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Brain stem tumor (me) glioblastoma IV (husband)

kate2kate
Posts: 19
Joined: Dec 2011

My name is Katie and I am 45 and live in the US. I was diagnosed with a brain stem glioma as well in March 2006. My tumor is very rare as well as is typical a pediatric tumor. But I am extremely lucky because mine is low grade. I have yearly MRI's and so far my tumor has not grown. My tumor is called a Tectal Glioma. It has the tendency to cause hydrocephalus which i do not have. I have found several adults with this tumor. Some have had growth some not. And I have found parents as well. My tumor can not biopsied or removed and there are limited treatment options. My tumor was found due to extreme migriane/headaches. The kept getting worse and became daily. I still have them daily and I am on a cocktail of meds, diet changes, as well as some other things. They are still 24/7 but a little better. I have also tried alternative meds for the headaches. I was told at first that the headaches are not caused by the tumor but every brain stem tumor survivor I find has had some headaches. At this point they think the tumor does contribute to my headaches.

Unfortunately my husband was dx nov 2011 with glioblastoma IV. It is inoperable. He went through radiation and temodar for 6 weeks which shrunk the tumor by 50%. He is just starting his second cycle of 5/23 of temodar. Hi is tumor is towards the back of the corpus callosum and it is intertwined in it. I get the feeling that this is not good.

We also have an eight year old son. I have gotten him and myself to see a social worker but my husband will not see or talk to anyone. Not friends ,family, or a support group or me. He does not have any fight mentality and it goes from him having a pity party to denial. This may sound really harsh but he is being a big baby when he needs to fight. He is the youngest of 7. His mother still babies him and so do his sisters. Example. One sister came over found out he was constipated and decided she (yes she) needed to call his GP for him and then take him to the doctor right away. That day I had 10 minutes to leave to get my right boob mamogrammed again because there was a problem. I told his sister that if hubby wanted to go to the doctor he could call himself and then I had to leave so I could not deal with the situation anymore. So instead of my husband telling his sister that he did not need to go to the doctor (again) for constipation they went.

When I got home I was exhausted they had found calcification spots and now wanted to follow that every 6months. Just what I needed. Hubby and His sister came home from the doc and Announced that the doc took back x-rays again to see if the cancer spread to his spine.....what???. This is the second time in the same month that his sister has taken him to th GP for constipation and the doc has done back X-rays to see if it has spread to his spine. I talked to his NO and the chances of it spreading to the spine is like less than -1%.Because I am not at the appt with his gp he is not getting proper info And his sister is a drama queen and works dave up into thinking he has a blockage or the cancer has spread. The story is a little longer but I would be typing all night. The only deficit Dave has is problems with short term memory. I bought him a IPhone which has calendars with reminders, apps for reminders and a multitude of apps he can download to use for reminders. His mother tells me I should write everything down for him. I tell her he is a 40 year old grown man with a $500 IPhone and he has a notebook, pen and tape to put up notes on the cabinets.

He also does not realize how lucky he is to have so few issues. But Instead of spending time with Sam (8 year old) he sits on the computer on his guitar forums for hours. He does not go to Sam's activities (basketball, cubs scouts) and he can I come home and he is on the computer or some other thing. He will help around the house but he just does not seem to get it. He needs to live his life and spend quality time with his son. He is also not doing what the doctors have told him like exercising.

I am sorry this became a vent but I don't know what to do anymore. I have tried being nice, tried giving him space, tried harsh talks like do you realize you are not spending time with your son and doing everything you can to fight. I even sent him to his mom's one weekend because I needed a break from his moods and I thought my son did too.

I am also dealing with our 13 year old beagle having cancer. He had a big tumor in his neck burst. The tumor was removed and tested and it came back as an aggressive form of cancer. We don't know if it has spread but we are not going to put him through tests just to see. We will keep him happy for as long as he has left. We also have 2 other dogs. 1 is older and has medical problems as well. So if I am not at the doctor for Dave or Myself I am at the vet with one of the dogs. My dogs mean a lot to me. They give unconditional love. You can be gone for an hour and they welcome you home like they have not seen you in a month. When I don't feel good they a nap with me. I love them

And my son. Mommy has a tumor, Daddy has a tumor and the dog had a tumor.

