CancerCompass message board discussion started by stressedwife on 4/15/2008 http://www.cancercompass.com/message-board/message/all,23101,0.htm Thu, 21 Aug 2008 00:00:00 GMT Thu, 21 Aug 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I'm new to this website.  My husband was diagnosed with a ogliodendroglioma April of 2001.  He is now 38 yrs old.  June of 2001 the removed the front left lobe of brain along with tumor.  Followed by external radiation.  In our home town, we were told that chemo was not a option, we decided to go to MD Anderson for 2nd opinion.  MD ordered chemo to be done in our home town.  After completion of chemo in July 2002, the tumor did not change until July 2005, at this time we went to LSU in New Orleans and had the gamma knife performed.  Again it stood still for about another year.  August of 2006 we returned to MD Anderson to be told that they could try surgery but the risk were to great for us to take the chance.  April of 2007 started a down hill spiral.  He is still somewhat ambulatory.  We have 4 children ages 17, 15, 12, & 8.  Either I'm home or one of the two oldest children are always home with him.  The seizures are starting to increase.  We have been told we are heading toward the end.  This was a very viable man 7 yrs ago.  He worked in plant building tanks for the government.  He fished, hunt and worked on motors.  He still did some work on motors and other things until a year ago.  I was shocked on how fast things went down after 6 yrs of almost nothing.  I guess my question is does anyone out there have any other information on treatment options or just some moral support.  We live in a small community and people try to understand, but it is hard when they haven't went through it. stressedwife Tue, 15 Apr 2008 00:00:00 GMT My heart goes out to you.  I have 5 children, my youngest is 15.  We have seen my husband/father go downhill since January.  Your right, people don't understand, but I guess sometimes it's just ok or even feels good knowing people are praying and thinking about us.  Right now though, I don't feel like visitors.  It's difficult enough just to have family around.  I question why does he have to be so confused/disoriented.  Why is he being put through this.  Since the blood clots started in January, he hasn't been able to walk on his own.  I do realize too that since the cancer is growing on both sides of his brain that the reason he is so weak could be from the tumor growth.  Keeping you in my prayers.  Aacddd3 Tue, 15 Apr 2008 00:00:00 GMT I do appreciate all the prayers.  That is where I get my strength from.  My husband can still walk on his own, just not very well balanced.  But that is getting worse also.  I know that the tumor has started to grow on the left side also, it is just hard.  It is nice to know that I'm not alone.  I have felt alone for the last 7 yrs. stressedwife Wed, 16 Apr 2008 00:00:00 GMT My wife has had an oligo for nearly 14 years.  She had her third tumor surgery in Oct. '08, but there was a problem and she had a big stroke.  She is now paralyzed.  Also the tumor has become more aggressive.  I don't know how much time is left, but the outlook isn't good.  You may want to ask your doctors about temodar.  It is a relatively new chemo that my wife has been on.  Like anything, it may or may not be effective. good luck boneman Thu, 17 Apr 2008 00:00:00 GMT  On 4/15/2008 stressedwife wrote:I'm new to this website.  My husband was diagnosed with a ogliodendroglioma April of 2001.  He is now 38 yrs old.  June of 2001 the removed the front left lobe of brain along with tumor.  Followed by external radiation.  In our home town, we were told that chemo was not a option, we decided to go to MD Anderson for 2nd opinion.  MD ordered chemo to be done in our home town.  After completion of chemo in July 2002, the tumor did not change until July 2005, at this time we went to LSU in New Orleans and had the gamma knife performed.  Again it stood still for about another year.  August of 2006 we returned to MD Anderson to be told that they could try surgery but the risk were to great for us to take the chance.  April of 2007 started a down hill spiral.  He is still somewhat ambulatory.  We have 4 children ages 17, 15, 12, & 8.  Either I'm home or one of the two oldest children are always home with him.  The seizures are starting to increase.  We have been told we are heading toward the end.  This was a very viable man 7 yrs ago.  He worked in plant building tanks for the government.  He fished, hunt and worked on motors.  He still did some work on motors and other things until a year ago.  I was shocked on how fast things went down after 6 yrs of almost nothing.  I guess my question is does anyone out there have any other information on treatment options or just some moral support.  