Ask doctor Landolfi (Even more)

Disclaimer: These answers express the opinion of Dr. Landolfi and should not be used as a substitution for seeking medical attention for any personal problem.
 
Are ependymomas cancer?

We have heard the following:
- Low grades (1 and 2) are not malignant (so, not cancer?)
- Yes, they are cancer
- No, they are not cancer
- Any growth inside an enclosed area such as the skull is considered "cancer" by it's location.

I am referring to all ependymomas, including spinal cord and brain.

If ependymomas ARE a form of cancer, are they hereditary?

How do we ependymoma survivors answer doctors, insurance, or any other forms that ask "have you ever had cancer?"

Thank you, Dr. Landolfi. This is a question that has generated much message traffic for years. I realize that it is not easy to answer, and that each case is different.

Bruce
 
We don't use the term cancer when it comes to brain tumors because they are unique to themselves. Look at it this way- a benign tumor of the body is one that can be removed and will not come back-thus not cancer. A malignant tumor is a tumor that will come back at some point-thus cancer. For the brain and spinal cord, tumors that grow over decades, like meningiomas, neuromas and pituitary tumors, when removed , may come back, but decades later in most cases, if at all. These can be considered benign and thus not cancer. Grade 1 and 2 tumors, although by some called benign, I call slow growing and if they are hard to control and keep coming back in a short time, are behaving aggressively and I consider cancer(including ependymomas)-but don't use that term. Any grade 3 or 4 is aggressive and synonymous with cancer, although again do not use that term.. For insurance companies, they have their own list of what is considered cancer. Any patient with a tumor that is described in grades should say they have a brain tumor. As you know the tumors may go from one grade to another. If pushed by the insurance company, they should say it is cancer as it may come back . They are not hereditary unless part of a larger syndrome which the patient would be aware of. Dr. Landolfi
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Hi Dr. Landolfi
Here is the next question from the group.

"What are the statistics on recurrence of those who have had radiation versus those who do not?"

 

 
There is no simple answer to this question. There are inadequate numbers and inadequate studies to make an accurate determination. For patients with Grade 3 lesions, radiotherapy is recommended post surgery. The same is true for children with grade 2 or 3. Radiotherapy is also recommended for recurrent Grade 2 lesions, particularly if they can't be resected. Right now the controversy surrounds radiotherapy for adults with initial diagnosis of Grade 2 lesions after resection. There is one paper that compared adults given radiation versus those who did not. These patients had grade 2 ependymomas after surgery. They looked at progression free survival (PFS) and overall survival(OS). This paper found no significant difference between PFS or OS between the two groups. The paper is...A multicenter study of the prognosis and treatment of adult brain ependymal tumors.

Reni M, Brandes AA, Vavassori V, Cavallo G, Casagrande F, Vastola F, Magli A, Franzin A, Basso U, Villa E. Dr. Landolfi
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Hi Dr. Landolfi; Here is the next question from the group. First though, I want to pass on the sincere "thanks" expressed by many of the group members for your assistance.

Can tumor cells spread from the spine to the brain?


We have heard of "drop metastasis", where tumor cells can spread from the brain to the spine, via the CSF. Is the opposite possible? Can tumor cells spread from the spine to the brain?

Thank you (as always)
Bruce

 

The csf is constantly moving so yes it is possible to have cells from spine tumors grow in areas above. Dr. Landolfi

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Hi Dr. Landolfi; Here is the next question from the group. First though, I want to pass on the sincere "thanks" expressed by many of the group members for your assistance.

Is there any correlation between age and the way the tumor grows, or how aggressive it is?

Thank you (as always)
Bruce

 

For some tumors that may be true-like an acoustic neuroma, which can have rapid growth (rarely) in younger patients. Overall there is no difference in the way tumors grow with regard to age. A grade 2 tumor may become a grade 3 sooner in patients over the age of forty than in those younger than forty.. Age may play a role in deciding on how and when to treat these patients. For gliomas, although histologically the same (under the microscope) they can behave differently in children compared to adults, sometimes more aggressive, sometimes less. Dr. Landolfi

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Hi Dr. Landolfi; Here is the next question from the group. First though, I want to pass on the sincere "thanks" expressed by many of the group members for your assistance.

"What enables the tumor cells to grow when they shouldn't? Is DNA messed up? Is the "growth signal" not turned off? Is there a measurable chemistry in the body, or other cells which are "abnormal" in tumor patients, such as elevated levels of copper in the blood, or increased levels of inflammation, etc? Essentially, are there any markers of ependymoma aside from the tumor itself in the body, and could any of these be an avenue to attack the disease?


