(Dr. Andrew Norden, a neuro-oncologist at the Dana-Farber Cancer Institute in Boston, conducted an online chat with Boston.com readers on Wednesday, May 21. He answered questions about brain tumors in the wake of the news that Senator Edward M. Kennedy has been diagnosed with a malignant brain tumor.)
Dr__Andrew_Norden: Hi, this is Andrew Norden, MD, a neuro-oncologist at Dana-Farber Cancer Institute and Brigham and Women's Hospital. I'll be chatting for the next hour about brain tumors.
sandra__Guest_: what symptoms would senator kennedy have had before the seizure
Dr__Andrew_Norden: Sorry for the delay.... He may well have had no symptoms at all. Sometimes people may have headaches, or given the location of this tumor, right sided numbness, weakness, or cognitive difficulties.
Curious__Guest_: I was driving about a month ago and all of sudden I blackout( for a few seconds) but never felt again
Dr__Andrew_Norden: For medical advice, you will need to talk to your personal physician.
shorty__Guest_: Has anyone mentioned the vaccine CDX-110?
Dr__Andrew_Norden: No. This is a treatment that's available only as part of a clinical trial at certain sites, and only for patients whose tumors have been removed completely (which appears not to be the case here). Also, a specific molecular abnormality called EGFRvIII is required.
bren__Guest_: Can Kennedy's tumor be excised or reduced by gamma knife?
Dr__Andrew_Norden: It is difficult to know without seeing the scans. Some tumors can be removed. Gamma Knife and other stereotactic radiation techniques are not usually used for gliomas.
bos__Guest_: Are malignant gliomas always Grade 3 or 4, as indicated by the media coverage?
Dr__Andrew_Norden: Yes, the definition of malignant glioma is grade 3 or 4.
sensis__Guest_: Do we know if Senator Kennedy has a GBM or a lower grade mixed glioma?
Dr__Andrew_Norden: Since they're calling it "malignant" it is grade 3 or 4. We don't know any more details yet.
winslow__Guest_: How common is surgical resection of tumors such as Kennedy's?
Dr__Andrew_Norden: There are about 10,000-20,000 of these tumors diagnosed each year in the US, depending on which source you look at. Many of them can be removed at least partially.
sensis__Guest_: Are there any other promising treatments on the horizon other than Temodar, CPT-11/Avastin right now?
Dr__Andrew_Norden: There is a very long list of promising treatments. At the moment, the ones that have proven efficacy include the ones you mentioned, but lots of research is ongoing.
ppearl__Guest_: Hello Dr. Norden and thank you for taking the time to be here. I am an acoustic (vestibular) neuroma patient and also a website moderator for the ANA discussion forum. I had Cyberknife radio done at Beth israel 2 yrs ago.... and my question is this, if you know. In light of Sen. Kennedy's diagnosis of glioma, knowing they will be doing FSR on him at MGH (i'm assuming), would cyberknife also be a potential radio treatment option if the growth is localized? thanks again, Phyl
Dr__Andrew_Norden: I don't know what kind of radiation they're doing for the Senator. Typically FSR is not used for gliomas. Cyber Knife is a related technique that is not often used. Gliomas usually are treated with involved-field radiation therapy.
The_dude__Guest_: So, whats the prognosis on a condition like Uncle Ed's?
Dr__Andrew_Norden: It will depend on the final pathology results. We don't know the subtype of malignant glioma yet.
sensis__Guest_: Do you think at the time of Sen Kennedy's surgery last fall for removal of plaque in the carotid artery that a brain MRI was conducted?
Dr__Andrew_Norden: Probably yes. And in all likelihood, this tumor was not present at that time.
bos__Guest_: Are malignant gliomas always classified as Grade 3 or Grade 4 tumors, as indicated by the recent media coverage?
Dr__Andrew_Norden: Yes, malignant gliomas are, by definition, grade 3 or 4.
jimkersten__Guest_: Is it common to do a scan after the blood clot was found in the Senator?
shorty__Guest_: Have you been made aware of the vaccine CDX-110 from Avant in Needham, Mass. Pfizer has just made a licensing deal with them and at this early stage in development is eliciting strong enthusiasm. It is to treat, at this moment, glibastoma brain cancer?
