What Happens After Chemo and Radiation

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What Happens After Chemo and Radiation

by Louise_Rose on Mon Oct 03, 2005 12:00 AM

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Dear all My sister has a brain tumour which after surgery was classified as a"low-grade" astrocytoma, 3 1/2 years ago. She has regular follow up using CAT scans. Last year the tumour was found to have returned and she had radiation therapy followed by 7 months of chemo. She was really sick during the chemo and had to have it in hospital and used a port, to help with the quantity of anti-nausea medicine required in combination with the chemo. No-one in our family wants to speak of grades of malignancy, life-expectancy etc.,and surgeons and oncologists only speak using the most general terms when there are consultations. My sister seems to want no other information. After the last CAT scan we were told over the phone the result was 'OK' but no more. As the eldest in the family I would like to be prepared for what may happen next, in order to be able to help other family members including my parents. We know that another operation is not possible because the tumour is not now accessible. Can anyone tell me whether there is any hope of a decent life expectancy, what the prognosis is, what we should expect? Am I right to assume that the tumour is now grade 3? She seems OK now apart from very tired and generally very listless and not a happy person, but getting around normally. I would be grateful for more information as doctors have told us very little and my sister doesn't seem to want us to pursue the subject. Thanks in advance for any contribution.

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by Luvingwife on Mon Oct 03, 2005 12:00 AM

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Dear Louise Has your sister given written permission to her docs to have her private medical information revealed to you? The HIPPA laws require this, and without it, the medical people are probably not going to talk to you. That being said, here are some specific questions that I would ask: Where is the tumor (s) located; what is the size of the tumor? What is the grade? What is the diagnosis: Astrocytoma III or Glioblastoma? Was a biopsy done when the tumor returned last year? If so, what did the pathology reveal? What future treatments might be considered for your sister? If they say "chemotherapy," ask the name of the chemo and how it is administered. Is she a candidate for any future external beam radiation? Is she a candidate for stereotactic radiosurger? Did the scans reveal any necrosis from previous radiation. What are the medications she is now on (anti-seixure, steroids, anti-anxiety??what are the dosages, and what are the side effects? I have learned that many of the problems, deficits and quality of life stuff result from side effects of the meds and treatments, not the tumor itself. There are long term survivors out there.If they give you a prognosis, don't let it scare you. There are many variables. Here are 2 excellent web site to learn about brain tumors. www.virtualtrials.com and www.braintumor.org Learn the vocabulary so you can be knowledgable when you speak to the docs. I am the wife of a glioblastoma patient, diagx May 2004. there is a huge learning curve, but you can be a great help to your family if you are willing to learn all you can. Good luck Luving wife

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by Louise_Rose on Tue Oct 04, 2005 12:00 AM

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Thank you so much for taking the time to respond to me. Indeed your list of questions is comprehensive and extremely useful. The next stage is finding a way to have all these busy people speak to me, and to gently convice my sister that I should do this. I'll be back on line when I've tried this. Is it possible to undergo more than one round of chemo? (She did 8 months). Many thanks Louise
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