Why Always Temador First?

My question is why do the doctors always start people on Temador first?  Temador didn't work for my husband.  Why don't they start with Avastin/CPT11?  My husband isn't able to take CPT11 because of complications.

Does anyone know?

Temodar is a chemo drug that was developed specifically for brain tumors.  I think it has been around for about ten years.  Avastin was developed for colorectal cancer.  Its use in treatment for brain cancer is called "off label" because it was not initially intended for that use.  Drs. can legally use it to treat brain CA but some insurance companies will not cover it because of its off label use.  Use of Avastin is becoming more common place, but my understanding is it is still somewhat experimental.  Drs. are still investigating the best way of using it.  Temodar is still considered the first line of defense in treating this horrible disease.  For most people it is well tolerated and preserves quality of life.  Unfortunately, it doesn't always work or it might work for a while and then stop working.  This is true of all the chemo drugs.  My husband has been on Temodar since Aug. of '07.  He had some tumor regression, but no miracles.  The upside has been he has tolerated it much better than most people do. I just recently read that the FDA is fast-tracking its approval as a "on label???" (I know that's not the right word, but hopefully you know what I mean) treatment for brain CA.

Jackiekay

Yes, Temodar is considered the "standard protocol" for brain cancer.  Once it was FDA approved, it became the first line of defense, and the other drugs being used at the time became the second line (I believe).  Avastin/CPT-11 is still in clinical trials for brain cancer so when used, it's considered 'off-label' and most insurance companies (but not all) will not pay for it unless it is being used as part of a clinical trial.

That said, it seems like it is now widely considered the 'second line of defense' even though it's still in trials.  If it does get approval for brain cancer it may very well become the 'standard protocol' with Temodar being the second-line.

My husband has been on Temodar since 8/07 and it's working so far.  Another case of everyone responds differently due the the variables of this awful tumor.

 

 

Another poster mentioned that its because Temodar (and usually radiation) is now the standard of care in treating GBM. I had 6 weeks of that last summer.

 

Doc switched me to Avastin when my neutropenia became too bad. Now I am on Avastin only (no CPT-11) every 2 weeks. However the side effects are getting worse and I don't know how much longer I can keep this up. Avastin sends my BP to 200/110 and that's with taking BP meds.

 

You have to find what works for you and ride it as long as you can. And then pray that your Doc has another trick up his sleeve to keep you alive a lil longer.

I count survival in months, and have been battling this since June 2007. I am still here and not going without a fight.

Jackie,

Keep fighting.

Have you appolied for the Stanford GBM vaccine trial?

Everyone should know about this. Google "Stanford GBM vaccine clinical trial". The university web page has the contact info.

 My brother finished radiation and has another 3 months on Temodar, dx'd 12/24/07.He lives in Australia and the National Health plan has not yet agreed to cover Avastin.  If you are in that boat (insurance-wise), you can contact Genentech directly (www.gene.com) and apply for reduced or no cost Avastin.

 Everyone knows about the Duke Avastin/CPT-11 clinical trials that are on-going, right?  Google, well you know.

Finally there is an electrode device called novocure that claims to treat recurrent GBM, so contact them as well.

G'luck all.  

 

 

 

 

Hi,                                                                                                                                                                                                                            I just read your message and want to say keep up the great attitude. I was diagnosed with GBM in 8/03. Have had surgery, Temodar, radiation, Gamma knife surgery and now am taking just Avastin in a clinical trial. I have been on Avastin since June 2006 and it worked wonders. I had a complete response.  No evidence of disease until I started to have protein in my urine and had to stop Avastin for 2 months. Tumor returned and protien became high normal and restarted treatment and tumor has shrunk and is now fading and hopefully next MRI will be clear. Last MRI , tumor only a 2-4 MM in size. The shrinkage started by the second treatment after 2 month hiatus. The only problem I have had is the protein and that can lead to kidney damage. I feel great and have not had any other problems while bein treated with Avastin. Keep up the great attitude. If I can answer any questions (for what my answer is worth) drop me a line.  Take care. Steve