If you or a loved one has been diagnosed with brain cancer, our online forum resources at CancerCompass.com can be a valuable source of information, research and support. http://www.cancercompass.com/message-board/cancers/brain-cancer/1,0,119,5.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/ There is not a ton of folks on here with grade 3 tumors, I tend to see mostly GBMs or grade 2 oligos.  We went through the full regimen of treatment and have had our first clear scan since being off treatment for 2 months now.  yay!  I wonder though if I can revert to my optism, or if we should be expecting a recurrence and when.  Most of our doctors have been very optimistic with prognosis, yet we were still recommended to do radiation and Temodar.  I feel like we are in no mans land here and really am not sure what to expect.  I try to take one day at a time and really not worry about it, but that is sometimes quite difficult.  http://www.cancercompass.com/message-board/message/all,69635,0.htm slbbw Thu, 20 Dec 2012 00:00:00 GMT Hi all...I'm not a person who would be posting much and have to admit that I need to not read that much....but my radiation oncologist said today that I really should write or blog somewhere to help people see positively. He called me his "poster child" for radiation and temodar (knock on wood)!. So hopefully I can share a little and help people feel positive.  I was diagnosed on 3/19/13 with GBM IV, following not showing up for work and being found at home after a seizure--of which I remember nothing. I am 53 and probably had symptoms--dizziness, etc.--for a bit. I had a golfball sized tumor in my right temporal lobe, which a gifted surgeon resected 100% (and we all know that 100% here is never really that, but this is good). My KP scores were well over 90 very quickly (I don't have the record of them) and I was at home 2.5 days after the surgery and back at work full time within a week of being home. I deliberately decided to get back to work, because I feel that I needed to "practice" and push myself so that my brain could recover from surgery and the trauma. It was hard at first--I defintely found that if too much information was coming in at once that I could be overloaded, and I had to tell my colleagues to be patient with me. I was scared to get on the subway and navigate the stairs and the crowds, but again--I felt that the only way to recover was to make myself exercise, walk, navigate, etc. Two months out from surgery, I would say that the only coginitive side effect I have is exacerbations of issues I already had: I am going to have to write down everything now, because it's harder to keep schedules in my head, etc. I have also found that I am able to be very productive working *with* others, but on my own I tend to become unfocused. I do have to watch myself and be willing to stay home for a day if I am just too tired, which happened today--because I had too many intense meetings all week.  I began radiation and chemo (temodar) within 2.5 weeks of my surgery and am so only have two more days of radiation and about five of temodar left for this round. My radiation has been IMRT very focused on the tumor area. I was all worried like everyone about the hair loss, since I am a business professional--and a woman--and needed to stay looking professional as long as I could. As a head of a small start-up, I also couldn't "scare" people into thinking I could not do the work, or clients could flee. My doctor and the nurses were exactly right about when I would begin to lose my hair--about 3 weeks in--and they also predicted that I would only lose it at the site of the radiation. They were right--and I have lost so little that it is easily covered by a good haircut! The doctor was so actually excited, because he said that he has been working to get the dosages to precisely fit each individual's individual requirements, and this was an example of how it is working.  I have not had any serious side effects from the temodar. I have not thrown up (if I feel the least bit sick, I eat crystalized ginger) and my blood counts have all be *better* than they were before I was diagnosed. I am careful to eat lots of protein and green food (although I am just about sick of kale and chard). I probably still eat too many sweets, but I certainly eat a lot better food in between! For a couple of nights I've had major muscle cramps in my legs, but I have tried adding raw coconut water, and that seems to be solving that. I don't like the taste--but it seems to be doing the trick. I may have been drinking SO much water that I was diluting my electrolytes! I think my main side effects are from the dex and the Keppra. My steriod use is now down to 1 mg a day and I'm about to ask them to let me take it down to .5 a day for a couple of weeks and then try to get off--weight gain is a definite problem for me on it, and that slows me down. The Keppra is like a hammer of fatigue each day for about two hours following me taking it, and I've learned that I need to take it and then have no shyness about a large skim latte. That allows me to wake up slowing from the Keppra. As soon as my treatments are done, I am insisting that they try a smaller dose (I am on 1000 mg 2/day) of the Keppra, because I know that I am very responsive to medications.  