Beloop bij een hersentumor - Walter Taal image/svg+xml Beloop bij een hersentumor - Walter Taal 8 november 2019 Walter Taal 5B Palliative treatment Anti-tumor treatment no longer possibleIn case of a glioblastoma, almost always a phase is reached whereanti-tumor treatment is no longer possible. This period is also calledthe ‘palliative phase’.Symptoms during the palliative phaseIn this phase the patient could experience (an increase in) symptomsas an (in)direct result of the brain tumor. It is good to know thattreating these symptoms is possible.You can read more about this below (5B).Please note! A doctor can never predict how long someonehas to live. Treatment of symptomsAs soon as anti-tumor treatment is no longer possible, the phase ofsymptomatic or palliative treatment starts.Letter for patients and proxiesAt the bottom of this page is a link to a letter containing more informationabout the end-of-life phase for patients with a brain tumor and their closeones. This is information about the expected course of the final phase oflife and the care that can be provided in this phase. The letter alsoprovides advice and references in support of loved ones (and care givers).More clarity gives less uncertainty and therefore a better quality of life.Save the letter below however for later, if you are not up to it now. Youcan also have the letter read by someone else first.This is the end of this tool. For questions or comments, contact us: Phone: 06-22545185 of 06-33342008 (nurse practioners) Email: hersentumorpoli@erasmusmc.nl Click here for the letter 5A Symptoms in theend-of-life phase 4B Possible 2nd and followinganti-tumor treatment Tumor growth on the MRI scanSince regular MRI scans are made, tumor growth is likely to be noticedvia imaging before patients experience (an increase in) symptoms. Symptoms Usually, the tumor grows back at the same location as before. Therefore,it is likely that any symptoms patients might experience comply withearlier symptoms (see 1A). Contact us in case you start experiencingthese symptoms again. Epilepsy(Recurring) epileptic seizures are not always a sign of tumor growth.Many factors can cause epilepsy, such as stress and a lack of sleep.An increased frequency of seizures is always a reason to contact yourphysician. Please note! Not everyone with a glioblastoma experiences epilepsy. Effectiveness of additional treatmentTreatments against the tumor will become less effective. The tumorbecomes more resistant, meaning it becomes less sensitive to treatments.Side effects of additional treatmentSide effects can play a more prominent role, for example because ofdeterioration of the patient’s condition.BalanceThe assessment about the feasibility of additional treatment is based onthe balance between the chance of success and thechance of adverse effects. Besides prolonging thelife span, the quality of life plays an important role inthis decision. If the chance of success is small andthe chance of side effects if big, then another courseof treatment is not advised.DecisionEvery patient is discussed in a multidisciplinary meeting. This means thatdifferent specialists (such as the neurologist, radiologist, radiotherapist,oncologist and neurosurgeon) will attend this meeting. After the patienthas been adequately informed about the different options, he/she willmake the final decision together with the treating physician. Treatmentfocused on symptoms (see 5B) is also a choice. Side effects Effectiveness 4A Symptoms in case of recurrentgrowth of the tumor More information ... More information (only in Dutch)... Personalized treatment There is no standard treatment for a relapsed glioblastoma. The optionsdepend on multiple factors: your physical and psychological condition,the location and size of the tumor and the (timing) of earlier treatments.Additional to prolonging the life span, the treatment also focusses on thequality of life. The patient makes the final decision about his/hertreatment, after he/she has been fully informed about the treatmentoptions. Choosing to treat only the symptoms is also a possibility.Operation Another operation has to be technically possible and reasonable. Anoperation without additional chemotherapy and/or radiotherapy is usuallynot feasible.RadiotherapyGenerally, a second course of radiotherapy is not possible, unless thefirst radiation was long ago or if the tumor has recurred at a differentlocation.ChemotherapyFor some patients, another course of chemotherapy is useful. for experimental treatments given in a study context.Talk toyour physician about the possibilities suitable for you. Follow up Click here 3B (period after) finishing firstanti-tumor treatment Finishing chemotherapyIf there is no tumor growth and the patient does not experienceunacceptable side effects, 6 additional courses of chemotherapy(temozolomide) will be given after finishing radiotherapy.Follow-upAfter finishing chemotherapy, you will remain in follow-up at theoutpatient clinic. The follow-up consists of regular (every 3-6 months)MRI scans of the brain. As long as the tumor does not grow, no furtheranti-tumor therapy is necessary.No one can predict how long this phase lasts.Alternative medicineComplementary and alternative medicine (CAM) is the term for medicalproducts and practices that are not part of standard medical care.However, alternative medicine can affect the regular treatment.Therefore, discuss alternative medicine with your treating physician.ATTENTION! There are commercial companies (especially abroad) thatmake a lot of money from non-scientifically proven treatments. More information ... Please note! Not everyone experiences an early increase!Symptoms in case of early increaseDuring or directly after radiotherapy (and simultaneous chemotherapy)some patients experience a (temporary) increase in symptoms. Thiscan be the result of increased swelling of