CancerCompass message board discussion started by MyMomMyRock on 5/14/2008 http://www.cancercompass.com/message-board/message/all,24004,0.htm Thu, 20 Nov 2008 00:00:00 GMT Thu, 20 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mom was just diagnosed with brain cancer on Friday.  The doctor says it is GMB.  Stage 4.  I dont know much about this cancer except what I have read on the intenet.  I keep telling myself that the doctor was wrong.  She had surgery on Monday and he removed 50% maybe more.  My mom is the toughest person I know.  She has hardly been sick in the 63 years of her life.  After the surgery she looked like she was ready to go grocery shopping.(her favorite thing to do at 7 am on saturdays).  She looks like she is 53, very young appearance.  She had been complaining of headaches, and had been misdiagnosed since January, until Friday night when we took her to the ER and demanded to know what was wrong.  I have been doing lots of research on the internet but I cannot find much on this type of cancer and what treatment center is the best with this type.  I will travel to the moon if I have to.  MD Anderson sounds good.??  We live in the panhandle of Florida and she is at Baptist Pensacola.  Her name is Grace Blockburger.  It would mean so much to me if all who reads this can please say a prayer for her and pls put her on as many prayer lists as possible.  If one person can beat the odds it would be my mom.  She is a fighter.  I bought her a card that sings the song......."I will survive".  She laughed.  Please respond with ANY messages of treament centers,  survival stories and best chemo/radiation, or anything that relates.THANK YOU AND GOD BLESS  MyMomMyRock Wed, 14 May 2008 00:00:00 GMT There is actually lots of info on the internet and elsewhere about Glioblastoma Multiforme, or GBM. Google it and you'll likely find out more than you'd like to know. Try not to let the statistics get you down. They are just that--stats--and not everyone fits into the mold. (Also, some of them are quite dated). If you read the posts on this board you'll get a feel for what people are dealing with as far as deficits, side effects of treatment, etc. Everyone is different. Make sure your mom sees a neuroncologist, not just a medical oncologist, and that they are upbeat and aggressive in their treatment and attitudes. She doesn't have to be a patient atone of  the major brain tumor centers to receive the same treatment protocol that they use. Any neuroncologist worth his/her weight in salt is up on the latest treatments. You'll learn here what those are.Sorry for your diagnosis. It is a devastating one but you're in good company.Mary, dx 9/2007 mbg53 Wed, 14 May 2008 00:00:00 GMT virtualtrials.com has current trials your mom may qualify for. Make sure you research a lot, so you can challenge your doctors. clinical trials are a good source of treatment. There is not a cure for GBM, but these trials are around hopes with intent to extend life.  gbminfo Wed, 14 May 2008 00:00:00 GMT I know how you feel, my family member has it too dx) 1/08.  There is hope, I have seen personally how your faith in God works.  Many times we put or faith in God before continuing with certain meds that made him worse mentally and physically.  Stay on top of the docs and if you don't like ther response try a new doctor.  My cousin had a second reoccurence in feb 08 is doing well since surgery he is on his second chemo and radiation.  Doctors told us to take him home and make him comfortable.  No one would except that and neither did he.  You can fight this.  Tell your mom do not give up and fight no matter what they say.  Becareful what you read on the internet.  It will get you done and your mom needs you to be always stay positive.  I will pray for you,  we started a prayer chain and I thing it is the largest I have ever seen and prayers do work !!!!! LRindfuss Wed, 14 May 2008 00:00:00 GMT My husband was given 3-6 months in Dec 06 and we have just returned from two days at the Robert Preston Tisch Brain Tumor Center at Duke where, after a CT, MRI and PET, he was given an 'all clear'.  The Center has a website.  He is 62, has had surgery, Temodar, Avastin/CPT11, CCNU, radiation and has been back to work since May 07.  There is a lot of info out there and it can be very overwhelming - don't let it get you down.  Keep your faith - will be praying for you and your family. Karena  karena Thu, 15 May 2008 00:00:00 GMT GOD BLESS YOU and I can imagine how you all are feeling right now.  My 11 yr old is EXPECTING her MIRACLE and this is the scripture we are believing, and having FAITH that GOD will do what his word says.   Nahum 1:7, 9:  The Lord is good, a Strength and Stronghold in the day of trouble; He knows (recognizes, has knowledge of, and understands) those who take refuge and trust in Him.(C)     8But with an [b]overrunning flood He will make a full end of [Nineveh's very] site and pursue His enemies into darkness.     