Astrocytoma Brain Tumor

mistymoon · Posted: Sun Apr 15, 2007 9:21 am Post subject: Astrocytoma Brain Tumor

Hi everyone, I am very new to a forum. My husband and I will be together 20 years come August 1, Married for 7 years come Sep 11, 2007. We were married Sep 11, 1999, Oct 17, 1999 Dan was diagnosed with a brain tumor. One month prior to us getting married, we found out that I had to have a histirectomy on Oct 19,1999. I re-scheduled as I needed to be strong for my husband and what he was going through at the time. It all started with one BIG headache on the Friday before. He never had headaches, so we took him to an afterhours clinic, prescribed 600mg of ibprofen (excuse spelling). He was fine Saturday until midnight. Just went to bed, he sat straight up, ran to bathroom. I followed him as he was breathing real heavy like he was hyperventilating or something. I was asking him what was wrong, but he would not answer me. I did not know at the time that he COULD NOT answer me. We now know that what he was going through was a focal seizure which causes him to lose his speach. He had a biopsy which is how we know it was a level 3 Astrocytoma Brain Tumor. His surgery was scheduled for January, I had my surgery in December. To make a long story short, Dan had surgery, 31 treatments of radiation and 1 year of chemo. He was off work wor 2.5 years, went back to work for 4 years (Truck mechanic). December of 2006 his seizures started to be more often and he was wiped out, we were on vacation for 2 weeks in December. He went back to work in January and I asked family Dr. to put him off or 2 weeks because he was having so many seizures and was exhausted. He was already scheduled for an MRI in Feb. Called the Neurosurgeon day after MRI was done and he called me back next day, saying that he could see something but did not elaborate, wanted to see Dan the next week. We went in to see him and saw the MRI and the tumor is back in almost the same spot and is 5cm. He forwarded the info on to the Radiologist and Chemo specialist and it took 3 weeks for this to happen. Met with Chemo specialist and he told us that they don't recommend surgery due to high possibility of blindness this time as the tumor is in deep and no radiation. Only chemo by pill form at home (Temodal) 5 days 300 mg per day, 23 days off, then Dr. visit again. Dan has done this twice now, will see Dr. again April 30. They will only do another MRI after 3rd chemo treatment. Dan, takes dilatin for his seizures, Neurosurgeon put him on Decadron (common name) for the inflamation, to help control the pressure on the brain and reduce the seizures. It has worked but he is constantly hungry and has gained so much weight, feels very uncomfortable. They have started to slowly decrease this medication by 1/2 a pill per week, he was taking 4 per day, starting tomorrow he will be down to 2 per week. He is still hungry all the time, I think he is depressed, he doesn't talk about how he feels very much, he never wants to go anywhere, just wants to stay home. He is bored, he loves to work and because he is so tired and feels heavy (weight) he basically watches T.V., does the dishes (loads dishwasher) and that is about it. He is still able to talk, walk, etc.. mostly just always tired. The decadron also has something in it that causes mood swings (he gets very negative, defensive easily). This is the part I have a hard time with as he was never like that before. I constantly have to remind myself that it is the medication and not him. He was very disappointed that they were not going to operate and just take that thing out of there again. The first time around they told us that Dan had 6 months to 2 years to live. We got a second opinion and he suggested surgery, rad. and chemo. We took this advice and that was 7 years ago. We don't seem to be getting any opinions as far as time lines go this time and that scares me. I got on the computer this morning looking for something, anything, not really sure what, when I stumbled onto this forum. The first one I read was overwhelming, I cried while reading about everyones illnesses and how the spouses were feeling and what they were going through, then it was locked and I didn't know what had happened to everyone, so I went searching and was very sad to find out that the disease had won. I keep hoping, praying that we can beat this thing, but I also wonder if trying to fight it, is worth it. I was so much stronger the first time around that I am now. The not knowing really terrifies me. Seeing Dan so sad and negative worries me so much, I feel like maybe he has given up, even though he takes the meds and does everything the Drs. recommend I think he has lost the will to fight. We have lots of friends and family but I feel I don't want to constantly burden them with my fears and my crying that I just stick to the facts and stay strong for them as well. Well this was a long first posting. Sorry if I rambled. Thanks for reading. Nat
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Nat

rlee · Site Admin Joined: 15 Jan 2006 Posts: 245

mistymoon,
I'm very sorry to hear about your husband, and the story is all too familiar here at Cancer Forums. So know that you are not alone in your struggle. Feel free to write as little or as much as you want as this is a place for you. Best Wishes,
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RLee, MD

Any information provided is NOT intended to provide specific medical advice to users but rather to provide users with information to help them better understand their health condition and related care. All readers are strongly encouraged to consult with a qualified physician for answers to their personal medical questions.