Thank you (as always)
Bruce

 

TUMORS GROW BECAUSE OF REGULATION PROBLEMS. SOME GENES ARE TURNED OFF, OTHERS TURNED ON WHICH ALLOWS TISSUE TO GROW ABNORMALY TO BECOME TUMORS. WHAT PROMPTS THE INITIATING EVENT IS UNKNOWN. THERE ARE NO ABNORMALITIES IN THE BLOOD THAT CAN BE MONITORED AS A MARKER. THE COPPER IS DONE BY NUTRITIONISTS BUT IS NOT A MARKER. IT HAS BEEN FOUND THAT THERE IS INCREASED COPPER IN SOME GLIOMA TUMORS. SOME SPECULATE THAT THIS MUST MEAN COPPER IS CAUSING OR FEEDING THE TUMOR AND NUTRITIONISTS HAVE TOLD PATIENTS TO DECREASE THEIR INTAKE OF COPPER. FURTHER PUBLISHED DATA SUGGESTS THE COPPER IS DETRIMENTAL TO THE TUMOR WITH OUR OWN BODY LIPIDS PROTECTING THE TUMOR. I DO NOT SUGGEST INCREASING BODY COPPER AS THIS WOULD CAUSE OTHER PROBLEMS. THERE ARE SOME MARKERS FOR CERTAIN TUMORS BUT NOT FOR EPENDYMOMA. Dr. Landolfi

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After XXX years of survival, Do we still need MRIs?

We have heard ...Several of our members (myself included) have been told (by doctors) that, "After XXX years of survival, you don't need any more MRIs". Is this true? If it is, what is that period of time? Why do some doctors feel this way, while others feel MRIs will be required for the rest of one's life?

Thank you (as always)
Bruce

 

I can't say why they say or feel that way. I don't. Patients with brain tumors should be followed with lifetime MRI/CT even if the interval is extended to every 5-7 years as recurrance is always possible. In addition it allows detection hopefully prior to symptomatology. Only a few tumors (meningiomas/acoustics)after treatment and no change for five years may not have to be followed. Dr. Landolfi

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This weeks question deals with radiation - that is the prescribed treatment after surgery for many of us

What are the problems, and why can they occur years after cranial radiation? After how many "dormant" years can these affects appear?

Thank you (as always)
Bruce

 

 

There are early, delayed and late effects of radiation. They occur because radiation is damaging to the dna of normal brain cells as well as to the bloprod vessels of the brain.

Early(while on treatment) effects may be swelling.

Delayed(months to a year after treatment) may be memory problems,, confusional stateseven stroke (occurs with whole brain radiation, not the focal radiation many of you receive)

Late(years later) effects can also be memory trouble or something called radiation necrosis-where the tumor cells are replaced by dead tissue, this can cause swelling and sometimes needs to be removed surgically if it does not respond to steroids. This occurs and average of 18 months after treatment. Dr. Landolfi

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Are ependymomas slow growers? What constitutes a "slow grower"? 5 years? 20 years?

Thank you (as always)
Bruce

 

Low grade ependymomas are slow growers- they have a low mitotic (cell division) rate. Anaplastic ependymomas have a higher rate. Time of recurrance is not considered in this determination, only what the neuropathologist determines from the tissue. Dr. Landolfi

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How common is the "Nerve Mapping Technique"?, what is it's purpose, and how effective is it in limiting nerve damage?

We have heard ...Some neurosurgeons use "nerve mapping" when preparing to enter the brain.

Thank you (as always)
Bruce

 

It is not very common and done at select places throughout the country that specialize in treating brain tumors. We have the capability at the Neuroscience Institute. There are two principle MRI scans-the diffusion tensor imaging (DTI) which can literally map out critical pathways of the brain (neurons) and functional MRI where we can test and map language, motor activity and sometimes memory. The purpose is to determine if critical pathways are involved with the tumor or pushed away. It is very effective in limiting damage, as is awake craniotomy, particularly when we are concerned with language function. It can mean a tumor described as inoperable may actually be operable (we have had several cases like this) or the difference between able to function normally or not. Dr. Landolfi

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What are the classes of drugs that can be used to control muscle spasticity (and neuropathies), and what are the names of the drugs in each category?

We have heard ...that there are several classes of drugs and about 15 drugs between these classes of drugs.

