GRACE :: Treatments & Symptom Management

Join GRACE and Friends at the Cancer Immunotherapy Patient Forum Nov. 7th

Cancer immunotherapy – also called immuno-oncology – uses a cancer patient’s own immune system to kill cancer cells. The number of cancer types that may benefit from immunotherapy is increasing – leading patients to wonder if the treatment is right for them.

GRACE, along with the Melanoma Research Alliance and the Society for Immunotherapy of Cancer, will hold a patient forum Saturday, November 7, 2015 near Washington, DC. Patients and caregivers with melanoma, leukemia/lymphoma, lung, or genitourinary cancers will get the answers they want from leading immunotherapy experts. The event will take place at the Gaylord National Hotel & Convention Center in National Harbor, Maryland.

The topics include:

  • What is Immunotherapy & Its Mechanisms of Action?
  • The Current Role of Immunotherapy
  • Managing Immunotherapy Side Effects
  • Biomarkers and Patient Selection
  • Novel Immunotherapies and Combinations, and
  • New Approaches to Immunotherapy

Additionally, breakouts for melanoma, leukemia/lymphoma, lung and genitourinary cancers will give patients information about their specific conditions.

Registration is $25 per person.

View the agenda for additional details and a list of confirmed faculty.

Thanks to our Advocacy Partners

Aim at Melanoma, Bladder Cancer Action Network, Addario Lung Cancer Foundation, Cancer Support Community, Free to Breathe, Lung Cancer Alliance, LUNGevity, Melanoma International Foundation, and the Mollie Biggane Melanoma Fund.

The Immunotherapy Patient Forum is supported in part by grants from Amgen, Bristol-Myers Squibb, Genentech, and Merck & Co., Inc.



Explaining Leptomeningeal Metastases

Guest post by Seema Nagpal, MD, a Clinical Assistant Professor of Neurology in the Division of Neuro-oncology at Stanford University School of Medicine

Leptomeningeal metastases, also known as “LM”, carcinomatous meningitis, or neoplastic meningitis, are cancer metastases that have spread to the coating of the brain. Rather than growing as a ball, leptomeningeal metastases form a thin layer along the meninges. LM may occur with or without brain metastases, but is generally a complication that occurs after cancer has spread from its primary site to other organs.

LM can be a frightening diagnosis for patients and for doctors, alike. While we do not have a cure for LM, new drugs and a multi-disciplinary approach can dramatically alter outcomes. Doctors who see patients with LM are seeing longer and better survivals than we have in the past. Many of us can tell you about patients who have lived a number of years after coming to us very ill. Though this won’t be the case for every patient, seeing a doctor who treats LM frequently can assure you are getting information about all of the options. Clinical trials often exclude patients with LM, but this is also slowly changing, so be sure to check with your doctor and with if you are interested.

Symptoms of LM

The symptoms of LM can come from the brain, the nerves exiting the brain, or nerves exiting the spinal cord. The most common symptom is persistent headache, frequently accompanied by nausea. These symptoms may be worse in the morning and get slightly better through the day. Other symptoms can include double vision, difficulty walking, numbness or weakness not explained by other problems, and neck stiffness.


Meningeal carcinomatosis in a patient with breast cancer

Meningeal carcinomatosis in a patient with breast cancer

Because symptoms of LM are varied and may be vague, LM can be tricky to diagnose. Patients and doctors need to be aware of this complication and consider a work-up for LM if symptoms are otherwise unexplained. MRI of the brain and spinal cord with contrast can be helpful in many cases, but may not be as accurate in patients with blood cancers as it is in solid organ cancers. MRIs should be performed with a high quality scanner and the radiologist should be aware of the possible diagnosis.

For some patients, the combination of MRI and symptoms is enough to make the diagnosis of LM. In patients where there is some doubt, the test that confirms diagnosis is a lumbar puncture or spinal tap. Despite the scary name, it’s usually performed in a doctor’s office using the same anesthetic your dentist uses. Patients go home within 20 minutes to 1 hour of the procedure. Again, the doctor performing the lumbar puncture needs to be aware of the possible diagnosis so that enough fluid can be tested and so that the sample can be tested right away (or it’s not accurate). Unfortunately, even in the best hands, a single lumbar puncture may only make the diagnosis 70% of the time. Sometimes, 2 lumbar punctures are needed. We are working on tests for DNA and RNA in the spinal fluid that may help make testing the spinal fluid more accurate.


