Dr. Nayak is a neuro-oncologist in the Center for Neuro-Oncology at Dana-Farber. Dr. Nayak focuses on primary brain and spinal cord tumors as well as neurologic complications of cancer and paraneoplastic syndromes. Click here for Dr. Nayak’s bio. To learn more about the Dana-Farber Center for Neuro-Oncology click here.
There are many different kinds of primary brain tumors and they are classified by the type of tissue in which they begin. The most common brain tumors are gliomas, which begin in the glial cells located in the brain that perform supportive functions for the cells that conduct neural impulses. There are also many types of non-glial brain tumors that arise from other types of cells in the brain; however, most of these tumors are rare. Understanding treatment options, the role of different doctors specializing in the treatment of brain cancer, and how and when to access new and innovative cancer treatment options available through clinical trials is essential in order to achieve the best outcome from cancer treatment.
Question about what is being done to improve outcomes in brain cancer.
Question: My son Jonathan passed away from Glioblastoma Multiform at the age of 6. We were told then there hasn’t been any progress in treatment in 15 years! Why? Is treatment better now? Why isn’t Brain Cancer talked about at much as breast, prostate etc..?? What can we do to increase both funds, awareness?
Response: I am very sorry to hear about the passing of your son, Jonathan. There has been progress in the understanding the biology of glioblastoma (GBM) as well as in its treatment in the last 10-15 years. In 2005, FDA approved temozolomide (Temodar) for newly diagnosed GBM, and in 2009 bevacizumab (Avastin) was approved for recurrent or progressive GBM. GBM was the 1st cancer that scientists studied to assess the cancer genome as a part of “The Cancer Genome Atlas” (TCGA) project, and the results of this study were reported in 2008. These and other important studies have helped us recognize that glioblastomas are a heterogeneous group of tumors with molecular subclasses. More studies are in progress and we hope to be able to stratify treatments on basis of these different subtypes, and individualize treatments. While it may seem that progress has been slow and has not changed outcomes for our patients dramatically, we are moving at a much more rapid pace than before, and the future seems promising.
Having said that, despite these advances, we are not close to finding a cure, and significant amount of work still needs to be done. You are absolutely correct; it is indeed true that GBM is considered a rare cancer and therefore is not talked about as much as others like breast, prostate or lung.
Dana-Farber Cancer Institute has established the Adolescent and Young Adult (AYA) Neuro-Oncology Program to cultivate research and bring highly specialized care to adolescent and young adult patients (ages 15-39) diagnosed with central nervous system (CNS) malignancies, including brain and spinal cord tumors.
The AYA population is recognized by the National Cancer Institute as facing critical, age-related challenges in cancer care and research. While cancer survival has significantly increased in children and older adults across various malignancies, cancer survival in the AYA population has not increased substantially.
The AYA Neuro-Oncology Program aims to improve outcomes of AYA patients with CNS malignancies by leveraging the medical expertise of adult and pediatric neuro-oncology providing AYA-specific service and resources and fostering clinical and translational research. With the combined resources of Dana-Farber/Brigham and Women's Cancer Center and Dana-Farber/Boston Children's Cancer and Blood Disorders Center, this program gives patients access to a multidisciplinary team of experts, with the goal of providing the best care for our adolescent and young adult patients. To learn more about the program from a patient's perspective, click here. Our team looks forward to partnering with you and welcomes the opportunity to discuss any patient you feel may benefit from this program. For second opinions or to refer a patient, please email NO_AYA@dfci.harvard.edu, or call 617-632-2680.
Question about CNS NHL
Question: Is there anything new for the treatment of CNS non-hodgkins Lynphoma, large diffuse B cell?
