Latest messages for CancerCompass discussion http://www.cancercompass.com/message-board/message/all,65010,0.htm Sat, 18 May 2013 00:00:00 GMT Sat, 18 May 2013 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ On Mar 27, 2013 4:30 AM ourVictory wrote: Should I understand that around every  6 months after  his latest avastin infusions  there is a recurrence- if so how many by now?- that forces him to go back to avastin. I myself have a similar life quality without the sinusitis.Yes for my husband that has been the case. It has happened 3 times after being off Avastin treatments for six months. It has been two months and so far ok. Next scan is May 1,2013. The sinus problem is not that bad. Its more of a chronic condition. Good luck to you and keep us posted. Stacey taylors13 Wed, 27 Mar 2013 00:00:00 GMT Should I understand that around every  6 months after  his latest avastin infusions  there is a recurrence- if so how many by now?- that forces him to go back to avastin. I myself have a similar life quality without the sinusitis. ourVictory Wed, 27 Mar 2013 00:00:00 GMT Have you looked into the Dasatanib and Avastin combination clinical trials?  It sounds promising.  Something to think about:  once you start Avastin, you are not eligible for many clinical trials.  I feel as though our NO scared us into taking Avastin.  I wish we would have had more time to research other clinical trials.  That's the difficult thing with GBM.  There's really no time to hesitate when making treatment decisions.  I wish you the very best! RobinMB Wed, 27 Mar 2013 00:00:00 GMT Avastin is not for everyone. In fact I had a friend with GBM who had a colon dissection and had to have a colostomy for the rest of her life. But for my husband it has been a miracle. He began with treatments every 2 weeks, then 3 weeks, and 4 weeks. But his last 9 months of treatments were every 3 weeks. He never had any side effects with maybe exception of chronic sinusitis. If and when his grade 3 GBM returns (usually 6 mos after last treatment) he will go back to Avastin since it works for him. He doesn't want to every do radiation again and surgery won't be an option because of location. Guess this will happen at some point. I will worry then. As for his quality of life, he is still very independent, he drives, he stays busy with home projects and hunting and fishing. He has terrible short term memory but he is ok. Life was/is rough at times but he is BLESSED. Good luck to all my CC friends. I am here if you have any questions. Stacey taylors13 Sun, 24 Mar 2013 00:00:00 GMT Your situation is not uncommon.  GBM is one of the toughest forms of cancer, as it robs you of the person before it takes the body.  I think you did the right thing in treatment, but there is really nothing at this stage that is a guarantee of a beneficial outcome.  Most of us understand and sympathize with your situation, and wish for you peace and lack of guilt.  As for oncologist not calling back, patient advocates need to be persistent, but not confrontational.  While the average life expectancy post-dx is 18 months, some live longer (and a few much longer).  My brother lived nearly 24 months (2 surgeries, radiation, chemo, Avastin) but there was never any doubt about eventual survival. Sonso Sun, 24 Mar 2013 00:00:00 GMT How often are all of you receiving Avastin? and also what comes next AFTER AVASTIN if needed?/Myself after Temodar, Radiation, irinotecan and my own and friends search for help , for example bluescorpion venom since Sept 2010. I started it-avastin- every two weeks around a year ago-march?2012 and I am now at every four weeks.Beside s mild seizures-that do scare me- I do have a bearable life quality and capabale of doing almost EVERYTHING ON MY OWN... OH YES AROUND MY THIRD INFUSION IT WHIPPED MORE THAN HALF OF IT!  ourVictory Sat, 23 Mar 2013 00:00:00 GMT My mother had her tumors removed July, 2010, we had a normal mother for about six weeks, then radiation, she lost a lot of brain cells and our mother was never the same. After radiation she started Avastin and slowly went down hill (not talking much and when she did she didn't know what she was talking about, spitting food out and not swallowing food) for a year that she was having these treatments, treatment was stopped Oct. 2012 and she seemed to start smiling and laughing and doing pretty good except for still not swallowing much. An MRI was done and Dr said it looked like tumor was growing back, treatment was started