CancerCompass message board discussion started by Mark E. on 6/3/2003 http://www.cancercompass.com/message-board/message/all,350,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Has anyone had any experience with this oral chemo pill? I have a grade 2 astrocytoma of the brain and I am on the first cycle of Temodar. Surgery and radiation were ruled out as treatments because of the size and location of the tumor so we are hoping that the chemo will work. Mark E. Tue, 03 Jun 2003 00:00:00 GMT I was diagnosed with a glio and operated on in September. I did 37 treatments of radiation and then also took Temodar. My tumor came back and I had a 2nd brain surgery in April. They have planted radioactive seeds. Darla Sun, 23 May 2004 00:00:00 GMT I just had surgery 3 1/2 weeks ago - now I'm starting radiation next week. I have been given only two options for chemo after - Temodar and a clinical trial. I guess I'm wondering what the story is on Temodar. Donmac4321 Fri, 05 Nov 2004 00:00:00 GMT I do not have insurance coverage for Temodar. Does anyone have any info on obtaining Temodar from online pharmacy? Larryj Tue, 09 Nov 2004 00:00:00 GMT Hi, Just a little message for you and everyone else that may want to know. I had astrocytoma stage three brain cancer non operable. I went through 7 weeks of radiation along with 120 mg of temedor. After the radiation the doctor upped my temedor to 350 mgs per day for 6 months then they dropped me to 250 mgs for 6 months. After that they kept me at 240 mgs. All togethter I was on temedor for 2 years and 3 months. They only gave me 6 months to a year to live but something was working right because I am going on 3 years this June 2005. I suggest that you watch what they give you for the anti puke pill. They gave me this one pill and it did not help. The pill that helped me was Anzemet tablets or kytril. Hope this can help everyone about temador. any other questions that I can try to answer I will be more than happier to help. God Bless and good by ed from bullheadcity Edward K. Wed, 05 Jan 2005 00:00:00 GMT Dear Mark, My husband has been on Temodar for two years. He is in his 70's and had a glioblastoma removed two + years ago. He has also had an experimental drug at Hahnemann Hospital in Philadelphia which we feel has also made a big difference in his survival and recovery. And we work with a nutritionist in Utah for diet and suplements.If you are interested, please let me know and we will give you further information. We hope you are doing well. Sincerely, Helen L. Helenlee Wed, 12 Jan 2005 00:00:00 GMT Dear Darla, My husband was diagnosed with glioblastoma two years ago in Oct. He had surgery and a month of radiation and athe tumor returned. He began an experimental drug (Monoclonal Antibody 45 ) at Hahnemann Hospital in Philadelphia and the tumor seemed to stop growing. He also started taking Temordar. This was Jan. 2003. In March the surgeon felt the tumor has to come out becasue of its location. During the surgery he had gliodel wafers inserted in the now empty tumor bed. However he contracted an infection in the next few weeks which nearly killed him. So he had to have the bone plate removed and teh wafers washed out. He survived and after another surgery to implant a stent to control fluid on his brain and then some PT, he recovered. He started the temodar again in August 03 and took the experimental drug again in Sept. He has been tumor free ever since and except for a diet and supplements through a nutrtionist in Utah and Temodar every month, he has had no further problems with the cancer. He is in a small class of people with this cancer and at almost 75, he is some kind of a miracle to me. If you want any information about the docs we are consulting with, Iwould be happy to give you more inforamtion through this email site. Sincerely, Helen L. Helenlee Wed, 12 Jan 2005 00:00:00 GMT Dear Donald, My husband was diagnosed with this cancer two years ago in Oct. He has made a long journey with it and the story is interesting. The best part is he is still alove and tumor free. He takes Temodar once a month - for five days and does well on it. He has taken two doses of a monoclonal antibody 45 - in trials at Hahnemann Hosp. in Philadelphia. We feel this is what has made the biggest difference. He is also working with a nutritionist in Utah and takes supplements which all work on building his immune system and against cancer cells. The nutritionist lectures at NIH on her research regarding diet, supplements and this cancer. I would be happy to share any information you would