Ask Dr. Landolfi (still cont.)

Hello again - here is another question;

If a tumor occurs at the top of the spinal cord - specifically in the cervical region, is it considered a brain tumor?

As always, we thank you!

no. it is a spine or cervicomedullary lesion, depending on the exact loaction. dr. landolfi

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Hi again, Doctor;

Do you recommend vocal cord surgery for speech problems that cannot be corrected by other therapy?

Thank you;

Bruce

if there is paralysis or another appropriate indication. i admit i don't know alot about those surgeries. dr. landolfi

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Hello again;

Some of us are experiencing residual headaches after radiation treatment. About how long can they be expected to continue?

Thank you, Dr. Landolfi

Bruce

Headaches are nonspecific. They may be due to irritation of the scalp, swelling secondary to treatment or unrelated. Depending on the character of the pain, duration, exacerbating and relieving factors, the headache may last several months or be a chronic issue. Dr. Landolfi

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Hello again;

How long does it take for the skull to heal after surgery? Do the bones actually grow back together? We have heard of neurosurgeons saving the "bone dust" from drilling to use over the skull when it is placed back together, and that this speeds the healing ??? Does the skull ever really heal the way a broken arm or leg does?

Thank you, as always!

Bruce

IT CAN TAKE MONTHS TO COMPLETELY HEAL. THE BONE DOES FUSE OVER TIME. IN SOME CASES PATIENTS FEEL A BUMP WHERE THE INCISION WAS. THIS IS THAT FUSION AND BONE SCAR. The bone added aids in the fusion.DR. LANDOLFI

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Hello again doctor Landolfi;

With all of the renewed interest about how using cell phones may cause an increased risk of brain tumors, I would like to ask for your opinion - should I put the phone away?

Thank you - as always!

Bruce

no. to date there is no evidence for an increased incidence of brain tumors with cell phone use.in the netherlands there was one paper showing a slight increase in incidence with analog cell phones. However, analog cell phones are no longer used. No worries. Dr. Landolfi

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Hello once again;

It is well known that different hospitals have better reputations for successful tumor surgery. Are there any countries that have better research or facilities for tumor patients? Also, are the reputations based on recovery time, survival, percentage of tumor successfully removed, equipment, research or other factors?

As always, we thank you. You are providing a valuable service to our members from around the globe!

Bruce

Other countries don't have better at research or facilities for patient's but the laws and the other countries with regards to treatment are more lenient than in the United States and so less ethical practices in a car and by the same token newer drugs may be tried out sooner. With regards to reputations of different hospitals, it has to do with a number of tumor patients seen, the number of surgeries done and the percentage of complications from surgery compared to the national average. Certainly, research can and to a facilities reputation. I personally also find outcome data very important. Dr. Landolfi

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Hello again;

It seems like most people don't have terrible pain after craniotomies. Is this because of the success of pain medications, or are there fewer nerves that sense the pain?

Thank you, Doctor Landolfi!

Bruce

There are small nerves on the scalp. People complain of a pinching or burning pain over the incision site. The covering of the brain-the dura- also has pain fibers that respond to stretch. This pain lasts a few days to weeks. The brain itself does not sense pain. For the spine, there are many pain pathways as well as the nerve roots and nerves. Dr.Landolfi

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Hello once again!

How do drains (or shunts) work? Are there separate holes made in the skull for this?

Thank you - as always!

Bruce

THERE ARE SEPARATE HOLES PLACED IN THE SKULL. FOR A DRAIN, THE DEVICE COMES OUT AND IS HOOKED TO AN EXTERNSAL APPARATUS. FOR A SHUNT, A SMALL RESERVIOR IN MOST CASES IS PLACED UNDER THE SKIN OVER THE SKULL. THE TUBE THEN GOES UNDER THE SKIN DOWN TO THE BELY. DR. LANDOLFI

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Hello again Dr. Landolfi;

This question is about radiation - specifically, what does it do to the tumor cells? Does it "Fry" them into non-existence, change their DNA, or alter them so that they cannot divide and "reproduce"?

Thank you!

Bruce

Radiotherapy damages the dna so that the cells cannot or have trouble replicating. Our cells have repair enzymes which then fix the damage which is why cells are only affected for a period of time and then may grow. Conventional chemotherapy works the same way but not all tumors respond. Newer drugs affect the way the cell operates at the molecular level which is a novel approach. Dr. Landolfi

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Here is another question we have been wondering about...