Response: There has been certainly progress beyond treatment with high-dose methotrexate (HD-MTX) for CNL lymphoma. In general, for newly diagnosed CNS lymphoma, HD-MTX based chemotherapy forms the backbone of treatment. In the past high-dose whole brain radiation with HD-MTX has been the standard of care. In the last several years, treatments have evolved to prevent neurotoxicity or late side effects of the combination of radiation and HD-MTX. More recently, trials have shown that high dose chemotherapy followed by autologous stem cell transplant is very effective in not only increasing progression free survival and overall survival rates, but also with a reduced risk of neurotoxicity which is quite common with whole brain radiation especially as age advances. The current ongoing trials in newly diagnosed CNS lymphoma are addressing the question of whether whole brain radiation is necessary for consolidation and/or comparing radiation to high dose chemotherapy and transplant to see which is better and with fewer side effects. At the same time, there has been significant progress in the understanding of the biology of systemic large B-cell lymphoma and many novel drugs are currently being tested. Some of these agents are able to enter the brain. In recurrent primary CNS lymphoma recent trials are focusing on targeted agents and immunomodulatory drugs (IMiD).
Question about radiation necrosis
Question: Is there any place I can find information on radiation necrosis, it would be so helpful to plan or anticipate our life. We have gate, memory and reasoning problems from whole head radiation and we are 16 year out. Wouldn’t trade our 16 years but this has been so hard on my husband. Being so dependent, he hates his life. If I could have a sense of the process of this then maybe I could prepare him and myself for the coming events.
Response: It seems based on the symptoms and history you have provided, that what your husband is likely suffering from is late effect of radiation. You mention radiation necrosis. Is this something that they have seen on the MRI? It would be helpful to know what type of brain tumor Tom suffers from.
Radiation can cause side effects at different time points: Early effects, like headache, confusion, memory problems etc. can occur soon after radiation or within months. These often resolve and respond to treatment. Delayed effects that occur years after radiation may be difficult to treat. One thing to check for is hydrocephalus or enlarged ventricles on MRI. Patients present with hydrocephalus can have gait imbalance (walking difficulty/falls), memory problems and/or urinary incontinence. If that is the case, this may be treatable by means of a surgical procedure called ventriculoperitoneal shunt, where the cerebrospinal fluid is diverted in to the abdomen (belly). This helps in relieving the pressure from the fluid inside the ventricles, and patients are able to make a recovery. If this is not the case, it may be another long-term side effect of radiation that is in the form of memory and gait problems. It may be helpful to be assessed by a physical therapist to help with the walking/gait. For memory, evaluation by a neuropsychologist is helpful to determine exactly what aspects of memory are affected and then get cognitive rehabilitation for those specific problems. There are now several centers with doctors that perform this test, and some rehab centers that offer cognitive therapy.
Question about GBM Recurrence
Question: Does first time glioblastoma ever NOT come back after surgery, radiation and Temodar?
Response: Unfortunately, first time or newly diagnosed glioblastoma (GBM) does recur in most patients after maximal surgery, radiation and chemotherapy. However, we now know that GBM is a heterogeneous group of tumors (it behaves differently in different people) and the time when it comes back or recurs can vary. In majority of the patients it has a tendency to recur within 6-8 months. However, this can either be shorter or longer in a small proportion of patients.
Question about duration of chemotherapy
Question: Is there any value to continuing Temodar after the year regimen?
Response: In large studies that have evaluated the role of temozolomide (temodar) in GBM, patients stopped treatment at 6 or 12 months. We do not know of a definitive benefit of continuing temodar beyond 12 months due to lack of published data from large studies. However, some practitioners do choose to continue it in patients that have response and have no side-effects from it. If this is done, one should take into consideration potential long-term side effects of temodar.
Question about IDH 1 enzyme
Question: Can you say a little about the value of having the IDH 1 enzyme and accompanying genetic marker in first time glioblastoma?
Response: IDH stands for isocitrate dehydrogenase. Mutations in the gene IDH 1 and 2 are commonly found in lower grade gliomas, for example, grade II or grade III gliomas, and rarely in “primary” glioblastoma or grade IV glioma. When we see IDH 1/2 mutations in a newly diagnosed GBM, it is thought it may have transformed from a previously lower grade glioma. We anticipate the development of drugs targeting IDH 1/2 in the near future, and this may be of relevance from a treatment standpoint in patients that have gliomas with IDH 1/2 mutations.