back, she did 2 treatments and could barely walk. Another MRI done, the dr couldn't decide what was on the test (bleeding or tumor) and we couldn't get him to call and tell us and mom was doing so bad that we knew she wasn't strong enough for any more treatment and we stopped them after 2 in Feb. 2012. No Dr ever called us and asked us why she wasn't coming in or returned our phone calls. Anyway it is now March 2013 and mom has been bed ridden for a year, she can't do anything for herself except maybe scratch her nose, but she is eating and has gained weight. So this "tumor" that she supposedly had growing obviously really wasn't growing or even a tumor. I'm wondering if she even had a Glioblastoma grade IV.  She wasn't suppose to live 18 months and we are now at 32 months. She is 73, has no quality of life at all. If we had know this is what would have happened we would not have done any treatment. The treatments may have kept her alive but that is all, it took EVERYTHING else from her. She knows us, can say our name some time, but can't tell us what she is thinking what she wants, nothing. I think we would of said no treatment if we knew this is how she would of turned out. We are happy to have her but in body only, our mother has been gone for 30 months. jadajag Sat, 23 Mar 2013 00:00:00 GMT Great News. Im just looking into Avastin as chemo and rad may not have worked. Will find out in three weeks. Do you know of other people who have used avastin and had success. Thanks for updating it was hard to find people happy with avastin pooliepoo Sat, 23 Mar 2013 00:00:00 GMT Excellent news! jon4156 Fri, 22 Mar 2013 00:00:00 GMT On Mar 24, 2012 10:36 PM taylors13 wrote: Hi, my husband has done two 1 year treatments (average every 3 weeks) Avastin saved his life. His story began June 2008. Only side effects was nose bleeds (not too bad). He has been off treatment since Sept 2011 and doing fine. Keep us posted on her progress. We all learn from each others stories and experiences. StaceySaw this old post of mine.  Wanted to update.  My husband just hit 5 year survival status.  He has done approx 60 Avastin treatments in the last 4 years.  He is stable and currently off treatment.  With exception of bipolar symptoms he is physically doing well and last scans in Feb. 2013 looked better than ever.  Never give up HOPE!!!  taylors13 Fri, 22 Mar 2013 00:00:00 GMT On Mar 24, 2012 10:36 PM taylors13 wrote: Hi, my husband has done two 1 year treatments (average every 3 weeks) Avastin saved his life. His story began June 2008. Only side effects was nose bleeds (not too bad). He has been off treatment since Sept 2011 and doing fine. Keep us posted on her progress. We all learn from each others stories and experiences. StaceySaw this old post of mine.  Wanted to update.  My husband just hit 5 year survival status.  He has done approx 60 Avastin treatments in the last 4 years.  He is stable and currently off treatment.  With exception of bipolar symptoms he is physically doing well and last scans in Feb. 2013 looked better than ever.  Never give up HOPE!!!  taylors13 Fri, 22 Mar 2013 00:00:00 GMT We are in the same boat as you.  My husband's tumor started regrowth about 2 months after radiation and chemo.  He's now doing the Avastin and Temodar and it's kicking his butt.  We've done 2 treatments of it so far.  They are putting in a port this week for him.  It seems to be kicking his butt.  I'm hoping that we'll see some improvement soon. Glitzy1294 Mon, 04 Mar 2013 00:00:00 GMT For those of you who had improvement with Avastin, can you please tell me how soon it happened?  My husband had his first infusion last week, and the day after the infusion he felt great, but then seems to have declined after that.  How and when do you know if you may be in the lucky 40%?  He is on Avastin and Temodar.  The tumor reoccured one month after completing the standard radiation and chemo and that is why he has been put on Avastin now.         flagoni Sun, 03 Mar 2013 00:00:00 GMT My husband's GBM was not methylated and he was on Avastin/Tarceva (clinical) for about 11 months (after surgery to remove the tumor and the traditional radiation/temodar period) also without any regrowth.  However, the cancer did begin regrowth this past December.  He has just started on another clinical that is administering a vaccine along with the Avastin that they are hoping will help the body's immune system work with the Avastin to stop or slow the growth of the cancer.  