9What do you devise and [how mad is your attempt to] plot against the Lord? He will make a full end [of Nineveh]; affliction [which My people shall suffer from Assyria] shall not rise up the second time. BabyGirl11 Thu, 15 May 2008 00:00:00 GMT Hello, my Dad has only just been diagnosed with GBM.  My family is from Australia and I was wondering also if any of you known where the best places are to go for treatment. We are willing to take him anywhere. Any of your thoughts/ personal experiences would be greatly appreciated.  All the best.Anna Hopeisalwaysthere Thu, 15 May 2008 00:00:00 GMT My husband also has GBM, diagnosed 2/11/08 and surgery 2/17/08. He is doing well on a trial study at Duke University.  You need to enroll in this study before you start radiation and chemo.  It includes AVASTIN, which I believe has helped to cause the tumor to disappear...at least for now.He will start on Phase 2 on May 20th and that will be Temodar five days per month, Avastin and Irinotecan. You can get all your treatments in your home town, but need to go to Duke four times for exams, etc. The Study covers the cost of Avastin, which is very expensive. To find out more, contact Dr. Vredenberg at the Duke Clinic, Preston Robert Tisch Brain Tumor Center (919) 668-2397.I have read extensively about treatment options and feel that this is my husband's best chance to extend his life.  So far he has tolerated the drugs well, but is very fatigued.Good luck and we will pray for your Mother. Palmie Thu, 15 May 2008 00:00:00 GMT Anna, I am sorry for what you are going through at the present time.You have to know our prayers are with you and you Dad.I have one recommendation for you, although there are others, that is Duke University Medical Center, Durham, North Carolina.USA.   You see I am a patient there.   Was diagnosed last June with GBM stage 4.    Dr. Alan Friedman was able to remove my tumor.Or as they all it a "total gross resection",   July of 07 to September 07 I had radiation and chemo.   Now I am in a clinical vacinne trial.   There is still not  a sign of any regrowth or cancer "dust".   I cannot sing their praise enough, do your research meanwhile just CALLDuke offers so much support and HOPE.  They would help you and your dad cope with treatment, accommodation etc.,and work with your doctors at home just please call, you have nothing to lose.  You can find out about Dr. Friedman, there are two!  Dr. Allan H.  and Dr. Henry, (they are not related) either one will be able to help you .   Check it out on the web.I wish you luck, keep positive .   You and your family are in my prayers.Frances  On 5/15/2008 Hopeisalwaysthere wrote:Hello, my Dad has only just been diagnosed with GBM.  My family is from Australia and I was wondering also if any of you known where the best places are to go for treatment. We are willing to take him anywhere. Any of your thoughts/ personal experiences would be greatly appreciated.  All the best.Anna  Frances2 Fri, 16 May 2008 00:00:00 GMT HiMy sister was just diagnosed with Glioma Stage 4 on Wednesday.  She is also 6 weeks pregnant.  They removed the entire tumor and they want her to start Chemo and Radiation next week.  They told her that her life span would  be 15 months.  We do not accept that and we have had everyone praying.  This all happend on April 17th when she had a seizure.  She is only 35 and in perfect health.  They rushed her to the ER and found a Tumor in her Brain the size of a small walnut right by her motor skills.  They did another MRI two weeks later to find out that the tumor was growing aggresively.  They got the whole tumor out but where we go from here I just don't know.  She did a MRI Today and it was totally clear but they said that doesn't mean she is clear of the cancer.  There could be small cells floating in her brain.  We will keep your Mom in prayer and please keep my sister Gina in prayer.  If I find out anything new I will let you know.  This board really helps me with all the information from survivors and people that won this battle.  Danielle myweddingbus Fri, 16 May 2008 00:00:00 GMT  On 5/14/2008 MyMomMyRock wrote:My mom was just diagnosed with brain cancer on Friday.  The doctor says it is GMB.  Stage 4.  I dont know much about this cancer except what I have read on the intenet.  I keep telling myself that the doctor was wrong.  She had surgery on Monday and he removed 50% maybe more.  My mom is the toughest person I know.  She has hardly been sick in the 63 years of her life.  After the surgery she looked like she was ready to go grocery shopping.(her favorite thing to do at 7 am on saturdays).  She looks like she is 53, very young appearance.  She had been complaining of headaches, and had been misdiagnosed since January, until Friday night when we took her to the ER and demanded to know what was wrong.  I have been doing lots of research on the internet but I cannot find much on this type of cancer and what treatment center is the best with this type.  