be interested in. Sincerely, Helen L. We wish you well in your journey. Helenlee Wed, 12 Jan 2005 00:00:00 GMT Dear Helen, My Husband was diagnosed with Glioblastoma On November 12, 2004. He is 46, He is currently undergoing treatment at Sloan Kettering in NY. We are going the traditional Temodor/ radiation treatment right now. he is at a temodor dose of 150mg. We did have one round of the the intra-arterial chemo at Stony Brook, but Joe really hated it. Although it is still an alternative for future consideration. I am very interested in the information you mentioned. It sounds like your husband is doing great! I look forward to hearing from you. Lea M Joenlea Wed, 19 Jan 2005 00:00:00 GMT Hello Helen, My name is Milko. I live in Germany, so please excuse my english. My sister, who lives in Montana, was diagnosed in February 2005 with Glioblastoma Multiforte. I would like to help her with every Information availiable. Since last week she takes TEMODAR, besides radiation.It may help her if you are willing to give information about your Temodar-Experience...or other treatments. This cancer is really the worsted thing that can happen. My thoughts are always with you. So, if you dont mind answering...I would be very thankful. Best wishes and hugs Milko Milko Thu, 17 Mar 2005 00:00:00 GMT Temodar manufacturer, Schering Plough has a program called "Commitment to Share" which they will help people in your situation. Go into their Web page to get their 800 #. Hope this helps. Kathycid Tue, 26 Apr 2005 00:00:00 GMT Hi helen, My mom is 69 and had a glioblastoma removed and is starting a clinical trail of temolozide (sp?)and radiation in Pittsburgh. Do you know if this is another name for temodar? Can you send me information about the experimental drug your husband used and the nutritional information? Thank you for your letter, it gives me hope! I hope your husband is doing well. Julie Juliev Tue, 03 May 2005 00:00:00 GMT Dear Helen, Can you send me info. on the diet and the supplements that your husband is taking? I just finished my 12th Temodar cycle for a recurring Glio. I was 39 when it showed symptoms, had surgery but no radio nor chemo. Then it reapeared at age 43. Hope your husband is still doing well and hope to hear from you soon. Kathycid Mon, 09 May 2005 00:00:00 GMT Please send me any info. My father, age 65, just had surgery one week ago. Thank you, sincerely, Sherri Lynn Sherrilynn Mon, 27 Jun 2005 00:00:00 GMT My mother-in-law was diagnosed with this type of cancer. She going to be treated with Temodar. My question is whether or not that your husband tumor was operative/inoperatable? My mother-in-law was not operatable! My prayers are with you both! Thank You. Cecil Sat, 09 Jul 2005 00:00:00 GMT Thank you for your prayers, ours go out to you and your family as well. The tumor was partialy surgicaly removed. there was two tumors at the time of surgery. One was completely removed, the other was partialy removed. Joe underwent radiation and chemo (temodor) until a new lession appeared. We are now seeking other forms of treatment elsewhere, as SK still want to use the Temodar, even though a new tumor appeared while on it. Joenlea Sun, 10 Jul 2005 00:00:00 GMT Dear Helenlee, I am interested in the nutritionist you had in Utah. Is she expensive? Also, if there is some written info we could use instead of going through a personal nutritionist? thank you so much! Love, Taffeta (Nancy) Taffeta Wed, 24 Aug 2005 00:00:00 GMT hi my husband is 34 yrs young. We are together 16 years and have 2 babies. he was dx with lung cancer in 7/04. Started chemo and wad doing quite well on his way to remission as of 04/05. He was admitted to the hospital for memory deterioration and confusion on 05/05. Apparantley the cancer spread to his spinal fluid with multiple lesions to the brain which had entered the blood brain barrier. They did 2 intra-thecal brain chemos and 15 sessions of radation. To which the spinal fluid was neg. for malignancy. However more tiny enhanced lesions appeared in the brain. Dr. decided to stop all forms of treatment as to not make him worse. Joe was admitted to hospice on 7/4/05. After much looking around Sloan Kettering was willing to review his records. At this point my hubby is not in any pain. He however cannot walk, talk and does not really want to eat. Overall he looks good and sometimes repies with a simple yes or no or nods or blinks his eyes. Drs at SK state we can possible use temodar to buy him some more time and maybe improve his cognitive skills, however, because of his recent spread