Question about nutrition and brain health
Question: Can you point to any peer-reviewed articles on diets or foods that support brain health?
Response: Articles published in the American Journal of Clinical Nutrition would be reliable and helpful to read. If you read of any trials that were conducted, please check and make sure they are registered in www.clinicaltrials.gov
Most major cancer institutions have a dedicated integrative medicine department that will have nutritionists who can help guide and make individualized plans. There are typically several aspects to consider regarding diet and supplements for brain tumor patients, and it is helpful to get advice from a nutritionist who is familiar with this.
Question about headache pain management
Question: I am hoping that you might have a suggestion for headaches from GBM. My husband is 69 was dx with GBM IV end of October 2012 removed 99% of 5cm tumor and placed glio wafers. Did 45 rounds of radiation along with Oral Chemo Temodar. No regrowth on any new MRI, off all decadron steroids, just double dose of Temodar 280 Mg , Keppra twice a day (never had a seizure), and 20 mg of Celexa for depression. But has headaches every day. Our doctor has him on Vicadin for the pain of the headaches. Any other suggestion to manage his headache pain better?
Response: Currently there are several medications that are available to help manage headaches. In general headache medications of are two types: 1. Abortive Treatment: To abort/eliminate the pain immediately when the patient has a headache 2. Preventive Treatment: To prevent the headache from occurring. In brain tumor patients headaches may occur for several reasons, and the headache management differs based on the cause. Does your husband have a prior history of headaches pre-dating the dx of GBM? In some patients these can get worse with brain tumors. Another question is, if there is swelling on the MRI since he is off all steroids. If he has daily headaches it is probably better for him to be on a preventive medication with rescue medication to be taken as needed. The choice of preventive medications can be made by the neurologist/neuro-oncologist taking care of your husband based on the detailed history of the headaches and other co-morbidities he may have. One thought might be to increase the dose of celexa. Celexa is thought to work for pain as well as for depression. If the dose can be safely increased, that might be worth trying. For immediate relief, if vicodin doesn’t seem to work well there are other types of similar medications that could be tried for aborting headaches. If he is on temodar, NSAIDs and aspirin like drugs should be avoided as they can interfere with platelets.
Question about prognosis
Question: Does anyone ever come back from GBM without surgery being part of the treatment? One doctor has given my wife 3 to 6 months with the radiation and chemo. Is that all we can expect?
Response: All patients would require at least a biopsy to make the diagnosis of GBM. While MRI characteristics can be very helpful, it is preferable to have pathological diagnosis. Part of the first step for treatment of GBM is maximal safe resection/surgery. However, if the tumor is in an eloquent location, for example language area or a part of the area that controls movement or vision; or if the tumor is very deep in location; or if the tumor is in multiple areas of the brain; then it may be considered unresectable in which case surgery cannot be performed safely. These are the circumstances when surgery is not a part of the treatment. The average survival of patients with GBM is about 18 months with treatment. There are some patients that do better and some others that do worse. There are various factors which determine this. It is rather difficult for me to comment on your wife’s prognosis without having more details of her case.
Question about Avastin and data presented at ASCO
Question: I read something about the RTOG 0825 and AVAglio trials at ASCO- does this mean that Avastin doesn’t help?