I will travel to the moon if I have to.  MD Anderson sounds good.??  We live in the panhandle of Florida and she is at Baptist Pensacola.  Her name is Grace Blockburger.  It would mean so much to me if all who reads this can please say a prayer for her and pls put her on as many prayer lists as possible.  If one person can beat the odds it would be my mom.  She is a fighter.  I bought her a card that sings the song......."I will survive".  She laughed.  Please respond with ANY messages of treament centers,  survival stories and best chemo/radiation, or anything that relates.THANK YOU AND GOD BLESS  Take the advise of the messages above.  The Preston Tisch Brain Tumor Center and Duke in North Carolina is very HOPEful!  My brother has had a very positive experience with all the doctors/personnel there.  Don't be discouraged and be sure to stay positive for yourself as well as your mother, Grace.  We met patients that have had extremely good results and we are expecting the same for my brother, Mark.  My thoughts and prayers are with you and your family.  Please keep my brother Mark Lines in your prayers too.  May God Bless you.  Jackie  green2 Mon, 19 May 2008 00:00:00 GMT My prayers are with you - my brother, Mark Lines,  has this tumor also  and we are very positive.  The Preston Tisch Brain Tumor Center at Duke University in North Carolina has been a wonderful experience for us.  I wish you and your sister many blessings and will keep you all in my prayers,  Jackie green2 Mon, 19 May 2008 00:00:00 GMT  On 5/19/2008 green2 wrote: On 5/14/2008 MyMomMyRock wrote:My mom was just diagnosed with brain cancer on Friday.  The doctor says it is GMB.  Stage 4.  I dont know much about this cancer except what I have read on the intenet.  I keep telling myself that the doctor was wrong.  She had surgery on Monday and he removed 50% maybe more.  My mom is the toughest person I know.  She has hardly been sick in the 63 years of her life.  After the surgery she looked like she was ready to go grocery shopping.(her favorite thing to do at 7 am on saturdays).  She looks like she is 53, very young appearance.  She had been complaining of headaches, and had been misdiagnosed since January, until Friday night when we took her to the ER and demanded to know what was wrong.  I have been doing lots of research on the internet but I cannot find much on this type of cancer and what treatment center is the best with this type.  I will travel to the moon if I have to.  MD Anderson sounds good.??  We live in the panhandle of Florida and she is at Baptist Pensacola.  Her name is Grace Blockburger.  It would mean so much to me if all who reads this can please say a prayer for her and pls put her on as many prayer lists as possible.  If one person can beat the odds it would be my mom.  She is a fighter.  I bought her a card that sings the song......."I will survive".  She laughed.  Please respond with ANY messages of treament centers,  survival stories and best chemo/radiation, or anything that relates.THANK YOU AND GOD BLESS  Take the advise of the messages above.  The Preston Tisch Brain Tumor Center and Duke in North Carolina is very HOPEful!  My brother has had a very positive experience with all the doctors/personnel there.  Don't be discouraged and be sure to stay positive for yourself as well as your mother, Grace.  We met patients that have had extremely good results and we are expecting the same for my brother, Mark.  My thoughts and prayers are with you and your family.  Please keep my brother Mark Lines in your prayers too.  May God Bless you.  Jackie  I will pray for him, dont worry.  I will also put him on the same prayer lists as my mom is on.  Thanks for your kind words! MyMomMyRock Tue, 20 May 2008 00:00:00 GMT Just wanted to let you know that the treatment that my brother, Mark is on is the 6 weeks of Chemo/Radiation and we got him on a study at Duke that involves Avastin/CPT-11 (Ironotecan)/and chemo (temazolamide) and it seems to be working well for Mark - his last two MRI's were "clear" Again, best of luck to your mom - Jackie green2 Wed, 21 May 2008 00:00:00 GMT HI- Jackie,I called Duke today and spoke directly to Dr. Friedman (Henry).  WOW!!  What a great experience.  I cant wait for him to get her MRI pre and post op disc.  We sent it out today and he said he will review it and call me back.  I was very impressed!  I would recommend this to anyone who is newly diagnosed to have the Robert Tisch Brain Tumor research center review the patient records.  The contact number is  919-668-2397.  I cant remember who posted the number to me but thank you, and thank you to all who have had great experiences at Duke and have shared!  I received his phone call personally within 45 minutes of my initial phone call.  He was very serious and professional and really seemed like he wanted to help. Mark has been in my thoughts and prayers.      MyMomMyRock Thu, 22 May 2008 00:00:00 GMT