Thank you (as always)
Bruce

 

I am not familiar with the classes. Typically one can use benzodiazepines like valium for spasticity. With newer drugs like Baclofen (a gaba agonist) and Xanoflex, we don't use valium. A drug called Dantrolene can also be used but has the side effect of muscle weakness because it works on the muscle itself. The others are centrally acting in the nervous system. I prefer baclofen, also called liorasol. For local muscle spasm-a injection of botulism toxin can be effective for months. Dr. Landolfi

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Upon recurrence, do ependymomas return as a higher grade? If so, why?

Thank you (as always)
Bruce

 

Low grade tumors may enlarge without changing grade. Upon recurrence, tumor may return as the same grade or more commonly as a higher grade. Typically when the appearance on MRI has changed (for example, picking up contrast), the tumor is a higher grade, but not always. For this reason it is important to get further tissue-biopsy or reresection. Dr. Landolfi

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What is the difference between encapsulated and un - encapsulated tumors?

Thank you (as always)
Bruce

 

There are few true capsules. Ependymomas that grow rapid can appear to be round and be well demarcated like they have a capsule. It means the surgeon can find a plane between normal brain and the tumor. The same is true for other tumors like gliomas. Mostly they are infitrative. Tumors like meningiomas can be encapsulated depite the fact that they are slow growing. They are outside the brain and put pressure on the brain. When they are malignant they can infiltrate the brain and thus no clear plane. Pilocytic astrocytomas can have a cystic component and are encapusulated with a very clear plane. Dr. Landolfi

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This week, I am going to ask you ask you about post tumor pain, and treatment for it. One person in particular had a spinal tumor removed (C-5), and is on a daily pain medicines. It has been noticed that the intensity of the pain increases with stress, too much physical activity, cold weather, and other things. Is this pain to last forever? And, what medication or therapy might be prescribed in this situation (that is known to work)?

Thank you (as always)
Bruce

 

There are various pain syndromes. Patients may develop headache, particularly migraine, after craniotomy. Spine tumor patients develop neuropathic type pain. This is typically a constant burning type pain. they can also develop neuralgia or radiculopathy ( sharp shooting pain). Neuropathic constant burning pain is best treated with medications like elavil or pamelor at low dose (anti depressants). They also treat migraine. Neuralgia pain is best treated with anticonvulsants like tegretol, topomax, neurontin. Sometimes these work for neuropathic pain as well. A new medicine called lyrica is approved for a certain type of neuropathic pain but can be tried in all. (I will be away until the 24th of april so I won't be around next week to answer a question. home improvement time.) Dr. Landolfi

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What are the differences between cyberknife and gamma-knife? Is one better than the other? Why?

Thank you (as always)
Bruce

 

This is not going to be a short answer. Radiosurgery is a single session stereotactic(using points of reference to direct the beam)radiation treatment directed at a particular lesion. If more than a single session, it is stereotactic radiotherapy. It can be done to the head, lung, liver, etc.

There are several machines available. Most are developed from linear accelerators ( a regular radiation machine used routinely for whole brain or conformal radation; also used for the body. They put an adapter on the machine so they can get a single beam of focused radiation to treat a lesion- thus, radiosurgery. In order for the fine beam to treat an entire lesion, the patient (on a bed gantry), the machine, or both must be moved about. Cyberknife is based on linac technology. There is a single beam delivered to the leaion and the machine moves around the patient to treat the whole lesion. The patient does not move. They wear a plastic mask over their head to attempt to keep the head still during treatment so the correct area is treated. They have an accuracy of .9 - 1.3 mm. Because the power sources (radiation sources) of the machine are weak compared to other technologies, the treatemtnt can last several hours. At times the physicians will be forced to spread the treatment over several days(fractionation)- thus no longer stereotactic radiosurgery, but rather stereotactic radiotherapy. Since there is no frame to keep the patient still, the machine checks the patient position and ten seconds later delivers the dose. I feel this is a significant amount of time where the patient can move. In addition, a single beam is used with the full power of that beam going through the patients hair, skin, bone and normal brain. The only way to reduce the full effect of this dose on normal tisue and allow healing, is to divide the dose over several days-thus radiotherapy. Cyberknife has good utility for spine lesions. In this case, fiducials or markers are implanted surgically under the skin. Other linac based systems include x-knife and brain lab.