There's my current story...but let me add the best advice I got when all of this started. My sister in law has been fighting lymphoma for six years (and it looks like a stem cell transplant has finally taken over!!!). My brother asked me something very simple: "Please assume that you have a future." I get teary even just typing that. It is so simple, especially in the fact of all the terribly negative things we read about GBM IV, and therefore all the fears of friends and family that we have to bear.  Just assume that you have a future, and go from there.  http://www.cancercompass.com/message-board/message/all,71784,0.htm fierceoptimism Fri, 17 May 2013 00:00:00 GMT Could those out there diagnosed with a diffuse astrocytoma, grade II please please share their stories.  Has anyone not had a recurrence? I'm very scared and want to have some sense of what might be coming.  I know everyone is different but I have only heard that this tumor will go back after surgery.  It's only a question of when.  Not if. Thank you! http://www.cancercompass.com/message-board/message/all,70941,0.htm suz222 Sat, 16 Mar 2013 00:00:00 GMT Hello everyone...I am sure we all know about our Krazy Kepra..well Eddie is on 2000 mg a day, 1000 in the morning and 1000 at bedtime.  He feels good in the morning when he wakes up..but within an hour of taking his kepra (after he eats breakfast 9 am)) he is out...or as he says "drunk".  He stays that way all day...well it starts wearing off around 3 or 4 pm..but then  he has to turn around and take more around 8 or 9.  Does anyone have any suggestions on trying to beat the "drunk" feeling...he is comong off some of his steroids..but can't do anything,,,because he so sleepy.  Any and all suggestions are greatly appreciated.  God Bless! http://www.cancercompass.com/message-board/message/all,71795,0.htm Twilliams413 Sat, 18 May 2013 00:00:00 GMT My wife has grade 4 GBM.  We will begin regular radiation and temodar.  Today we were call that she may be a candidate for a clinical trial.  Can anyone help with some info on what they experienced with monitoring, side effects and whether it is worth while.  I don't want to waste vaulable time and hear the NO say well that did not work we will just have to go back to the original method.  My wife's GBM was primary to the lower right back side of the brain and surgery removed 95-98%.  I don't want to make the wrong decision or have her suffer with difficult side effects.  I know everyone is different, but I don't know what to ask the NO that may help us to decide which direction to go.  My wife is 66 and in excellent health except for the GBM.  Jerry http://www.cancercompass.com/message-board/message/all,71779,0.htm Jerry616 Fri, 17 May 2013 00:00:00 GMT Hi all - Wondering if anyone would share if they are on anxiety medicine and if so, what are you taking?  My mom is just beside herself with anxiety and fear.  It inhibits her from doing her normal things. The seizure she just had last week made it even worse. She was going to the doctor today. I told her to ask him about something to take the edge off on an as needed basis.  Her NO said he wouldn't prescribe it, that she would have to see a phsychiatrist.  I thought that was odd. http://www.cancercompass.com/message-board/message/all,71753,0.htm rmp1399 Tue, 14 May 2013 00:00:00 GMT Hi, I've only just discovered this site and am writing as my nephew (49 years) is now in his last week of Radio. Apart from the initial seizures last November, he appears to have no symptoms. Any comments on what seems to be a bizarre situation most welcome. Thanks, Chris. (in France, nephew in UK) http://www.cancercompass.com/message-board/message/all,70470,0.htm Sheffielder Wed, 13 Feb 2013 00:00:00 GMT my sister was diagnosed with gioblastoma and had 3 tumors one large one on the top of her brain stem and 2 small ones on a main artery that controls ur left side.the awsome doctors at clevland clinic removed th large one on her brain stem which other doctors said couldnt be done she recovered for a month then started her first radiation/chemo treatment 4hrs.after her treatment she had a hemorable stroke in her brain.they had to remove part of her skull to relieve pressure she almost died.now she cant use anything on her left side she is in rehab and we hope some movement will come back .they said they never had any reaction like this to radiation,i was wondering if anyone ever heard of this happening thank you so much andy http://www.cancercompass.com/message-board/message/all,71134,0.htm hopefullbrother Sun, 31 Mar 2013 00:00:00 GMT what would make more sense?  I am trying to weigh the pros and cons for the very best chance for my son to comfortably live as normal and long a life as possible.  All thoughts and research would be welcome.  Thank you.  Jan http://www.cancercompass.com/message-board/message/all,71759,0.htm vwxyz Tue, 14 May 2013 00:00:00 GMT My wife just had surgery for glioblastoma stage 4.  Surgeon said he removed 95-98% of tumor.  We meet with oncologist for next treatment.  Can anyone tell me what has worked for them.  Surgeon said we probably have 1 year survival rate, but don't believe that since she is in such good health at 66.  Chemo scares us but will do what ever to prolong life.  Can anyone help with information.  