of cancer, leptomeningeal carcinomatious, they still are recommending hospice and to probably not do this b/c he is comfortable and therefore no need to disrupt his quality of life. Taking the pill can cause internal hemmoraging and increased infection for him. In researsching this cancer, it is RARE and prognosis is usually poor. CAN SOMEONE PLEASE HELP ME WITH ANY INFORMATION / ADVICE AND OPIONS. many thanks a desperate wife seeking help and advide, jessica Jjgcat Fri, 26 Aug 2005 00:00:00 GMT Any chance you can give us contact info for the (Utah?) nutritionist mentioned in various posts? My wife has just finished radiation, and will begin Temodol in next few days. Thanks. Embee Mon, 05 Sep 2005 00:00:00 GMT Hi Helen, I hope this finds you and your husband still doing well. My wife is 33 years old and was diagnosed with a grade 4 glioblastoma three and a half years ago when she was seven months pregnant with our little girl. She had successful surgery, followed by radiation and then three+ years of monthly temodar cycles. She continues to show no sign of recurrence, so for that we have been incredibly blessed. However, I live in fear that this thing will come back, so I try to stay on top of the latest treatment methods. I was wondering if you could send me more information on the experimental drug (Monoclonal Antibody 45 ) that you were informed of at Hahnemann Hospital in Philadelphia. If you have a contact name and number for an oncologist there, that would be great. I've not heard of this drug before and would like to explore it as a possible future treatment option. Thank you for any help you can give. Mark Televisionfarmboy Mon, 12 Sep 2005 00:00:00 GMT Hi Mark, Your message made my day! I was diagnosed with gbm stage 4 multiforme July 13, 2005. I was very blessed, tumor frontal right side size of a quarter, had surgery immediately started temodor, have 3 radiation treatments left and have had no problems. Did your wife go right into remission following the radiatiion treatments. I am happy that your family is doing well. I also did not have any deficits. I am 53 and was planning on retiring next year, so I will go back to work shortly. Please reply with any information after you read this. Thanks, Sandy hope all is well! I have not been tired and my appetite has been fine. Sandyp Mon, 19 Sep 2005 00:00:00 GMT I would suggest that you contact the drug company that makes Temador. It may be that there is help thru them if you do not have insurance. Good luck to you. Keep the faith. Yvonne Toosh Wed, 19 Oct 2005 00:00:00 GMT i am quoting from the pamphlet that our doctor just gave us about temodar...for patients with financial needs beyond insurance provisions, Schering Corporations has also developed Scherings Commitment to CareT program. This service can help eligible patients find aternative sources of reimbursement and my be contacted by calling 1-800-521-7157 hope this helps =) Dolfinny Sat, 22 Oct 2005 00:00:00 GMT Edward were you taking temodar every day or was it the 5 days on 23 days offscheme Peterp Mon, 07 Nov 2005 00:00:00 GMT Dear Helen Lee, Following surgery (2 weeks today) for what I thought was a cyst on the right hand side of my brain, I was diagnozed with gbl. I am 60 years of age, healthy, with no prior medical problems. Like everyone out there, this diagnosis has changed my life completely. I start radiation and chemo (pill) week after next. So glad to hear that your husband is doing so well. I would be interested in info on the nutritional aspect that you mentioned. Thank you for your help. God bless you, I will keep your husband and your family as well as everyone else out there going through, what I like to think is a bump in the road, in my daily prayers. esinnc Eileeninnc Fri, 11 Nov 2005 00:00:00 GMT Hi Sandy, Like Steve's message on his wife, it was encouraging to read your message. Following surgery two weeks ago I was diagnosed (Oct 31),with GBM stage 4. I will start a combination of radiation and temodor in the next week or so. Everything is so scary but when I read about others that have been down this pathway, survived treatments and continue on with their lives it is encouraging. When I was first diagnosed, of course I went straight to the internet and a lot of what I read was very discouraging and depressing. I have decided that I will only focus on the positive and, as a researcher I know that stats are just that. I am determined that along with so many others I am going to be a survivor. I am 60 years of age and have been healthy all my life. I too woul be interested