Dr__Andrew_Norden: Yes, it's available as a clinical trial at certain sites for patients whose tumors are removed completely. There are many other eligibility criteria as well.
5Strings__Guest_: Hello, Doctor - thanks for being here. I am wondering why there cannot be an agreed-upon screening test for Brain Tumors, much like a colonoscopy. Maybe an MRI or PET scan every 5 years or so.
Dr__Andrew_Norden: Interesting idea. Unfortunately, malignant brain tumors like the Senator's grow quickly, often in a period of a few months. Plus, if we did frequent scans as you suggest, we would detect a lot of abnormalities that might not be important. Patients might end up with unnecessary brain biopsies.
winslow__Guest_: The news is viewed in the media as uniformly grim. Is a glioma by definition fatal?
Dr__Andrew_Norden: Unfortunately, the majority of gliomas are ultimately fatal. A small number of patients have very long survival.
wvfranz__Guest_: good morning have you checked out Prof. Madjid Samii www.ini-hannover.de a specialist treating this kind of illness
Dr__Andrew_Norden: No, I'm not familiar with this person.
ppearl__Guest_: do you know the % of success rate of gliomas treatments by using radio and chemo combos?
Dr__Andrew_Norden: It depends how you define success. These treatments prolong survival to a variable extent, depending on the specific tumor type.
jimkersten__Guest_: since it is common to do a scan after the clot is it fair to assume that this tumor was not there 6 months ago and that this is an extremely aggressive?
Dr__Andrew_Norden: I think that is probably a fair assumption. Many malignant gliomas develop in a period of months.
winslow__Guest_: Has the research linking cells phones to brain tumors proved out? Is there anything to this? And are there any other risk factors for gliomas other than age?
Dr__Andrew_Norden: Good questions. According to the best studies I've seen, there seems to be an association between cell phone use and benign tumors called vestibular schwannomas. Cell phones have not been linked to malignant brain tumors....
Dr__Andrew_Norden: The only known risk factor for gliomas is radiation, as a person might receive as treatment for a childhood cancer, for example.
5Strings__Guest_: Is there any way of utilizing Nano-technology in the treatment for barain cancers? Identifying a unique cell receptor, then attaching to it while bringing along some activatable molecule to disrupt the malignant cells?
Dr__Andrew_Norden: At present, nano-technology has not been successfully used for brain tumors. There are many clinical trials in which toxins or radioactive compounds are "targeted" to glioma cells by molecules that seek out a specific receptor.
bos__Guest_: Is focused ultrasound being considered for patients with unresectable malignant gliomas?
Dr__Andrew_Norden: Yes. I am not aware of any published results in this area just yet.
bo__Guest_: Any idea why he would be released so quickly ? why are they not attacking this ASAP ? decide on surgery and the chemo/radiation ? why the delay?
Dr__Andrew_Norden: Generally, we wait at least 10-14 days after surgery for adequate healing before starting radiation and chemotherapy. Radiation and chemo will happen on an outpatient basis. If you start too early there is a risk that the surgical wound will re-open.
ppearl__Guest_: what would cause gliomas to grow quickly? Age? We know estrogen receptors can enhance quick growth of AN's... would there be variables to enhance speed of glioma growths, esp. since Sen Kennedy's scan were clean 6 mos ago?
Dr__Andrew_Norden: These are aggressive and fast-growing cancers with many molecular aberrations. We don't know what causes them in the vast majority of cases.
Concerned_Citizen__Guest_: DR, thank you for taking the time. Is it safe to say extracting a Stage 3 or 4 is not an option?
Dr__Andrew_Norden: Depending on the location, in many cases the tumor mass can be removed. However, there are always microscopic bits left behind that require treatment with radiation and chemotherapy.
purpleshamrock__Guest_: With such a fast growing tumor it seems as if surgery or immediate treatments should be started but this doesn't seem to be the case with the Senator being released from the hospital today. Is this normal?
