that provides both practical and emotional support to you and your loved one.
• Identify your strengths and the strengths of the others in your caring community.
• Take time off regularly! Caregiver burnout is a major concern.
• Get involved with outside groups and organizations that provide support and information for people with cancer and their friends and caregivers.

Credits

American Brain Tumor Association, 1994, Coping With A Brain Tumor, Des Plaines, IL.

American Brain Tumor Association, 1996, A Primer of Brain Tumors, Sixth Edition, Des Plaines, IL.

National Brain Tumor Foundation, 2002, Coping with your Loved One’s Brain Tumor, Oakland, CA.

National Brain Tumor Foundation, 2004, Understanding Brain Metastases: A Guide for Patient and Caregiver, Oakland, CA.

Recommended Readings/Links

Navigating Through A Strange Land. A Book For Brain Tumor Patients and Their Families, Patricia Ann Roloff (Ed), 1995, Indigo Press, 109 Walnut St., San Francisco, CA 94118.

Coping With a Brain Tumor Part I: From Diagnosis to Treatment and Part II: During and After Treatment, American Brain Tumor Association, 2720 River Road, Ste. 146, Des Plaines, IL 60018.

Coping with Your Loved One’s Brain Tumor, National Brain Tumor Foundation 2002. Available online: www.braintumor.org/pservices/pdfarchive/CopingBrochure.pdf

A Primer of Brain Tumors, Sixth Edition, Gail Segal, 1996, available from the American Brain Tumor Association, 2720 River Road, Ste. 146, Des Plaines, IL 60018.

Love, Medicine and Miracles, Bernie Siegel, 1986, Harper Perennial, New York, NY, (800) 242-7737.

Brain Tumors: A Guide, the National Brain Tumor Foundation, 2003, 414 Thirteenth St, Suite 700, Oakland, CA 94612-2603 (800) 934 2873. www.braintumor.org. Also available:

SEARCH (Newsletter), National Brain Tumor Foundation

Brain Tumor Resource Directory (2003), National Brain Tumor Foundation. Available online.

“How Brain Tumors Affect the Mind, Emotion, and Personality”, National Brain Tumor Foundation, 2002. Available online: www.braintumor.org/pservices/pdfarchive/Fact%20Sheet-NeuroPsych.pdf

Family Caregiver Alliance Fact Sheets: Available by sending $1.00 to FCA Publication Orders, 180 Montgomery St., Ste. 1100, San Francisco, CA 94104 or free online.

Caregiving and Depression 

Taking Care of YOU: Self-Care for Family Caregivers

Resources

Family Caregiver Alliance
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
(415) 434-3388
(800) 445-8106
Web Site: www.caregiver.org
E-mail: info@caregiver.org
 
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.

FCA’s National Center on Caregiving offers information on current social, public policy and caregiving issues and provides assistance in the development of public and private programs for caregivers.

For residents of the greater San Francisco Bay Area, FCA provides direct family support services for caregivers of those with Alzheimer’s disease, stroke, brain tumors, ALS, head injury, Parkinson’s disease and other debilitating health conditions that strike adults.

Brain Science Foundation
266 Main Street, Building 1, Suite 6B
Medfield, MA 02052
(508) 242-9830
www.brainsciencefoundation.org  

Central Brain Tumor Registry of the United States
3333 West 47th Street
Chicago, IL 60632
(773) 579-0021
www.cbtrus.org  

The Healing Exchange BRAIN TRUST
186 Hampshire Street
Cambridge, MA 02139-1320
(877) 252-8480 (toll free)
(617) 876-2002
www.braintrust.org
 
National Brain Tumor Foundation
22 Battery St., Ste. 612
San Francisco, CA 94111
Patient Information Line: (800) 934 2873
Email: nbtf@braintumor.org
www.braintumor.org

National Cancer Institute
Suite 3036A
6116 Executive Boulevard, MSC8322
Bethesda, MD 20892-8322
Phone: (800) 4CANCER (800-422-6237)
www.cancer.gov

North American Brain Tumor Coalition
(includes all of the Brain Tumor organizations)
www.nabraintumor.org
This fact sheet was prepared by Family Caregiver Alliance in cooperation with California’s statewide system of Caregiver Resource Centers. Reviewed by Harriet Patterson, MPH, Patient Services Program Manager, National Brain Tumor Foundation. Funded by the California Department of Mental Health. ©2004 Family Caregiver Alliance. All rights reserved.

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  Printable Version ]]> http://wonky-eye.com/2007/11/01/some-brain-tumor-and-caregiver-information/feed/ 0 http://wonky-eye.com/2007/10/31/happy-halloween/ http://wonky-eye.com/2007/10/31/happy-halloween/#comments Wed, 31 Oct 2007 16:07:17 +0000 mrs.ladyking http://wonky-eye.com/?p=83 Wishing everyone a Happy Halloween!  I am writing today to show you that even though the diagnosis is life changing, life does go on.  I do my best to keep “business as usual” around here.  Being diagnosed does not mean your life is over, it just means that it is going to be a little different.

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