Leaving the Hospital After Surgery
Most patients recover very quickly after surgery on their brain tumor. The majority are able to leave the hospital within a few days. Some patients go directly home, whereas others benefit from an inpatient stay in a rehabilitation hospital.  This allows for an opportunity to optimize physical function and to gain strength prior to going home. A nurse practitioner will remove the sutures 7 - 14 days after surgery. The head should be kept dry until the sutures have been removed.

It is important to meet the doctors who will be part of the team of brain tumor specialists. There are three kinds of brain tumor specialists:

• Neurosurgeon
• Radiation oncologist
• Neuro-oncologist

Sometimes it is not possible to see all three specialists in the hospital, in which case their names, telephone numbers, and an appointment date will be provided prior to discharge. Also plan to see a primary care doctor soon after discharge. This doctor will be an important resource for general medical problems, should they arise.

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Keep Permanent Notes
There will be many discussions with doctors and nurses about symptoms, test results, treatments, and medications. It is helpful to keep careful notes and dates in a permanent book like a  notebook or a diary.

The Pappas Center will provide you with a new patient information file folder at your first visit.  The information in the file folder has been carefully selected to assist you.  The folder is also given as a convenient container for notes, test results, medication changes, and appointment cards.  It is suggested that you bring this file folder with you to each appointment. 

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Commonly Prescribed Drugs and Possible Side Effects

• Decadron
  Decadron (dexamethasone) is very useful in reducing swelling around the tumor. It also has many side effects, but these are usually less important than the benefit from taking Decadron. However, it is always a major goal to find the smallest dose that is helpful. Side effects include: euphoria, with excessive feeling of well-being and insomnia; increased appetite, especially for sweets; weight gain with fat deposition in the cheeks; high blood sugar, particularly in diabetics; high blood pressure; muscle weakness in the legs (this affects climbing stairs and rising from chairs); stomach ulcers (an acid blocking drug is usually given to combat this); and increased risk of infection (patients on Decadron for more than 2 months should ask about prophylactic Bactrim). It is not necessary to check blood levels of Decadron.
• Dilantin
  Dilantin (phenytoin) is a common anti-seizure medication. The major potential side effects of Dilantin are toxic blood levels (too high), and rash. Dilantin toxicity causes clumsiness while walking, much like that of alcohol intoxication. Dilantin rashes are very common and can be dangerous.The patient must quickly switch to a different medication for seizure control. Some patients experience fatigue with Dilantin.
• Tegretol
  Tegretol (carbamazepine) is a common anti-seizure medication. The major potential side effects are a rash, although far more rare than with Dilantin,  low  white blood counts, and double vision, when levels become toxic.  Some patients experience fatigue with Tegretol.
• Depakote
  Depakote (valproic acid) is a common anti-seizure medication. The most frequent side effect is a mild tremor in the hands. The liver can be injured by this medication. A rash is far more rare than with Dilantin. This medication is very harmful to the human fetus and cannot be given to pregnant women or nursing mothers.
• Keppra
  Keppra (levetiracetam) is a common anti-seizure medication that is taken in combination with another anti-seizure medication to help control seizures.   The most frequent side effects are fatigue, weakness, irritability, and anxiety.  This medication is very harmful to the human fetus and cannot be given to pregnant or nursing mothers.

(Note: changing a seizure medication requires consultation with a neurologist or neuro-oncologist).

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Communicating with Doctors

Primary Care Doctor
It is important to identify and keep in touch with a primary care doctor or family physician. Remember to ask each specialist to send copies of all letters and notes to the primary care doctor. The primary care doctor should be contacted for issues that arise with general health and insurance matters. For questions about surgery, radiation, and chemotherapy, and medications for the tumor, the specialists should be contacted by the primary care doctor or by the patient and family.

When to Call the Specialist
You should call the specialist in the following situations:

• After a seizure
• Severe headache or abrupt worsening of existing neurological problems.
• Swelling of the ankles and legs, particularly if the swelling is worse in one leg than in the other. This may indicate the presence of a blood clot in the large veins of the legs (this is called deep venous thrombosis, or DVT). The risk of DVT is quite high in patients with brain tumors. DVTs are dangerous because the clots can break off and travel to the lungs. Blood thinner pills are usually required after diagnosis of a DVT.
• Signs of infection—fever, chills, pain on urinating, unusual headache, stiff neck, sore throat, or severe abdominal pain.
• Signs of possible bleeding—unusual bruising, severe headache, unusual abdominal pain, bright red blood from the nose or rectum.
• Severe nausea and vomiting.
• A skin rash.

These are some of the situations in which a doctor needs to be contacted. Sometimes it is hard to know whether to call the doctor about a certain problem. If unsure, it is safest to call. Telephone numbers of the doctor and a number at which the doctor on call can be reached after hours or on weekends should be kept available. 

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Patient Responsibilities
There are some important things to do at home. These include:

• Keep a positive mental attitude.
• Take medications faithfully and as prescribed. Pharmacies sell pill organizers which can help as a memory aid
• Keep an up-to-date, list of medications on the refrigerator and a copy in the folder or notebook that you  bring to  appointments with your doctor.
• Keep an up-to-date list of all medical providers and their phone numbers on the refrigerator and a copy in the folder or notebook that you bring to appointments with your doctor. 
• Eat a healthy well balanced diet high in  roughage (whole grains, fruits and vegetables) to help avoid constipation.
• Take a multivitamin each day.
• Get some form of exercise-- even a little is better than none but avoid exhaustion.
• No change in usual sexual activity is necessary, but a condom and additional contraception is necessary when being actively treated. There is a high level of toxicity associated with treatment that could be harmful to the human fetus. Ask you doctor for additional information if necessary.
• Avoid alcohol. Some specialists allow patients to take small amounts of alcohol on occasion, but since alcohol impairs brain function and can worsen the side effects of medications, the safest policy is to stay away from it altogether.
• Be alert to signs of infection or bleeding.

Returning to Work
For most patients who are working at the time their illness strikes, taking a 3 - 12 month period of disability may be a good idea. It can be very difficult to have daily radiation treatments and continue working. The stress and fatigue produced by the illness, in combination with the treatment,  require you to get plenty of rest. Tumors in brain tissue often directly effect mental ability and/or physical ability. Many types of work become too challenging or even impossible. For patients who are significantly affected by their tumor, permanent disability is often best. The patient and close family members are usually best able to determine whether continuing to work will be practical.  (The clinic social worker and center financial counselor can help you apply for disability).

Inpatient admission to Massachusetts General Hospital
Following surgery, if it becomes necessary to be admitted to the hospital for treatment or for a complication, patients are usually admitted to the Neuro-Oncology Service. This inpatient service is under the leadership of neuro-oncologists (the “attending”), who is assisted by a neuro-oncology “fellow”, neurology residents, and specialist nurses. Physical and occupational therapists usually help with exercises. A case manager helps to make plans for discharge to home, rehabilitation, or other location.

The attending neuro-oncologist working on the inpatient service upon admission may not be the patient’s primary neuro-oncologist, since the hospital attendings rotate at the beginning of each month. However, all major decisions will be made in conjunction with the primary neuro-oncologist’s advice. The primary neuro-oncologist will make frequent visits to check on the overall progress during the hospitalization.