Why does the brain NOT grow back together after surgery? Our MRIs still show where the tumor was, how it (or the surgery) altered the brain. Why?

Thank you (as always)

Bruce

Sometimes the brain will expand into the cavity so that the cavity overtime is smaller. More recent research has suggested that neurons of the brain do regenerate but at a very slow rate, much slower than the peripheral nervous system. This of course will be impeded by any other therapy. Dr. Landolfi

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Hello again, sorry for the tardiness of this email...

Do you think stem cells can benefit those of us who have neuropathy and balance issues?

Thank you - as always

Bruce

stem cell research is in it's infancy. it is being studied in degenerative diseases like lou gerhigs dz and parkinsons. cancer as well. neuropathy and balance issues are not on the forefront of the research and would unlikely benefit if they were. dr. landolfi

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Hello again;

Have you ever heard of Fiber Optics Assisted Surgery? If not, I have a link to a short presentation about it - I hope it works!

http://news.cnet.com/8301-11386_3-10016563-76.html?tag=ne.fd.mnbc

Could you please give us your impression?

Thanks again - Bruce

I am somewhat familiar with the technology. It may help the surgeon remove more of a tumor with less side effects when the surgery is done through a small endoscopic opening. Dr. Steineke, our skull base neurosurgeon, often does endoscopic surgery. I will discuss with him this technology for my own benefit. Thank you, Dr. Landolfi

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Hello again;

This week, we are wondering...why do some of us experience fatigue after treatments, like surgery, cyberknife, depression, or a combination of these?

Thank you as always!

Bruce

Radiation can suppress the bone marrow and also lead to fatigue. When cyber knife is used as a radiosurgical device rather than a stereotactic radiotherapy device and is focused on a particular target, like gamma knife, it should not cause fatigue. Medications also cause fatigue. Surgery causes fatigue because of the overall stress the body endures when going through the procedure. Fatigue is a nonspecific complaint that can occur with many medications and interventions. In some cases of fatigue is secondary to distress, and others is to direct side effects, and still on others at soonest impression of the bone marrow which can lead to anemia. Dr. Landolfi

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Hello again;

Sorry for not getting this to you yesterday, but this time I did not forget (!), I just had no internet access!

Is there any correlation between the size of the tumor and the recovery/rehab time needed? It seems (although admittedly informal) that our group's experience has been the more tissue that is displaced and nerves that are damaged, the longer it takes to recover. There is an oft-quoted time for nerve regeneration of 12 months, but that seems too highly variable. Can you also comment on your experiences here?

Thank you, Dr. Landolfi

Size is nowhere near as important as location. The location of the lesion on the neurological function affected will effect the recovery and rehab time. Certainly larger tumors may require more extensive surgeries and recovery time may be somewhat increased but not significantly. Peripheral nerve regeneration is very slow and may take years. We are just learning that the central nervous system nerves also regenerate, but at a much slower rate. 12 months is an arbitrary number of most likely refers to the peripheral nerves. Dr. Landolfi

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Hello again, Dr. landolfi;

Here is the latest question we have for you:

It is known that Hyperbaric chambers (HBOT) cab be beneficial for those having brain injury. How about for a brain damaged by a tumor, or treatments?

It has been awhile since I have expressed our thanks to you - there are over 150 of us from around the world. Your weekly help is always looked forward to, and results many times in continued discussions about a particular subject. Your help is immeasurable!

Bruce

In the brief reading that I did, Hyperbaric chambers are used for various types of injuries. Crush injury is of an extremity, decompression sickness, and other processes. It also been used in some places to aid in wound healing. They are not a treatment for brain injury no matter what the cause. Dr. Landolfi

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Hello again;

One lady in our group exhibited a symptom of vomiting. Her tumor was an ependymoma located at C-5. Vomiting is very typical of the brain stem and the fourth ventricle tumors. Is it possible that the stoppage of CSF could have caused the vomiting - like hydrocephalus?

Once again, we thank you for your contributions!

Bruce

vomiting from these tumors is typically due to increased pressure in the head due to the mass effect of the tumor. Another mechanism would be a blockage of CSF causing hydrocephalus which leads to increased pressure and thus vomiting. Hydrocephalus would be evident on the scans. Dr. Landolfi

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Hello once again!

