stable and steady wins the race.

Another stable mri today.  My hs is exactly 1 yr out from dx and surgery. 10 rounds of Temodor, bi weekly avastin since 2/08. He has definitly benefited from the lastest treatments and surgey techniques and he's doing great.

Those of you who are second guessing treatment because you feel you or your loved may not have a quality life. I highly recommend giving it a try if your body is up to it. You can always stop treament. If you let gbm get ahead it will win sooner rather than later. 

My best to all of you in this race.

Keep the faith, Laura

On 12/1/2008 Laura412 wrote:

Another stable mri today.  My hs is exactly 1 yr out from dx and surgery. 10 rounds of Temodor, bi weekly avastin since 2/08. He has definitly benefited from the lastest treatments and surgey techniques and he's doing great.

Those of you who are second guessing treatment because you feel you or your loved may not have a quality life. I highly recommend giving it a try if your body is up to it. You can always stop treament. If you let gbm get ahead it will win sooner rather than later. 

My best to all of you in this race.

Keep the faith, Laura

 

 

Hi Laura

   I was dx in March of 2004 with a brain tumor in my left frontal lobe. I had surgery a week later at MGH Boston, the tumor was entirely removed.  A few days later they gave me the bad news the tumor was a GBM IV ( Glioblastoma multiforme) , not good, they gave me 12 to 18 months.  At the time my neuro-oncologist told us that with the standard treatment offered at the time, that was about the average survival rate.  He also told us that I could participate in one of six ongoing clinical trails.  With his help we chose to go with the cellebrex, which required that I take 800 mgs per day during and after the six week radiation treatment. During the next six months I had an MRI every two months which showed a small crescent shape area in the tumor bed that the Dr said was left over cancer cells.   In Nov 2004 the Doc put Temadar on the table as it had been approved for use to treat brain cancer.  I began taking it on a 5 day on 28 days off schedule for 24 months while still taking the cellebrex.   Over the next 6 to 12 months on the temadar the MRIs began to show the crescent area start to diminish until they were completely clear.  It has been about 4 ½ years and the MRI are 4 months apart and still showing all clear.

Stay Strong there is HOPE    John

John,

That is amazing. Thank you for sharing. There is always hope, thanks for reminding everyone.

God Bless,

Sue

Laura,

That is great news!  You both must be very relieved to have another clear scan.  What is the plan for his continuing treatment?

My husband just had an MRI last week, but we are still waiting for the results.  We are in the process of changing to the Cleveland Clinic.  The doctor needs copies of the old MRIs from the last hospital to compare them to the new scan.  I sent them but they are MIA in the US postal service or sitting on somebody's desk.  Hopefully, we will know something (positive) by the end of the week.  The neuro-onc mentioned possibly taking him off chemo and switching him to accutane or celebrex to maintain no growth.

Jackiekay

Jackie,

We are sticking with what we know, Temodar, Avastin along with Keppra. The neuro-oncologist didn't mention a change of course yet. Don's blood levels are still good.

He seems a little down lately. I think the treatments are beginning to take a toll on him. He also has frustrations with his ability to read and memory loss which is really affecting his work. The Dr. mentioned starting the disabilty process,but Don won't consider it. I think the decline in our finances would cause him a lot of anxiety. We will deal with that when the time comes.

Good to hear you guys are with Cleve. Clinic. Scott should get good care there. Hope things are going well for you.

Take Care, Laura