Response: RTOG 0825 and AVAglio assessed the role of bevacizumab or Avastin in newly dx GBM and both studies showed that there was no difference in overall survival (OS) whether Avastin was used upfront (at the time of initial diagnosis) or in the recurrent setting (when the tumor came back). This does not mean Avastin doesn’t help. In fact, both studies demonstrated an improvement in progression-free survival (which is very important in an infiltrative, destructive cancer of the brain) but unfortunately did not demonstrate an overall survival benefit. In both studies, a significant percent of controls (patients that had not received Avastin and received placebo instead) crossed over to Avastin, and it is unclear if this had any impact on the OS endpoint. Thus, the data from these trials suggested that it may not necessarily be helpful to use it from the beginning and that it may be preferable to reserve it for when the tumor comes back. When Avastin was initially approved in 2009, it was for treatment of recurrent GBM. Since the responses were so dramatic, it was expected that utilizing it in the upfront setting (at the time of initial diagnosis) would be even better and more beneficial. Unfortunately this did not hold true based on these 2 trials. It is the opinion of several clinicians and our experience that Avastin may be helpful in a select population of newly diagnosed patients with bulky unresectable or multi-focal tumors, as it was shown to prolong neurologic preservation and decrease/eliminate the need for chronic corticosteroid dependence which are factors that impact quality of life.
Question about clinical trials
Question: If I am newly diagnosed with GBM– should I look at clinical trials or save that for an option if (when I am told) I have a recurrence?
Response: Clinical trials are available at different time points; in the newly diagnosed setting, when the tumor is stable on adjuvant temodar (temozolomide/TMZ), in the recurrent setting before bevacizumab (Avastin), or in the recurrent setting after bevacizumab (Avastin). The decision regarding opting for a clinical trial in the upfront setting versus at recurrence ultimately depends on several factors. It may depend on what clinical trial you are considering, how it affects you and your quality of life. In general we can say that the standard treatment in the upfront setting which is radiation and TMZ is known to work however recurrences occur in almost all. The advantage of a clinical trial in the upfront setting is adding another drug to the standard treatment (that is radiation and TMZ) so as to delay the recurrence. This may seem like an attractive strategy for some. However some others might think that they would rather choose to go on the trial when the tumor comes back. It is definitely reasonable to look around and see what your options are and then make a decision after weighing the pros and cons. Clinical trials are generally involved and require significant amount of time commitment on the part of the patient. There is a possibility that the patient may develop side effects some of which may be serious and there is also a possibility that the investigational agent may not work. These are potential considerations.
Question about neuropathologist
Question: Is it important for a neuropathologist to look at my pathology? Maybe I have been googling too much and it doesn’t matter. Thank in advance for your information.
Response: Glioblastomas are rare tumors and it would be ideal for a neuropathologist who is familiar with looking at these types of tumors to review the pathology. I would definitely encourage review by a neuropathologist if it has not been done so. I would suggest this be done in a large academic institution or cancer center with a division of neuro-oncology that has a dedicated neuropathologist.
Question about valganciclovir
Question: I was reading recently about valganciclovir– can you explain what this means to GBM patients?
Response: These data are exciting and compelling but retrospective, and therefore need to be validated prospectively before this can be widely recommended for all GBM patients. Major additional unanswered questions also need to be addressed if these preliminary data hold up including dosing schedule and duration, and whether certain patient subsets benefit/don’t benefit.
Question about astrocytoma and GBM
Question: What is the difference between an astrocytoma from a GBM? New to all of this and trying to educate myself.
Response: Both astrocytoma and GBM are primary brain tumors. Primary brain tumors are those that arise directly from the brain (do not spread from other parts of the body). The most common primary brain tumors are gliomas. Gliomas may be of types such as oligodendrogliomas, astrocytomas, and occasionally mixed oligoastrocytomas. Gliomas occur in 4 different grades (based on how aggressive they look on pathology : grade I to grade IV; grade I being the least aggressive, grade IV, the most aggressive- with a tendency to grow rapidly and recur). An astrocytoma can be of any grade, ranging from I-IV. Typically, glioblastomas correspond to grade 4 gliomas.
Question about diagnosing a cyst versus a tumor
Question: My question is the following. How can you make a differential diagnosis between pineal gland cyst and pineal gland tumor with a contrast MRI image?. What other tests would be necessary besides imaging longitudinally to assess growth?