Dr__Andrew_Norden: As I mentioned, he needs to recover from surgery before starting additional treatment. The next steps (radiation and chemo) are administered on an outpatient basis.
winslow__Guest_: How debilitating is the chemotherapy for gliomas in a person of the Senator's age?
Dr__Andrew_Norden: The chemotherapy is well tolerated in most cases. The main side effects are fatigue, nausea, and bone marrow suppression. Older patients may have more fatigue than younger patients, but it's quite variable.
scully__Guest_: What is the next step in his diagnosis? Will they test to determine exactly what stage the tumor is in and whether not it is a 'blastoma?
Dr__Andrew_Norden: Yes, the pathologist is now working to determine the exact subtype. Some molecular studies may also be used to better predict prognosis.
winslow__Guest_: How large is the burr hole for a brain biopsy of the kind the Senator had?
Dr__Andrew_Norden: This information has not been released. If he had only a stereotactic needle biopsy, the hole would be about 1-2 cm in diameter.
ppearl__Guest_: knowing his chemo will be long term, what is the the typical radio protocols in the amt of rads and days of treatment?
Dr__Andrew_Norden: Radiation is typically administered to a total dose of 60 Gray over approximately 6 weeks.
winslow__Guest_: How common is seizure as a first onset symptom of glioma?
Dr__Andrew_Norden: I don't have a number off-hand, but in my practice it is not uncommon. I would estimate 20-40% of cases.
lori_B__Guest_: Since Kennedy's drs did not mention surgery, is it safe to say that's not an option, given the location of his tumor, and that his treatment will just consist of chemo and radiation?
Dr__Andrew_Norden: That may be right, but it's difficult to know for sure. The information that they released was rather limited.
bo__Guest_: on another note - regarding anti-TNF biologic meds such as Remicaid ...would you comment on any cancer instances associated with being on this med
Dr__Andrew_Norden: There have been some associations between these treatments and cancers, mostly lymphoma I believe, but there is no association with brain cancer that I'm aware of.
winslow__Guest_: The Senator's two biological children have both had cancer--his son a sarcoma and her daughter lung ca. Does this suggest genetic links?
Dr__Andrew_Norden: Interesting question. The vast majority of gliomas are not hereditary. Families with hereditary syndromes typically have many more affected members than you have mentioned.
ppearl__Guest_: knowing the type of protocols used now for cases such as the senator's, what about advances in treatment options for astrocytomas? My interest is in malignant childhood astrocytomas
Dr__Andrew_Norden: Malignant childhood astrocytomas are probably biologically different than adult tumors. There have been many advances in recent years. The most important ones clinically have been the introduction of oral chemotherapy, temozolomide, and the use of anti-angiogenic therapies for recurrent tumors.
subsub__Guest_: Do you happen to know if there are any promising treatments in the pipeline for relapsed Central Nervous System (CNS) lymphoma?
Dr__Andrew_Norden: There are. Temozolomide and rituximab are two of them, but there are others as well.
sregis__Guest_: dr norden- could you discuss some of the cutting edge therapies for glios? and because this is such a deadly cancer, please include any alternative/complimentary therapies that might help one's own body beat back the disease. thanks
Dr__Andrew_Norden: We are increasingly using "targeted molecular therapies" for gliomas. These are drugs that target specific molecular changes in the tumors. Also quite promising are treatments that target blood vessels, called anti-angiogenic therapies. At the moment, I am not aware of any alternative therapies that help to treat the tumors, but these treatments (e.g. acupuncture, massage, others) are very useful for management of symptoms such as nausea, fatigue, and headaches that some glioma patients experience.
5Strings__Guest_: Do Gliomas - or other brain malignancies - give-off any measureable unique enzymes that a test could be developed to detect, just like PSA for Prostate Cancer?
Dr__Andrew_Norden: This is an area of active research. So far, the answer is unfortunately no.
ali__Guest_: are there any dietary recommendations for folks with stage 3 and 4 gliomas? any supplements that have proved useful in slowing regrowth?
Dr__Andrew_Norden: The short answer is no. It's important for patients to maintain a normal, healthy diet, and to exercise. No supplements have proven useful.
subsub__Guest_: Systemic rituximab or intrathecal?