Very often, we hear of our doctors misdiagnosing ependymomas, often delaying the correct treatment by many months, or even years. Is there a way that the "worst case scenario" (tumor) can be ruled out first (MRI)? Is it because health insurance companies have a say in this procedure?

Thank you, Dr. Landolfi

Bruce

I'm not sure exactly what you mean by misdiagnosing. If you mean that the patient has symptoms and the doctor is not thinking of tumor, there is no excuse for not doing the appropriate workup (i.e. An MRI) to evaluate when the symptoms warrant such an examination. But even an MRI can be misleading. Something that may look like a benign lesion or a low-grade ependymoma, could be a more aggressive neoplasm. Biopsy is the only way to be absolutely sure. Yes, health-care companies will limit the number of tests a physician can order and may also say no when the physician wants to order a particular test. At which point, the physician needs to fight in order to get the tests done if they feel that is the appropriate test to do. Dr. Landolfi

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Hello again, here is another one we have been wondering about...

Several of us are experiencing pain from neuropathy. Medicines like Lyrica and Neurontin are not always strong enough to mask it. Some doctors are reluctant to prescribe codeine based drugs because they may be addictive. Are there any options? I know that you are involved in pain management. Do you have any advice for these people?

Thanks (as always)

Bruce

For a neuropathic pain, the most appropriate medications would be amitriptyline, Lyrica, Cymbalta, and Neurontin. Other medications such as baclofen and Zanaflex may work as well. If these are in adequate, Ultram and is a good alternative. It is a nonnarcotic medicine networks on the narcotic receptor. If all else fails, narcotic medications would be the next appropriate choice. I would seek out a multidisciplinary pain team at the point that these medications would become necessary. This of course means that adequate trials of the other medications have been completed. In some cases it may be a combination of these medications and narcotics. These medications are not appropriate in all patients, particularly when there is a history of addictive behavior whether to drugs or alcohol. Dr. Landolfi

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Hello again. we have another question!

We have heard that different hospitals have better reputations for successful tumor surgery. Are there any countries that have better research or facilities for tumor patients? Also - are the reputations based on recovery time, survival, percentage of tumors successfully resected, equipment, research or other factors?

Thank you Doctor Landolfi!

Bruce

SUCCESSFUL SURGERY HAS T0 DO WITH OUTCOMES AND SURGERY SIDE EFFECTS/COMPLICATIONS. THOSE HOSPITALS THAT OPERATE MORE ON A PARTICULAR TUMOR TEND TO HAVE LOWER SIDE EFFECTS AND BETTER OUTCOMES. PEOPLE FROM AROUND THE WORLD TRAVEL TO THE US FOR CARE. OTHER COUNTRIES HAVE WEAKER LAWS THAT PROTECT PATIENTS SO YOU MAY BE ABLE TO GET EXPERIMENTAL OR UNUSUAL TREATMENTS YOU MIGHT NOT BE ABLE TO GET HERE. A LOT OF THE TIME THEY SOUND GOOD BUT PROVIDE LITTLE. ALL OF THE FACTORS YOU LIST ARE IMPORTANT. ALSO, THE NUMBER OF SPECIALISTS/ THE MULTIDISCIPLINARY TEAM. AS A RESULT MY CENTER IS CONSIDERED A CENTER OF EXCELLENCE BY THE SOCIETY FOR NEUROONCOLOGY. DR. LANDOLFI

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Hello once again;

I know that I have asked you about nutrition and nutritional supplements for tumor survivors. Some minds are positive about the benefits of these, while others are completely skeptical. Can you give me the names of "cutting edge" nutritionists or have you heard of any product that is beneficial to tumor survivors?

Thank you!

Bruce

From a nutritional point of view, Jean Wallace, seems to have the most experience. I do not agree with everything she states. I believe she is out west. Personally, Ruta 6 is a naturally occurring Indian root that has been shown to have some efficacy against brain tumors. I typically recommend this if the patient wishes a nutritional supplement. Dr. Landolfi

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Hello again, we have yet another question, please!

What is the average time it takes after a course of radiation before one knows if the treatment was effective?

Thank you!

Bruce

for aggresive neoplasms, we like to reevaluate after 4-8 weeks. slow growing neoplasms. like meningiomas, we may wait six months.you may not see the response so soon but we like to evaluate at that time. dr. landolfi

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Hello again;

A few weeks ago you mentioned Ruta 6. After doing some research, some of us would like to try it. While it is understood that specifics about our individual cases must first be discussed with our personal doctors, would you be able to suggest and average dosage? Where can we find Ruta 6?

