I need some good news

My name is Teri.  I am 42 and married w/4 kids.  Five years ago I was diagnosed with an inoperable, grade 2 astrocytoma in my thalamus.  I cannot have a biopsy due to it's location, but the docs are treating it as a malignant tumor.   I underwent Proton Radiation Therapy (in Indiana) 3 years ago because I wasn't comfortable w/my doctor's "watch and wait" approach.  I get MRIs every 3 months and my latest didn't go so well.  My doctor together with the Tumor Board Committee (at Cleveland Clinic) say the tumor appears to be growing and they think it's time to start chemo.  They are suggesting Temodar.  It would be a 4-week cycle of 5 days on, (400 mgs a day), nothing for the rest of the month, then blood work to see if I can start another round.  They want to do this for the next 1-2 years depending on how it goes.  I am headed back to Indiana next Friday to find out what went wrong w/the radiation and also plan on getting another opinion.  

Is there anyone out there that has a situation similar to mine?  Needless to say, I am scared, sick, nervous, mad. . .    

Hi Teri, what you describe sounds pretty standard.  I'm so darn sorry that you have to endure all this worry.  If it was astrocytoma and not operable, I'm not surprised that they just watched it, although I have to admit, it makes a person nervous to do nothing about a tumour in the head, right?  I'm glad the radiation was successful in  holding it at bay for a few years.  The treatment you mention as a plan now is quite standard, it does work in a lot of cases, my husband being one of them.  We are 2 1/2 years from diagnosis, although his began with the GBM 1V.  A second opiniion is never a bad idea, so if it makes you feel more confident, then go for it, but the temodar is tolerated well, it works for a lot of people, and it is possible to come back from a recurrence.  Lots of stuff to read on this site, from every type of tumour and all kinds of patients.  Please get ready to do battle wilth this monster, and know that sucess CAN be achieved.  Spend some time reading, go for all the posts about 'good news' and let us know how things are proceeding for you.

Donna L

On 10/9/2009 SecreTeri wrote:

My name is Teri.  I am 42 and married w/4 kids.  Five years ago I was diagnosed with an inoperable, grade 2 astrocytoma in my thalamus.  I cannot have a biopsy due to it's location, but the docs are treating it as a malignant tumor.   I underwent Proton Radiation Therapy (in Indiana) 3 years ago because I wasn't comfortable w/my doctor's "watch and wait" approach.  I get MRIs every 3 months and my latest didn't go so well.  My doctor together with the Tumor Board Committee (at Cleveland Clinic) say the tumor appears to be growing and they think it's time to start chemo.  They are suggesting Temodar.  It would be a 4-week cycle of 5 days on, (400 mgs a day), nothing for the rest of the month, then blood work to see if I can start another round.  They want to do this for the next 1-2 years depending on how it goes.  I am headed back to Indiana next Friday to find out what went wrong w/the radiation and also plan on getting another opinion.  

Is there anyone out there that has a situation similar to mine?  Needless to say, I am scared, sick, nervous, mad. . .    

 

Hi Teri,

My son too was diagnosed with a grade 3 astrcytoma May 2008. He did have a biopsy to confirm, inoperable, located in his left front temporal lobe. He too did 7 weeks of proton radiation along with temador. Same dose they want you to take. After the initial 7 weeks, he continued for 1 year with MRI's every 2 months. He is done with treatment, taking seizure meds and his next MRI is in 3 months. This is because the tumor is stable. If it is stable after 3 months they will let him go to 4 months. He was told this will continue until tumor is not stable. We don't even go there. He is being treated at Mass General.

The Cleveland Clinic has a great reputation, I am sure you are in good hands. I will tell you though that my daughter in law did speak with Dr Freidman at Duke, Senator Ted Kennedy's doc. She contacted him online. I certainly know what you are going through, if I can be of help please email me.

I do remember when my son was diagnosed it was said if it was stage 2, treatment would be different until the tumor changed, but since it was grade 3 he did the 1 year of chemo with radiation. I know it sounds very vague when they say treatment will be 1 or 2 years, but they really do not know how your body will accept treatment.

You and your family are in my prayers.

Patti

On 10/9/2009 patk1021 wrote:

 

On 10/9/2009 SecreTeri wrote:

My name is Teri.  I am 42 and married w/4 kids.  Five years ago I was diagnosed with an inoperable, grade 2 astrocytoma in my thalamus.  I cannot have a biopsy due to it's location, but the docs are treating it as a malignant tumor.   I underwent Proton Radiation Therapy (in Indiana) 3 years ago because I wasn't comfortable w/my doctor's "watch and wait" approach.  I get MRIs every 3 months and my latest didn't go so well.  My doctor together with the Tumor Board Committee (at Cleveland Clinic) say the tumor appears to be growing and they think it's time to start chemo.  They are suggesting Temodar.  It would be a 4-week cycle of 5 days on, (400 mgs a day), nothing for the rest of the month, then blood work to see if I can start another round.  They want to do this for the next 1-2 years depending on how it goes.  I am headed back to Indiana next Friday to find out what went wrong w/the radiation and also plan on getting another opinion.  

Is there anyone out there that has a situation similar to mine?  Needless to say, I am scared, sick, nervous, mad. . .    

 

 

Hi Teri,

My son too was diagnosed with a grade 3 astrcytoma May 2008. He did have a biopsy to confirm, inoperable, located in his left front temporal lobe. He too did 7 weeks of proton radiation along with temador. Same dose they want you to take. After the initial 7 weeks, he continued for 1 year with MRI's every 2 months. He is done with treatment, taking seizure meds and his next MRI is in 3 months. This is because the tumor is stable. If it is stable after 3 months they will let him go to 4 months. He was told this will continue until tumor is not stable. We don't even go there. He is being treated at Mass General.

The Cleveland Clinic has a great reputation, I am sure you are in good hands. I will tell you though that my daughter in law did speak with Dr Freidman at Duke, Senator Ted Kennedy's doc. She contacted him online. I certainly know what you are going through, if I can be of help please email me.

I do remember when my son was diagnosed it was said if it was stage 2, treatment would be different until the tumor changed, but since it was grade 3 he did the 1 year of chemo with radiation. I know it sounds very vague when they say treatment will be 1 or 2 years, but they really do not know how your body will accept treatment.

You and your family are in my prayers.

Patti

Dear Patti,

Thank you for writing back.  Any idea why the proton radiation didn't work? My husband and I both really thought proton radiation would do the trick.  We're shocked that it's only been 3 years and there is new growth.  We also contacted Dr. Friedman and he told me to send him my MRIs.  They are on their way to him as we speak.

You and your son are in my prayers.

On 10/9/2009 I love Gary wrote:

Hi Teri, what you describe sounds pretty standard.  I'm so darn sorry that you have to endure all this worry.  If it was astrocytoma and not operable, I'm not surprised that they just watched it, although I have to admit, it makes a person nervous to do nothing about a tumour in the head, right?  I'm glad the radiation was successful in  holding it at bay for a few years.  The treatment you mention as a plan now is quite standard, it does work in a lot of cases, my husband being one of them.  We are 2 1/2 years from diagnosis, although his began with the GBM 1V.  A second opiniion is never a bad idea, so if it makes you feel more confident, then go for it, but the temodar is tolerated well, it works for a lot of people, and it is possible to come back from a recurrence.  Lots of stuff to read on this site, from every type of tumour and all kinds of patients.  Please get ready to do battle wilth this monster, and know that sucess CAN be achieved.  Spend some time reading, go for all the posts about 'good news' and let us know how things are proceeding for you.

Donna L