Dr__Andrew_Norden: There is interest in both approaches. I presume you're still talking about CNS lymphoma.
ali__Guest_: at what point in treatment do you jump in with experimental meds?
Dr__Andrew_Norden: Patients with gliomas may be eligible for clinical trials of experimental medications at the time of diagnosis. The Senator, in fact, may be eligible for trials if he is interested right now. Trials are also available at the time of a recurrence.
ppearl__Guest_: (just a thank you dr for taking the time to answer questions today... most helpful and appreciated)
Dr__Andrew_Norden: You're very welcome.
wonka__Guest_: How much time does Senator Kennedy have???? does his age impact his recovery process
Dr__Andrew_Norden: It's difficult to know for certain without knowing the subtype of malignant gliomas. In general, survival is in the range of months to a few years. On average, older patients do not have as favorable survival.
subsub__Guest_: One more question about CNS lymphoma (my husband has it). Do you recommend maintenance therapy even when there is no sign of the cancer?
Dr__Andrew_Norden: This is an area of great controversy. I do believe in it, yes, but many thoughtful neuro-oncologists do not.
john__Guest_: Are treatment options (chemo) different for stage 3 and stage 4 gliomas? Do experimental trials focus on both?
Dr__Andrew_Norden: The treatment options are similar, but for some subtypes of grade III tumors, a different approach (e.g., chemotherapy alone) may be considered in some circumstances. Most clinical trials are intended for grade IV tumors. There are a smaller number of clinical trials for either grade III or IV tumors, and even fewer for tumors only of grade III.
ali__Guest_: Dr. Norden, I've read a bit on some clinical trials and outcome but never seem to find negative side effects from those treatments? why wouldn't folks just throw everything at it that's available with relative safety ?
Dr__Andrew_Norden: Your thought is reasonable. Unfortunately, all of the treatments that have ever shown any activity against gliomas do have side effects, sometimes serious ones. Combining many therapies at once may be effective against a tumor but often results in unmanageable toxicity.
bos__Guest_: Can you comment on brain mapping and its significance in outcomes of surgical resection for brain turmors?
Dr__Andrew_Norden: Brain mapping is assuming an increasingly important role in safely taking out brain tumors. Whether this will translate to a survival benefit for patients is currently unknown. This is an area of active investigation.
sregis__Guest_: dr norden- in light of the fact that traditional chemo/radiation therapies have proven to have very modest results at best for stage IV glioblastoma, what is the harm in trying alternatives outside the mainstream? it seems to me that after as much of such a tumor has been eliminated via surgery, chemo and radiation, perhaps the ONLY hope would be the body's own defenses.
Dr__Andrew_Norden: Since I have limited knowledge about alternative treatments, I can't speculate on what the harm may be. Many of my patients do seek alternative treatments, and I support them in doing so. That said, my knowledge of them is insufficient to recommend them or prescribe them.
FoodCritic__Guest_: How much do the medical community know or confirm that any brain disease include cancers and alzheimer are related to heavy metal from food?
Dr__Andrew_Norden: I am not aware of any convincing evidence that brain cancer is caused by heavy metal. I don't know the Alzheimer's literature.
winslow__Guest_: Is it reasonable to expect someone undergoing treatment for an advanced, aggressive glioma to continue a normal work schedule? We all hope for the best for Senator Kennedy. But if you had a patient with extraordinary responsibilities and a busy professional life would you advise they start planning to modify their schedule?
Dr__Andrew_Norden: Some of my patients are able to maintain very busy schedules during treatment. Most of my patients though experience fatigue that prompts them to cut back. I advise my patients to plan for a significant reduction in work hours.
ali__Guest_: you're so kind to be doing this! what about Bevacizumab as a chemo agent - does it repalce temozolomide or work wit it?
Dr__Andrew_Norden: Bevacizumab is one of the anti-blood vessel therapies I mentioned. We are using it increasingly for patients whose tumors progress despite temozolomide. There are clinical trials ongoing now in which it is used in conjunction with temozolomide and radiation for newly-diagnosed tumors.