Thanks,  Jerry http://www.cancercompass.com/message-board/message/all,71720,0.htm Jerry616 Sun, 12 May 2013 00:00:00 GMT My husband had to stop temodar 7 days before he finished the initial phase with radiation. He had abdominal bleeding and was in much pain. It was due to very low platelets and maybe his blood thinner, which they took him off of. He is getting to finish the 5 remaining days of radiation he was due. He may not be able to resume the maintenance phase if his blood counts stay low...then what happens? Or if he does resume, he may have more bleeding and even more deadly consequences. Is avastin as hard on the body as temodar? http://www.cancercompass.com/message-board/message/all,71580,0.htm marysch Wed, 01 May 2013 00:00:00 GMT I hear alot about Avastin but not "how long and sucessfully it prolongs the life of a person with a brain tumor."     J. http://www.cancercompass.com/message-board/message/all,71778,0.htm vwxyz Thu, 16 May 2013 00:00:00 GMT My father, 59, was diagnosed on Dec.14, 2008, surgery to remove approx. 95% of the tumor on Dec.18th. Since the surgery he's completed 2 weeks of rehab and seems to be doing really well, along with current home rehab, although his short term memory is still a problem, and may never come back they tell us because of the damage the tumor did pre-surgery. Today will be the end of 3 weeks of radiation along with temador. The doctors told us that they are all about "statistics" and said the median life expectancy was 12-14 months. My father is a stubburn german, and was in excellent health until then. I am looking for success stories, advice, encouragement, etc. Thank you, Colleen http://www.cancercompass.com/message-board/message/all,32681,0.htm Bella117 Fri, 30 Jan 2009 00:00:00 GMT My brother had brain surgery on April 15.  They removed 99% of the tumor on right side.  He has some left side problems but is able to walk, talk and do things for himself most of the time.  He's tired all the time and when he comes back from Therapy which last almost 3 hours he is exhausted.  Has anyone else had to do therapy that much?  They say they are trying to retraine his left side of the brain.  I have notice lately that he has problems with his left leg again and arm.  Does that mean that the brain tumor is growing back.  He is off of the steroids for now but still on Keppra along with all the other meds he taskes and vitamins.  He goes for a scat scan today and measured for face mask for the radiation treatments.   He starts the chemo and radiation next week 5 days a weeks for I'm not sure how long.  He will be taking the pill for chemo.   What is the best diet for him, he is so bloated, tired and starting to get irritated and somewhat depressed.  Any suggestions I would appreciate.  Thanks.  http://www.cancercompass.com/message-board/message/all,71767,0.htm cmh4kids Wed, 15 May 2013 00:00:00 GMT My wife was dx in Oct 2012 with GBM, in a position that the tumor is not able to be operated on.  After 3 months of radiation and temador - tumor doubled in size.  We moved to Avastin and Irinotecan in Jan and our May MRI showed tumor reduction and no brain swelling [edima]. What are the longer term experiences on Avastin? http://www.cancercompass.com/message-board/message/all,71770,0.htm mcort Thu, 16 May 2013 00:00:00 GMT I hope this link works. I was expecting to have read this on this site. Maybe I've just missed it. It's been big news in Australia. If the link doesn't work, google Charlie Teo brain cancer cure and look for the May 3rd newspaper articles.http://www.smh.com.au/world/us-beckons-for-man-with-a-plan-t http://www.cancercompass.com/message-board/message/all,71750,0.htm Ozgirl Tue, 14 May 2013 00:00:00 GMT I was just wondering what type and the dosage of seizure medication is being use.  My mom had her very first seizure today (diagnosed in January 2013).  It was very scarey, but she is ok. They are keeping her in the hospital over night for observation. http://www.cancercompass.com/message-board/message/all,71687,0.htm rmp1399 Fri, 10 May 2013 00:00:00 GMT Hello All:-)   I posted something last week regarding my moms 10 month post op scan and the NO from Northwestern saying there was regrowth...We originally had surgery at Mayo and she had a NO there but we live about 6 hours away so the NO at Mayo reffered her to a new NO at Northwestern. After the appt last Wednesday at Northwestern we sent her scans to the NO at Mayo for a second opinion... He called last night stating that he has looked at her scans over a dozen times and does not see what they are getting excited about.   He did say that he sees what they are looking at but he cannot determine if that is just changes from the treatment and would recommend another scan in 4-5 weeks and NOT to start treatmentuntil we know for sure.  On the other hand her NO at Northwestern is going to call her on Friday to go over the treatment plan she wants to start. Sorry this is very confusing to follow with all the hospitals and different NO'sThis whole process is such a rollercoaster ride:-(   I am just wondering if any of you have had differing opinions from NO's and what the outcome was  thank you very much http://www.cancercompass.com/message-board/message/all,71751,0.htm Steph917 Tue, 14 May 2013 00:00:00 GMT Hi guys, Ok I don't want to be someone who talks of a miracle cure because...  well, this is brain cancer.  BUT.  