Gamma Knife is not based on linac tecnology. It was developed in the fifties with the first patient being
treated in 1958. Upgrades occur yearly to keep the machine on the cutting edge and is considered the gold standard for radiosurgery. Gamma knife is not fractionated( spread over several days), but is always radiosurgery-a single session treatment. Gamma Knife was developed by a neurosurgeon and a physiciast and is specificaally designed for the brain. It uses cobalt as the radiation sources and is a more powerful machine compared to other technologies. As a result, treatment time is significantly shorter. A frame is place on the head so there is no chance for the patient to move. There are no moving parts to the machine. Everything is stationary which lends to is accuracy of .3 mm. It can not be used for the spine or other parts of the body. Is is designed specifically for the brain alone. It uses 201 beams of radiation directed to a lesion. Each individual beam is weak (this goes thru the hair, skin, bone and normal brain)- a fraction of the total of the beams. Where the beams collide is the full forcef the radiation- directly on the lesion. This reduces the risk to normal tissue and allows a single session treatment. It is so accurate it can be used for individual nerves-trigeminal neuralgia. Linac systems are not adequate to do this, although cyberknife is starting to do this to see the overall affects. I am partial to Gamma Knife. We have the onlt one in New Jersy at presenr. It is not because we have one that I am an advocate. Years ago, because of our large number of trigeminal and brain tumor patients, we decided to get rid of the old linac machine and buy another. This was to be able to offer our patients a variety of different treatments. We chose Gamma Knife becuse of the above.

The bottom line- if I treated a lesion radiosurgically with cyberknife or gamma knife, the control rate would probably be the same. There are no direct comparisions with cyberknife. Other linac based systems have been compared to gamma knife. The control rates were slightly better with gamma knife, but it was not statistically significant. The difference comes in treatment time which is shorter with gamma knife and side effects, decreased with gamma knife because of lower affects on the normal tissue. Dr. Landolfi

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This week we were wondering - after diagnosis of a primary spinal tumor, do you feel that the entire CNS pathway (including the brain) should receive an MRI? How often?

Thank you (as always)
Bruce

 

At the initial diagnosis I like to do a complete spinal and cranial MRI to look for other lesions. If negative they do not need to be repeated unless the patient develops new symptoms not related to the identified lesion. Dr. Landolfi

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What is a sub-ependymoma, and how does it differ from an ependymoma?

Thank you (as always)
Bruce

 

Ependymal is the lining of the ventricles and other csf (spinal fluid spaces). Tumors that arise from the lining are ependymomas and those that arise under the lining (another set of cells) are sub-ependymomas. Dr. Landolfi

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We wonder - if radiation does damage to points along the path, why does it take time for that damage to show? How long does it take to see this damage? And, will that damage keep getting worse? For how long?

Thank you (as always)
Bruce

 

 

The damage radiation does to normal brain cells develops over time because normal cells are not dividing as rapidly as tumor cells where the damage becomes more evident sooner. Alot of the memory problems seen with radiation is believed to be due to blood vessel changes rather than damage to normal brain. The small blood vessels close off over time secondary to radiation damage leading to a vascular dementia where a decrease in blood flow leads to little areas of damage to normal brain. This is the prevailing theory. The damage may become evident in months on an MRI scan-it can take longer clinically. The damage may progress but then plateaus. There are several radiation syndromes that occur. Some happen acutely at the time of or soon after the radiation and others may be delayed for years. It is important ot ask the radiation oncologist all of the potential short and long term side effects of radiation so you are completely informed before you start treatment. Dr. Landolfi

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Adult ependymomas occur most frequently around 34 years of age - why then? Did we carry the cells from birth, and the tumor formed after that many years, or are our bodies more susceptible to causes after 34 years?

Thank you (as always)
Bruce

 

 

Ependymomas occur in childhood most commonly with another peak in the third decade of life. There is no clear understanding as to why they occur more commonly in these age distributions. This is true of other tumors as well when they occur. We all have ependymoma cells-these are the cells of origin for the tumor. What causes them to grow abnormally is unknown-genetic and environmental factors may play a role, but we just don't know. Dr. Landolfi

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I understand that a tumor is a "mass" of cells. Are these mutant cells, or are they "normal" cells that behave errantly?

Thank you (as always)
Bruce

 

They are normal cells that lose their cell regulating capability and grow uncontrollably and erratically. In addition, these cells may go under dedifferentiation-behaving more like aggressive precursor cells-this is the case for more aggressive neoplasms. Dr. Landolfi

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Here is another basic question that a few of us were wondering about... What is the Blood - Brain Barrier, and what steps are employed to breach it?

Thank you (as always)
Bruce

 

It is a layer of tightly approximated cells that filters the blood going to the brain. There are a few places it is not present. It is usually broken down in areas of tumor which is why we see enhancement in some tumors. Disrupters of the barrier have been attempted for decades with disappointing results, this includes direct injection into the cerebral blood flow. Dr. Landolfi

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We have noticed that sometimes when there is a recurrence, that the tumor is more aggressive/ higher grade. Why is this?