Response: An MRI may be able to differentiate between a pineal gland cyst and tumor; a contrast image may not be necessary for repeat imaging (particularly if it is a benign cyst), but very helpful in making a differential if unusual enhancing patterns are seen. It is standard for most neurologists/neuro-oncologists/neurosurgeons to order MRI with gadolinium-contrast as it adds to our knowledge and interpretation of the scan. The scan should be repeated every few months; if there is no change it is likely pineal cyst or a benign lesion. Benign pineal cysts grow slowly if at all. MRI is by no means a definitive diagnosis, but based on MRI characteristics and symptoms the decision to watch expectantly may be made. If there are unusual features, spinal tap and analysis of the cerebrospinal fluid may be beneficial. Also, a type of pineal tumor called germ cell tumor can present as cysts on MRI. Typically imaging is the best modality to assess growth/stability; clinical follow up and symptoms may be helpful, but usually mean the lesion is large and pressing on structures.
Question about duration of therapy, vaccine therapy, and hyperthermia
Question: My question concerning my father, mr. Nikos, age 56, diagnosed 2 years earlier with glioblastoma multiforme, right frontotemporal. He suffers NO neurological deficit. His treatment so far:
-1st surgery, Rdt, temozolamide x 14 cycles
-new progression after 1,4 years next to the first lesion(satellite tumor)
-2nd surgery, AVASTIN/irrionotecan.
We have now completed 7 cycles of AVASTIN/irrinotacan and the new MRI is good, the enhancements of gadolinium are less. We are in remission! I want to ask 3 questions:
- How long will my father undergo this therapy? until a new progression? what will be the next step according to your experience? I mean after temozolamide and Avastin are ”burnt”.
- What about the vaccines with the dendritic cells? I know they are still on clinical trials but we can have access to some of them.
- Last but not least, we have rejected cyber-knife due to the infiltrative character of the tumor but we are thinking about hyperthermia. Have you heard of that? Is it effective or better, does it worth the effort?
Response: I am happy to hear your father is doing well neurologically and in remission on the current treatment.
There are no standardized guidelines for how long to continue avastin and irinotecan. In general most clinicians/patients continue treatment until there is a progression. I typically stop treatment after 12-18 cycles. However, if there are no side effects another option is to continue the treatment indefinitely, and there are practitioners who do so. After TMZ and Avastin have stopped working, there are no standard treatment options. In general we consider patients for clinical trials. Off label use of carboplatin or etoposide in combination with bevacizumab (avastin) could be tried if there are no clinical trial options.
I would suggest vaccine with dendritic cells only in the setting of a clinical trial and not otherwise.
Study suggests Jakafi not associated with increase in significant secondary malignancies.
Study suggests Jakafi not associated with increase in significant secondary malignancies.
Cancer & COVID-19 - What You Need to Know During the "COVID" Era
What you need to know to reduce risks and receive optimal diagnosis and treatment during the COVID-19 pandemic.
I agree, cyberknife is not useful in GBM due to its infiltrative nature. I have heard of hyperthermia, but I have no personal experience with it and have not had any patients who have received this either. Since it is experimental, I am unable to comment on whether it is effective or better.
Question about anaplastic astrocytoma
Question: My husband 59 is suffering w/ Stage 3 Anaplastic Astrocytoma. He was diagnosed 7 mo ago, the tumor was de bulked, radiation followed w/ chemo, then chemo once a month.
He just had his Dye enhanced MRI…which showed Radiation Necrosis. From what I’ve read about Radiation Necrosis, it presents similarly if not the same as the tumor w/ out a biopsy very difficult to tell the difference and the treatment is the same.
I’m anticipating his doctor will want to operate and also drain the cyst in the brain’s tumor bed. What are your thoughts on Avastin?
Response: Radiation necrosis or pseudoprogression is often seen soon after chemoradiation, most commonly, within 6 months. In general we suggest surgery only if it is causing significant symptoms to the patient and if these symptoms can be relieved by removing/debulking the tumor. Another reason to do surgery is if there is a question whether it is pseudoprogression or real tumor, as this would change treatment. In general if surgery is not done, temozolomide is continued and typically the repeat MRI in cases of pseudo progression will show improvement. While it can be difficult to tell the difference between real progressive tumor and pseudoprogression on MRI, nowadays there are special tests that can be added to a regular MRI, which can help with this. Some of these tests like MRI perfusion can be done in special centers; some other tests like specialized PET scans for experimental purposes have also been utilized.
