MRI results are in. Not what we hoped for...

The small area of enhancement on my husband's previous MRIs has grown. Not a huge amount, but it is growing despite Temodar. His NO is going to have a conference next Thursday with the neurosurgeons, radiologists, etc to see what the next step will be.   

I hate this disease.  It has robbed us of so much. My husband was diagnosed last October... we had our 13th wedding anniversary while he was in the hospital.  Again, this anniversary is overshadowed by bad news and brain tumor treatment.   I'm devastated.

Hi,

I will keep you both in my prayers.  This disease is such a robber. It struck us in 2007 only 3 years into our new marriage, but I'm sure that no time is ever right for this.  Please take comfort in knowing that God is with you no matter what.  You're not alone. And remember...every day is a gift...we of all people are so very aware of that.

Here for you,

jan

 

On 10/9/2009 onemorehour wrote:

The small area of enhancement on my husband's previous MRIs has grown. Not a huge amount, but it is growing despite Temodar. His NO is going to have a conference next Thursday with the neurosurgeons, radiologists, etc to see what the next step will be.   

I hate this disease.  It has robbed us of so much. My husband was diagnosed last October... we had our 13th wedding anniversary while he was in the hospital.  Again, this anniversary is overshadowed by bad news and brain tumor treatment.   I'm devastated.

 

I'm so sorry to hear that.  I'll keep you in my prayers.  My sister age 54 GBM dx 7/09 went through standard treatments.  Just found out that her MRI has a suspicious area, we are waiting for final results.  I hope that it's just necrosis.  The NO said that she'll probably need another resection and then since it may of come back, Avastin.  This is such a horrible cancer, I hope they find the cure!  

I had my sons orignal tumor profiled at Duke it said he was 40% resistant to temador ..I spoke to a Duke Dr who suggested PARP-ABT888 to be added with temador to offset the resistance.. You didnt mention Avastin was your husband on that at all? We are looking at more chemo and sugery ourselves, reaccurace and growth 1 1/2cm in size.

Best to you both!! Diana

My son Chris dx gbm 11/08

Hello onemorehour,

I am sorry to hear about your husband's MRI results. Battling this monster takes so much out of the patient and their loved ones. You really live one day at a time.

Jay is 44, our 25th anniversary will be in December. His GBM was inoperable, he had SRS radiation and Temodar. I then took him to M.D. Anderson for a second opinion and he underwent one agressive treatment of CPT-11 and Avastin, that is their recommended treatment. He ended up in the hospital for 2 weeks getting blood and platelet transfusions. Everyone responds differently, the doctors said it was probably the CPT-11 that caused those problems. I have heard a lot of positive feedback about Avastin. There are other treatments available too so do not give up hope, keep fighting.

Please keep us posted. I will keep you in my thoughts and prayers, I pray for everyone fighting this cancer and hope for a cure!

Take care,

Lori

Dear OMH,

Soooooo discouraging. But here's how I'm coping with the same thing: I have read a few accounts from people who say, "Did the standard surgery, radiation, temodar, and had recurrence/growth at X months... went on CPT-11 (or Carboplatin, which Andy just started along with Avastin) and now X years later I am STILL HERE." That's what we hold onto.

If the chemo is too rough on a person, I'd think about Avastin alone. I read some research yesterday that said it's very close in effectiveness by itself, with almost NONE of the side-effects. So if quality of life matters, (hell yeah!) then Avastin alone might be a good option.

Sending love and hope,
Sarah

mom of Andy 27 dx gbm/pnet 1/09

Hi, no, he has not been on Avastin...yet.   He did 42 days of Temodar along with  30 IMRT radiation treatments, and then went into the CDX-110 clinical trial.  In the trial, he was getting monthly injections of the vaccine, and 360 mg of Temodar 5/23.   Now that he has progressed, I am almost certain that he will not be getting the injections anymore.   I think progression is progression, period, and it doesn't matter how slight. (I am not sure how much growth there is at this point, just that it's there.)    I had such hopes for this vaccine.  

Dr. Rosenfeld is going to meet with the team of neurosurgeons and radiologists, etc on Thursday to see what the next step will be.   The nurse said sometimes, when there is not a huge amount of progression,  the course of action is to do another MRI in a month and reassess.  We shall see.  I dread the word craniotomy...he had a stroke during his initial resection.  

It's going to be a long week, but I'm trying not to let it get in the way of things.  I'm taking my boys and husband somewhere special tomorrow and have lunch out with them.  I don't feel like it, just want to curl up into a ball and stay in bed.  But that's not a real option... We have to live in the moment. 

Praying for all of you, too, and thank you for the support.  

 

 

I'm so sorry.  Nothing I can say.  But, hope springs eternal in the human breast.  Right?  Enjoy your days and expect many more of them.

Donna L

I hate this @## disease.  I am sorry.  I do know how you feel. My Rob also recurrance and more treatment than another enhancement to check out on another MRI next week.  Rob is on Avastin biweekly, 5/23 temador and had 11 days stereotactic after this last recurrance.  I hate to hear this is happening to you.  I wish I had more comfort to offer but we must look forward with hope while staying and living this best moment, what a balancing act.  Hugs and prayers.

Donna wife of Rob, dx 12/08, recurrance 7/09 multifocal GBM

Dear Onemorehour,

God has given 13 wonderful years together. It is very stressful to deal with this "beast". This journey has no certainty. I encourage you to keep loving each other.... each and everyday. Everyday is a present from God! 

You are in my prayers!

Sheryl

Son 34 dx Mar 08 AA