W_MBETTERTHANBROWN__Guest_: Brain tumors are insane - just like Jodichy Goodman
Dr__Andrew_Norden: How you got here I cannot imagine
Dr__Andrew_Norden: I don't know the average doubling time. These tumors can double in size on MRI scan over a few weeks' time in some cases.
ali__Guest_: if one does not live near a hospital offering trials can they receive the "stuff" and plan from DF for example but in their own area?
Dr__Andrew_Norden: Unfortunately, clinical trials require periodic visits to a cancer center, sometimes as often as weekly, sometimes monthly or less often. It varies from trial to trial.
john__Guest_: Does the pathology of GBM differ greatly, so that you would prescribe different experimental treatment options?
Dr__Andrew_Norden: No. Glioblastoma (grade IV gliomas) are treated in standard fashion with chemotherapy and radiation.
FoodCritic__Guest_: How much of the brain is saturated fat? Modern diet is heavy in poly-unsaturated fats from veggie oils. Do you think consuming more omega-3 saturated fats is vital to fight or prevent cancers from developing.
Dr__Andrew_Norden: I don't know the answer. I think it's doubtful that any dietary change will substantially impact the risk of brain cancer.
sregis__Guest_: dr norden- there are a handful of long-term glio survivors...how does the medical community explain this? have there been any studies or analyses of them?
Dr__Andrew_Norden: This small population is of great interest. I'm not aware of any studies that identified an obvious explanation for their long-term success. Sometimes, unfortunately, these patients have been found on subsequent review to have been diagnosed erroneously.
winslow__Guest_: What do you tell patients who are receiving a diagnosis as devastating as the Senator's?
Dr__Andrew_Norden: It's a difficult conversation, of course. I focus on the fact that treatments are constantly improving and that I will help the patient through the difficult road ahead.
ali__Guest_: if stage IV gliomas can return so quickly (few weeks) are MRIs done every few weeks?
Dr__Andrew_Norden: As long as a patient is doing well clinically, we repeat MRIs every 8 weeks. Otherwise, we may do them more frequently.
5Strings__Guest_: How hard is it to get the chemo drugs across the blood-brain barrier? It must be difficult to determine the extent of down-regulation and effectiveness other than just taking pictures every once in a while.
Dr__Andrew_Norden: Some chemotherapy drugs like temozolomide readily penetrate into the brain tissue. Others do not. This is a major issues that drug development chemists have to consider.
winslow__Guest_: You sound like a wonderful doctor.Thanks for participating in the forum
Dr__Andrew_Norden: Thank you.
W_MBETTERTHANBROWN__Guest_: Is there any way to determine whether you have a brain tumor (or any other tumor for that matter) before the symptons that the Senator experienced? Headaches? Blood tests? You truly sound like one of the greatest neurologist around -- we applaud your efforts.
Dr__Andrew_Norden: Unfortunately there is no good test available at this time, and symptoms can be highly variable. Thankfully tumors of this sort are very rare. Thanks for the compliments.
5Strings__Guest_: Has there been a measurable survival benefit to the current drug therapies?
john__Guest_: How do you give patients hope?
Dr__Andrew_Norden: I focus on the emerging research and new drugs. And if all of our treatments fail, I focus on helping them to achieve a good death.
FoodCritic__Guest_: Sorry to be so food-centric. The way I see it one gets cancer from four avenues...hereditary/food/environment/sex...which do you think is the most certain of causes of brain tumors?
Dr__Andrew_Norden: I don't know the answer, I'm sorry.
sregis__Guest_: dr- you say: "it's doubtful that any dietary change will substantially impact..." yet you use the words "doubtful" and "substantially". for GBM patients given months to live, perhaps some lifestyle considerations deserve more attention and study?
Dr__Andrew_Norden: I agree.
winslow__Guest_: What IS a good death after one has been through so much treatment?
Dr__Andrew_Norden: This is different for every individual patient. I try to work with patients to figure out their own answers, and then we strive to make it possible.
Dr__Andrew_Norden: I'm afraid I have to stop at this point. Thanks very much for your excellent questions.