My understanding is that, for newly diagnosed GBM, after radiation/chemo, and after testing for some specific expression within the tumor...there is an ongoing study with this combination that has had some very good results.  Lisa jjcsdaisy1 Fri, 01 Mar 2013 00:00:00 GMT Avsatin worked great for me for about 11 months.  we caught this 2nd regrowth early and when it was tiny so we will see what strt did for it.  only side effect I have with it is fatigue the day after infusion jpearson472 Fri, 01 Mar 2013 00:00:00 GMT Hi Suzanne, I was just wondering how your husband is doing on Avastin. My husband has been on it for 21/2 mos. now.  He is very fatigued, but we don't know if it is from Temodar or Avastin. Did his blood pressure go up?  My husband's BP was always very good until now.  It seems to go up each month.  His last MRI showed that the tumor was stable--no progression, but no reduction either.  And there was more edema in his brain. Hope to hear from you soon. Robin from NY RobinMB Thu, 28 Feb 2013 00:00:00 GMT Hi Donna, was your GBM operable?  My dad just turned 55 and his is not operable he was dx 4/12 and is still hanging in there. alexyj23 Mon, 28 Jan 2013 00:00:00 GMT Hi, my husband has done two 1 year treatments (average every 3 weeks) Avastin saved his life. His story began June 2008. Only side effects was nose bleeds (not too bad). He has been off treatment since Sept 2011 and doing fine. Keep us posted on her progress. We all learn from each others stories and experiences. Stacey taylors13 Sat, 24 Mar 2012 00:00:00 GMT Well to all of you with all your great info and input of personal experiences. . . Thank you We just got back from Dana Farber. On my mother's most recent MRI the tumor has stabilized as the Docter said it looks better than stabilized. The Avastin appears to be working. They are continuing the Avastin treatment. The are also continuing the tapering of the steroid. It would be nice if she could get off the steroids they are brutal. All the side effects she seems to be experiencing seem to be from the steroid. Although the fatigue side effect from the Avastin is starting as the steroid decreases. But she has been having trouble sleeping for months. So I think the fatigue is welcome at this time. She is still staying positive and wanting to continue doing as long as she can. All of your comments have been very comforting these weeks and I plan on continuing to use this site. Thank you Kris  Krystalbleu Sat, 24 Mar 2012 00:00:00 GMT Very interesting  Thank you for your info. Krystalbleu Sat, 24 Mar 2012 00:00:00 GMT Hi Krystalbleu, I am very sorry for what you are going through.  My dad, 75, was diagnoised a year ago and is still doing pretty well considering.  He has Avastin treatment every 3 weeks and has been for months.  He also was in a clinical trial at Weill Cornell in NY where they used a cathater to travel through his body to the brain, through the blood brain barrier and they shot Avastin directly on the tumor.  Since then the tumor has shrunk for the last 5 MRI's.  My dad has lost a lot of strength, but is in good spirits.  He is getting stronger, but it's a long haul.       mel783 Thu, 22 Mar 2012 00:00:00 GMT Dear Whoknew, Those are questions without an answer. I keep asking myself IF we had done routinely MRI during check ups ( usually done neck down ) we could have found it sooner, IF we have noticed something we could have found it sooner too. Only questions with no right answer..... Don't be hard on yourself, you were a great sister and this is the answer you need to have ! Cris Cristiana Sun, 18 Mar 2012 00:00:00 GMT My sister is gone and still I read this site daily, I guess it's become a habit. Or maybe it's because you all are the only ones who really know what we went through. In hindsight I wish that Avastin was used right away instead of waiting for regrowth. My sister had regrowth right after radiation but the doctor at Duke said maybe it wasn't (all local doctors said it was a tumor), maybe it was something from radiation, and to wait two months to be sure. That didn't set right with me but what could I do? So when we went back in two months it was a tumor after all and had grown drastically. If they would have started Avastin right after radiation would my sister have had a better quality of life? Would she still be here? I am not blaming anyone but I sit and think, a lot. I would like to see them use it sooner, not wait for the tumor to come back, would it make a difference? whonew Sat, 17 Mar 2012 00:00:00 GMT GBM is so very hard to treat because it is so "multiforme"--it varies so between patients and sometimes within the same patient.  