Blog Highlights:

• For repeated injections and blood drawing during cancer treatment, you will likely need to have an implantable device for gaining access to your central veins
• Veins in the arms are usually used on a short-term basis, but they may be difficult, or even painful, to stick into repeatedly
• A range of products give access to the larger veins without causing pain from repeated injections or damage to these veins
• CR Bard Company has a nice website for patients who are being considered for an implantable device

The video segment here shows how a pediatric patient can have his chemotherapy administered without much discomfort, and without risking damage to his veins due to repeated injections. Whether you are an adult or a child with cancer requiring repeated injection or infusion of drugs, you will likely need to have an implantable device for gaining access to your central veins.

Why? Because administering drugs or other agents by intravenous infusion over a long period, or drawing repeated blood samples, can be a painful and difficult ordeal for patients and the healthcare team, especially when the patient is a child. Veins in the arms are usually used on a short-term basis, but they may be difficult, or even painful, to stick into repeatedly. The veins can dry up (thrombosis) or even get inflamed or infected (thrombophlebitis). Even more difficult and painful is resorting to getting blood, or giving infusions, from veins in the neck or the legs. This is a last resort when the veins in the arms have “given out”. We also know that it’s not just the needle and sometimes the drugs themselves can cause damage to the vein.  So-called “sclerotic agents”, such as adriamycin, can cause damage to the veins and infiltrate into the surrounding tissues, causing great tissue damage.

One of the significant technical advances for the cancer patients is the range of products that give doctors and nurses access to the larger veins without causing pain from repeated injections or damage to these veins.  Your doctor will go over with you about the different kinds of venous access to a major vein going to the heart. In each circumstance, it involves some minor surgery to put these catheters in place. These options are an implantable (subcutaneous) port, an , or a peripherally inserted central catheter (PICC).

The CR Bard Company has a nice website for patients who are being considered for an implantable port. They also have some great booklets for children (in English and Spanish) that describe these catheters which can help the kids understand the process with clearer expectations of how they are used during treatment. As described in the booklet to parents: “By maintaining a matter-of-fact and positive attitude, you can help your child adjust favorably to his … [central line, implantable port, PICC line].” If you or a loved one is facing this procedure, talk to your doctor about the options that would be most appropriate in your circumstance.

I highly recommend these books for children to help describe and explain catheters:

For a children’s book about the implantable venous port, go to: http://www.bardaccess.com/pdfs/other/MC-0406-00_A_Port_For_Me_web.pdf

For a children’s book about the central venous catheter, go to: http://www.bardaccess.com/pdfs/other/MC-0404-00_My_Central_Line_Book_web.pdf

For a children’s book about the peripherally inserted central catheter, go to: http://www.bardaccess.com/pdfs/other/MC-0405-00_My_PICC_Line_web.pdf

Blog Highlights:

• Avaston has been approved by the FDA as a single agent for patients with progressive glioblastoma (GBM) following prior therapy
• Avastin is a  angiogenesis inhibitor that can block the formation of blood vessels around these brain tumors
• Without these blood vessels, a tumor is starved of the nutrients and oxygen it needs to survive and grow
• For more information, including potential side effects, go to their website:http://www.avastin.com

Avaston (Bevacizumab, from Genentech Oncology) has been approved by the FDA as a single agent for patients with progressive glioblastoma (GBM) following prior therapy. This is an important advance for treating GBM’s, a common form of brain cancer also called grade IV astrocytoma. All GBM tumors have abnormal and numerous blood vessels, a common feature of a fast-growing tumor. These blood vessels deliver necessary oxygen and nutrients to GBM tumors, helping them grow and spread. In order to grow and spread, these tumors need the nutrients and oxygen that are carried in the blood. To get blood, nearby blood vessels begin to grow toward the tumor. This new growth of vessels is called angiogenesis. Avastin is a  angiogenesis inhibitor that can block the formation of blood vessels around these brain tumors. Without these blood vessels, a tumor is starved of the nutrients and oxygen it needs to survive and grow.