Thank you - as always!

Bruce

Ruta 6 was studied in glioma. I do not think it would be unreasonable in light of the fact that it is a natural root, for patients with ependymoma to take as well. My nurse, Patty, has the information on where to obtain the Ruta 6 which is very inexpensive and how to take it. I will forward her this response so that she can e-mail you with the information when she returns to the office tomorrow. Certainly you should light your personal doctors know that your planning on taking this natural root. Dr. Landolfi

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Hello again;

One of our folks has had radiation treatments. MRI scans then showed the tumor enlarged. Is it possible that it is larger because of the radiation?

Thank you

Bruce

RADIATION NECROSIS CAN OCCUR WHICH CAN MAKE IT SEEM LIKE THE TUMOR IS LARGER. TIMING FROM RADIATION, ENHANCEMENT PATTERN AND OTHER SCANS (MRI SPECTROSCOPY/PET) CAN HELP BETTER DEFINE. OF COURSE, THE TUMOR MAY BE LARGER WHICH IS MORE OF A CONCERN. THE PATIENT SHOULD DISCUSS THE MRI FINDINGS WITH THEIR TREATING PHYSICIAN AND THE POSSIBLE INTERPRETATION OF THE FILMS. IF UNHAPPY, THEY CAN SEEK OTHER OPINIONS. DR. LANDOLFI

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Hello again, Dr. Landolfi. I hope you had a great Holiday!

We have been wondering about this one...What chemotherapy options have been used besides VP-16 and Temodar? Is the new "wonderdrug" Avastin and CPT - 11 useful for ependymomas?

Thanks!

Bruce

historically chemotherapy has not been effective in ependymoma. more drugs have been tried in the pediatric population. in addition to etoposide and temodar, tarceva has been tried. for anaplastic tumors i would consider avastin if others fail. dr. landolfi

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Hello again;

We have heard how neurosurgeons sometimes "wake" their patients during surgery. Would there be any benefit to doing this with tumors of the ventricles?

Thank you (as always)

Bruce

Awake craniotomies are utilized for lesions close to the speech, memory and motor areas of the brain, particularly speech. They are not typically utilized for lesions within the ventricle. A newer neurosurgical technique that may be appropriate for intraventricular lesions is endoscopic neurosurgery, of which there only a few surgeons in the country well-trained.~

Hello again;

Here is another question.

We have heard about tumor "painting" - the idea being that tumor cells will illuminate or change colors to differentiate them from normal brain cells. What is your opinion of this?

Thank you, once again

Bruce

I am somewhat familiar with this hypothesis. There had been limited studies on chemically treating the tumors to differentiate them from normal cells. In my opinion, from the discussion of multiple neurosurgeons, they have a very good idea between abnormal and normal cells during the intraoperative procedure without such methods. It is not something that we utilize at our facility. Dr. Landolfi~

Hello again, Dr. Landolfi;

We would like to know - why is chemotherapy less effective on ependymomas as opposed to other tumor types?

Thank you again!

Bruce

This is a difficult question to answer. I do not think it is clearly understood the biological reasons why ependymoma cells do not respond as well as other neoplastic processes. It has been an observation over the years. Certainly, when the tumor is anaplastic or high-grade chemotherapy is a serious consideration after surgery and radiotherapy. Dr. Landolfi~

Hello again, Doctor Landolfi;

Does having chemotherapy before radiotherapy make the radiotherapy "work better"?

Thank you (as always)

Bruce

Historically this has not been found to be effective in brain and spinal tumors. Recent studies done with preirradiation chemotherapy did not show benefit. Two exceptions are CNS lymphoma and anaplastic oligodendroglioma where they have a remarkable response to chemotherapy. Chemo is given upfront with radiation at recurrence; very different from other tumors we treat. Also, some cancers of the body are treated with chemotherapy or radiation first which causes shrinkage prior to surgery. Dr. Landolfi~

Hello again;

Would common drugs used for ADD & ADHD be helpful for ependy survivors who find themselves struggling with concentration and focus issues?

As always, we thank you!

