CancerCompass message board discussion started by Lindahad on 3/22/2006 http://www.cancercompass.com/message-board/message/all,4894,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ WE found out my Dad had a brain tumor 1/1/2006, nice way to start off the new year! He had surgery on Jan 3, and the biopsy showed it was a psuedotumor. They told us he would make a full recovery and the tumor would not grow back. Well 5 weeks later his tumor grew back to the size of a baseball. He had a second surgery 6 weeks after the first one. This time the biopsy showed he had a glioblastoms. Two weeks after the 2nd surgery the MRI showed his tumor was back and the size of a baseball again. He is now 4 weeks post 2nd surgery and the doctors have finally started him on radation and temador. He is on high levels of temador he is to take 1 temador every day for the next 42 day, the same length of his radation. He is due to have another MRI in 3 weeks. My question is has anyone else ever heard of such high levels of temador being given? I understand his tumor is a fast growing agressive tumor, but it seems very extreme - and is it safe at those levels? Lindahad Lindahad Wed, 22 Mar 2006 00:00:00 GMT Lindahad, What is the dose of Temodar? Radiation with temodar is the standard. The dose is usually based on the size of the individual. During RT it is usually 1/3 to half of the standard dose given on the 28 day cycle; which would come a few weeks after the 42-47 adys of rt/temodar. Got to temodar.com and read the literature. Take note that in bold letters on the bottom of the patient hand out it says that a profilactic dose of antibiotics should be used while on temodar with radiation. Watch those "absolute neutrophil counts". Question: did they put gliadel wafers in the tumor bed when they closed the last surgery. That is also the standard. Relatively new, but the standard just the same. Same for rt/temodar. Both are relatively new drugs. There has been a lot of press lately about how different drugs work for different poeple and how the molecular profile of these tumors correlates with which one works for who. I would ask yer Doc about the Molecular profiling institue and what they may be able to do. For instance, recent research indicates that certain chromosome mutations indicate wether or not Temodar will work or not. For the majority it does for a while. If your not in that category, why waste the time and money. There is a lot more to it than that. Looks to be good stuff. Do not mistake it for Chemosensitivity testing which is questionable in value. Keep us posted, Bob Cidorov Wed, 22 Mar 2006 00:00:00 GMT Lindahad, the standard Temodar dose during radition therapy is 75 mg/m^2. The m^2 represents is body surface area, based on height and weight. After radiation, the Temodar dose is typically increased to 200 mg/m^2 and given for 5 days with a 23 day break. This cycle is repeated from 6-24 months as long as the patient continues to respond to the drug. Gagbm Wed, 22 Mar 2006 00:00:00 GMT I am not sure of the dosage of temador my dad is on. He is about 5'10" and average weight. I thought the temador was done on a 28 day cycle as well. So I was shocked when my dad and step mom said he was taking it everyday for 42 day straight. And no they did not insert a wafer in on the 2nd surgery. I also know when we found out the biopsy, we asked if we could make an appointment for radation and chemo right away, they said no let him think about what he wants to do. When he made up his mind to get the treatment, it still took 2 1/2 weeks before he even started his treatment - they kept saying "he can wait, he can wait". So I sort of feel that they think it might not work and they might just be doing because he wants to try. I don't know. Lindahad Thu, 23 Mar 2006 00:00:00 GMT my father did not get the radiation and temodar right away either becasue we were told that they had to wait for the swelling to decrease post op. They waited 2 weeks --they insisted that the stitched be taken out and they confirm swelling descrease and a some healing had taken place. Otherwise they said the radiation esp may cause other complications. My father had two surgeries as well but in different locations --he had 5 tumors. Hope this helps. My father was put on the 28 day cycle with high doses of raditaion. White Kitty Thu, 23 Mar 2006 00:00:00 GMT thanks for all your comments. I did look at the temodar wed site and it explained some and made me feel better! That would make sense about waiting for treatment due to swelling there is probably more swelling after the 2nd surgery. Because after the first surgery they said they needed to get going on the treatment, before we even got the biopsy back they had made a mask and had everything in place so they could start asap. But then the biopsy came back good and he didn't need treatment after all. But they still waited 4 weeks after his second surgery to start treatment. It is so hard because we are getting much of our information from my step mother, and sometimes when me and my siblings talk we are getting different stories from here. Dont get me wrong she means well, and is taking great care of him. When we go to visit we try not to talk about his condition too much, we all have decided that we don't want our visits to be just about his brain tumor. We are all coming to the conclusion that Easter might be his last holiday with us and we are all trying to stay as upbeat as possible. thanks again - if you have any comments that would be helpful please pass them along.Lindahad Lindahad Thu, 23 Mar 2006 00:00:00 GMT Hi Bob: I just wanted to check with you on how Toby