The effectiveness of Avastin on GBM is based on tumor response. Currently, no data have shown whether Avastin improves disease-related symptoms or survival in people previously treated for GBM.

Read about other advances in GBM treatment in my blog, “Advances in the Treatment of Glioblastoma of the Brain.”

For more information, including potential side effects, go to their website: http://www.avastin.com

This is an informative interview with Dr J. Leonard Lichtenfeld, M.D., representing the American Cancer Society, who gives a nice summary of the various treatments for glioblastoma, including  a study presented at the ASCO Oncology Meeting  last year about treating refractory glioblastoma (i.e. can be removed surgically) with bevacizumab (Avastin, from Genentech Oncology in San Francisco).

A glioblastoma is a very sneaky tumor that arises most anywhere in the brain but usually in the frontal half. Unlike other cancers, it does not have any boundaries that delineate the tumor from the surrounding normal brain tissue. In addition, it can grow in critical areas of the brain that cannot be removed, such as the “motor” section of the brain that is responsible for sending nerve impulses to muscles and the “sensory” section responsible for sight, speech, etc. Interestingly, tumors growing in the frontal lobe (which has to do with memory) can grow quite large, and some sections of the frontal lobe can be removed without a significant loss of mental functions

The standard treatment is surgical removal if it is localized (which is uncommon), radiation therapy, and chemotherapy. Glioblastomas are relatively insensitive to radiation therapy, although this treatment is a common standard treatment. Radiation therapy can shrink down the tumor temporarily in some circumstances. In other circumstances, a partial surgical removing (“debulking”) can remove the pressure from a growing tumor, depending on its location and size.

Because of the “blood-brain barrier”, most types of chemotherapy can’t get into the brain (which is trying to protect itself from what would otherwise be noxious chemicals).  This is a major reason that these drugs can’t get across the blood vessels into the brain since it treats most drugs the same as  noxious chemicals. Paradoxically, this makes the brain vulnerable to tumor growth  since it is very difficult for most forms of chemotherapy to cross the blood-brain barrier and get into the tumor. A drug called temozolamide (Temodar, Schering) does cross the blood-brain barrier and is increasingly used for cancers that have not responded to standard treatment (also called refractory cancers). Having bevacizumab (Avastin) as a  second drug gives these patients the opportunity for a “second-chance”  response that might prolong their life or protect them a little longer from debilitating symptoms of the tumor as it grows.

One can understand from this description that these tumors are extremely stubborn and difficult to treat. Even those that can be removed surgically have a high rate of recurrence.  Radiation to the brain can cause permanent damage, especially after a few years. Only a few types of chemotherapy will get into the brain in sufficient concentration to cause any response. This is a tumor that requires highly specialized care, usually in major centers that specialize in brain tumors.

Progress is being made and there is hope.

For more information about Avastin, see the related blog titled:
“An Important Advance: Avastin (Bevacizumab) for Brain Cancer Treatment.”

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.

This is an Oncology Podcast segment for women about preparing for hair loss and how to cover the head with wigs and scarves.

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

Hair loss from chemotherapy usually begins within 10-14 days after the start of treatment and gets worse within 1 to 2 months. In some instances, depending on the chemotherapy drugs, hair loss may begin with a sensation of the scalp itching, and within a few hours hair begins to fall out. Hair loss typically continues throughout treatment. Hair usually begins to grow back 4-6 weeks after the end of treatment. In general, hair grows back at a rate of about one-quarter inch per month.

It takes longer for hair to be lost during radiation therapy. Hair loss in the area being treated usually begins 2-3 weeks after the first treatment. All hair in that area falls out within about 1 week and may begin to regrow 3-6 months after treatment has ended. However, the hair loss may be permanent.

There are no effective ways to prevent the loss of hair during cancer treatment. Being gentle with your hair may help make your hair loss more gradual and improve the regrowth of your hair.

The best way to manage hair loss (medical term is alopecia) is to think about what will make you feel most comfortable with your appearance. Most people with cancer have found that it is easier to make that decision before treatment starts. Many women choose to wear a wig, but some women find wigs to be irritating or itchy. If you decide to get a wig, consider several factors.

