CancerCompass message board discussion started by Revibug on 6/11/2006 http://www.cancercompass.com/message-board/message/all,5628,0.htm Sat, 22 Nov 2008 00:00:00 GMT Sat, 22 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I feel like I'm living on the rollercoaster. Here's the update. My mom (48 years old) was diagnosed with GBM 1.11.06. This was the biggest shock of our lives and since the woman never had a headache in her life we're STILL trying to figure out where the hell this came from. Anyway, we're from Northern New Jersey and are fortunate enough to have the best hospitals right "next door" in New York City. We've had amazing experience with Columbia Presbeteryan, and her surgery, radiation, and oncology team are all there. My mom came home in Feb, 42 days after surgery. She needed PT & OT because she suffered a "small stroke" (neuro team 'dismissed' it and said it won't have any long-term affects) and although her recovery is coming along, it's been slow and steady. She's still getting OT & PT 3 times a week locally and has made great gains and is walking with a cane and is about 90% independent. The "only" major issues she still has are her balance and motor control. Like, she can shower, eat, get dressed, etc. by herself, but she needs the help getting in/out of the tub. She's able to walk down the stairs, but she has trouble with uneven surfaces, so when she has to go down the curb or whatever, we hold her hand. Anyway, she had an MRI in the middle of May and the oncologist said it looked "stable". We were happy, but everyone on the team would have liked to see the sucker shrink- oh I didnt mention that the surgey got over 90% of the tumor out. So yeah, we were happy because it came back stable AND she looks amazing! She's really coming along. BUT.... there was "something" on the scan that the doctors deemed "suspicious" and the doctors said she'll go for another scan in July. Well, she started getting headaches and nausea every day this week and last. Same time, around 5pm daily- wee thought it was due to the tapering of Decadron, but when we spoke with the doctor, she ordered another MRI for yesterday. I'm sure you can see where this is going... it grew back, and in areas it wasn't before. ALREADY!?!!? I was a wreck! I was trying to hold back tears, I didn't know how to tell the family.... I spoke with the doctor who said that she must stop Temodar (Saturday she wouldve started her 3rd cycle. She had one cycle of 125, then 255, and Saturday we were gonna start on 340 of Temodar. The doctor said she's not responding to it and that she'll start- as soon as tomorrow- Avastin and CPT-11 though IV. Can anyone please give me real-life advice on experience with this? We are all devastated because Temodar is supposed to be "The Gold Standard" and it didn't work... The hardest thing-as crazy as it sounds- is to see how well she's doing. How can you look so good, make such great gains, but have this crap in your brain!? I know that with Temodar pateints live "an average" of 15 months. I know, believe me, not to go by the online statistics that are found on different sites, but the "15 month" bit came from the doctor. She did say, though, that (60%) patients who fail the Temodar do great on Avastin and that it's able to shrink the tumor. Again, how could it be that my mother's GBM was active and that her second MRI looked "worse" than the first? SHE'S DOING SO WELL! She's walking better. She's not tired. She's funny, full of spirit, and is joking around like crazy! She knows EXACTLY what's going on and she's fully aware of what everything means, but she's "fine with it". And no, no, she's not in denial or pretending to be upbeat, because believe me, she's had her down moments. In any case, I'm lead to believe that MRI scans can/tend to look worse before they look better for many reasons, but I don't understand how a PERSON can look so great and have shitty looking scans. I pray every night that there was an error in reading the MRI, but we all know there wasn't. The doctor said it bluntly and directly: the scan look worse and it's growing. I just don't get it. She looks fantastic and is making tremendous gains in her PT/OT. How can this be? How can someone with such a disease look so good. Has anyone experienced this?? Maybe a family member? Maybe YOU? I must say that this is the hardest point in