the brain tissue or the tumor,caused by radiotherapy. This is also known as pseudoprogression. MRI scan in case of pseudoprogression4 weeks after finishing radiotherapy, the first MRI scan is made. On thisfirst MRI scan, increased swelling can look like tumor growth. At thistime, it is unclear whether the tumor has grown or if these are the effectsof radiotherapy. Follow-up early increaseIn most cases, the treatment is continued. If your symptoms do notincrease any further and the MRI scan in the following months does notshow more growth (or even regression) of the tumor, then tumor growthis certainly not the case. Please note! Not everyone experiences early increase!Continuation of chemotherapy during (pseudo)progressionIn case of an increase in symptoms and/or tumor growth on the MRIscan (4 weeks after finishing radiotherapy), treatment with additionalchemotherapy will generally be continued.Dexamethasone for early increaseSometimes, an increase in the dose of dexamethasone is necessaryto suppress the symptoms resulting from the increased swelling.Second operation for early increase?Very occasionally, a second operation is necessary. However, this hasto be technically feasible. Use mouse or keyboard 2A (Temporary) early increase 2B Treatment during (temporary)early increase Use mouse or keyboard Symptoms and scan Treatment A B 1B First anti-tumor treatment The medicine, dexamethasoneWhen you have many complaints, the first step is often prescribingdexamethasone. The brain tumor may cause an inflammatory reaction.Dexamethasone is an anti-inflammatory medicine and therefore reducesthe swelling, which offers more space to the repressed brain tissue.The letter at the end of this overview (5B) provides more informationabout dexamethasone.OperationThe next step of treatment consists of an operation. Besides offeringcertainty about the diagnosis, the aim of an operation is to debulk thetumor, and to therefore reduce symptoms. Sometimes, an operation isimpossible because too much healthy brain tissue will be damaged. Inthat case, some tissue is removed (a biopsy) for examination during theoperation.ResuscitationBefore the operation, your preferences on resuscitation will be discussed.Treatment after the operationIn case of a glioblastoma, complete removal of the tumor is impossible.Therefore, additional treatment with radiotherapy and/or chemotherapy(temozolomide) is necessary. Your situationThis information is provided to you by your health care professional(s),because you have been diagnosed with a malignant brain tumor: aglioblastoma. You have probably already undergone surgery. Thisinformation addresses the expected course of disease and treatmentfor this tumor. More clarity results in less uncertainty and therefore a better quality oflife. If you have any questions, discuss them with your relatives andyour treating physician.Please note! This document addresses mainly addresses the physicaleffects and the treatment of a glioblastoma. For the emotional andpsychological effects we refer to:www.abta.org/about-brain-tumors/living-with-a-brain-tumor/)First symptoms and MRI scanThe first symptoms that you have depend on the location of the braintumor. Epileptic seizures, forgetfulness or character change can alsobe the first symptoms. An MRI scan provides a lot of information, butthe diagnosis can only be certain after an operation. Use mouse or keyboard 1A First symptoms and scan Use mouse or keyboard More information ... More information ... More information ... More information (in Dutch only) ... More information ... Tumor size Time 3C An interrupted line,because the time until progressionis not predictable 4C An interrupted line,because the time until progressionis not predictable Size of the tumor, plotted versus time The expected course of disease for a brain tumor patient Use the arrow keys or mouse to click on the Made by: Dr. W. TaalTranslation: E. van Diest Tumor size Time Symptoms and scan Treatment A B 3C An interrupted line,because the time until progressionis not predictable 4C An interrupted line,because the time until progressionis not predictable The expected course of disease for a brain tumor patient Made by: Dr. W. TaalTranslation: E. van Diest Size of the tumor, plotted versus time 1B First anti-tumor treatment 4B Possible 2nd and followinganti-tumor treatment 5B Palliative treatment 1A First symptoms and scan 4A Symptoms in case of recurrentgrowth of the tumor 5A Symptoms in theend-of-life phase 2A (Temporary) early increase Use the arrow keys or mouse to click on the The expected course of disease for patients with a brain tumor The expected course of disease for patients with a brain tumor The expected course of disease for patients with a brain tumor The expected course of disease for patients with a brain tumor Use the arrow keys (on the keyboard) or click on the screen Dr. W. Taal More clarity = less uncertainty = a better quality of lifeIt is possible that you do not feel ready for certain information. In that case, save this information for later. You could let someone else read this information first. For questions or comments, contact us:Phone number: 06-22545185 of 06-33342008 (nurse practitioners) Email: hersentumorpoli@erasmusmc.nl Copyright ©2021 All rights reservedErasmus MC retains all intellectual Property rights, copyrights in any text, graphic images, and software owned by Erasmus MC and hereby authorizes you to electronically viewing the information. You may not commercialize, mirror, modify or otherwise alter any files in this website for rebroadcast, or print theinformation contained therein, without written permission from Erasmus MC. Except as expressly provided above, nothing contained herein shall be construed as conferring any license or right under any Erasmus MC copyright, patent or trademark.
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