Astrocytoma Grade III Survivor Here To Help

maggie65

Thank you for sharing your experience on AA3 brain tumor

I am a wife a diagnosed husband he was diagnosed the end of October 2012 last year we are in need of advice, opinion and information of this inoperable brain tumor at age 45 my husband was diagnosed taking Temodar pills for Chemo therapy. He began Radiation and Chemo Therapy December 4th 2012 ending his radition in January 16 this year continuing the Chemo regiments of Temodar upgraded from 150mg 45 days to 300mg 5 days 23 days off to 400mg now 5 days 23 days off. Alot of medications with it  has its affects his weak now and unable to walk he went from a cane, to a walker, to a wheelchair and bed confined his currently on Dexamethasone pills form of Steriods for swelling of the brain and on Lovenox Enoxaparin injections for blood clogs and blood filter surgery that was done to his right groin and on Novolog and Lantus insuline injections due to his sugar high glugose due to steriods alot is going on. Please contact us we lived in Glendale Queens, New York but had to relocate to Saten Island, New York due to no elevator or ADA bathroom equiped having spiral staircases and our current apartment has elevator ADA bathroom but can not occupy all the medical equipement provided due to being a studio i don't know whats worst. But I refuse to put my husband in a nursing home and almost was tricked into doing so when we were convince it would be a rehab for his physical therapy and it wasn't so although its difficult we are fighting this brain tumor together but need any insight on this brain tumor illness.  

elizhooper

staplegun said:

Ben Williams

Sharing a liink with you - stumbled across two weeks ago

http://www.virtualtrials.com/williams.cfm

Diagnosed Astrocytoma Gr2 - 07/2005. MRI/surgery (biopsy only)/radiation.  01/2013 Resection surgery dx now as Oligodendroglioma versus Astro. Please go to website - Mr Williams will email you back and his book is an eye opener.

Virtual trials

Hi Ben - thanks for sharing the link on AA.  I am new to this site,, newly diagnosed also.  I'm going to be treated at Johns Hopkins in Baltimore, MD for my Anaplastic Astrocytoma Grade 3

nauman_shah

glioma in the brain stem

My cousin was diagnosed with Grade 3 Astrocytoma in the Brain Stem 5 months ago. He received his treamtent of radiation and chemotheraphy from Cornell Hospital, but nothing has changed. They took him out of the hospital and put him in a rehab center. But the rehab center is doing nothing to treat the cancer. What do you recommened from your personal experience? 

Thank you for your help in these difficult times.

veyseljohn

Anaplastic Asytrocytoma Grade III

Hello all. My aunt was diagnosed with Anaplastic Astrocytoma nearly 4 years ago (October 2008). She first had a surgery where a part of the tumor was removed (still leaving nearly 30% left). After that, she had radiotherapy for quite some time. In may 2011 the tumor started to grow a bit and we were very scared of this, although her clinical condition remained normal (besides the headache she had all the time). She had Temodar (temozolomide) starting at December 2011. Nearly 10 months ago they stopped the temodar and waited for the MRI scan which still showed little increase. Now they gave her 2 cycles of Lomustine and that had a fatal effect. She is lying in bed now and she is having difficulties while talking. She is not able to walk and/or sit. She needs 24 hours of care. I really dont know if there is something to do in this stage, is she having her last time? 

 

Marksueyoung

18 month survivor.

First time on here. I started having seizures in Dec. 2011, was diagnosed with an Astrocytoma Stage 3. Surgery reduced it by 96%. Then Gamma Knife, and then Avastin and Temedor. I feel great today. I will be going in for my 6 month MRI, in early June. I will keep everyone updated. 

By the way, it does get better. I feel it really depends on your doctor. My first surgeon told me that Gamma Knife was out of the question. I looked for a second opinion. My second one performed both the surgery and the Gamma Knife. The tumor has not returned as of yet.

Any questions that you may have, please email me at marksueyoung@yahoo.com.

My name is Mark Young

 

 

elizhooper

Marksueyoung said:

18 month survivor.