That is why Avastin works for some, and does nothing for others.  That is why temodar works for some, and does nothing for others.  My husband had very late stage disease when he stopped treatment back in November--a large tumor and dissemination into the cerebrospinal fluid (diffuse progression).  From everything I read, the leptomeningeal metastases is an "ominous end-stage event". He was put on decadron, and is still on Keppra and lovenox (for his 3-foot long blood clot). He is still here 4 1/2 months later.  It has been a struggle, but he still knows who we are and is not yet bedridden.   He sleeps most of the time and has daily headaches, but still has some nice moments with our sons. Anyway, this disease is very unpredictable and you really don't know how it is all going to play out.  When the quality of life becomes terrible it is a whole different ballgame.  My husband's quality of life was worse on treatment.  He dropped 30 pounds from his already trim frame from August to November.  Since he stopped treatment and started steroids, he has put on alot of weight, but is enjoying food immensely and has a glass of Bailey's Irish cream every night. Anyway, I am rambling but sometimes stopping treatment is a viable, sensible option--a blessing.  Sally loveiseternal Fri, 16 Mar 2012 00:00:00 GMT My mom's (age 72) tumors were removed 7-2010, after 6 weeks she had 6 weeks radiation with Temodar. 10-2010 she started Avastin very 2 weeks with Temodar 5 days a month. She did this for a year, all MRI's looked good. She had a bad quality of life from the time radiation started. Mom never did anything after Avastin started but set, she lost her muscles. She could barely get a sentance out without forgetting what she was going to say and that got worse as she went along. Her weight started to go down right away from155 to 109 now. Avastin was stopped 10-2011 and for two months she seemed more lively, trying to talk and smiling and seemed happy even though she can do NOTHING for herself. She had an MRI and it showed something but couldn't be sure it wasn't a tumor so Avastin was started again 1-2012, she had about 4 treatments and then an MRI that they say shows something a tumor or a brain bleed (bleeding is caused by Avastin). I think we have decided to stop all treatment. Since the MRI mom doesn't talk at all, doesn't act like she knows you are talking, barely eats and doesn't move arms, legs or anything. The Dr. wants her to continue treatment. We don't see the point. Avastin keeps the tumors away but she looks like she is so miserable that we just don't want to put her through it any longer. I don't think she is in pain, it is just like she isn't there any more. It is very sad. jadajag Fri, 16 Mar 2012 00:00:00 GMT OKay, I just went and typed in tumor eradication.  Usually, I came up with Mark's story.  Not so much this time.  Couldn't find it.  So I am going to give you the smoothie recipe so you don't have to look for it. 1 cup green tea 1 tbsp. wheat grass 1 tbsp. super foods 1 tbsp. ground flax 1 tbsp. flax seed oil - unfiltered 1/3 - 1/2 cup plain whole milk yogurt 1/3 c frozen raspberries 2/3 c frozen blueberries 1 scoop whey protein Mix all ingredients in blender - add whey at the end. I have added a few other items to the mix. 2 tsp white lightening 2 tbsp soy protein 2 capsules amla fruit - opened and poured in 2 capsules milk thistle - opened and poured in substituted soy vanilla yogurt Use organic when possible. Lotto55 Thu, 15 Mar 2012 00:00:00 GMT My husband was diagnosed on 4/18/11.  No surgery.  Temodar/radiation for 6 weeks.  Couldn't complete the Temodar due to low platelets.  Did two months of the 5 day/month Temodar but that didn't work.  Was put on a clinical trial using cilengitide (infusion) and cedirnaib (daily pill).  First MRI in Nov. was great - significant shrinkage yay.  Between Christmas/New Years, he developed vision issues and an MRI showed growth/swelling again.  He started Avastin in Jan. and so far all looks positive.  He also is on steroids however and it takes forever to tapor off them so until I hear an MRI looks great when he has been off the steroids for a while , I will feel more positive.  We have yet to have a good MRI unless he is on steroids.  Our family has done a lot of research and I know this is long but hopefully it will help you all.  