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astrocytoma grade 3--treatment not working--Has anyone tried the clinical trial route?

wcbc11
Posts: 1
Joined: Sep 2010

My husband was diagnosed with astrocytoma Grade 3 this past February 2010.

The tumor is located right in the middle of his brain--the corpus collusum. Because of the location, the surgeon was not able to remove the tumor. He had the regular treatmet of Temador pills and radiation for 6 weeks. After the checkup with an MRI, they found that the tumor was the same size but it had a small "hot" spot. They increased the dose of Temador by quite a bit, and he had the pills for 5 days and was off for 23.

He was extremely sick on this round of chemo. He did this for two months and had another MRI. This one showed that the cancer had spread. They stopped all treatment because it was not working, and suggested that we try to get into a clinical trial. We are meeting with a clinical trial doctor this Wednesday. Our treatment is at MD Anderson.

Has anyone else been through this and could give us some pointers? I have a list of questions I found online to ask the clinical trial doctor, but it would be great to chat with someone who has gone through this. Please contact us and let us know what to expect.

It has been a roller coaster ride of doctors, treatments, and a new normal for our family--a lot of changes, emotions, and re-evaluating. We have a super support system from church and family and God has been blessing us abundantly.

Thank you,
Debbie

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

Hi Debbie, I'm Debbie, too ;)

Just so you're aware, the trial I was in was for a lung cancer drug, but I don't see that it makes a difference...

I started out with the standard treatment for lung cancer - Cisplatin and Etoposide with concurrent radiation, then went on to Taxotere, and before I had a chance to get comfortable with it my oncologist suggested a clinical trial they were enrolling in.
There were a lot of papers to sign and a lot of papers to be read, detailing the trial treatment, describing the drug and it's potential side effects. There were specific tests that the drug company wanted me to take before each treatment and at key points throughout treatment - I had to read and sign each page.

The trial drug company should pay for everything, the lab tests and blood work and the drug itself. Mine even paid for a taxi home occasionally, when I didn't have a ride. Well, the oncology office paid, and were reimbursed. ;-)

The drug company took very good care of me, I think I was pretty much their star patient, I had success with the drug for a long time after everyone else had dropped out for various reasons (one of the problems with this drug was it's cardiac effects - in the latter part of the trial I had to have Ecg's and MUGAS very often.). The only side effect I had from this drug was a slight numbness around my mouth on treatment day.

It worked for me, kept me stable - unfortunately it was not a drug that crosses the brain/blood barrier and I developed brain mets. That was the end of the trial experience for me. However, it paved the way for me to eventually take Tarceva, even tho I don't have the EGFR mutation, because the trial drug was also a tyrosine kinase inhibitor like Tarceva. And Tarceva put me in remission ;-)

You should be able to back out at anytime if you feel you need to. Read the paperwork and ask questions.

I personally feel that clinical trials are the way to go - I have my eye on a couple that interest me should Tarceva fail me.

I wish you the best of luck on this trip - and what a long, strange one it is ;)

stayingcalm

sue Siwek
Posts: 281
Joined: Jun 2009

10 yrs ago my husband was diagnosed with aa3 inoperable brain cancer. besides radiation and stereo tactic radiation he was put on temodar. it didn't work for him. he then went on a clinical trial. it shrunk the tumor but had side effects and after a few months he got off of it. i believe it bought him time until another drug was approved for use. he is still with us. he is not perfect but he enjoys sudoku, listening to books on his kindle and solitair on his ipad. he is cancer free at this time but, if we were to have to go on a clinical trial again we would try to get on one that is on its 2nd or preferable 3rd. trial because it will have some history of working. the one my husband was on was the 1st. trial. as you know with a brain tumor there can be all kinds of bumps in the road. i should preface all of my coments with telling you that my husband had primary brain cancer which is quite a different thing from secondary brain cancer. my husband also has parkinson's and so his quality of life is different than you husbands will be if the trial is successful. until the parkinson's attacked him he was able to walk, play golf and enjoy winters in florida even with the effects of the chemo and the tumor. so, it is possible to beat this thing. stay positive.

Fusionera
Posts: 10
Joined: Oct 2009

Hi Debbie,

I am a clinical trial veteran and a 15-year survivor of a Grade III Oligoastrocytoma. I was one of the original guinea pigs on the Temodar (Temozolomide) trial from 1996-1997. I then went on to get my master's degreee in business (after 2 brain surgeries, radiation and several types of chemo). However, in 2005, the day I bought my first home, I learned that my tumor had returned, albeit very small. My neuro-oncologist said it appeared to have just started up again. I went on a clinical trial of a drug called Poly-ICLC, an immune response booster which did not work. By Christmas of 2005, I had not one but TWO tumors in the same tumor cavity where my right temporal lobe had once been. I was put back on Temodar to stabilize the tumors, which helped, and then put on a clinical trial of an experimental drug, SAHA, plus Temodar. I am lucky I respond well to Temodar, as it sounds that your husband has not. :-(

I tell you all of this because I have been on several clinical trials. My advice is to review the trial documents carefully before agreeing to anything, to ask about any preliminary results if they are available, and to discuss how the drug can affect quality of life. I don't know if Avastin is still in trial but you might ask about the availability of it in your area. I hope this helps.

Regards,
Johanna

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