If there is a cyst and it is growing larger and causing symptoms, I would suggest you discuss it with the neurosurgeon regarding the decision to operate or watch expectantly.
Avastin is an FDA approved drug in treatment of GBM that has progressed on temozolomide. It can be very beneficial in improving symptoms and shrinking the tumor. But, it also has significant side effects for example, high blood pressure, risk of heart attacks or strokes (higher risk in those that have had it before), higher risk of bleeding (not only the brain but can be anywhere in the body such as nose, hemorrhoids, ulcers, etc), risk of blood clots in legs and lungs, and kidney problems. It is administered through the vein every other week.
Question about genetics and GBM
Question: My father passed away in 1987 at the age of 63 from a glioblastoma. My sister passed away in 2003 at the age of 46 from a glioblastoma. I have a mild chiari Malformation. My daughter had a severe chiari which was surgically repaired.
Is there genetic testing available to test for brain tumors and do you think there is a genetic connection between brain tumors and chiari malformations.
Response: I am so sorry to hear about your father and your sister.
Only a small percentage of GBMs are familial; the majority are not. In your case given that you have 2 family members that passed away from GBM, I think it would definitely be worthwhile to get genetic testing and see a geneticist. Additionally, there is an international effort to identify genes involved in gliomas, and a study called Gliogene is currently underway. Patients with 2 or more family members that have been diagnosed with gliomas are eligible for participation. You can check to see if an institution near you is participating in this important study. If you participate, you will be asked questions and will have to provide a sample of your blood. You can get information regarding this at: www.gliogene.org
Chiari malformations may be “acquired” in some patients with brain tumors or after treatment for brain tumors. Some studies have suggested that Chiari malformations may have a genetic basis due to familial aggregation. They may be associated with some types of defects, but I do not know of a direct genetic link between brain tumors and chiari malformations.
Question about familial risk of brain cancer
Question: If a parent had a glioblastoma multiforme, are their children at greater risk for a brain tumor? Are there any genetic or other tests that his/her child can take to see if they are at risk?
Response: Only a small percentage of GBMs are familial; majority are not. Are there other types of cancers in your family, such as breast or ovarian? If so, I think it would be worthwhile to get genetic testing and see a geneticist. If not, the yield is low.
Question about treatment decision making after progression
Question: Our 18 year old son is 10 months PFS after near total resection of a large GBM that had invaded the corpus callosum. He had RT and continues on TMZ 5/23+avastin. He recently stopped Novo TTF. Are there other treatments he should add now? His tumor was MGMT methylated. Should he continue TMZ beyond a year? Are you supportive of any supplements or off label drugs such as the CUSP 9 protocol? Should we get him back on the Novo TTF? He stopped due to concerns about several seizures that occurred while the device was not on and he wanted to grow his hair for soccer season. We want to remain as aggressive as he can tolerate and so far has not had any problems with his treatment.
Response: If the tumor is stable on temozolomide (TMZ) alone, it is reasonable to continue it without adding anything else. Occasionally there are certain clinical trials that allow for addition of an investigational agent to TMZ in the adjuvant setting when the tumor is stable. This might be a consideration if there are such trials available to you. In general, adjuvant TMZ should be continued after initial chemoradiation for up to 6-12 cycles depending on how well your son is tolerating TMZ. It is reasonable to have stopped the novo TTF due to the seizure concern. I would not suggest going back on it particularly if his seizures have subsided after discontinuing it. In terms of off-label drugs, I would personally recommend not doing so if the tumor is stable. I would suggest trying anything experimental in a clinical trial setting.
Question about prognosis
Question: What are my chances of surviving GBM?
