New here!

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Glitzy1294 Glitzy1294
(Inactive)

New here!

by Glitzy1294 on Tue Jan 29, 2013 08:01 PM

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I found this forum from another forum that I regularly check.  My husband, 33, was diagnosed with Anaplastic Astrocytoma in July 2012.  He had a resection that removed 70% of the tumor.  He was in and out of the hospital for a bit.  At the time, our son was 4 months old.  He is in the military and we were stationed thousands of miles away from our family.  Luckily, they let us go home so that my husband could do radiation and chemo and we could stay with my family.  He has don 2 rounds of the higher Temodar.  He just had an MRI yesterday and we're waiting to see if there is anything new happening.  We ended up coming back to where we were stationed since we could do the chemo from home.  I think being back in familiar surroundins has helped.  We are blessed that the military is taking care of us and giving us time to see if his condition stabalizes.  Not only was I thrust into a new role of a parent, I'm now in this new role of caregiver.  We have been married for 4 years.  I hope that I have been given this life because I am strong enough to handle it.  But like you all know, it's such a roller coaster of emotions and not being in control of anything, this disease or what the military will decide to do with him, is extremely challenging.

So thankful to find this forum and all the information and experiences that you all provide.

They just put him on Keppra and are talking about adding in Avastin during his next round of chemo.  The biggest change is that he is barely eating.  The doctors we had before, weren't giving us enough information about what is going on.  Our doctor was treating his tumor as a GBM, which confused me because they diagnosed it as an anaplastic astrocytoma.  Hopful that this new doctor will be able to piece together more of the puzzle for us. 

RE: New here!

by dmercer on Wed Jan 30, 2013 07:21 PM

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So sorry you have had to join us, but welcome. Yes, anaplastic Astrocytoma is treated like GBM from everything I've seen. The best thing that helped my nausea and what helped my appitite was jalepenos. A friend told me about them and sure enough I found relief with them. I would eat them whenever I could.

Grace and Peace,

Danny

RE: New here!

by GerardT on Wed Jan 30, 2013 08:27 PM

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On Jan 29, 2013 8:01 PM Glitzy1294 wrote:

I found this forum from another forum that I regularly check.  My husband, 33, was diagnosed with Anaplastic Astrocytoma in July 2012.  He had a resection that removed 70% of the tumor.  He was in and out of the hospital for a bit.  At the time, our son was 4 months old.  He is in the military and we were stationed thousands of miles away from our family.  Luckily, they let us go home so that my husband could do radiation and chemo and we could stay with my family.  He has don 2 rounds of the higher Temodar.  He just had an MRI yesterday and we're waiting to see if there is anything new happening.  We ended up coming back to where we were stationed since we could do the chemo from home.  I think being back in familiar surroundins has helped.  We are blessed that the military is taking care of us and giving us time to see if his condition stabalizes.  Not only was I thrust into a new role of a parent, I'm now in this new role of caregiver.  We have been married for 4 years.  I hope that I have been given this life because I am strong enough to handle it.  But like you all know, it's such a roller coaster of emotions and not being in control of anything, this disease or what the military will decide to do with him, is extremely challenging.

So thankful to find this forum and all the information and experiences that you all provide.

They just put him on Keppra and are talking about adding in Avastin during his next round of chemo.  The biggest change is that he is barely eating.  The doctors we had before, weren't giving us enough information about what is going on.  Our doctor was treating his tumor as a GBM, which confused me because they diagnosed it as an anaplastic astrocytoma.  Hopful that this new doctor will be able to piece together more of the puzzle for us. 

Greetings: First, I salute your husband for his service and you as well for being his strength. My wife is also on Keppra and has been taking it since December 24th. I heard Avastin is one of the most promising chemo drugs now available. Hang in there. Go to The National Cancer Institute or American Brain Tumor Association. I believe That's the right name to study the various brain cancers so that you are better informed. Ask the doctor to clarify what is it. My wife, I'm told had a gliobastoma, but I also heard astrocyte too early on. For us, non-medical people, it can be confusing. Again, ask your oncologist. It is important to know exactly what you and your husbsnd are up against. Read up on Avastin. It is a very effective drug that Fights the cells aggressively. Once you read up on it, you will feel more optimistic and hopeful. He is a young man and I read recently they are expecting newer and even more effective drugs within a few years. There is hope and faith and love and you certainly have shown your husband you have all three. Gerard

RE: New here!

by jpearson472 on Thu Jan 31, 2013 05:03 PM

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Hi there, Please thank your husband for his service in the military.  AA3 and GBM 4 are usually treated the same way.  I am a little surprised they want to use avastin already.  Usually avastin is used after the first regrowty is he able to see a Nerooncologist or is he stuck with just an oncoloist.

best of luck

jp

Glitzy1294 Glitzy1294
(Inactive)

RE: New here!

by Glitzy1294 on Thu Jan 31, 2013 07:31 PM

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We were seeing a neuro oncologist when we were staying with my parents but we moved back to where we are stationed and the only one in town is an oncologist.  We are going today to find out results of the latest MRI, hopefully the tumor will have responded to the higher dosage of temodar.  We live in a pretty small town where the options are limited but like you all have suggested, I try to do my homework to keep up with what they are suggesting.  We really like this doctor, he's honestly been the only person we've seen in the past 6 months that has been really upfront with us.

RE: New here!

by ourVictory on Fri Feb 01, 2013 03:04 PM

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Barely eating was one of my stages two, 3 weeks  after my first surgery. immediately after surgery and between the second and fourth week after surgery I would be inapetent maybe   primarily because of my depression; before, during and  after the 2-4 week and up to now 28 mos. later, and 2 surgeries  I've been eating great...Unfortunately I also cursed a lot to people around me but went out of that after a while. Docs told me the reason  was a combination of my condition and medications never done that before but no longer doing that which I regret...

RE: New here!

by Careg on Sun Feb 03, 2013 05:15 PM

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How much of the tumor did they get out? and was teh second surgery due to regrowth. Ive had trouble wanting to eat and I have been frustrated and impatient. Its only been one month sice my surgery and 12 days of the radiation and chemo...Plus the winter weather simply stinks... Im already worring how Im gonna get through next winters blues.

RE: New here!

by SarahGrey on Sun Feb 03, 2013 05:34 PM

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regarding the blues...  maybe ask your doc (even primary care doc) for an antidepressant?  my husband has been on paxil awhile, as the gbm caused him to have anxiety.  it helps...

also, it may sound funny, but maybe look into getting a 'sad' light?  we just got one and it does help a bit.  amazon sells them, i think ours was maybe $50?...  it's basically a bright light you put near you half hour a day and it mimicks sunlight and helps with seasonal blues and depression.

RE: New here!

by ourVictory on Tue May 21, 2013 02:03 PM

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GReat advice from our fellow new comrades. A Neuro=Oncologist should be your best option I went trough two oncologists that do not pace up witha NO. I went trough deppresion=thinking about my mom and children and doing my best to be with them as much as possible, and staring at my food- I ate regardless being inapetent knowing and thinking that my body needed food. I now and then started eating even more than before on some days. I now believe we need the extra weight because some chemos are given based on our weight and with a positive attitude, i DO CURSED AND STILL under irritable outbursts that hang around me sometimes among my ups an downs have been able to be here at 28 months and thinking no less than a 100yrs for all of us. Thank you! for staying behind your husband eventhough i have scared off my significant other with my rudeness.

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