First time on here. I started having seizures in Dec. 2011, was diagnosed with an Astrocytoma Stage 3. Surgery reduced it by 96%. Then Gamma Knife, and then Avastin and Temedor. I feel great today. I will be going in for my 6 month MRI, in early June. I will keep everyone updated. 

By the way, it does get better. I feel it really depends on your doctor. My first surgeon told me that Gamma Knife was out of the question. I looked for a second opinion. My second one performed both the surgery and the Gamma Knife. The tumor has not returned as of yet.

Any questions that you may have, please email me at marksueyoung@yahoo.com.

My name is Mark Young

 

 

new to this cancer network

I was diagnosed AA3/4 on March 19, 2013.  Complications arose and had to undergo lung surgery (old fashioned way with tubes and all) and will start chemo/radiation next week.  It's located in the center climbing over the left side effecting my strength to the right side.  I am going to Johns Hopkins Weinberg Cancer Center for treatments.  I'm a little anxious to begin and wonder how my body will react to the temodar and radiation.  i am hopeful that this will stop growing and we can get it to shrink so a surgeon can take it out.  A surgeon said he could possibly take 70% of it but it would be risky.  They suggested I start with chemo/radiation 33 days (5 days a week radiation, 7 days a week temodar).  I've applied to the Hope Lodge for housing in case I can't make the 60+ miles each way to radiation.  If anyone is in the same boat as me, I'd love to follow our cancer together. 

Thanks and always praying that we can all see a miracle.

 

Marksueyoung

elizhooper said:

new to this cancer network

I was diagnosed AA3/4 on March 19, 2013.  Complications arose and had to undergo lung surgery (old fashioned way with tubes and all) and will start chemo/radiation next week.  It's located in the center climbing over the left side effecting my strength to the right side.  I am going to Johns Hopkins Weinberg Cancer Center for treatments.  I'm a little anxious to begin and wonder how my body will react to the temodar and radiation.  i am hopeful that this will stop growing and we can get it to shrink so a surgeon can take it out.  A surgeon said he could possibly take 70% of it but it would be risky.  They suggested I start with chemo/radiation 33 days (5 days a week radiation, 7 days a week temodar).  I've applied to the Hope Lodge for housing in case I can't make the 60+ miles each way to radiation.  If anyone is in the same boat as me, I'd love to follow our cancer together. 

Thanks and always praying that we can all see a miracle.

 

Elizhopper, 
What about Gamma

Elizhopper, 

What about Gamma Knife for the remaining 30%?

Mark Young

elizhooper

Marksueyoung said:

Elizhopper, 
What about Gamma

Elizhopper, 

What about Gamma Knife for the remaining 30%?

Mark Young

surgeries so far

I had to do a brain biopsy, then a liver biopsy, then a lung surgery all in the past 2 months - infection was a new thread, so had to grow it to know how to treat it at infection control.  they want to start the chemo/radiation to slow the growth.  if we opted for the surgery to remove 70% we would lose even more time for recovery to begin treatments.  i feel like it's just been one blow after another in such a short period of time. 

 

a09082038828

Marksueyoung said:

18 month survivor.

First time on here. I started having seizures in Dec. 2011, was diagnosed with an Astrocytoma Stage 3. Surgery reduced it by 96%. Then Gamma Knife, and then Avastin and Temedor. I feel great today. I will be going in for my 6 month MRI, in early June. I will keep everyone updated. 

By the way, it does get better. I feel it really depends on your doctor. My first surgeon told me that Gamma Knife was out of the question. I looked for a second opinion. My second one performed both the surgery and the Gamma Knife. The tumor has not returned as of yet.

Any questions that you may have, please email me at marksueyoung@yahoo.com.

My name is Mark Young

 

 

Mom's AA3

 My mother was diagnosed with grade 3 astrocytoma. I'm from the Philippines. I've been reading here a lot after my mom's surgery. I Love my mom so much. It's really inspiring to know that there are many survivors that beat the doctor's timeline of 2-5 years. her tumor was removed last april. God Bless us all ! i want my mom to be treated in the United States but we don't have enough money to go there. Thank You and God Bless. !