Response: Glioblastoma is a very aggressive tumor with an average survival of 18-21 months with treatments. However, there are patients that sometimes do better than the average, and some others unfortunately do worse. Based on a large clinical trial, 5-year overall survival rate was approximately 10%.
Question about clinical trials after Temodar and recurrence
Question: What clinical trials are available– GBM recurrence after temodar?
Response: Several clinical trials are available in various institutions across the United States. Many trials are now focusing on specific mutations and abnormal pathways in GBM, called targeted agents. A good reliable resource to look for clinical trials is: www.clinicaltrials.gov
Question about anaplastic oligodendroglioma
Question: I was wondering if anyone has chosen not to do radiation and or chemo after diagnosed with anaplastic oligodendroglioma?
Response: I would certainly recommend some form of treatment for anaplastic oligodendroglioma, irrespective of the 1p/19q status, preferably both radiation and chemotherapy, based on the long-term results of 2 large international trials.
Question about getting a second opinion
Question: My husband has cancer of the cerebellum and is getting radiation to make him comfortable. The say he doesn’t have long to live 2 months to a year. Does anyone think we should get a second opinion?
Response: In general, if you are able, it is always helpful to get a 2nd opinion. That way, if you hear the same thing from both doctors, you are satisfied that the opinion is consistent.
Question about getting a second opinion
Question: I was just diagnosed with glioblastoma. Do I have time for a second opinion from a large cancer center?
Response: If you are able, it is always good to get a 2nd opinion from a large cancer center. The recommendation is to start radiation and chemotherapy within 4 weeks after surgery (can be up to 6 weeks in some circumstances). Many cancer centers like Dana-Farber Cancer Institute will offer patients appointments urgently within 1-2 days because we recognize that time is crucial, so you shouldn’t have to worry about time.
Question about reanimation procedures
Question: I had a 5.4 cm. brain tumor removed from my brain stem in Jan. of 2011. They were able to remove most of it. My face has been paralyzed on the left side since. In June I had a platinum chain inserted in my eye lid along with a lift. I am going in on Mon. to find out about surgeries to regain the ability to smile. They are calling these surgeries reanimation procedures. There is no guarantee. What are your feelings on these surgeries? I really want to be able to smile again. I also have many other symptoms such as extreme balance issues, no hearing in my left ear and, cognitive problems. The list is long. Should I do the surgeries?
Response: It is certainly reasonable to consider these surgeries. Some of them are done by neurosurgeons and others by plastic surgeons. I would recommend you seek opinion from surgeons from reputable institutions who have experience doing these surgeries, and ask them directly how many of these procedures they have performed.
Question about glioneuronal tumors
Question: Do you know of any new research on Glioneuronal tumors with neuropil-like islands?
If a small portion of this type of tumor has an MIB-1 index of 7.7%, is it likely to recur?
Response: Glioneuronal tumors with neuropil-like islands are rare tumors. While there have been recent peer-reviewed publications regarding these tumors, most report on 1-5 patients and so unfortunately, not enough is yet known to make a generalization.
There are other features of pathology that need to be taken in to consideration, in addition to MIB-1 labeling index to determine how aggressive a tumor is.
Question about grade 2 astrocytoma and clinical trials
Question: I have a grade 2 astrocytoma. I finished radiation in May. I am wondering if you are aware of any clinical trials for this condition?
Response: There have been a few clinical trials for this condition over the past few years. The clinical trials that I am aware of and are presently accruing patients are at Massachussetts General Hospital (for proton beam radiation – not useful for you, since you have finished radiation already), and vaccine trials at University of Pittsburgh and at University of California, Los Angeles. I believe both vaccine trials exclude patients who received prior radiation and are in newly diagnosed patients. There is a randomized trial conducted by the Radiation Therapy Oncology Group (RTOG) in several institutions across the U.S., studying the effects of radiation alone versus radiation and temozolomide in patients with symptomatic or progressive low grade gliomas. In general, you can search the internet on www.clinicaltrials.gov from time-to-time to see if any new trials are registered there. This is a reliable source.