Tips on Wigs
* Buy the wig before treatment begins or at the beginning of treatment — you can better match your hair color and texture
* Try on several different wigs to find one that you really like
* Consider buying two wigs, one for everyday use and one for special occasions
* If you can’t afford a custom wig, buy a standard (less expensive) wig and have it professionally styled
* Ask if the wig can be adjusted — your wig size can shrink as you lose hair
* Get a prescription from your doctor for the wig because it is often covered by health insurance (Prescription must state “skull prosthesis for hair loss caused by cancer treatment”)
* Contact your local branch of the American Cancer Society to learn about free wigs that have been donated by patients after they have completed treatment

Wearing a scarf, hat, or other type of head covering is also a choice. Your scalp may be tender from treatment (especially radiation therapy to the head), and a head covering can protect your scalp against cold and sunlight. If you do not wear a head covering, make sure to use sunscreen on your scalp when you will be outside.

Some people choose to cut their hair short so that hair loss will not be as traumatic when it falls out. Others shave their head completely before treatment begins. How you handle hair loss is a personal decision and the right choice is the one that makes you feel most comfortable.

Being Gentle To Your Hair
* Use a soft-bristle brush and/or a wide-toothed comb
* Wash hair with a gentle, pH-balanced shampoo (avoid shampoos with strong detergents, chemicals, or frangrances)
* Do not use hair dryers, hot rollers, or curling irons
* Do not bleach or color your hair or get a permanent
* Avoid hair sytles that pull on the hair, such as braids or ponytails
* Sleep on a satin pillow case or put a hair net on to decrease friction

There are a number of resources that provide wigs and related products. The following is list of retailers provided by the American Cancer Society:

ChemoSavvy
PO Box 175
Green Mountain Falls, CO 80819
Toll-free number: 1-888-599-3560
Web site: www.chemosavvy.com
This company supplies wigs, hats, scarves, turbans, and accessories for women and children to consumers.

Doma Designs
426 East Bissell Avenue
Oil City, PA 16301
Toll-free number: 1-888-603-1206
Web site: www.domadesigns.com
This company supplies hats, bandanas, and accessories for women, men, and children to consumers.

Headcovers Unlimited
2020-C Anders Lane
Kemah, TX 77565
Toll-free number: 1-800-264-HATS (4287)
Web site: www.headcovers.com
This company supplies wigs, turbans, hats, and accessories for women, men, and children to consumers.

Look of Love International
1795-B Route 27 South
Edison, NJ 08817
Toll-free number: 1-800-526-7627
Web site: www.lookoflove.com
This company supplies wigs and accessories to consumers.

“tlc” Tender Loving Care®
PO Box 395
Louisiana, MO 63353-0395
Toll-free number: 1-800-850-9445
Web Site: www.tlcdirect.org
This company supplies wigs, hats, turbans, breast prostheses, bras, and other products to consumers. “tlc” is a part of ACS Products, Inc., an affiliate of the American Cancer Society.

Yako Corp DBA Hai’s Wigs
6474 Lake Worth Road
Lake Worth, FL 33463
Toll-free number: 1-888-471-2659
Web Site: www.ladywig.com
This is an online retailer that also has a physical store selling wigs and hair accessories. This company specializes in treatment-related hair loss.

Tender Loving Care®
PO Box 395
Louisiana, MO 63353-0395
Toll-free number: 1-800-850-9445
Web Site: www.tlcdirect.org
This company supplies breast prostheses, bras, wigs, hats, turbans, and other products to consumers. “tlc” is a part of ACS Products, Inc., an affiliate of the American Cancer Society

Brain tumors are a devastating type of cancer that are very difficult to treat. Progress is being made, however, across all the disciplines, including neurosurgery, radiation therapy and new drugs. This video is a very nice discussion about the management of brain tumors by Dr. Susan Chang from University of California at San Francisco Medical Center. For patients and their family who are looking for an overview, this is a good place to start. Dr Chang also recommends–as I do– to go to cancer.net for more details about brain tumors.