Thank you (as always)
Bruce

 

Tumors are generally disregulated with regard to the way that they grow-they grow abnormally. When a low grade tumor is treated or followed and later changes, whether the change is progression or recurrence, it may be the same, but is typically, a higher grade. This represents further "gene" changes and cellular changes that causes further disregulation-going from a well differentiated cell to a less, or more aggressive, differentiated cell. Dr. Landolfi 

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 Is there any evidence to show whether or not the swallow reflex can be coaxed back to use with continual practice, or if once damaged (either through growth of an ependymoma on the brainstem, or radiation treatment or operation to remove the tumor) is beyond repair?

Thank you (as always)
Bruce

 

Speech and swallowing evaluations are used to determine amount of damage. There are people who improve overtime. There are no specific exercises I am aware of, although modification of meals certainly keeps thing in use. sometime emg to the vocal cords are done to determine damage. It is controversal whether stimulation can aid in recovery. Dr. Landolfi

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We have heard...that if a person remains tumor free after treatment, then he/she can be pretty sure there will not be a recurrence. What are your thoughts?

Thank you (as always)
Bruce

 

Never true. Even if there is no evidence of active tumor after treatment, they can recur at any time. This is even true for benign tumors like juvenile pilocytic astrocytomas, meningiomas and acoustic neuromas, although less likely. Dr. Landolfi

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This question is just a bit different than all of the past ones. I am asking your opinion, rather than fact....What treatments do you feel are the most promising, and - do you feel there will be a "cure" in our lifetime?

Thank you (as always)
Bruce

 

I am hopeful that we will develop adequate treatments in our lifetime to significantly extend life and quality. AIDS was always a fatal disease within a short peroid of time after diagnosis. With a combination of meds we have extended life for HIV patients by decades. I personally feel that the "magic bullet" will be a combination of conventional chemtherapy and agents that block molecular pathways. We have several out there that seem promising, but I think it will be a combination of multiple drugs attacking multiple pathways. Dr. Landolfi

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Could you please explain the use of Botox in treating some deficits?

Thank you (as always)
Bruce

 

Botox is a bacterial toxin that is a muscle relaxant. It is used to treat spacticity related to any neurological condition. It will not treat a deficit. However, if a patient has immobility due to stiffening of a limb, medications like baclofen or valium can be used, botox can be used, or an implantable pump into the spine which releases baclofen. Dr. Landolfi

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Here is a real basic question. We keep hearing the term "slow growing tumor". What is "slow growing"? 5 years? 10? 20?

Thank you (as always)
Bruce

 

Slow-growing is reserved for Grade II (low grade gliomas/ependymomas)-it may be 5, 10, 20 years; and fast-growing is reserved for anaplastic (grade III) tumors and glioblastomas. It has to do with pathology and little to do with time. Meningiomas are a slow growing tumors that we can say will grow over decades. Dr.Landolfi

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This question is basically an opinion, and since each case is different, the expected response might be different.

I have read that an ependymoma can recur anywhere along the CNS pathway. This is true for ependys that originated in the brain or spine. How often should the entire CNS pathway be scanned via MRI?


Thank you (as always)
Bruce

 

Certainly at diagnosis, the entire neuroaxis(CNS pathway) should be scanned. If positive and after treatment, you may want to image the area periodically(every 4/6 months). If initially negative to disease spread, I would only image an area if a patient became sympotomatic. Dr. Landolfi

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How does radiation work? What does it do at it's destination point? What damage does it do along the way to the destination point?

Thank you (as always)
Bruce

 

Radiation damages the DNA of tumor cells affecting the way they replicate. It can do the same to normal cells. More focal radiation, like Gamma Knife , spares normal cells, because the radiation is delivered by 201 weak beams that have no effect, but where they collide(on the tumor) , they have their impact. Other forms of radiosurgery(Cyberknife, X-knife. Linac, Brain lab, Trilogy), use only one beam so you don't spare normal tissue unless you divide the treatment over several days. They same is true for whole brain radiation, partial brain radiation and 3D conformal radiation. Unfortunately , radiosurgery is not appropriate for all tumor types because it is so focal, and so the other tyoes need to be utilized. Dr. Landolfi

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Here is another one we have been wondering about....
Do you think that facial spasms and ear noises are a result of radiation damage?