all this; she's not lying bedridden, she's not down, depressed, or sickly; she looks great. Please share. By the way: she was supposed to start her 3rd cycle of Temodar-would have been 340mgs-but instead we're starting Avasting/CPT11 on Thursday morning. We're going at 9am for a 4-hour infusion... I'd also LOVE some tips on handling this "very tough" (so I hear) chemo. Please answer and keep her in your prayers. Thank You for Reading! Revi Fair Lawn, NJ Revibug Sun, 11 Jun 2006 00:00:00 GMT Revi, You didn't say wether or not she had Rt/Temodar. The standard is resection + gliadel wafers (July 3, 2005)followed by radiation with a low dose of temodar then a much higher dose of temodar for cycles.. We did all that and around five months after surgery went to MD Anderson because the doc thought he saw progression. MD Anderson said "maybe" and gave us three "off protocol" trials. We did Tarceva from December to May. Just started Avastin/CPT-11. Most insurance wont pay for one or both of these very expensive meds. We are paying $7,000 every two weeks for this stuff. We switched Docs because the first wanted $12,500 every two weeks. The second doc was concerned about the risk of intracranial bleeding and hemorage with Avastin. My wife (42) said we have nothing to lose. So far all she gets is tired two days after; then back to normal. CPT-11 or Irinotecan (I run to the can) can cause severe diarhea. None here yet. Seen it hough. We carry Lonox around just in case. There is more info at Tobys site. Tobysfund dot com Good luck. Let us know all the details. like dose and frequency, etc. Av/CPT is based on a study at Duke where folks are getting it every other week three times and then a two week break. That is one cycle. According to folks in the trial, 50% have a 65% or greater reduction after two cycles. Good luck, Bob Cidorov Mon, 12 Jun 2006 00:00:00 GMT My mother had surgery 1/11/06 and then had radiation. She went on Temodar 125, then 255. She was supposed to start her 3rd cycle, but since the MRI on 6/7/06 showed "growth" we're NOT doing Temodar, but Avastin/CPT-11. Thanks for all the info. Can you please share any Avastin/CPT-11 "expectations"? Do people get more tired, sick, etc? Thanks! Revi Revibug Mon, 12 Jun 2006 00:00:00 GMT Here is what I know. More can be found on the drug manufacturers web sites; avastin dot com and pfizeroncology dot com/products/camptosar dot aspx Avastin is a antiangeogenic monoclonal antibody. It inhibits the tumors ability to recruit blood vesels for nutrition. CPT-11 or Camptosar Interrupts the DNA replication process resulting in cancer cell death. ********************************************** Possible Avastin side effects: Nosebleeds Nosebleeds were usually minor and stopped on their own by holding a tissue to the nose Call your doctor if you feel dizzy or faint or if the bleeding doesn't stop after 10 to 15 minutes Hypertension (high blood pressure) Standard oral medications were used to manage high blood pressure Tell your doctor if you've had high blood pressure in the past Proteinuria (too much protein in the urine) Other side effects included weakness, pain, diarrhea, and leukopenia (a reduced white blood cell count) Serious side effects you should know about In clinical trials for colorectal cancer, a small percentage of people treated with Avastin in combination with chemotherapy experienced serious side effects, including gastrointestinal perforation (2%) and slow or incomplete wound healing (1%). In rare cases, these side effects have been fatal. Patients taking Avastin with chemotherapy had a higher risk of stroke or heart problems compared with people taking chemotherapy alone. Talk to your doctor about these potential problems, especially if you are over 65 years old. Possible CPT-11 side effects: CAMPTOSAR may cause both "early" and "late" diarrhea. The early form happens within 24 hours of taking your chemo. It is often mild and goes away soon. The late form happens more than 24 hours after taking chemo. It can be very serious. Your doctor may suggest that you take a drug called ImodiumŪ A-D. It is also called loperamide. Be sure to take it just as your doctor says. This dose might be different than what is on the box. It will help control diarrhea caused by chemo. Your doctor may also choose to use an antibiotic. In rare cases, blocked bowel, colon problems, or