We live in a small community and people try to understand, but it is hard when they haven't went through it.commend you on your courage, and my family and I will pray that the Lordgives you strength and even more courage. As a brain cancer patient for going on eight years, I can tell yo that the support from my spouse and my children has allowed me to make it this far. I often find myself asking God, "Why me, and why now?"  There is a new medication that is apparently the leading chemo drug called, Avasten. It's expensive, but it is covered by most medical plans. After a few weeks of searching, I found that the best clinics to go to are Uof C San Fransisco, MD, and the Mayo clinic in Arizona. I was told by my oncologist that I could have Gamma Knife to my brain more than once, you may want to check on that. With doctors, you sometimes have to use an agressive approach in getting what you want. I have had to terminate one of my oncologist, due to lack of my best interest. You can use you weight more if you have a private medical plan, but you are at the mercy of the goverment if they're paying for it. Let me know if you would like any other information, and I will be happy to help. Love those kids, Chad A. SearsI chadracks Thu, 17 Apr 2008 00:00:00 GMT My heart goes out to you. My husband was diagnosed with a oliodendroglioma last May, a week after his 30th birthday. I know exactly how you feel when you say "you have not lived for seven years." Sometimes I believe I am faking life and going through the motions. They say he may have 10 years. That sounds great when you hear stories that people have shorter life expect. However, when it is your huband and your 31, with three small children it is heart wretching too. I am at the stage where he has full capacity. Seizures occur maybe every six weeks right now, he is on phenytoin 530 mg, and that has been really reliable. Anything lower he has a seizure. He is on Temador, 8th month. So far the tumor hasn't grown or shrunk. It is so scary to me though when I think of the future. My husband is such a great man and I want my children to remember him, know him and share their klives with him. My sons are 3 and 5 and a daughter who is 12, and a Daddy's girl forever. The umor is in the right frontal lobe, and they cannot do surgery because it would cause much harm to the healthy area, it is like sugar in a cake batter I am told. May God keep watch over us and all that need him.   NicoleH. Thu, 17 Apr 2008 00:00:00 GMT I truly understand how you feel.  My husband had his 1st seizure one month after he turned 31.  They told us it was from the migraine that he had before the seizure.  Four days later he had another one while at work and was taken to the ER and that is when everything changed.  His tumor began on the front left lobe and they removed about 40% of the tumor and brain in 2001.  We went through radiation and chemo.  Tumor did not grow or shrink for about 4 yrs..  Then in 2005 is started growing, we did the gamma knife.  Then about a year later it grew a little more.  Now every 2 mths. the MRI shows significant growth and swelling.  His seizures were few and far between at first, but now they happen on  a regular basis.  I'm hear if you need to talk or just vent.  Sometimes that is all I need is to vent.  You and your family are in my prayers.  It is very hard on the kids.  I know most people look at my husband and says things like "it is sad to see him like that", or "this has to be so hard on him".  They forget that he has a family going through this too.  We will put your family on the prayer list at church.  stressedwife Thu, 17 Apr 2008 00:00:00 GMT To answer the gamma knife question.  The new growth is too close to the previous site.  One of the most recent doctors that saw us, actually trained at the Mayo Clinic and has experience with this tumor.  After we saw him, we took he word on no treatment options.  Thank you for the information.  I will pass this on to the doctors. stressedwife Thu, 17 Apr 2008 00:00:00 GMT  On 4/15/2008 stressedwife wrote:I'm new to this website.  My husband was diagnosed with a ogliodendroglioma April of 2001.  He is now 38 yrs old.  June of 2001 the removed the front left lobe of brain along with tumor.  Followed by external radiation.  In our home town, we were told that chemo was not a option, we decided to go to MD Anderson for 2nd opinion.  MD ordered chemo to be done in our home town.  After completion of chemo in July 2002, the tumor did not change until July 2005, at this time we went to LSU in New Orleans and had the gamma knife performed.  Again it stood still for about another year.  August of 2006 we returned to MD Anderson to be told that they could try surgery but the risk were to great for us to take the chance.  April of 2007 started a down hill spiral.  He is still somewhat ambulatory.  We have 4 children ages 17, 15, 12, & 8.  