in the nutrition aspect of this treatment God bless you, I will keep you and everyone else on this message board in my prayers. Eileen Eileeninnc Sun, 13 Nov 2005 00:00:00 GMT Hi Eileen, Sorry I took so long to write back. The whole process is so scary and overwhelming,but I have pretty much returned to my life before this diagnosis. The only problem I have had is my right eye gets a little swollen I think from the temedor. I have not lost anything through the surgery or treatments. I am a counselor in a school and I do go to work most days of the week. Stay in touch and take care! Sandy Sandyp Sun, 20 Nov 2005 00:00:00 GMT Mark, what an inspiration your wife is to me and I am sure everyone else on this message board! I will never feel sorry for myself again after reading what you and your family have been through. I have just been diagnosed with GBM IV and start my treatments tomorrow (radiation & temodor). Gob bless you and your family and everyone else going down this pathway....WE ARE SURVIVORS! EileeninNC Eileeninnc Sun, 20 Nov 2005 00:00:00 GMT Eileen, I will pray for you as you head into radiation treatments. Keep your head up and know that the journey is not impossible. It might be difficult at times, but stay positive and stay strong. Best wishes and God Bless. Mark Televisionfarmboy Sun, 20 Nov 2005 00:00:00 GMT Dear Helenlee, Your story really inspired me. My father was diagnosed with giloblastoma multiforme IV on Oct. 11,2005. He had surgery and they removed the large part of the tumor in the ocipital lobe At Hoag Hospital in Newport Beach Ca. He did have tenacils which we are treating.(They were on vacation at the time of his seizues) We have since air lifted him back to the Phoenix area. He is also 76 and had never really been sick in his life. He takes Temodar 180 mg every day and radiation for 10 min. 5 days a week. He has lost some eye sight and his short term memory is not great.( he does not remember where he lives.) He is in a rehab center as after the perfect surgery he got a very high fever of 104.8 and we were very scared of septic so he is not walking by himself as of yet due to blood clots. It has just been one thing after another. Sorry that I am rambling. Could you please give me more information on the nutritionist in Utah and also the monoclonal antibody 45. No doctor has mentioned that. They have mentioned the gamma knife and immunotherpy after his 6 weeks of radiation. I just want my parents to enjoy their Golden Years and this Cancer is a nightmare. He is very tired and itches all the time.( i think this could be from the Temodar but we all want him to have the treatment.) Only 3 more weeks... Thank you again for sharing your story I am so happy for you and your husband. Have a blessed Thanksgiving. JoDee Jodee Thu, 24 Nov 2005 00:00:00 GMT Helen, Could you please provide me with information as well. My wife was just diagnosed with Glioblastoma she had surgery and they got 98 percent of the tumor out. She just started Temodar and radiation today. My wife is only 36 and we just had a baby. This has been a huge struggle. Any advice or assistance from anyone would be most appreciated. Thanks! Bob Njstealth Tue, 13 Dec 2005 00:00:00 GMT Dear all, my father has been on Temodar for 3 months now and it has stopped the growth of his Glioblastome. He's had surgury in July 05 and a round of radiation afterwards. The MRI post 3 months of Temodar showed slight reduction in size of tumor. He is on a macrobiotic diet and using tons of additional natural suplements. So far he is taking well the Temodar, with almost no side-effects. Please let me know for how long the Temodar can be used? Thank you all very much! Radonja Thu, 09 Mar 2006 00:00:00 GMT Hi Helen, Can you send me details about supplements and nutrition information as i need for my dad who has undergone 2nd surgery in last 1 year. Thanks Manoj Man_canada Wed, 10 May 2006 00:00:00 GMT HI Radonja, Can you send me details about the supplements you mentioned. Thanks Manoj Man_canada Wed, 10 May 2006 00:00:00 GMT Doctor Thomas B. Tucker, Austin, TX, prescribed Promethazine 25MG for my wife. Pills work good. Usually within a minute or two the nausea feeling has disappeared. My wife Bonnie, was diagnosed with a Glio on December 1st, 2005. At the time she was diagnosed, she had so much cranial trauma that they were afraid to open her up to remove it. Too much inflammation and edema. On December 6th, after several days of steroids and anti biotics, in a 5 1/2 hour procedure, they removed the Glio. She then went to ICU for 5 days and