liver disease have occurred. Always tell your doctor if you have side effects. CAMPTOSAR can prevent the body from making enough blood cells. That means your white blood cells may get too low. If so, your doctor may decide you need a drug that helps blood cells grow. Some people should be watched closely by their doctor while taking CAMPTOSAR. They include those who: . are over age 65 . received radiation in the pelvis or stomach . have trouble carrying out daily tasks due to their cancer . have 2 copies of the same gene (UGT1A1* 28) When you take CAMPTOSAR, your doctor may give you a drug that helps fight vomiting and diarrhea. This drug is called atropine. In some cases, CAMPTOSAR may cause heart and blood clotting problems. Doctors do not know for sure why this happens. ************************************************ The first dose of Avastin will probably take 90 minutes. The second 60 minutes and third 30 minutes. 30 minutes thereafter. Same dose each time. Because of the increased risk of bleeding there should be no surgery within two weeks of administration. Manufacturer says 28 days but the agreed upon time is two weeks. That's all for now. Is your insurance company going to pay for this? If so, who do you have? Bob Cidorov Mon, 12 Jun 2006 00:00:00 GMT I wason CPT-11 without Avastin for a few months in 2004. My tumor is a Glioblastoma with some sarcoma in there. The doctors said that it was probably working on only the Blastoma and not the sarcoma so we switched to something else. The only problems I had were that it made me very tired. Don't live by the statistics though. I was diagnosed in 2003. The doctors originally gave me 17 months. Well, I went passed my experiation date over a year ago. Brainy_chick Mon, 12 Jun 2006 00:00:00 GMT Hi. Thank you for your response and a mighty congratulations on your amazing story of hope :) May I ask how old you are? ((HUGS))Revi Revibug Mon, 12 Jun 2006 00:00:00 GMT In my 20's Brainy_chick Mon, 12 Jun 2006 00:00:00 GMT Revi, sorry we had to 'meet' like this as part of thr GBM caregiver club. That being said, a GBM diagnosis is not necessarily the death sentence the statistics might lead you to believe. Many of the statistics have been compiled since 1973 and it has only been the past few years that advancements have been made in the treatment of GBM. I agree, NYC has great hospitals. However, Brain Cancer is highly specialized and I would strongly encourage you to seek a second opinion from one of the major Brain Tumor Centers such as Duke and MD Anderson. I know a lot of people from Jersey, New York and Pennsylvania who go to Duke. You didn't mention if a genetic analysis had been performed on your mother's tumor. While not perfect, a genetic analysis can identify which treatments are NOT likely to work and which ones might have a better chance at working than others. Temodar only 'works' in about 30% of cases, so the gold standard is pretty poor in the case of GBM. CPT-11/Avastin has been shown in trials to cause complete or partial responses in about 60% of cases. HOWEVER, many of these responses have not been 'durable', meaning that after stopping treatment with CPT-11/Avastin the tumor grows back. That means further treatment after CPT-11/Avastin is indicated. Also, there are many promising clinical trials available now as well, and I would urge you to investigate those for your Mom. My wife was diagnosed with GBM 13 months ago and given one year to live. Her last MRI was clear and she is on CPT-11/Avastin right now. She has done Temodar, CCNU, and the IL-13 Phase I trial for newly diagnosed patients. She is doing fantastic. Except for the perpetual bad hair day, the tumor doesn't slow her down. She works, exercises, and chases our son around. Good luck! Gagbm Tue, 13 Jun 2006 00:00:00 GMT Hi Revi. My mom was diagnosed with GBM in August '05, had surgery to remove what they could, then did the radiation with Temodar. The 2nd MRI after the radiation ended showed tumor growth, so she is now being getting the Avastin/CPT-11. After her first dose, she was very, very tired for about 3 days, but she hasn't suffered from any of the other possible side effects, which is great. A week after the first treatment she seems to be showing improvement in her speech and memory. However I don't know if this is the effect of the treatment or the steroid that is