Either I'm home or one of the two oldest children are always home with him.  The seizures are starting to increase.  We have been told we are heading toward the end.  This was a very viable man 7 yrs ago.  He worked in plant building tanks for the government.  He fished, hunt and worked on motors.  He still did some work on motors and other things until a year ago.  I was shocked on how fast things went down after 6 yrs of almost nothing.  I guess my question is does anyone out there have any other information on treatment options or just some moral support.  We live in a small community and people try to understand, but it is hard when they haven't went through it.KEEP READING...MY ADVICE IS AT THE BOTTOM OF THIS RESPONSEI am a 44-year old female diagnosed with stage III oligodendroglioma in 2002.  I actually received an original diagnosis of stage IV glioblastoma multiforme.  I was 38 at the time.  My surgeon told my sister I would need to look outside of my local community for help and my survival statistic was 10 months.  My tumor was located in right frontal lobe.  I had tumor resection, radiation and one and a half years of chemotherapy which was oral chemo called Temodar.  I received a second opinion and a second pathology review at the University of California San Francisco, where I also received this treatment plan.  I am currently on seizure medication - Keppra.  I don't know if this information helps you, but I can tell you that this was hell on my family.  I was a divorced single mother with one child.  I remember apologizing to my family often.  My sister went back to California a week after my surgery and spoke to her therapist.  Her therapist said it was an honor for my sister to be able to be a part of my life at this critical moment.  When someone is facing a major illness and the possible end of their days on earth, the caregiver can be exposed to very intimate gifts from their loved one with cancer.  I certainly didn't see my cancer as a gift to my family as their hearts were broken.  But we chose to make the most of every moment, I chose to live, and realized this illness will be a life-altering experience for me.  My heart goes out to you, your husband and your children completely.  I never forget the people who have helped me get here today.  I don't know what to offer you except to say cherish every day as much as you can and know that somehow your children will take this experience into their adult years and it will shape them and impact them in a positively profound way.  This experience will provide them with unexpected coping skills to guide them later in life... the ability to love unconditionally, find their inner strength, achieve difficult goals, view life's obstacles with an open mind, learn acceptance, value true forgiveness and give of themselves to those who have less.  As parents, we try to teach our children all the life skills necessary to guide them, we simply never expect to teach through incredibly difficult circumstances.  Embrace this time with your husband and children.  Do not prepare for death, live only for today. nanner2002 Fri, 18 Apr 2008 00:00:00 GMT Thank you for your message.   All the other responses have been about what or who I should contact.  As if I haven't tried all my options already.  My husband is on 3 different types of seizure medications and steroids.  Each day is new.  It is like have a 3yr old in my house again.  But the good news is that his personality change was for the better.  I will put your family in my prayers.  I thank God for the family that I have.  My community has been a God send through all of this. stressedwife Fri, 18 Apr 2008 00:00:00 GMT Thank you for your responce. I actually thought about you a lot today. I have researched and there isn't a lot on oligodendrogliomas. Sure, there is the basic information but not real stories that help us going through this, what others have experienced. Thank you for your offer to help. I have one question, my husband is doing well mentally, he doesn't worry about the diagnosis they gave him (it is always in the back of my head). He is frustrated with all the medication and the occasional seizures. Sometimes he will mention retirement and other things way in the future. I know it is healthy to think this way and not "dooms day." My question is how did your husband handle the diagnosis? I appreciate the person who posted don't live for death, but for tody (something like that). Little sayings like that help. I will keep you in my prayers as well as your children. God bless you. NicoleH. Fri, 18 Apr 2008 00:00:00 GMT My husband was okay with the diagnosis.  But he was not able to return to work, due to the type of work he did.  But up until last year he was still able to do his hobbies, such as tickering with motors and fishing.  Over the last year his abilities has deteriated alot.  