MedallioN · Regular Joined: 13 Apr 2007 Posts: 10

misty i wish you and your husband the best of my wishes and hope something gets done

brainman · Posted: Thu Apr 19, 2007 3:19 pm Post subject: Re: Astrocytoma Brain Tumor

Hi Nat,
Rather than re-tell my story I am just adding links to my version of this sad story. Like your husband, I was diagnosed with an Astrocytoma. Mine was first diagnosed in 1992 but recurred (as an oligodendoglioma) in 2005... same location as the original cancer. I did not have any headaches but my seizures made it impossible for me to speak. I know how helpless that made me feel. I have also struggled with depression… I am still struggling with that. I take a mild anti-depressant to help. Work has been impossible to find. I have the mood swings too and occasionally think about just giving up totally.
Anyhow, I just wanted to let you know that you and your husband are not alone in this fight. I will be praying for you and your husband.

http://cancerforums.net/viewtopic.php?t=2405

http://cancerforums.net/viewtopic.php?t=3279
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

mistymoon · Posted: Wed May 09, 2007 9:40 pm Post subject: Re: Astrocytoma Brain Tumor

Hi guys, thanks for your messages, it truely helps. My husband is going through a rough patch right now. he just finished is 3rd treatment of Chemo (temodal) and he is pretty much a feeling lousy. Lost alot of speach and memory, he is very emotional. Called Nerosurgeon and Oncologist today and they have put him back on Decadron as he is having more and more seizures, and we are all very concerned about his speach loss. He goes for an MRI on the 28th of May, I am not feeling very hopeful at this point. I feel I am not as informed this time around. My husband also sees the Radiologist on Monday, this is his annual visit and I am looking forward to seeing her as she is so honest and easy to talk with and will answer all my questions. I believe that thanks to her Dan has made it through these last 7 years.

Anyway, thanks again for listening. Jim, I can't believe how similar your story sounds to my husbands. Take away the different drugs and it is so familiar.

Please do not give up, I know things are not always easy but you have people around you that Love you and you need to rely on their help, love and support and take as much help as you can get to get through it all.

Dan is feeling pretty helpless these days and I am sure he is struggling with some depression as well and maybe I should consider taking him to see someone.

Thanks again to you all, I am so glad I stumbled onto this forum.

God Bless
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Nat

brainman · Posted: Fri May 11, 2007 11:55 am Post subject: Re: Astrocytoma Brain Tumor

Nat, sometimes the only thing that keeps me going is the knowledge that in some little way I am helping others by being a part of this forum. It may not be what your husband need. However, he does need a reason to live. Help him to find HIS own outlet. At the very least, he is grieving the loss of his health and all of the dreams he had for a future with you. It took me well over a year to start dreaming about any kind of future. It was one of the most powerful lessons I had to learn: How to live one day at a time. I am still learning that lesson. However, as I learn it, I am able to start dreaming about the future again. My story is not over yet... and neither is the story of your husband.

Good luck to you and your husband.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

brainman · Posted: Sat Jan 12, 2008 5:35 pm Post subject: Re: Astrocytoma Brain Tumor

Nat, I just read your reply to someone else. I am very sorry about your husband's death. If I knew this, I have forgotten about it. I just want to say that as a 15 year survivor, I am sorry that your husband has not survived. I am glad that the two of you were so close. It does sound like the two of you tried to make the most out of the time you had with him and that you are continuing to live day by day.

This weekend, I will be thinking about and praying for you in a special way.

Regards
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

jenugl · Posted: Sun Jan 13, 2008 6:03 am Post subject: Re: Astrocytoma Brain Tumor

Hi Nat, I'm so sorry to learn that your husband lost his fight against this horrible disease. It scares me to even think about life without my soul mate. Im also sorry to hear about your Mother-in-law. Different people cope differently. Please know that we are here for you whenever you need to talk or scream or remember the good times. Sending you a big hug across the oceans. Jen
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Love to all. Jen.
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Partner of GBMIV survivor - so far.

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