Gbm

<p>A family friend, 49, has what Ted Kennedy had --- and I guess lived with for 15 months, was it? She had surgery last week, which removed 50% of her malignant tumor. It's Level 4. Who here has also had intimate experience with that level of glioblastoma multiforme, in terms of what to expect? She is going to be treated with radiation and chemo; has begun the chemo with an oral pill, but not yet the radiation. What I'm mostly interested in is the level of care that might be necessitated in the near future here. Even since the surgery (which she tolerated well) she is still having difficulty "finding the word" when trying to communicate. Her words also trailed off when she tried to post on her blog yesterday. She gets confused if someone walks next to her; they have to walk behind her. She is afraid of falling downstairs and gets easily confused, can only handle short visits of 1-2 people, max, and is particularly averse to noise/chatter.</p>

<p>If you have any perspective to offer on what the family should prepare for, in terms of intensity of care at home, I'd like to hear it. Thanks.</p>

<p>I'm sorry to hear it.</p>

<p>A cousin of H's has this cancer, but lives at a distance, so I don't know the details of her care. I do know that she has survived longer than expected.</p>

<p>I can't help but wonder about cranial radiation and chemo in a case like that which you describe. Both are destructive of both brain function and quality of life. I wonder whether hospice would not be the better choice. For perspective, I just lost a parent to cancer, and the other parent and I provided home hospice care at the end. I think it might have been much better and have given a better quality of life for the last few months to have done so earlier.</p>

<p>Thank you for responding, Consolation!</p>

<p>Part of me agrees with you, though I'm no medical expert. I'm just having a tendency to agree because of various personal blogs of similar histories and group forums I have read over the past several days. Many of them say that quality of life, including already-impaired brain function, deterioriated precipitously after radiation (vs. before, with "just" the tumor present, or just after surgery), and that the radiation affected memory and speech specifically. There were gait (walking) problems as well, but of course I do not know if any of that was related in any of the cases described, to an inoperable portion of tumor agressing further into the brain and impairing function. Those bloggers were linking points in time to deterioration. (They're not medical doctors, either, just family members.)</p>

<p>There is an excellent article in The New Yorker--I think this week's issue--by Atul Gowande on this topic. You can read it on their website</p>

<p>Perhaps it was an earlier issue? There is a great article by him on terminal illness treatment in general (with several case histories illuminated), in the current issue. I'll have to look at whether he wrote anything on GBM itself.</p>

<p>My dad died recently of untreatable cancer...not gbm, it was abdominal, but he lived 4 year after diagnosis, with no treatment at all. He really did quite well for most of that time, he was weaker and less able, but he was also 85, so it was tough to tell if it was cancer or age. He did have to give up his local volunteer projects, but other things he did continue. </p>

<p>His world got smaller, but it was still the same him in the smaller world. He was not bald, not sick, he was just himself in a smaller world. Having gone through the entire experience with him, I would have to think long and hard before I would go for chemo/radiation.....I would seriously evaluate the prognosis for quality of life and length of life with each choice.</p>

<p>Obviously she is a friend and it is not really your business, but people in the midst of the cancer panic can take hold and fast decisions may not be the right ones for that person. The best you can do it encourage her and her family to ask the hard questions and make the decision that is best for them.</p>

<p>No, the article you describe is the one I meant. It doesn't address GBM specifically.</p>

<p>Part of the deal with my parent was that the cancer had metastasized to various places. Some of them were treatable with radiation, which solved pain issues and improved quality of life. But eventually it spread to the dura--not the brain itself, but inside the skull--and started to advance. Radiation would have caused brain damage. That was clearly the time to stop. Before that, they were still considering some new chemo protocols. I wasn't involved in the discussion at that point, so I don't know whether there was any real likelihood of them working. I don't know whether my parents had asked the oncologist that question directly. But if it was a matter of being able to treat things as they popped up while preserving acceptable quality of life, that was one thing. This was another. It was the oncologist who said it was time for hospice.</p>

<p>From what I have heard about GBM, radiation and chemo don't sound like options that will extend the quality time she has with family and friends. But of course I am not an expert and would never presume to tell someone in that situation what to do. But sometimes people are offered treatment options without ever being given the information required to weigh them properly. </p>

<p>Again, I'm so sorry.</p>

<p>Thank you to both of you. Consolation, your experience, while as you say not GBM, is nevertheless relevant to exactly what Atul discusses: the instinct, based on hope -- even irrational hope -- that life will be extended as well as a high quotient of quality of life. Coupled with that, the assumption by the medical community that everyone (patient and family) wants "life" preserved at all costs. By contrast, your family made some rational, calculated choices.</p>

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From what I have heard about GBM, radiation and chemo don't sound like options that will extend the quality time she has with family and friends.

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<p>You are correct.</p>

<p>Somemom,

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she is a friend and it is not really your business, but people in the midst of the cancer panic can take hold and fast decisions may not be the right ones for that person. The best you can do it encourage her and her family to ask the hard questions and make the decision that is best for them

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<p>Indeed, and that's exactly what I'm doing. :) I liked your phrasing about 'the smaller world.' Such a world would fit perfectly for her, in a variety of practical ways.</p>

<p>I read that Ted Kennedy was given the most aggressive treatment, yet he died exactly when predicted according to medical assumptions & case histories, raising speculation by one person that he might have lived as long without such treatment. (Who knows?)</p>