Google tumor eradication and get the recipe for the smoothie.  Next go the Ben Williams website - he is a 16 year survivor of GBM.  Also check out the life extension website - lef.org and type in glioblastoma.  It will give you suggestions on herbs/supplements (as well as dosage levels) for this disease.  Last, but not least, stop eating meat.  My husband eats some fish but we have changed his diet up to incorporate a plant based diet.  Not sure we can go totally vegan but Rome wasn't built in a day either.  Hopefully some of this will help you.  If you are dealing with a low platelet count, add shark liver oil to the diet.  My husband was at 98,000 on March 1 and today was registered at 120,000. I give him one with each meal. To all of us dealing with this horrific disease, never give up. Lotto55 Thu, 15 Mar 2012 00:00:00 GMT The reality of this disease is to get your affairs in order. Especially with mom in the fact that when the tumor progresses it effects her communication and comprehension. We have done the five wishes, discussed cremation, memorials, I've been added to all of her bank accts ( which I've had to sign her checks at times when she is unable to sign. We also have Hospice palliative care involved. A nurse comes in once a week and at lows we've been able to get everyone in for support . It's best to get the patient acquainted with the team they'll have. And they are truly amazing support team. Also I recommend a great book that helps you prepare for the journey we are all on with our loved ones: Final journeys it's written by hospice workers. It is a great way to see all scenerios from the outside. Although nothing will truly prepare us for the end the more you prepare the less stress it is for the patient and they can enjoy each day. When we knew we were at the end with my father in law who hAd lung cancer we were able to surround him and let him know he fought a good fight but he could go now we would be okay and he passed within minutes and peacefully. I remembered when my mom was first diagnosed people would ask are you angry? But I'm not angry I'm sad but when we go in and out of Dana farber and especially see the children we feel very fortunate and appreciate the time we have. Enjoy each day ! Krystalbleu Thu, 15 Mar 2012 00:00:00 GMT Lots of good answers here; most of the people I've been involved with seem to feel that getting on Avastin earlier is best.  It is becoming the standard of care (resection, radiation, Temodar, Avastin).  There are the various combinations that each patient is trying, but the oncologists are somewhat grasping at straws.  It is heartening to hear when something works for an individual, but it's not prescriptive for the population at large.  I would also encourage not giving up hope, but my posts here have always recommended that you do NOT avoid the reality and discussions of the intense emotional issues surrounding a GBM diagnosis.  Once someone is gone, they don't come back, so hope for the best and prepare for the worst. Sonso Thu, 15 Mar 2012 00:00:00 GMT Kristin, My husband was diagnosed in October 2011 - had a resection where they removed most of the tumor (right frontal lobe) - went through radiation/chemo (Temodar) - had his tumor tested found it unmetylated so entered a clinical with Avastin/Tarceva.  The side effects he has are some fatigue...diahrrea and rash (mainly from the Tarceva I believe).  The Avastin is the drug that I believe works on the blood vessels - for Jim that means that...along with the Tarceva diahrrea, his hemorroids become inflamed and bleed at some point (seems to normally come about midway between infusions).  I have also read that sometimes people on Avastin may experience some nosebleeds.  Nothing that really seems too drastic and, DEFINITELY worth it if its working to hold back tumor growth.  It is a "known quantity" now for us and we have gotten used to dealing with it.  His first MRI since taking the infusion has shown a decrease in the "marginal outline" so...a good MRI - and - thats what we hope for!  As with many others here, Jim is doing well all in all and we thank God for every day we wake up and begin a new day together! Lisa jjcsdaisy1 Thu, 15 Mar 2012 00:00:00 GMT Thank you it was shocking that within a week after the first infusion she came out of what seemed like ground zero. Thank you to everyone for there input it is good to hear everyones experiences good and bad - Reality !! Good luck to everyone and please keep posting it's good to connect with all of you who are going through similar situations. Thank you Kristin Krystalbleu Thu, 15 Mar 2012 00:00:00 GMT Thank you Sally I am the one in the scenerio who stays in what I feel is reality my  brother would call it at times being negative.  