I feel so horrible for complaining here becuase so many of you just hope that your loved one lives one more day. But if I talked to Dave's family they only really care about Dave. We have been married 11years and when I was dx not one of them even called. At the time we were not sure if my tumor was growing. I have to say that my mother in law did help. If I talk to my parent they offer suggests and want to help but they don't live this awful nightmare. And of course we are both on disability. I have not worked since 2006 becuase the headaches are so bad. I have to nap in the afternoon to get my son off the bus and try to function through homework and whatnot. I have thought about not posting this. It is such a negative post. But It has been a bad week. I have been a lurker here for awhile and I appreciate everyone's honest posts. They do help to read. I don't think someone on the outside can begin to understand.

I am terrified. I am at the begging of this journey, my husband has no fight and won't seek counseling. And I am trying like hell to keep my sons life as normal as possible. I know that I am doing well for now? I got approved for soc sec, got down to one car payment, payment plans for hospital bills, Sam still sleeping in his own bed, having friends over, doing activities, and his grades are still good. I just don't know how I am going to do this for the long haul.

Please excuse typos. It's 2am, I have a migriane, and I have cried through this entire post (I don't cry much because I am not alone often). If you got down to the end of this post I thank you for taking the time to read.

Katie

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Kate:

The only advice I have for you is that you need to pray and find your faith. The only thing that has carried me through my daughter's brain cancer is faith and prayer. Meditate and pray with friends. Pray alone. Ask God to come now and be with you. He will. This is the most horrific journey. I am sorry that you have such a full load, but renew your faith everyday. Remain hopeful for your son and pray on your husband's desire to fight and live. I will pray for you and yours. I send you God's blessings.

Love, Edna

cindysuetoyou's picture
cindysuetoyou
Posts: 511
Joined: Dec 2009

Hi, Katie.

It's late, I'm tired, and I'm one-finger typing this post on my iPhone. But your post went to my heart and I just had to at least send a short note to you.

You are an amazing woman, holding up under such hard conditions! I feel ashamed that I am not coping and working as well and as hard as you---I'm only a caregiver for my 28 yr old son. He's fighting a recurrence of an anaplastic oligodendroglioma---you've probably seen some of my posts. I post a lot and I vent here a lot---like you said, this is one of the few places where you know that people really get what we are going through.

I'm having a rough time because my son is struggling and I can't think straight, but I did want to tell you that for me, I just try to tell myself "one day at a time." I get overwhelmed and so depressed when I try to think what will be going on next month---or even next week. I tell myself that getting through this is like eating an elephant---you do it one bite at a time. I don't know if I'm making sense....

I also can totally relate to your feelings about your dogs. My beloved Dalmatian developed stomach cancer and I had to put her to sleep. It was really hard---I kept telling myself that she was my dog, not my kid, but it broke my heart. I also have a Belgian Tervuren who is totally devoted to me, and she's slept in my arms for months, with my tears soaking her furry ruff. She brings me comfort with her constant presence and devotion to me. So I can understand the pain you feel about your beagle.

I wish I had some inspiring words for you---I would love to keep in touch and hopefully I can be a listening ear for you. Please hang in there....I believe you will have good days mixed in with your hard times. I had a physical therapist tell me that our life would be like the weather here in Oregon---we would have right sunny days and then dark rainy days, but just because one day is rainy and gloomy doesn't mean that tomorrow won't be sunny again. I've found that to be pretty true.

I will be thinking about you and praying for you. Please keep posting....

Live and blessings,
Cindy in Salem, OR
Mom of David, 28 y/o son diagnosed 5/09 with an aplastic oligodendroglioma, recurrence 7/11.

kate2kate
Posts: 19
Joined: Dec 2011

Edna - Thank you so much for the support.