Treating LM is very individualized. The choice of treatment depends on the type of cancer, the patients’ symptoms and how well controlled the cancer is outside of the central nervous system. There are 3 general approaches. Most of the time, we use a combination of these, along with direct symptoms management, to help patients live better and longer:

1. Systemic Chemotherapy with central nervous system penetration: Most drugs do not enter the central nervous system due to the “blood-brain-barrier.” However, some drugs are able to enter the nervous system and effectively treat metastases in both the brain and leptomeninges. Patients with blood cancers who develop LM may receive high doses of methotrexate. Patients with specific types of lung cancer may get alternate dose regimens of oral drugs like erlotinib (Tarceva), or receive pemetrexed (Alimta) in combination with bevacizumab (Avastin). Patients with melanoma may receive vemurafenib (Zelboraf). Centers who see more patients with LM frequently have other alternatives they use for patients.

2. Radiation can be used to slow disease and relieve symptoms. This may mean whole brain radiation or radiation to specific areas of the spine.

3. “Intrathecal Chemotherapy” is chemotherapy that is given directly into the fluid that surrounds the brain and spinal cord. Usually, patients will have a port, called an Ommaya, surgically placed into the brain prior to this chemotherapy.

Symptom Management

The symptoms of LM are varied, depending on the most effected areas of the nervous system. For patients suffering nausea and vomiting from elevated pressure in the brain, a shunt from the brain to the abdomen can help reduce pressure. Medications that reduce irritation to the coating of the brain or decrease spinal fluid production can also help. I see my patients with LM often and frequently in conjunction with our supportive care oncologists. Controlling symptoms is important not only to quality of life, but can also increase survival.


This is a very basic overview of leptomeningeal metastases, or metastases to the coating of the brain. LM can cause a number of bothersome and vague symptoms, such as nausea or difficulty walking. Diagnosis can be tricky, but is usually made with MRI and a lumbar puncture. While LM is not curable, a multi-disciplinary treatment approach that includes a supportive care specialist and a doctor who sees many patients with LM can improve quality of life as well as survival.


5 Common Patient Questions about Molecular Tumor Profiling

Guest post by Christine Walko, PharmD, BCOP, FCCP
Clinical Pharmacogenomic Scientist, DeBartolo Family Personalized Medicine Institute
Chair, Clinical Genomic Action Committee
Lee Moffitt Cancer Center, Tampa, FL

Back in January, I initially discussed the concept and goals of a Molecular Tumor Board. The need for the Molecular Tumor Board grew out of the ability to assess the genetic “fingerprint” of an individual tumor and the challenge of how to translate this fingerprint into a clinical treatment decision for patients. As I previously discussed, the goal of the Molecular Tumor Board is to assess the results of the genetic tumor profile, determine the clinical relevance of each genetic alteration based on the patient’s characteristics and available literature and then communicate this information to the treating oncologist who will then discuss it with the patient. At the 2015 American Society of Clinical Oncology (ASCO) Annual Meeting, I presented in an Education Session entitled “Expediting the learning curve for applied cancer genetics.” My specific presentation was on “Using multidisciplinary tumor boards to augment the value of cancer sequencing.” The approach I took to this presentation was “5 things to consider when organizing a Molecular Tumor Board.” Following the end of my presentation, I was asked by a very enthusiastic and highly involved cancer research advocate about the role of patients in the process, specifically about how patients could be involved in optimizing tumor genetic discussions. This led me to consider common questions patients may ask about molecular tumor profiling.

1. What exactly are you looking for when you genetically profile my tumor?

When most people think about genetic testing, they may think about “germline” genetics or the genes that you inherited from your parents which are found in all the normal cells in your body.  With tumor genetic testing, we can see these types of genes since tumors evolve from normal healthy tissue. But tumors generally have a different genetic fingerprint that give some insight into why it became a cancer cell.  Basically, tumor genetic testing involves taking a piece of tumor (or blood or bone marrow if you have a blood tumor like a leukemia or multiple myeloma) and reverse engineering it to understand what went wrong in the cell and why it is growing so rapidly. Genetics cannot tell the full story on this – far from it – but it can give us clues as to what types of growth pathways are turned on. We know that genetic changes in molecular pathways are involved in the development of tumors as well as tumor survival, progression and spread to distant areas.  With our current technology, we can get a molecular fingerprint of the tumor. We can then look for oncogenes or tumor suppressor genes. An oncogene is a gene that when turned on by a mutation in that gene increases growth in cell (e.g. EGFR, KRAS, etc.); kind of like giving a car gas.  A tumor suppressor gene is a gene that when turned off by a mutation or other change increases growth in a cell (e.g. TP53 or RB).  Tumor suppressor inactivating mutations are like cutting the brakes on a car. Tumor genetic testing can look for a select number of mutations (most commonly up to a few hundred) or even sequence the whole tumor. What we look for are mutations in oncogenes or tumor suppressor genes that we can use treatments to target and block growth pathways turned on by these mutations.  