Thank you (as always)
Bruce

 

Radiation to the brainstem, particularly the pons, can lead to facial myokymia-rippilng sensation on the face-this is rare. There is no real evidense it can cause spasm. Ear noises , also known as tinnitis(does not mean ringing) is the result of hearing loss. It can also be due to certain types of radiation to the area of the hearing nerves as a result of radiation induced hearind loss. Certain chemotherapies can do the same. Dr. Landolfi

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I would like to ask a question If I might - Is there a direct relationship between radiation treatments, and deterioration of teeth or bones?

I ask this because if there is, then dental work could be considered "medical", and hopefully covered under health insurance plans


Thank you (as always)
Bruce

 

Even if it is secondary to a treatment (and certain forms of radiation and some drugs can affect the teeth), it is still dental and would be covered by a dental plan. you would have to discuss with the insurance if the doctor feels there is a cause/effect relationship to see if it would be covered outside of a dental plan. I doubt it. Dr. Landolfi

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Mental fatigue is experienced by both brain and spinal ependymoma survivors, and by those who have received radiation, and those who have not. Is it known what might be causing this symptom, and what drugs or other treatments might be useful? Are these symptoms likely to improve with the passage of time?


Thank you
Bruce

 

Fatigue is multifactorial. It may be related to the tumor, the treatment(radiation and chemo) in those who receive it, and depression. Depression is very common for mental fatigue and forgetfulness, even in a patient who does not feel depressed. If related to treatment, it may or may not improve with the passage of time. If related to depression, it is unlikely to improve without treatment. With regards to medications, depending on what the doctor feels is the cause of the fatigue will dictate the med chosen. For example, if related to depression, drugs like paxil and zoloft may be used. If related to treatment, stimulants like ritalin, provigil, adderal may be used. Other drugs that can aid in mental fatigue include memantine. Also of course cognitive rehabilitaion or counseling may also help depending on the cause.  Dr. Landolfi

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When looking at an MRI that includes ependymoma tumors, is it possible for the tumors to show up , but be dead from other courses of treatment? Will living tumors always highlight from contrast? Is it possible that dead tumors could light up from contrast?

Thank you

Bruce

 

We can see tumors whether they "light up" with contrast or not. Although the cells are alive, contrast usually means active growth or change. Specifically contrast seeps thru a disruption in the blood-brain barrier caused by a tumor. Other things light up as well, like abcesses. If someone has been treated and we are trying to distinguish between active tumor and radiation necrosis (dead cells), we typically use an MRI spectroscopy (looks at chemical makeup of lesion) or PET (looks at metabolism) as both can enhance on an MRI. Dr. Landolfi

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We all are experienced with the MRI machine. What does a PET scan show, and when is it used? How about a CT scan?

Thank you

Bruce

 

CT scan is very good for looking at blood. We use when people can't have an MRI, like when they have a pacemaker. PET scan or MRI spectroscopy is used when we see what looks like progressive enhancement and tumor on an MRI scan in a patient that has had prior radiation. It can help tell the difference between radiation necrosis and active tumor. Lesions need to be larger than 1cm to make the PET effective. Dr. Landolfi

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Do you have any idea why my tumor occurred where it did, and not somewhere else in the CSF pathway? Why is the floor of the 4th ventricle the most common spot of occurrence for ependymomas of the brain? Where along the spine is the most common spot of occurrence for spinal ependys?

Thank you (as always)
Bruce

 

Ependymomas arise from ependymal cells which line the ventricles of the brain. Historiccally thay are very common to arise from the floor of the fourth ventricle. This is the observation. As to why they occur there with more frequency may have to do with spinal fluid flow, but to my knowledge is not completely understood. Spinal ependymomas can occur anywhere but more commonly at the top or very bottom of the cord.  Dr. Landolfi

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Once a recurrence has happened, are the chances for further recurrences heightened?

Thank you
Bruce

 

Once a tumor has reoccurred, it becomes more difficult to control and further recurrances are likely. There are cases that I have that recurred and then the patient remained stable for years before further recurrences.  Dr. Landolfi

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This question is not asking about facts. Rather, it is an opinion-type question. Do you feel there will be a "cure" in our lifetime?

Thank you 
Bruce

Not a cure in our lifetime, but great strides in our liftime. Perhaps a cure in our childrens lifetime. Dr, Landolfi

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Can a craniotomy cause personality changes in the things one likes or dislikes, i.e. some survivors do not like sweets anymore, and others are unable to ride carnival rides. Is that due to the surgery?