Cindy- There is much I want to write to you. But I just wanted to put a a quick post. Please don't be ashamed. From lurking on this and board and reading your posts especially yours they have given me inspiration. I only hope that I have the strength, determination, and will power that you still have, later in this journey. I feel a little better today I have pulled up my big girl panties and I am ready to go forward once again. one funny note. I have managed for the most part to keep Sam sleeping in his own bed. Usually the only time he comes in is when he is sick or after a nightmare. Right after I typed that I have managed to keep Sam in his own room, he walked into my room (he had a nightmare) just have to laugh at that one. Dave and I have separate rooms. We have for years because he snores and I am a light sleeper and lack of sleep makes my headaches worse. I will keep in touch and thank you. Sam is home for the week so it may be tough to get a quiet minute unless he is busy with his friend. I would love to see a picture of your Belgian Tervuren. I am have never seen one. Maybe you can e-mail me a picture. Let me know how to get my e-mail to you or if I can just post it here. My 2 dogs are a huge part of my family. I was just not sure if others would be upset at the thought...... husband/dog. I know there is a big difference but I really don't want to lose my husband and dog at the same time.

Katie

sonfollower
Posts: 26
Joined: Nov 2010

Hi Katie. I have been on this site for several months but I typically dont respond or post to often. I have found this site to be a huge source of encouragement. I would have to agree with Edna. Keep God in focus and pray and have others pray for you.

I was dx on May 1, 2011 with a GBM IV. I have had a resection. They were not able to remove it all. I have had radiation for 6 weeks and Temodar. I had a month break to rest.
During the 6 weeks of radiation I had some complications with my incision and some how got bacterial spinal meningitis. I had to have a shunt place in my abdomin to help with the spinal fluid pressure. This makes my treatments a little more complicated. I had to take a break from the radiation and chemo. Once that was cleared I had to start over with the 6 weeks treatment. At this point, I have had this cancer for almost a year. I am doing the Temodar for 21 days, 7 days off. I have a new MRI every 8 weeks. I will go again the end of May.

The only thing that has been keeping me going every day is the fact that I know that we are only here for a short time. I try really hard (some days are harder than others) to start my day thanking God for a new day. I dont know how many days I have left. My cancer is pretty aggressive. So I have to be thankful for the time I have. There is hope.

I will be praying for you, your husband and your son.

This cancer is a tough one. I have found a few people that have the same sort of tumor I have.
God bless, Lora

sonfollower
Posts: 26
Joined: Nov 2010

Hi Katie. I have been on this site for several months but I typically dont respond or post to often. I have found this site to be a huge source of encouragement. I would have to agree with Edna. Keep God in focus and pray and have others pray for you.

I was dx on May 1, 2011 with a GBM IV. I have had a resection. They were not able to remove it all. I have had radiation for 6 weeks and Temodar. I had a month break to rest.
During the 6 weeks of radiation I had some complications with my incision and some how got bacterial spinal meningitis. I had to take a break from the radiation and chemo. Once that was cleared I had to start over with the 6 weeks treatment. At this point, I have had this cancer for almost a year. I am doing the Temodar for 21 days, 7 days off. I have a new MRI every 8 weeks. I will go again the end of May.

The only thing that has been keeping me going every day is the fact that I know that we are only here for a short time. I try really hard (some days are harder than others) to start my day thanking God for a new day. I dont know how many days I have left. My cancer is pretty aggressive. So I have to be thankful for the time I have. There is hope.

I will be praying for you, your husband and your son.

This cancer is a tough one. I have found a few people that have the same sort of tumor I have.

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Katie,

First, I hate that you have to be here, but I'm so glad to have "found" you.

My husband was diagnosed with brain stem glioma (diffuse intrinsic pontine glioma) in January 2011. We have a daughter who just turned 3. (And our 15 year old dog just had a cancerous tumor removed in December.)