The night I heard what the diagnose was I knew it was cancer I imediately started researching and advocating. I've told the family from the beginning to just come and enjoy time spent with her. Luckily for her sake during this she has been more positive and in the moment then I could have ever imagined. When the tumor progressed again the end of January she said we know how this is going to end. I can only do each day.  I'm sorry your husband hasn't responded well. Honestly it feels like each turn is a crap shoot as to what may or may not work. I feel that even the Doctors are feeling the same way.  God bless to you as well, Kristin Krystalbleu Thu, 15 Mar 2012 00:00:00 GMT Hello I believe the radiation worked for my mom for a few months. I'm not sure if the Temodar with the Radiation and then alone kept the tumor from progressing as well. The steroid has definately been my mom's energy and with the tapering we are seeing some welcome fatigue. Lots of sleepless nights full of cooking, organizing, sewing and recently knitting. Good luck on Friday I know the Dr. always tells us not to be to concerned with the MRI but there is something about being able to see what you are dealing with. Thank you Kristin Krystalbleu Thu, 15 Mar 2012 00:00:00 GMT Wow your positive attitude sounds like my mother. She was 61 when she was diagnosed. Through out all of this she says she can only do today and she keeps doing and doing. She appreciates everyone and everything. I feel that her forced retirement has taken the stress out of her life.  Ironically she has always been a healthy vegetarian but the steroid has definately increased her appetite and her cravings for ice cream. Every time we go to the Dr. she has gained more weight I keep thinking that I rather she be gaining then losing the weight at this point. Thank you for posting !! We are thankful for the time we have and try not to look at the numbers. But I felt like I was saying my good byes to her at the end of January and now with this new treatment I feel like I'm getting her back again. We go next Wednesday for the next MRI - and we will know if the tumor has stayed the same - I'm thinking it has from what I'm seeing as far as her improvement. Thank you Donna and Good luck to you !! Kristin Krystalbleu Thu, 15 Mar 2012 00:00:00 GMT The crazy thing  - or should I say ONE of the crazy things :) is that what works for one doesn't work for another.  It's not like strep throat where everyone is treated the same and it works.  I am 51 years old and 4 and 1/2 years out (October 2007).  Started with temodar, doc wasn't sure if the scan was scar tissue or the "junk" trying to come back.  At that time, I started avastin and cpt-11 -- every two weeks. My doc is super aggressive and doesn't plan for me to ever be off the drugs unless I choose to.  In December of 2011 she dropped the cpt-11.  (I am now 12 weeks between treatments.  The longest she "lets" her patients go is 14 weeks.)  Had scan Monday - no change.  Thank you Jesus.  I used to want them to say it's gone.  Now I am thrilled with no change. I have absolutely no reason why it's working for me and doesn't for some others.  The only things I've changed in my lifestye is NO STRESS.  I do not put myself into situations that I know will bother me, but since I was diagnosed nothing bothers me!  I am just thankful for every day -- in fact that's the first thing I say every day.  I do drink lots of green tea and really, really limit my sugars.  I rarely have any kind of dessert.  (However, yesterday I found out a Dairy Queen Dilly Bar only has 5 g sugar -- same as a pack of nabs!!!  BUT, I'll still plan to only have one every couple of weeks.) Anyway, I must be completely honest.  I rarely come to this message board unless I've had a scan.  (See above - no stress.)  For whatever reason (and the only reason I have stress) is when I come here and find so many sad stories.  I've learned to google whatever it is I want to know and it usually takes me to a post here, but I don't have to wade through so much sadness.  Survivor's guilt does put a lot of stress on me because I have NO idea why I'm here and others aren't. WAY TOO LONG, but I just wanted people to know that sometimes the numbers are wrong.  