Thank you (as always)
Bruce

 

Unless there is direct damage to the taste or smelling nerves, no not due to surgery. Most likely due to tumor or treatment. Effects of the R frontal lobe from surgery or tumor can change personality and thus, likes and dislikes.  Dr. Landolfi
 
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     We have heard that HGH might possibly cause tumor regrowth. What is your opinion?

 
Thank you (as always)
Bruce
 
 
If you are talking about human growth hormone (hGH), no it does not cause tumor regrowth. Dr. Landolfi
 
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     Can you give us any information on the drug Temozolomide? How new is it? How effective is it for ependymomas?

Thank you (as always)

 

IT WAS APPROVED BY THE FDA FOR RECURRENT GLIOBLASTOMA IN 1999. NOT VERY EFFECTIVE FOR EPENYMOMAS BUT IS USED, PARTICULARLY FOR ANAPLASTIC DISEASE. DR. LANDOLFI

 
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Great job at the conference! Would you look at the link:

     it is to something called "stimulating music". Would you please give your opinion as to whether something like this might benefit brain tumor survivors?

Music has been studied in the rehabilitation setting and can soothe and provide comfort to people. Music therapy is well documented to give people an over sense of well being. The same cn be said for meditation therapy. For these reasons, I feel music would benefit.  As far as improving cognitive function in a significant way, I am not familiar with any significant study. I would certainly recommend music therapy.  Dr. landolfi

 

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This statement is not directed at you - rather I am just thinking "out loud"...

 

     It seems common among our members that they will get an MRI scan, then have to wait weeks (or sometimes months) to have it read by their neurologist. This period of time is the ultimate stress-inducing time for a tumor survivor to have to endure. We worry about whether or not the tumor has returned, how long we get to live, etc., etc. In this role of facilitator, I have seen that this is the #1 complaint among survivors.

     I refuse to believe that most doctors are heartless about this...How do we (as patients) let the medical world in general know how stressful this time is for us? I do realize that since money makes the world go 'round, that dealings with HMOs and other insurance companies may cause to slow these things down.

     Do you have any suggestions on how an average "layman" could best address this situation?  Any suggestions would be greatly appreciated!

Typically, I have my patients do their scans a few days before their next appointment so we can review them together and discuss the results. In this way, the stress is only related to the anxiety of the getting the scan. My nurse calls this PMS-pre-MRI stress/syndrome.Seeing them is not to generate income but rather to be with the patient if the result is not a good one and to do a clinical exam. If patients are getting scans and not being seen, the best one can do is have a frank conversation with their treating physician to explain how you are feeling regarding getting the results. I see my patients after each scan. If they are unable to make the appointment, they get their results by phone no more than a week after the scan depending on when they drop them off for me to review then. Another suggestion is to make an appointment specifically to discuss the MRI film at the time you know you will be getting a scan. Dr. Landolfi

 
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Hello again;

     Here is this weeks question - a little late!

 

     Have you ever heard of a spinal cord-ectomy? This procedure was recommended for one of our members since she has experienced recurrences several times.


I have heard of spinal cordectomy for various tumor types. In gliomas, it has been shown to have no value overall in the literature. I will ask the spinal neurosurgeon about his experience and knowledge of the literature regarding ependymoma. Dr. Landolfi 


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Hello again, and here is the latest we have been wondering about...

 

     What do you know about (sorry I forget the actual name) "heat treatment" - to remove tumors? What are the advantages? Is this a procedure that will become the "norm" in time?


RADIOFREQUENCY ABLATION(HET GENERATING PROBE) FOR LESIONS OF THE LIVER AND LUNG IS A GOOD TREATMENT FOR PATIENTS WITH CERTAIN SYSTEMIC CANCERS. FOR BRAIN TUMORS, PEOPLE HAVE LOOKED AT MICROWAVES IN THE PAST WITH NO REAL BENEFIT. A NEWER TECHNIQUE IS A HEAT PROBE/LASER. TOO EARLY TO TELL. CLINICAL TRIALS JUST STARTING.


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Hello again, Dr. Landolfi;

 

     Here is another question for you.

 

     Have you ever heard of a resected subependymoma recurring?


Typically they reoccur when they are incompletely resected. More malignant subependymomas may also reoccur


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    Hello again;

     We know of one lady that has 40 years of survivorship between he original tumor surgery and her unfortunate recurrence. Is this the longest length of time you have come across? Do you know of anything comparable?

 

That is unusual. I have not seen a recurrence so far apart from the original surgery. I have a few low grade gliomas that recurred 20-25 years after initial diagnosis.