I do want to share our recent experience. I've often posted before about cannabidiol and that I THOUGHT it would be good and helpful, etc...  But hadn't tried it yet.  I was waiting for the **** to hit the fan and recently, it finally did.  :( Roughly two weeks ago my husband had "water on the brain" and a scan a week later showed it had increased.  I worried, thinking he would need a shunt...  I started giving him some Dixie Botanical drops (5 drops, twice a day just to test it) and...  after a week or so the NO did another scan and the water on the brain decreased.  Yay!!!  Could it have happened on its own - of course.  But...  My husband's platelets also shot up from 120,000 to 150,000.  (he's had BAD platelet issues for 7 months)  AND, for those of you suffering horrid headaches, these drops took away his pain in minutes.  He was getting severe headaches every ten minutes...  Extra Strength Tylenol did nothing for him.  The drops?  Completely stopped them. Also...  he's starting to get SOME use of his left side back and has been feeling pretty good overall. Is this a miracle?  I don't know and I wouldn't say it's more of a miracle than wearing blue socks or chewing gum could do.  I'm not going to be a "snake oil salesman." BUT...  I know we're all looking for some hope and help and figured I'd share what we've learned.  Oh, and his lab tests all came back well so the cannabidiol (CBD) isn't doing anything negative.  For those of you who are interested in the drops, just google Dixie Botanicals.  We use 5 drops twice a day - the site honestly doesn't tell you how much to use because it's all individual and since they're not a "medicine" they legally can't say...  But anyway, we're continuing to use it and I think my husband's next MRI is in 2 weeks.  I'll let you guys know how it goes!  (his previous scans showed some progression, sooo...)  Hoping and praying the drops will help! All the best, Sarah http://www.cancercompass.com/message-board/message/all,71618,0.htm SarahGrey Sat, 04 May 2013 00:00:00 GMT My father finished his 1 rd of his chemo and radiation treatment 2 Mondays ago. Got a call from my mom and she said he could barely get up today and is very weak. Is this common after the treatment to be very weak for a period of time? http://www.cancercompass.com/message-board/message/all,71702,0.htm Fightingson Sat, 11 May 2013 00:00:00 GMT Hi my name is Cheryl and I am 37 years old. On 4-20-2012 I had a seizure and my husband called 911. I was diagnosed with aOligodendroglioma grade 2 after an MRI. I kept me on steroids the whole weekend and did surgery on 4-23-2012.  They said they got 100% of the tumor.  Now I am doing 1 year of Temador.  I am not doing radiation. I have a 7 and 9 year old that has Down Syndrome.  I am so worried that I will not be around long enough to see my kids grow up and I am really scared.  I also cannot sleep since I got home from the hospital.  I am taking Keppra which they said is for seizures.  They told my family the life expectancy is 3-5 years.  Can anyone tell me how long it took them to recover once they got home? Any other advice? Thank you Cheryl http://www.cancercompass.com/message-board/message/all,66423,0.htm Cllblldllkpl Tue, 29 May 2012 00:00:00 GMT Ben Williams beat his GBM 17 years ago and wrote a book about his approach using a brain tumor cocktail of off label drugs.  An international consortium of 28 brain tumor researchers have crafted a carefully thought out cocktail of 9 drugs to be added to metronomic Temodar.  They believe there is solid rationale that the cocktail will be safe and effective.  It's totally untested at this point, but designed to knock out various pathways that fuel GBM growth.  In my view, this is the most exciting news I've ever read about brain tumors.  Here's the paper they wrote: http://www.disulfiram.eu/Documents/IIAIGC.pdf http://www.cancercompass.com/message-board/message/all,71739,0.htm Scottttt Mon, 13 May 2013 00:00:00 GMT I found out today that I have oligodendroglioma grade 2. I had surgery and 90% was removed. I have a weakness in my left hand which is improving weekly. My therapist are very happy. Now on Thursday the tumor board will meet to discuss my next journey. Now I was told MRI will be done every 3 to 4 months. Now we know next possible journey is radiation/proton treatment. Now I'm told that my hand could go back to the start of where it was since not full ready. So do wait 3 months, work on my hand, have another MRI then do radiation. The tumor is slow growing and on front right lobe. Looking on what others fighting this disease thinks. http://www.cancercompass.com/message-board/message/all,71761,0.htm Mkstlowe Tue, 14 May 2013 00:00:00 GMT i was sure i read some comments of people dealing with the germanoma type of brain cancer.  sorry, i cannot find the thread.  Can anyone help? http://www.cancercompass.com/message-board/message/all,71746,0.htm Iirene Tue, 14 May 2013 00:00:00 GMT I had surgery in October 2011 for GBM and surgeon could not get it all due to fingers penetrating the brain. I did radiation and am taking Temodar monthly but feel that I am losing ability to process thoughts, mobility and balance. Has anyone experienced this? Drs indicate 12 to 18 months survival time but anyone have differing experiences. http://www.cancercompass.com/message-board/message/all,66878,0.htm shucky Tue, 26 Jun 2012 00:00:00 GMT