2. Do you always find something?

A better question is, “Do you always find something useful?” and the answer is unfortunately no. This is where the challenge of defining whether a genetic change is “clinically actionable” comes in. A clinically actionable change is a genetic alteration that predicts response to a particular therapy or a genetic alteration that provides diagnostic or prognostic information about the cancer. The chance of finding an actionable mutation depends upon the type of cancer and the number of genes being assessed by the laboratory assay. Once the results from the molecular test are back, your medical team and sometimes a Molecular Tumor Board will look at the available data to support which treatment recommendations may be most helpful. 

3. I have a report from a genetic profiling company. How can I narrow down the treatment options?

Ideally, this should be done in discussion with your primary treating oncologist. Depending on what laboratory ran the genetic test, the results can be reported differently and often include options that are not all that reasonable for most patients. Some things to consider and discuss with your doctor include whether you want to participate in a clinical trial and if so, what type. Clinical trials are the best way to get new therapies, especially new therapies that may target genetic changes in the tumor. But clinical trials sometimes have limitations. You have to be able to travel to the clinical trial site regularly for visits and you have to meet all the inclusion and exclusion criteria for the trial. Some trials require that you have a certain tumor genetic variation or type of cancer, where others may not. Sometimes, there is an FDA approved drug that is available and blocks a growth pathway that is turned on in your tumor. If the drug is FDA approved in your tumor type, then this may be an alternative to a clinical trial. However, what is more common is the availability of an FDA approved drug for a tumor type or situation different than what you may have. This is known as “off label” therapy.   

4. Based on the genetic profile results, I may qualify for “off label” therapy. What does that mean?

When drugs are FDA approved, the drug company that owns that drug submits everything that is known about the drug to the FDA. This includes large clinical trials that usually compare the drug to standard of care in a particular disease state. When the drug is officially approved, the approval will state the specific dosing schedule and patient population for which it is approved among lots of other safety information. These patient populations can be very specific such as “advanced non-small cell lung cancer patients with adenocarcinoma who have progressed on a prior cisplatin-based chemotherapy regimen.” Insurance companies use this approval information to decide for whom they will pay for the drug. Using a drug off label essentially means using the FDA approved drug for a different indication or patient population than for what it was approved. Generally when an off label drug is recommended, there is some clinical data to support it is helpful and safe in your type of cancer but perhaps not enough data for the company to submit it to the FDA for your specific indication. Whether your insurance company will pay for the drug depends on several factors including the specific drug, your type of cancer, what information is available in your type of cancer and the specific insurance company’s policy. Most times, the prescription is initially rejected by the insurance company but through an appeal process can be obtained. This appeal process typically takes 2 weeks and is explained on the rejection notice from the insurance company. 

5. Does insurance pay for the test?

Insurance companies do pay for many of the tests but not all. This depends on what type of cancer you have, what state you live in and what type of insurance you have. It is ALWAYS a good idea to ask this question to your doctor. Some tests are done at the cancer center where you may be getting treated while others may be sent out to commercial laboratories. These commercial laboratories may have resources to help with getting insurance company reimbursement but sometimes patients get expensive bills (a typical molecular test that looks at about 600 genes costs about $6000-7000) so it is always a good idea to check.

There are many other questions people ask about molecular tumor results and I am happy to answer any general questions you may have. Please feel free to email me at or post your comment below since others may have the same question.

Questions & Answers with Drs. Pal, Luke and Wolchok about Immunotherapy for Cancer

Immunotherapy Forum Video #31: “You know the world is changing when you have to change the rules…” Following presentations on endpoints and biomarkers in cancer immunotherapy, the doctors take questions from the audience.

Redefining Success and Failure in Cancer Immunotherapy Trials

Immunotherapy Forum Video #30: Immunotherapy for cancer has rewritten the rules for what we consider a successful response to treatment. Some tumors grow before they regress. Dr. Jedd Wolchok discusses why a new measurement criteria was developed.

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