Question about curcumin and GBM
Question: I have read about curcumin being active in GBM, but wasn’t sure if this was just anecdotal information or actual studies. Can you tell me if there is any evidence that curcumin might help?
Response: Curcumin is the active ingredient in a spice, called turmeric. There have been studies that have assessed the effect of curcumin in cell cultures. Often we see agents/drugs that appear promising in cell lines, but this may not translate into efficacy in people as such. I do not know of definitive evidence that it works.
Most major cancer institutions have a department of integrative medicine. If you are interested in taking it as a supplement, I would suggest you meet with such a doctor from integrative medicine to make sure what you are taking is okay and does not interact with your other medications.
Question about advances in brain cancer treatment
Question: There seems to be some progress being made concerning treatment of brain tumors. Immunotherapy seems to be the hot topic recently. Do you think we will see further advancements in that area or will more treatment options come from a different area?
Response: Immunotherapy is indeed a hot topic in gliomas. This is largely driven by advances we have seen in treatment of melanoma.
The way these drugs work is to release inhibition of the immune system so that the immune cells can recognize cancer cells and attack the tumor . These advances are promising and we hope this avenue of research will soon extend to gliomas. Development of trials in this direction are currently underway and we anticipate the trials will open within the year or so.
In the last few years, we have seen a significant amount of progress in understanding glioma biology, including the mechanisms of tumor growth and resistance to treatments. Current research is focusing on treatment targeting specific pathways. It is difficult to envision which specific pathway or target will reveal the answer. It may be a combination of a few different targeted therapies, rather than one approach.
Question about medulloblastoma
Question: My son was diagnosed with a medulloblastoma in January of 2011. He is now 13. He had surgery, rational at Mass General and chemo. which was completed in March of 2012. He has amazing spirit and strength but occasionally will become depressed with regard to his present physical limitations. He is still making gains with speech, OT and PT. I was wondering if there is any research which addresses how long we could still expect progress?
Response: I am happy to hear that your son has successfully finished treatment and making progress with speech, PT/OT. In general, most young children (like your son) with this tumor tend to recover significantly in terms of neurologic disability. This may take up to a year or so, and in some cases longer. However, it may depend on what kind of and how much disability he has had to begin with. I would highly encourage continuing the therapy.
Question about GBM and quality of life
Question: My 59yo husband’s gbm recurrence after 7 years, after a clinical trial through M.D. Anderson and high-dose Temodar and being on Temodar for 3 years. Tumor is now stable again (2 stereotactic radiosurgery treatments) and back on Temodar. However prior to recurrence diagnosed in May 2013, he walked and had really no problems. Now he cannot even roll over in bed, cannot sit up on his own and has become so disabled in 3 months I am having to get a Hoyer lift to even move him to a portable commode and power wheelchair and use a disabled Handivan for doctor appointments. Is this due to tumor regrowth, location of new tumor or stereotactic treatments? Will he ever get any degree of mobility back? As it stands now, he will never qualify for another clinical trial. Thanks for any info.
Response: I am sorry to hear about your husband’s disability. There may be several reasons why your husband may be so disabled within such a short period of time. It may be that he has hydrocephalus – enlarged ventricles due to increased fluid, which can be seen after treatment over time in some patients; this can lead to problems in walking, in addition to memory issues and urinary incontinence. This can be treated by a simple surgery. If the MRI of the brain looks like there is stable disease and no reason for his deterioration, I would also suggest obtaining MRI spine and potentially a spinal tap to make sure there are no disease/tumor in the spinal cord.
It is difficult to comment on how much mobility he will get back or not without knowing for sure what the cause is. While he is undergoing tests to determine this, I think physical therapy is very important if it is possible.
In terms of clinical trials, there are several factors that come in to play, depending on what type of trial it is, what drug, neurologic status and overall health.
Join the conversation and Connect with others on CancerConnect - the leading social community for advocates, experts, and patients.