When I was diagnosed the numbers said 6 - 12 months.  Well, 53 months later I'm still here.  What will the chemo do to me in the future?  That's the least of my problems.  I'm just so happy to have each day I do.  Donna donnaruth Thu, 15 Mar 2012 00:00:00 GMT The crazy thing  - or should I say ONE of the crazy things :) is that what works for one doesn't work for another.  It's not like strep throat where everyone is treated the same and it works.  I am 51 years old and 4 and 1/2 years out (October 200 ).  Started with temodar, doc wasn't sure if the scan was scar tissue or the "junk" trying to come back.  At that time, I started avastin and cpt-11 -- every two weeks. My doc is super aggressive and doesn't plan for me to ever be off the drugs unless I choose to.  In December of 2011 she dropped the cpt-11.  (I am now 12 weeks between treatments.  The longest she "lets" her patients go is 14 weeks.)  Had scan Monday - no change.  Thank you Jesus.  I used to want them to say it's gone.  Now I am thrilled with no change. I have absolutely no reason why it's working for me and doesn't for some others.  The only things I've changed in my lifestye is NO STRESS.  I do not put myself into situations that I know will bother me, but since I was diagnosed nothing bothers me!  I am just thankful for every day -- in fact that's the first thing I say every day.  I do drink lots of green tea and really, really limit my sugars.  I rarely have any kind of dessert.  (However, yesterday I found out a Dairy Queen Dilly Bar only has 5 g sugar -- same as a pack of nabs!!!  BUT, I'll still plan to only have one every couple of weeks.) Anyway, I must be completely honest.  I rarely come to this message board unless I've had a scan.  (See above - no stress.)  For whatever reason (and the only reason I have stress) is when I come here and find so many sad stories.  I've learned to google whatever it is I want to know and it usually takes me to a post here, but I don't have to wade through so much sadness.  Survivor's guilt does put a lot of stress on me because I have NO idea why I'm here and others aren't. WAY TOO LONG, but I just wanted people to know that sometimes the numbers are wrong.  When I was diagnosed the numbers said 6 - 12 months.  Well, 53 months later I'm still here.  What will the chemo do to me in the future?  That's the least of my problems.  I'm just so happy to have each day I do.  Donna donnaruth Thu, 15 Mar 2012 00:00:00 GMT Hi, My husband completed 7 weeks of radiation initially (dx 9/11), and has been on Avastin for 6 months, along with Temodar. After the first few treatments, he said he could actually feel a burst of energy. He tolerates the Avastin well, with no side effects that we've noticed, and he is feeling pretty good, aside from fatigue. However, I think that all of the treatment he's been through is responsible for the fatigue, rather than the Avastin. He just had his second MRI since completing radiation, and we'll have the results on Friday, and know a little bit better how it's all working.  My fingers are crossed.  Ha - talk about hope... suzanne55 Wed, 14 Mar 2012 00:00:00 GMT Hi there!  I hope Avastin works for your mom. Unfortunately, my husband was one of the majority who did not respond to it.  He only had 2 cycles of it and it did not stop tumor growth.  The enhancing tumor was stable, but the non-enhancing tumor grew during the period.  He had miserable quality of life on it. As I said earlier, I hope it works for your mom.  It seems like most of the others who posted had good results with it and I just wanted to add some balance to the discussion. God bless,  Sally loveiseternal Wed, 14 Mar 2012 00:00:00 GMT Would never judge how someone deals. No one wants to be here. Mab902 Tue, 13 Mar 2012 00:00:00 GMT Mab902, we are all dealing with this in our own ways. As long as we're laying down rules: Don't be someone who judges how others deal. siblingof Tue, 13 Mar 2012 00:00:00 GMT My dad was diagnosed in Oct of 2010 (17 months ago) He started avastin in December and just had his first MRI the first week in March. It showed the tumor shrinking and his doctors at columbia were very happy with the result thus far. He gets a bit fatigued, but goes to work for a few hours a day and walks 3-4 miles every other day. I'd like to comment that I don't think it's fair to make generalizations like "eventually everything stops working" I truly believe that if there's anything all of us can do it's to keep on hoping. Don't be someone who takes that away from others no matter how realistic you may think you're being. All the best to everyone fighting, and the people who love them. Mab902 Tue, 13 Mar 2012 00:00:00 GMT My husband has been on Avastin for about 15 months... for the first 12 months with Temodar and the last 3 months with CPT-11 and Carboplatin.  