Bruce

YES. ACTUALLY RITALIN IS A VERY COMMON DRUG TO USE. THERE ARE SIMILAR DRUGS BESIDES RITALIN SUCH AS PROVIGIL, NAMENDA THAT I FREQUENTLY USE AS WELL. DR. LANDOLFI

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Hello again, Dr. Landolfi;

In some cases, we tumor patients were treated and "let go", followed by no doctor at all. I feel that these people should have MRIs for the rest of their lives, but - how frequently? Do you have a schedule that tells you how often an MRI should be performed?

Thank you - as always

Bruce

For anaplastic tumors, I follow patient's every two to three months for the first year, then increase the interval to every four months for a year and then every six months. I never go beyond every six months. Some physicians will follow malignant/anaplastic tumors yearly. I am uncomfortable with this. A lot can happen in a year. For low-grade tumors, I will follow patient's yearly after the intervals discussed above. Four benign tumors like meningiomas, pituitary tumors, acoustic neuromas, they are typically followed every six months for a year, then every year for year or two and then every two to five years. This of course assuming the tumor is stable. If there is any change in the tumor while I am following the patient, then I will reduce the interval and certainly recommend treatment. Dr. Landolfi

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For yet another week, I have forgotten to write this email until late (at least it isn't Wednesday!)

Here is a question I hope I haven't already asked. It seem that more than a few of us 4th ventricle folks are struggling with low blood pressure issues. Why is this?

Thank you -

Bruce

The issue isn't so much with the fourth ventricle. If you talking about intracranial pressures that it may be related to the larger cavity now present with distortion of the fourth ventricular size and shape leading to changes in CSF flow patterns and pressures. If you talking about the blood pressure, the fourth ventricle sits behind the brainstem which carries with it many autonomic functions including regulation of our heart rate, respirations, and blood pressure. Formal autonomic testing can be done to help elucidate with the issues may be. Dr. Landolfi~

Here is this weeks attempt to pick your brain!

What is "endoscopic neurosurgery"? What are its risks and benefits?

Thanks - as always!

Bruce

Endoscopic neurosurgery is a minimally invasive neurosurgical technique where surgery takes place through a small tube. The benefits are a reduction in overall hospitalization as well as reduce risks from the open surgery. I am not completely familiar with the specific risks outside of those common for most neurosurgical procedures. Mostly, the risk would be that an open procedure would be necessary anyway for several reasons. This decision would be made at the time of surgery and at the same sitting. Dr. Landolfi~

Hello yet another time;

How soon can a tumor recur after it has been resected?

Thank you - as always!

Bruce

Depends on the grade. We look at progression free survival which is different for each tumor type depending on type of treatment. There is also a difference between adult and pediatric ependymomas. The literature is sparse on adult ependymomas and we talk about overall survival. Dr. Landolfi

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Hello again, Dr. Landolfi;

Why is it that Gadolinium passes through the Blood Brain Barrier, but many Chemotherapy drugs do not?

Bruce

It has to do with the size of the molecule. Gadolinium is very small and is excreted thru the chemotherapies. The size of many chemotherapeutic agents prohibits entrance thru the barrier. Also hydrophilic (water) or lipophilic (fat) properties of the drugs are at play as well. New drugs are much smaller-they work on the molecular level and can pass thru the barrier. Dr. landolfi

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Hello again Dr. Landolfi;

Many medications end in the suffix "tecan", such as gematecan and prototecan. What does "tecan" stand for?

Thank you!

Bruce

I’m not sure. I could find no meaning to the root word. Alot of times the company picks what sounds good and tries to keep classes of drugs together. Dr. landolfi

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.

Hello again;

This just came up with one of us....If a patient was recently operated on for an ependymoma (within one year), is it possible to find a doctor in another area to take over treatment? Some doctors are reluctant, and some have outright discouraged a member from seeking help from them. With the surgery being so recent, some doctors do not want to "take over" the care of another physicians' patient.

What are your thoughts?

Bruce

If the patient has just been operated on, it is in their best interest to stay with that doctor thru the acute and immediate post op care. After that, they don’t need to follow with the surgeon unless there are ongoing issues. They need someone to monitor the scans. Most surgeons do not want to follow another physicians patient immediately after surgery. Relocation and poor relationship with a doc are other reasons to switch care.Within a year doesn’t make sense, unless the patient is telling the new physician that if something changes they will go back to the original surgeon instead of having the issue addressed by them. In that cas , you can’t blame them. Dr.Landolfi

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