subsequently was discharged from the hospital into rehab. She was in rehab for 6 weeks. It was later discovered that while they were treating her for the inflammation and edema, she had a small stroke. While in rehab she had radiation and Temodor. She had 32 radiation treatments, with Temodor. After she was discharged from rehab, they waited 30 days and restarted the Temodor. She takes 340Mg once every 28 days for 5 days. Today we started round three. She's had one follow up MRI which showed that her head was healing properly inside without any hemmoraging, and that the Glio is not regrowing. We are blessed to have such competent doctors, tending to her needs. The Glio that they removed was 8 x 6 x 4 centimeters. To top this off, Bonnie is a Type II diabetic who takes insulin shots to control her blood sugar. I hope that this message is informative and comforting. Chuck Auschuck Sun, 21 May 2006 00:00:00 GMT Did you get help with the cost of this drug? I was quoted $3600. for 20 pills. Sharuron Fri, 16 Jun 2006 00:00:00 GMT Hi I am happy for you and your husband that is wonderful news. Is glioblastoma another name for anaplastic astrocytoma. Can you tell me anthing more about the drugs he is taking? and could you give me some tips on nutrition? I wish your husband the very best. Sincerely Marilyn Marilyn56 Tue, 11 Jul 2006 00:00:00 GMT Finished, Termoeor bouth of 6 months cannot understand why there are no additional treatments Sellotape Tue, 19 Sep 2006 00:00:00 GMT Hi, my father was just diagnosed with a glioblastoma multiformae type brain tumor/brain cancer. We are looking for resources on how to specify his diet to fight off cancer, or at least which things to avoid in the future. I saw your comment about the Utah dietician you were working with, could you refer me to he/she or do you have anyone else you would suggest contacting? what were the main/most important factors with relation to diet that you enouctered? Thanks for your help look forward to hearing from you! Mags3176 Sun, 22 Oct 2006 00:00:00 GMT Hi, would you mind refering me to your dietician/doctor in Utah? my father was just diagnosed with glioblastoma multiformae and we are looking for resources concerning diet/hollistic approach to deal with this in addition to the drugs/radiation/chemo. Thanks so much look forward to hearing from you Mags3176 Sun, 22 Oct 2006 00:00:00 GMT I too am very interested in learning all I can about the dietician/doctor in Utah. Can I please ask someone to send me this information so I can help my Mom? God Bless. Caseysummerwind Thu, 07 Dec 2006 00:00:00 GMT December 8, 2006:I lost my wife Bonnie on Oct 20, 2006.  When they went back in the second time to check for further growth, there wasn't any noticeable growth.  They removed some scar tissue, from the radiation, but the Temodar apparently did it's job. Auschuck Fri, 08 Dec 2006 00:00:00 GMT Dear Helen,  I had surgury in the last week on a glio in my frontal lobe and would love to get the info on the Utah nutritionist you mentioned.  I am very interested in keeping the correct nutritional balance in the body to fight this as best I can.  Thank you for any help you could be on this matter. Sincerely, Hal Handsome_hal Wed, 03 Jan 2007 00:00:00 GMT My father has a similar diagnosis to yours.  Just wanted to see how you are doing now.  He has only been on the Temodar for 2 months and just finished radiation. Babies3 Tue, 20 Feb 2007 00:00:00 GMT Hi,I am responding to your message below-  my wife had a GBM removed 12/06 and we interested in treatments and nutitrition info.  she has had temodRtemodar and radiiation so far.  thanks ~  mike pierceOn 1/12/2005 Helenlee wrote:Dear Mark, My husband has been on Temodar for two years. He is in his 70's and had a glioblastoma removed two + years ago. He has also had an experimental drug at Hahnemann Hospital in Philadelphia which we feel has also made a big difference in his survival and recovery. And we work with a nutritionist in Utah for diet and suplements.If you are interested, please let me know and we will give you further information. We hope you are doing well. Sincerely, Helen L.  