I only have a minute as my daughter is waking up (and not having a good day) but PLEASE,
if you ever want to talk, I'm here. From what you wrote, we have a few things in common regarding our husbands behaviors... and I'd really love to talk to you about how you're doing. (If you would like to email me, you can reach me at Land dot Lesliesu at gmail dot com)

Hugs to you. You are an amazing and strong woman.

Leslie

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

First want to say Im so sorry. Second Im glad you found this site. I lost my sister to GMB4 inoperable in Oct 2011. My heart goes out to you. I dont want to go on about my sisters story.But I can tell you I do know how you feel. Everyday was a nightmare. I woke up and only for a second thought it wasnt real...only a second, then the ugly truth was there. Every day facing that I was going to lose my only sister, my very best friend in the world.
I just had no choice in the matter. We just had to do it. I cried everyday, and still do.
But looking back I surprised myself. Im a nurse and do this everyday, but doing it with my sister was a whole new world.
I just put one foot in front of the other, held the tears back as much as I could and played the brave sister. Screamed a few time in the car on the way home from work at night and prayed harder and longer than I ever did before. Pored my heart out on this site. And told my sister everyday that I loved her and that she was the best sister in the world...
Brenda
sister
GMB4 inoperable
dx Feb 22 2011
lost the best sister ever Oct 19 2011

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Katie,
How are you doing?

kate2kate
Posts: 19
Joined: Dec 2011

Brenda - thank you for the reply. I am so sorry you lost your sister. I can't even imagine but sometime in the future I will be facing losing someone I love as well. It is horrible to watch what the tumor, chemo, and radiation does. I know my husband does not have many deficits compared to others so right now I have to enjoy all the moments I can. I have a long road to face.

Leslie - I am feeling better. My son (8) went away overnight with a friend and I was able to get some really good rest. And I also did not schedule any doctor appts this week because Sam did not have school. So I was finally able to get out of a bad migriane string. I really needed a quiet week. It has been hard catching up on my doctor appts and still take Dave (hubby) to the doctor, and 2 older dogs back and forth to the vet. Thank you for asking about me. How are you doing?

I am familiar with your husbands tumor. I know that it is primarily pediatric and rare. It is also in his brainstem which makes it inoperable and hard to treat. I know you can't biopsy the tumor either. My tumor is the same except in a different part of the brainstem. Also the biggest difference is that I hit the lottery in brain tumors because mine is typically low grade and I could live my whole life with little to no growth. My NO say that I have a good tumor in a crappy place. I have found others with my tumor and we started a yahoo group. Some are adults and others are parents. Some have had growth others have not. I know there used to be a brainstem yahoo group and most in the group had your husband type of tumor but i don't remember if any were adults and this is going back to 2006. Unfortunately for your husband his brainstem tumor is an aggressive one like my husband GBM IV. I am not sure how they grade your husbands tumor. I hope your husband is doing well. How is your dog doing? Mine is actually doing pretty well. He is still stealing the youngest dogs dinner and loving his walks. He also won't lie down to watch tv if he is not next to me. My son and Potter (beagle with tumor removed) fight to sit next to me. Potter usually wins, it is so funny. I let Potter outside so I can snuggle with Sam.

- Dave did really well this cycle of 5/23 of temodar. His NO thought he had a stomach virus during his first cycle because he was so sick. His mood has been a little better too. We found an ad on Craig's list today for a bunch of Lego and got lucky that they were still available so we bought them and Dave and Sam have been playing Legos all afternoon. It is nice to see them together.

I will write again soon.

I would love to hear from you all again and I am thinking about you all and you loved ones.
Katie

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Katie,
I'm glad you were able to break out of that migraine string. Ironically, I've suffered from migraines since I was 9 years old (30 years now) and my husband is the one with brain cancer. I wish I could laugh at that.

I found the brainstem group on yahoo. Thanks for pointing me there. I felt like I'd looked everywhere to find others with DIPG and didn't think to go there. What part of the brain stem is your cancer located? Clint's NOs have said his is low grade, but that doesn't seem to fit everything you read about DIPG. I'm glad Dave did well with the Temodar. It seems like some people tolerate it well, and well, others not so much. Right now, Temodar is going to be a last resort for us as it really doesn't have much efficacy for DIPG.