was doing. Is she back on ssz. My brother also took it during rad and chemo but it seemed that he developed an allergy to it as his whole body broke out in a rash. He would like to retry it and wondering if there are any research results out on it to date. I noticed you responded to the temodar dosage question. My brother was 222lbs and 71 inches tall when his doctor put him on 150 Temodar daily for 30 days while taking radiation. When he started the five days on he was 198 lbs at a dose of 400mg per day. He took two months of the 400mg and it just zapped him. Continued to lose weight. At 185 lbs his doctor continue to tell him to take 400 but he travelled to Florida and met an oncologist who recomended to drop to 300mg which he did and he handled it much better. He is now 176 lbs. This oncologist insists that they follow the protocol of 150 x body surface area (BSA). He confirmed that my brother had a BSA of 2. at the 185 lbs. Bob my brother is still on dilantin and had problems getting it regulated but it has been now for the past month. However, he takes these episodes where he describes them as his core of his body heats up sometimes more intense than other spells. When he started experiencing these first the doctor attributed these to his dilantin levels being too low or too high but now the dilantin levels are ok. In all your exposure to the many people you have talked too have you heard of this and what might be the root of the cause. Best regards to you and Toby. Nora Seacoast Sun, 26 Mar 2006 00:00:00 GMT Hey Nora, No current research on Ssz. Some rumors about what the protocol may be (500mg tid). We are still taking 500mg six times a day. Toby has started taking it two times now. Pre and post neutropenia/temodar/rt. Both times developed diarhea which went away. The first time she also developed a rash over her entire body but we were also taking lots of other stuff to include anti-siezure meds. Which are a much more likely cause. Ssz is asprin and sulfa. You would think an allergy to either would be apparent already. Lots of sulfa in foods. Esp. wine. Even so, i would treat the rash and see if it passes. At the very least slowly introduce the med.. Toby is doing amazingly well. There was some concern about possible progression but neither the docs here or at MD Anderson could rule out post treatment effect. Last MRI showed much less edema and slighlty less pushing sround of the midline and ventricles. Neurologically she is doing much better. Toby, myself and our two boys are all going back to Tae Kwon Do class this next Saturday. We haven't been since her Dx last June. We were all a belt away from black belt when this struck. That is how well she is doing. We will take it slow just the same She is also on Tarceva and Carboplatin (fourth 21 day cycle). Highest doses anyone here has seen. Toby has been amazing. Best of luck to you Nora. Let us know how things go. Love and prayers to you Bob Cidorov Mon, 27 Mar 2006 00:00:00 GMT I just wanted to let you know that we are going thru the same thing, I am desperate for any info that any one has to save my mom. I am looking into duke in north carolina I have to peop;e that have survived this and one is 3 yearsago and the other is 10 so have hope!!!any info would be great Stacyjoel Tue, 28 Mar 2006 00:00:00 GMT Dear Linda, I am so sorry to hear about your dad's recent diagnosis. We have been walking this journey since finding out that my dad had a brain tumor on August 21, 2005. It is scary and devastating, yes, especially when you are hearing so much information. My dad had surgery on Aug. 29, followed by 33 days of radiation along with 42 days of Temodar. For his size (6' tall and 196 pounds), his dose of temodar at that time was 140 mg. He then started "Maintenance" temodar at a dose of 280 mg, which he takes for five days followed by a 23 day break. This cycle repeats itself every 28 days if he is tolerating the temodar and if his blood work is good. My dad sees his medical oncologist every month for blood work and a physical exam the week prior to his scheduled chemotherapy with temodar. My dad has an MRI every three months at this time. My dad's most recent MRI in March showed that things are stable to slightly improved with no evidence of tumor growth!! My dad is most likely going to continue taking Temodar 280 mg five days each 28 days. He will be making this decision in May. So far, he notices that he has reduced energy (probably a major understatement) and constipation and a loss of appetite as side effects. My dad is on prophylactic antibiotics Bactrim which he has taken two times a day on Tues. and Fridays since he started chemotherapy with temodar. This is to prevent pneuomonia. I am pleased to report now that my dad is seven and almost one-half months since his initial diagnosis. He is brave, courageous, and an inspiration to me every day. He recently joined a fitness club and signed an 18- month contract. He is fighting hard to live and nothing that he has read or heard is going to interfere with his plans to live!! I know that you are inundated with information, prognosis info, etc. ... I have found this message board to be extremely helpful. It is okay to talk with your dad about all that he has been thru because it is part of who he is. My family is making the most of every good day that we have together. We are hoping and praying for quality and good days, and yes, a miracle. Take care. Rondi caring daughter Tue, 04 Apr 2006 00:00:00 GMT HI what kind of tumors did your dad have and do you knowwhat grade, my brother has 4 anaplastic astrocytoma grade 3 thanks Marilyn56 Fri, 21 Jul 2006 00:00:00 GMT