Mtp6061 Thu, 08 Mar 2007 00:00:00 GMT Hi Helen,I just read an '05 message of yours on Cancer Compass. My Dad was diagnosed 2 weeks ago with GBM and is starting radiation and chemo this week. My Dad is 67 years old and a great believer in natural remedies and supplements. I was wondering if you could provide me with the name of the nutritionist you work with in Utah. I live in Connecticut and have just begun immersing myself in this very scary subject area. Any help you can provide is greatly appreciated.With mank thanks,Barbara Gannon Toilsome Wed, 25 Apr 2007 00:00:00 GMT  On 1/12/2005 Helenlee wrote:Dear Mark, My husband has been on Temodar for two years. He is in his 70's and had a glioblastoma removed two + years ago. He has also had an experimental drug at Hahnemann Hospital in Philadelphia which we feel has also made a big difference in his survival and recovery. And we work with a nutritionist in Utah for diet and suplements.If you are interested, please let me know and we will give you further information. We hope you are doing well. Sincerely, Helen L.  Kerrie410 Tue, 17 Jul 2007 00:00:00 GMT  Hi Helen and everyone, My sister had a oligodendroglioma brain tumor removed five years ago.  In April of this year she was diagnosed with a GBM and had surgery at MD Anderson in Houston on May 15.  She had 20 days of radiation and was taking Tremodar chemotherapy pills.   The doctors discontinued the pills because they said you stop taking them after you are finished with radiation. Is that true?  And Helen, if you don't mind could you please tell me more about the nutritional supplements and the experimental drug your husband is taking.  Thank you so much.  I will keep all of you in my prayers. Kerrie410 Tue, 17 Jul 2007 00:00:00 GMT I have the same issue. I was able to receive it from the manufacture through there commit to care program you can call them and they can help you.1(800)521-7157 they are very nice people. Please let me know if it helps and my God bless you I will pray for you.Your friend,Denise4633 Denise4633 Sun, 18 Nov 2007 00:00:00 GMT Quite interested in the diet and nutrition info/site for cancer.My son has DSCRT a tumor similar to Brain tumors where Temodar is being used.ThanksBill  DrBill Mon, 25 Feb 2008 00:00:00 GMT What is the contact info of the Utah Nutrionist? viking31 Wed, 16 Apr 2008 00:00:00 GMT I have a Anaplastic Oligoastrocytoma grade three. I had surgery and then 45 days of radiation and chemo. I took Temador and now I am on a reduced schedule of maintenance therapy. Twice the daily dosage for five days a month.I am now in the middle of stage number 18. Temador is very expensive because it works! Bigbruce Tue, 29 Apr 2008 00:00:00 GMT I am just about to start my second round of Temodar.  The first round was pretty easy on me.  I took it every day for 42 days while I was doing radiation.  I just took it at night with Zofran (anti-nausea drug).  And the only side effect I had was constipation, but that was solved by eating extra fiber/metamusal.  I lost some hair too, but I ascribe that to the radiation not the Temodar.  Good luck. puls_81 Fri, 13 Jun 2008 00:00:00 GMT  On 1/12/2005 Helenlee wrote:Dear Darla, My husband was diagnosed with glioblastoma two years ago in Oct. He had surgery and a month of radiation and athe tumor returned. He began an experimental drug (Monoclonal Antibody 45 ) at Hahnemann Hospital in Philadelphia and the tumor seemed to stop growing. He also started taking Temordar. This was Jan. 2003. In March the surgeon felt the tumor has to come out becasue of its location. During the surgery he had gliodel wafers inserted in the now empty tumor bed. However he contracted an infection in the next few weeks which nearly killed him. So he had to have the bone plate removed and teh wafers washed out. He survived and after another surgery to implant a stent to control fluid on his brain and then some PT, he recovered. He started the temodar again in August 03 and took the experimental drug again in Sept. He has been tumor free ever since and except for a diet and supplements through a nutrtionist in Utah and Temodar every month, he has had no further problems with the cancer. He is in a small class of people with this cancer and at almost 75, he is some kind of a miracle to me. If you want any information about the docs we are consulting with, Iwould be happy to give you more inforamtion through this email site. Sincerely, Helen L.     shaylew Sat, 16 Aug 2008 00:00:00 GMT  On 4/16/2008 viking31 wrote:What is the contact info of the Utah Nutrionist?Hi, I am also looking for the Utah nutrionist, did you ever get any info from anyone? if you do,  please post it , my houband was dx with GBM 4in April. thank you'shay    shaylew Tue, 19 Aug 2008 00:00:00 GMT  On 4/16/2008 viking31 wrote:What is the contact info of the Utah Nutrionist?HI,Did you  get the info for the Utah nutrionist?if you did, please post it.Thank youmy husband dx with GBM IV in April, 08   shaylew Sun, 24 Aug 2008 00:00:00 GMT