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Hello again;

     After treatment(s), we survivors need to regain some control over our future. What,if anything can we do to sway the odds of survival in our favor? Nutrition? Exercise?

 

 

Regular exercise and a good diet are essential for overall good health. It will also make you stronger if treatments like surgery , radiation or chemotherapy become necessary. That doesn’t mean you cannot indulge at times. I enjoy cookies and milk, ice cream and an occasional swiss roll. Dr. landolfi
 
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   If a patient has already received intravenous etoposide together with vincristine and cyclophosomide, can he have etoposide again at a later date in its oral form, or is it better to try a completely different chemo regimen?

 

     As always, we thank you!
 
usually we would switch to a new drug if available, but reintroduction of a drug, perhaps on a different schedule is common place. this is true of my own practice as well. dr. landolfi
 
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Are ependymomas hereditary?
 
 
there are a few syndromes where brain tumors are hereditary and can include ependymomas. we are just beginning to understand a more general pattern of hereditary. dr. landolfi

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Does chemotherapy work better when a tumor is still small and relatively "new", or does it make no difference with regards to drugs being able to penetrate the cancer cells?
 
 

fast growing tumors repond better to chemotherapy than slower growing tumors (low garde) although they respond as well. certainly the least amount of disease is better, not because it penetrates th e cells betterr but rather because there is less disease for the chemotherapy to combat as a whole. dr. landolfi

 

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 Hello again!

 

     Can you tell us how long radiation might affect brain functions after treatment? Months? Years? Decades?

radiation has several times that side effects can take place: acute (within hours to days), subacute (weeks), late subacute(months) and late (months to years). it depends on the location and dose of the radiotherapy. once symptoms of a particular syndrome occur they tend to stabilize after  a short period of time and remain stable if they don't resolve (for example memory decline will usually remain but stabilize whereas swelling will typically resolve). dr. landolfi

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Hello again!

     What is your answer to the question, "My ependymoma was benign...should I have radiation?"

I do not know the % of tumor resected. Patient is on anti seizure meds.

Would you recommend a spinal tap?

 

no spinal tap unless I was concerned about spinal fluid spread. certainly a spinal tap should be done at initial presentation. radiation is reserved for anaplastic ependymomas. some recommend radiotherapy  for low grade ependymoma if not completely resected. I'd probably opt to repeat the MRI scan and depending on the amount of residual disease, follow with scans until growth. we also look at the growth rate (known as MIB or Ki index). if these are high in a low grade glioma, I may consider radiotherapy. also if the tumor is epidermal growth factor receptor positive, Tarceva ( a chemotherapy) can be considered. Dr. Landolfi

 

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Hello again;

     In last weeks question, you mentioned epidermal growth factor receptor. Could you please explain what this is?

It is a receptor found on some tumor cells, like ependymoma, that can be used as a target for certain drugs(Tarceva for now) to halt growth.dr. landolfi

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Hello again!

     What do you think of using Temodar with Avastin for brain/spinal ependymomas?

 

can be tried like anything else for recurrent, particularly anaplastic tumors. dr. landolfi

 

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Hello again Dr. Landolfi;

     We have heard that the hottest thing in brain tumor treatment now is individualized therapies based on a genetic profile of your specific tumor. Do you have any information on this?

 

For oligodendrogliomas, we use a genetic fingerprint for prognostic information. Some, like myself , use the information to guide therapy. Large studies are being done. For other tumor types, we are looking at cell markers or molecules involved in celluar processes like growth. We use these markers to develop and use specific agents/drugs against those markers on the tumor for treatment. One example is using a drug called avastin which attacks a receptor on the tumor cell called VEGF in patients with recurrent glipblastoma. Also, for ependymomas that express EGFR receptor, a drug called tarceva may be used. Dr. landolfi
 
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As a doctor, are you insulted if a patient of yours seeks a second opinion?
 
not at all. I am confident in the opinion I give. in fact, some patients who seem unsure or uncertain about specific issues, I recommend a second opinion and give them names of other reputable people to see. Dr. landolfi

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Hello again;

     I am back with another question. While radiation treatments can be beneficial, is it not true that material in the radiation's pathway may be damaged? In my case, the radiation pathway went through my teeth - and I have had many problems there ever since. However, when asked if radiation might have had a negative impact, my dentist told me, "I doubt it". My dental cleanliness is the same as before radiation, however there is a marked change post treatment. What is your opinion on this?

 

radiation can affect the teeth depending on the dose of radiation and the path.  I would have expected the radiation oncologist to mention these potential, although uncommon, side effects.  Dr. Landolfi


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