administered along with the Avastin/CPT-11. I haven't asked the doc about that yet... I'm almost afraid to. What part of the brain is your mom's GBM? Anyway, that's my mom's experiance at this point. I'll let you know how it goes with each treatment if you like. Keep hope alive! Best, Devdaughter Devdaughter Tue, 13 Jun 2006 00:00:00 GMT Hi! Thank you and everyone for responding so fast! My mother's tumor was in the left temporal lobe. (I can't keep track anymore) The odd thing, though, is that it is NOT your "usual" GBM. It's got a very unsual shape and form, and it looked like pearls on a string, not one lump. How old is your mom, if I may ask? Where are you getting treatment? We're going to Columbia Presbeterian in NYC. We're starting the Avastin/CPT11 on Thursday. What steroid is your mom on that you said may be the cause of her speech and memory "issues"? Is that to be expected with this combo?? And when you said she was "tired", was she sleeping alllllll day? Was she "with it" the entire time?? Thanks! Revibug Tue, 13 Jun 2006 00:00:00 GMT Hi Bob. How do you know so much! You're amazing! You really taught me tons! It's great... I spoke to the oncologist about insurance and the various coverage issues I read about. She said they haven't had problems at all and the companies cover the avastin/cpt 11. The "worst" that will be is that she'll write a few letters to the company explaining the need for the meds. We have Medco, which my dad works for- so it should be fine. Let me ask you, too, since you're very familiar with this site- is there any way to "privately" contact memebers? For instance, is there any place we can list our email or AIM screen name?? Thanks! Revi Revibug Tue, 13 Jun 2006 00:00:00 GMT My mom's GBM is also in her left temporal lobe. She's 61 years-old. The speech and memory "issues" are a result of the tumor, not the treatment. It seems that the treatment has had a positive effect on her speech and memory. What I don't know is if it's the treatment or if it's the steriod that she gets along with the avastin/CPT-11 that's having the positive effect on her symptoms. I just hadn't expected to see positive results so fast. The steroid is decodron. Again, the effects of the treatment seem to be positive in regards to her symptoms. As far as the sleeping, she's totally with it and very frustrated with being so tired. She sleeps on and off, reads, watches TV, she just feels very tired. Keep me up on how your mom is doing. Best, Nancy Devdaughter Tue, 13 Jun 2006 00:00:00 GMT Hi Nancy, I read your email and my Mother also has GBM. She was diagnosed and had surgery on 5/25/06 which was also her 62nd Birthday. My entire family is devastated and we cannot figure out how someone that has been so healthy and never smoked or drank a day in her life could get something like this. She finished her 6 week radiation/temodar approximately one month ago. She got through it with flying colors and then 1 week after her radiation was completed she had a seizure. Ever since then she has not felt quite as good and has been experiencing headaches. We went to Duke to consult with a doctor and he said her MRI showed her tumor was growing back and recommeded she start treatment as soon as possible. He recommeded Avastin-CPT-11 or Gleevec, which is a pill cocktail. We live in Oklahoma and decided it would be more practical to do the treatment closer to home. We have an appointment tomorrow in Dallas with a neuro oncologist who does Avastin-CPT-11 and we are still trying to decide if the Avastin-CPT-11 is the right choice or if we should consider other options such as Gamma knife. We have heard a different opinion from her surgeon, her medical oncologist, etc. So we are very frustrated and don't know what is best. Can you tell me how your mother is doing on the Avastin-CPT-11? Has she had any bad side effects? Can she do normal everyday things and get out and enjoy life? Has the treatment been working well and shown improvements in shrinking her tumor? My mom has a brand new grandbaby that was born two days ago and she wants to be able to help babysit and get out and do all the things she was doing before all of this happened. She is scared about trying new things and any information you can give me would be very appreciated. I hope your mother is doing well. Thank you! Meredith Mmtulsa Wed, 30 Aug 2006 00:00:00 GMT