Just tonight he had bladder problems.  So as you see each day brings new things.  I know I have been looking this tumor up on the internet from time we were diagnosed.  I keep hoping that some new information will show up.  But we take one day at a time, each day is new and God gets us through it. stressedwife Fri, 18 Apr 2008 00:00:00 GMT Thank you so much for your reply. I am so sorry to hear that there is now the other problem (bladder). Thia year has been so emotional. I too hope the will find new methods for a cure or atleast some longer time. I was wondering does your husband have seizures when he is awake or asleep or both? So far my husband only has them in his sleep, which has allowed him to keep his diagnosis mum, at work. I fear the day he may have one at work, that will change life further. I am battling other concerns too. I am a private school teacher in a Christian school. Our three children attend from preschool to 8th grade. I love being there with them but the pay is quite a bit lower then if I taught in a public school. If I was working and making more money it will be easier when that transition comes, but then I struggle with what is best "now." I have to think about our house, bills, feeding them, too because that is security for my children. So I struggle with staying where I am happy, and doing God's work, or preparing for the future. Being a teacher I cannot just quit one day and start somewhere new. It can take awhile to get hired on and then you may not be hired back, in a public school. I am sorry to burden you with my problems, it just gets overwhelming and most do not have this situation, where you have time (years) just not enough. It feels like sometimes I am watching him slowly dying. We were told we have this many years about, what are you supposed to do with that? I know God only knows the future, and I do enjoy each day with him, it is just very scary. I hope you have a good day today. God bless.   NicoleH. Sat, 19 Apr 2008 00:00:00 GMT I feel for you.  When my husband first got diagnosed 7yrs ago, I just quit my job to be a stay-at-home mom.  We went from 2 incomes, to 1 income, to 0 income in a month.  Up until the beginning of this year I worked whenever I could.  But now all I do is stay home with him and volunteer with the local recreation dept..  It keeps me busy.  My two oldest and myself takes turns staying with him.  I have a schedule worked out, so I know when he goes to sleep I have about 4hrs before he gets up again.  Over the last 7 yrs my faith has grown greatly.  I used to worry about bills, food, etc..  But God has taught me to just have faith.  When I relied on myself, we struggled all the time.  But now I leave it up to God.  We always have enough food and bills get paid.  We don't live the life of luxury, but our needs are taken care of.  Your church family will help if they know what is going on.  Sometimes they help and I don't even know until it is done.   My husband has seizures both asleep and awake.  It has taken years and at times I just think I can't do it anymore.  But God gives me the strength.  Just like last night when I was giving him a shower at 11p.m. to wear he didn't smell of urine.  But God has given me the energy and strength to be a baseball mom today.  God is my rock and I depend on him first and then everything else falls into place. Trust in God and he will provide.Bridget stressedwife Sat, 19 Apr 2008 00:00:00 GMT Thank you for your beautiful words. I was at church yesterday and the homily was on vocations, and that if you leave it in God's hands (and put him first) you will be happy. If you try to handle it yourself, it will fall apart. It was so similar to your message, (God is working). I do need to focus on faith. We battled infertility at the age of 21, and we thought (or atleast I, thought it was the end of the world). We ended up adopting three children from foster care (a whole other story), (God is great) and they are our children. They help me get through this, they need me. How is your husband cognitively? I noticed about two months before we knew anything was wrong that he seemed more forgetful and less "sharp." Not to any extreme but just a slight. I contributed it to turning 30. Now, he is less patient, always sleepy (medications), and the deep connection we have always had is there but there are times it feels gone, and I have never experienced that before. I then remember I need to make every day a good one and I do my best. His seizures occur in his sleep so I worry whenever he naps. I am not always home yet. How are your children doing? Only my oldest knows her dad has a brain tumor, the two boys do not (ages 3 and 5). She doesn't know the prognosis. Thank you for spending your valuable time "talking" with me. Have a great day being a baseball mom.   NicoleH. Sat, 19 Apr 2008 00:00:00 GMT