Tigger, our 15 year old dog, is doing okay. They think they got all the cancer when she had surgery, so she's just getting old now. Her big problem is that when she has to poop, she has to poop NOW, and often times doesn't make it outside in time. Fortunately, she's a small dog and had tootsie roll poops... She was actually playing and running with my 3 year old daughter and me the other day- the first time I'd seen her play so energetically in a long time. Made us all smile.

May I ask what kind of treatment(s) you've had, if any? Or are you in the wait and see group? It seems like most of the problems my husband is having now are from the radiation (headaches, fatigue, GERD) and I guess I'll just have to wonder if we should have waited...but I'm thinking not. He's been stable for the past 3 MRIs/ 6 months, and they keep saying that they think it's shrunk some, but it's hard to tell. I'll just be thankful for that.

I'm hanging in there. By a string. I'm a huge stress ball. I am treating myself to a massage later today. And we did get some good, unofficial news that the VA is done with their medical review on my husband, so hopefully his medical retirement should be coming soon and we'll get to leave Hawaii to go home to be with all of his family. Hawaii IS lovely, but we're so far away from everyone and never get to see family. My husband needs that. I need that. My daughter needs that.

Write when you can. I think of you daily.
Leslie

kate2kate
Posts: 19
Joined: Dec 2011

Leslie I just wanted to let you know that I am thinking of you and Cindy but I have not had anytime alone to be able to write a decent post. I will when I can. My husband can't drive so he is home all the time and then I have my 8 year old.

Hopefully soon.

Katie

kate2kate
Posts: 19
Joined: Dec 2011

Hi Leslie,

The comment you made about your husbands tumor and you said you wish you could laugh well you should laugh. It's better than the alternative crying. Laughter is the best medicine. My tumor is in the tectum. for most it blocks the flow of spinal cord fluid and then people have to get a shunt put in. That has not happened to me. I have had not treatment. I am on the watch and wait plan.

How long has your husband had the tumor? It might be in a previous post but I forgot. How don't understand why they are saying it's low-grade unless he has been watched for a while. Usually tumors are classified by taking a biopsy but as you know that can not happen in our cases. But yes I had read the same thing about your husbands tumor. It is typically in children and high grade. Mine is also typically in children but low grade. My tumor i thnk is more rare than your husbands. There is almost no info besides shunt placement.

In the first couple years I was terrified that it would grow and would think about the tumor a lot. before my husbands tumor which brought tumors back into our lives I almost never thought about mine.

My NO told me that I have a good tumor (meaning it usually never grows) in a crappy place (if it grows you are in big trouble).

Let me know if you have any other questions I might be able to help with.

Sending big hugs,
Katie

LeslieLand's picture
LeslieLand
Posts: 49
Joined: Feb 2012

Hi, Katie. I haven't been on here lately. I went through a few weeks where between this site and the yahoo group, I wasn't getting anything else done because I'd start reading on the boards and get sucked in.

Let's see. Clint was diagnosed in January 2011. He'd been having what they thought were exertion headaches and they did an MRI just to rule out anything bad. Hmpht!!! He'd been having headaches for about a year, with no other symptoms. Even now, they think any other "symptoms" he has are from the radiation.

As far as the NOs saying it's low grade...I don't remember when they first said that. Sometime after he'd completed radiation. But, it has not grown any since it was initially seen- if anything, they say it appears to have shrunken some. I'm looking forward to going with him to his appointments after we move back to the mainland because I really want to grill these docs personally, lol.

How is your husband feeling?

Here's irony: I have suffered from migraines for about 30 years now, and Clint is the one with brain cancer. (sigh) Our daughter is 3 years old, and my migraines are significantly better than before I got pregnant, but I'm on day 3 of this migraine. Haven't had one like this since my first trimester almost 4 years ago. Bleck. Listen to me!!! Complaining about migraines on a brain cancer board! I'm so sorry! (shaking head)

I hope you had a nice Mother's Day.