I think Avastin has worked well for him with the side effects being more chemo and steroid related vs. Avastin.  Although many side effects are hard to tell what specific drug is causing it as many of them overlap. sluss910 Tue, 13 Mar 2012 00:00:00 GMT My husband has been on Avastin for a year now. It is a God send. Medically retired, he is at home on the computer each day, doing what he loves. Avastin is keeping him alive and well. He is MGMT negative, so temodar did not work for him. We keep our fingers crossed that it keeps on working.   future2020 Tue, 13 Mar 2012 00:00:00 GMT Hi, my husband has been on Avastin since December. After almost 4 years since his surgery, the tumor started to grow again and 2 types of chemo didn't help (Temodar and CCNU). The side effects seem to be mostly fatigue and a slight loss of appetite. Scott sleeps more now than he is awake, but is of good cheer when he is awake. I've noticed this week that his balance is off and he is no longer using his left arm that much. I don't know if that is from Avastin though, more likely the GBM progression. He woke up with a nosebleed yesterday, but again, I don't believe that is from Avastin. Good luck with this, Scott is not on anything else except anti seizure meds, Dilantin and Keppra. He is at 49 months survival now, not in any pain or discomfort and we are grateful for the time we've had and hope for more. Libra Libra57 Tue, 13 Mar 2012 00:00:00 GMT Krystalbleu, it has worked for us so far for five months. Babzini, yes, eventually everything stops working. Just the nature of this nasty disease. siblingof Tue, 13 Mar 2012 00:00:00 GMT Dear distancerunner, is your wife Methylated ? I really hope this new round will be better for her. Hope above all! best Cris Cristiana Tue, 13 Mar 2012 00:00:00 GMT My wife had all good experiences wwith avastin, BUT, there comes a time where it loses it's effect. The effects are dramatic with the first few infusions, then the effects were not as dramatic and then it lost it's effect all together.. So, they stopped it for awhile and are getting ready to start it again just to be pro active,,but man is it expensive and I am not sure  the results are worth the cost....But there was great improvement initially and that is worth taking it I think all in all. http://finalthirddotcom.wordpress.com/ distancerunner Tue, 13 Mar 2012 00:00:00 GMT I was wondering how long this form of treatment has worked for other patients. Krystalbleu Tue, 13 Mar 2012 00:00:00 GMT So far it seems to be working and she hasn't been fatigued. But I think the steroid is masking any fatigue. So far she has had 3 treatments and her speech and comprehension is starting to improve again. We go back to Dana farber on the 21st to do another MRI. Is is possible the tumor may reduce again. It has been such a roller coaster. Krystalbleu Mon, 12 Mar 2012 00:00:00 GMT sibling, when you say temporary, do you mean to say that it lasts briefly after treatment, which is why you keep doing treatments every few weeks?  Or that eventually treatments will become useless? babzini Mon, 12 Mar 2012 00:00:00 GMT Avastin will reduce edema (swelling), and without the side effects from the steroids, in our experience. As for stopping tumor growth, it has a temporary effect in about 40% of patients. Right now it is working for us. I hope it will work for your mom too. We have not noticed any side effects, but with some people I think it causes fatigue. siblingof Mon, 12 Mar 2012 00:00:00 GMT Hello My mother experienced what seemed like stroke like symptoms in June of 2011. We found out within hours that she had a mass in front left temporal lobe. (Effecting her speech and Comprehension.) So far she had surgery to debulk the tumor. Then Radiation and Temodar. Then Temodar. After 2 months on the Temodar the tumor progressed. So now she is on Avastin.  Most of her side effects she is experiencing right now are from the Steroid. Because the Avastin has an anti swelling agent they are tapering the Steroid. Wondering what experiences are out there regarding the Avastin. Krystalbleu Mon, 12 Mar 2012 00:00:00 GMT