Hugs back at ya!
Leslie

blamb
Posts: 1
Joined: May 2012

Katie

I pray for you to find a place that allows you to share your experience without the feelings of being sorry to do so on this or any other forum. Each of us bring blessings to others who share our "story" by "telling" it. Each of our journeys provides light for others to see theirs. I thank you so much for sharing yours! I know the power of faith and prayer has played a significant and comforting role in my journey and experience. I wish that for you and your family and I leave this with thought....

I am not sure what my future holds...but I know WHO holds my future!!!

All the best.
Peter
son of father diagnosed with Grade 4 Glioblastoma

christine anne
Posts: 3
Joined: May 2012

Hellow Katie

how brave are you !!

my dearest brother Paul had surgery for a brain stem glioma grade 4 he suffered really bad post op complications asperation pnuemonia but is improving slowly the oncologist has offered radiotherap and pehaps chemp further down the line do you know of any other treatment in the US rthat has been sucsessful we are in the uk manchester

Love and thanks god bless you

christine anne x

sippican
Posts: 6
Joined: May 2010

Dear kate,
Please don't feel sorry for venting here. We are all trying to do the best we can with an incomprehensible disease. You are doing an amazing job keeping it all together for your family. Even though your husband may not seem to notice or appreciate it he DOES. He is in self preservation mode I guess, but he deep down knows you are strong for your son and taking care of things. My husband has reacted similarly to having a GBM 4 dx in Nov 09 and a recurrence in Sept 11. He is not very interested at all in our family-my son is graduating from high school this week and we did not think my husband would make it to this date. Yet he is detached and does not even seem interested in all the happy times right now for my son. He, like your husband, does not look at the glass as half full. He likes to come home after work (we are thankful that he does still work!) and sits in the dark with glass after glass of wine. He is very preoccupied with himself and has nothing to give to my children or myself-it is understandable but painful for the rest of us.... He has shown no interest in making sure our family is secure-I have had to get wills, power of attorneys, living wills, insurance, etc. etc. taken care of without participation from him (besides a signature). It is so unlike him and it has made me feel like he does not care for us-I have felt resentful that he did not and has not wanted to put these things in order for his wife and children. But in the end I feel stronger for plodding ahead and doing what needs to be done. So march on my friend!! You are a strong woman! You are doing what needs to be done for your son; you are taking care of things for your husband because he is not capable right now. You are dealing with it and you must keep on.
Rely on your faith-it is what has gotten me through this- I try to read "Jesus Calling" by Sarah Young everyday-it is a devotional that is very encouraging. And if I may offer a verse....
"My flesh may fail but God is the strength of my heart and my portion forever" Psalm 73:26
We are not perfect but God can help us rise above and persevere.
Keep on, keep on, and come here to vent whenever you need to!!

cindysuetoyou's picture
cindysuetoyou
Posts: 511
Joined: Dec 2009

Hi, Sippican.

I have that same little everyday devotional book...I love it!

Can I share my current favorite Scripture? My favorites change, depending on where I am at on this devastating journey.....

It's from the first chapter of Luke, I think vs 78 and 79. It's talking about the coming birth of Christ....

"Because of God's tender mercy, the morning light of Heaven is about to break upon us, to give light to those who sit in darkness and the shadow of death, and to bring us to the path of peace."

I love this verse.

I had a talk with my oncology nurse today. I was very calm and controlled and I asked the hard questions. She told me that every case is different, and she could easily be wrong, but based on her years of experience (30+) and considering how aggressive the recurring tumors have been, she thinks we have less than six months, maybe closer to four. I was shocked and stunned and i'm not going to think about dates any more. My poor David that I love so much...with all of my heart, all of my being.....he's still fighting, still believing that he can beat this.......

What a nightmare all this has been. But I'm sure that I don't have to tell you or anyone else on this board that it's a nightmare.

Love and blessings and peace to all of you, and to me too,
Cindy in Salem, OR

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