Wednesday, August 19, 2009

emailed wisdom

An email from a reader I'll call LM:


I just discovered your blog tonight and wanted to extend my sympathies to you, your family and your mom for what you are all going through with your mom's GBM.

I can relate as my father was diagnosed with GBM in April 2008 after surgery at Inova Fairfax Hospital following a seizure earlier that month. We live in northern Va. as well.

My father received 6 weeks of Temodar and radiation (at Fairfax Hospital) following his surgery, but shortly after that I elected to take him to the Preston Robert Tisch Brain Tumor Center at Duke Univ. because I was impressed by Henry Friedman's approach to treating this very difficult type of cancer. Dr. Henry Friedman and Dr. Fine do not see eye to eye on how best to treat GBM. Dr. Fine is much more conservative than is Dr. Friedman. Nevertheless, they are both excellent neuro-oncologists. And even though I enrolled my father as a patient at Duke more than a year ago, we still haven't seen Dr. Friedman as a patient yet. He is the architect of the brain tumor center there, but is assisted by an excellent team of doctors, PAs and nurses at Duke all committed to helping countless brain tumor patients who travel to Durham for help. They know us well at Duke.

At any rate, my point is not to to try to sell you on Duke. What I wanted to let you know is that Avastin is now FDA approved for people with recurrent GBM (which I think is how your mom would be categorized). So you don't need to get it via a clinical trial at NIH anymore. My father has received it since October at Duke off protocol and is now receiving it at the Lombardi Cancer Center at Georgetown. We've been fortunate in that it has been fairly effective at keeping my father's cancer in check even though he has suffered severe nosebleeds (a side effect which afflicts about 10% of Avastin users) and has not been able to receive the drug as often as we'd like.

Off protocol (i.e., outside of a clinical trial) it is given every 2 weeks intravenously and the normal dose for brain tumor patients is 10mg/kg. Also, they like to couple Avastin with other drugs. My father has received Irinotecan (CPT-11) and now takes a high dose of Accutane along with a low dose of Temodar each day.

Avastin has proven much more effective than Temodar for my father. As a matter of fact, he's been on Avastin for longer than surgery, radiation and Temodar combined. As you know, it is not effective for all GBM patients, but is for some. Apparently, GBM tumors with a high water content are more vulnerable to Avastin (something trained eyes can see via an MRI). I don't think my father would still be alive were it not for Avastin.

Anyway, so just keep in mind that if your mother does NOT qualify for a clinical trial at NIH with Dr. Fine, she can still get Avastin elsewhere off protocol and insurance should cover it because of the recent FDA approval for Avastin to be used on patients with recurrent GBM.

GBM is a rough diagnosis and my thoughts and prayers are with your mom, you and your entire family.

Eventually, I know that Avastin will cease keeping my father's GBM in check. His last 2 MRIs have shown small amounts of progression. When we reach that point, I will try once more to enroll him in a clinical trial for immunotherapy. Thus far, I have not had much luck getting him into any trials. For one reason or another, he has been deemed ineligible for every trial I have tried to get him into and that has been very frustrating. Just do your best and savor each day you still have with your mom. I treasure each and every day my father is still alive. And while we've been fortunate with the Avastin, he has definitely struggled during the past 16 months both physically and cognitively (not to mention the seizures).

BTW, my sisters and I all graduated from Bishop O'Connell HS. We were there in the 1980s and graduated in '85, '87 and '88 (I am in the middle).

Also, my father and I traveled to M.D. Anderson in February 2009 to be considered for a clinical trial there. We met with Dr. Conrad and, while [my father] was ultimately deemed ineligible for the trial, we were very impressed by the place and Dr. Conrad. If you develop cancer of any type and live in or near Houston, Tex., you are fortunate.

Best of luck to you and your mom. I hope Dr. Fine and NIH have a clinical trial that your mom is a good candidate for and which helps her tremendously. If you have any additional questions for me, I'll be happy to try and answer them. Keep fighting the good fight on your mother's behalf. I'm sure she appreciates all you do for her more than she could ever express.


I wrote the following reply:

Thank you for an informative email, L. Duke has come up at least twice in conversations with doctors at Fairfax. It might be a place for us to consider. At this point, Fairfax is ready to write Mom off.

We're aware of Avastin's recent FDA approval for use [with] recurrent GBM, and hope to take advantage of this, assuming that Mom will actually respond to the drug (you probably saw my link to the July 31 article about the UCLA study re: predicting which patients will respond to Avastin therapy).

Dr. Tonnesen at Fairfax doesn't think that Avastin would offer Mom more than a few extra weeks, but when I look back over the past few months, his intuitions about Mom seem to have been wrong at every turn; he's been basing his remarks more on what the charts and stats say, and less on what's actually happening to Mom. Second-line therapy of some sort is worth a shot, in my opinion. And hey, even if the treatment gives Mom only a few extra weeks, that's still valuable to us.

I'm very sorry to learn that you're going through your own GBM ordeal with your father. You have my deepest sympathy, and I wish you and your family well as you pass through this crucible.



LM's reply:


FYI: My father received his 6 weeks of radiation at Fairfax Hospital under the direction of one of Dr. Tonnesen's colleagues (Dr. XXXX). After I told one of his nurses that we were [going] to become patients at Duke, Dr. XXXX actively tried to dissuade my father from going there almost as if he was afraid of losing him as a patient (like he was a customer in an auto dealer). In addition, my father's local neurosurgeon (Dr. YYYY) said it wasn't worth it to travel either.

When I told the surgeon I wanted to throw everything at this cancer I could (including the kitchen sink), he looked at me like I was ignorant. I don't know what either doctor would have proposed when the cancer starting growing again, but I'm glad I never had to find out. They were both wrong.

Sadly, I think many of these doctors secretly dislike the prestigious cancer centers because they lose a lot of patients to them. That is money out of their pockets. So they dissuade good people from seeking them out. Ultimately, you have to do what is best for your mom. These doctors are often wrong and when they have nothing more to offer your mom besides "standard" treatment, their arsenal of weapons against something like GBM is limited. NIH has a lot of clinical [trials], but places like Duke and M.D. Anderson have even more, I think. I chose Duke because it was within driving distance. Plus, if you don't qualify for a clinical trial at NIH, you can't be a patient there. They don't treat patients off protocol.

You should go to a place like NIH or Duke that has more weapons. I wish I had taken my father to [a] different institution for his surgery. He might have been eligible for a DCVax-Brain clinical trial had I known of it back then. Immunotherapy is the best weapon against GBM if you can find a [clinical] trial your mom is eligible for.

Just remember that you have to be your own advocate. The doctors at Fairfax Hospital have limited experience with GBM patients as compared with Dr. Fine or Duke. I lost a lot of respect for my father's original doctors when they sought to dissuade me from taking him elsewhere for better treatment. Thankfully, I listened to my gut and not to them.

Good luck,


Yes, we certainly know about the "be your own advocate" part. Good intentions abound in the hospital bureaucracy, but the bureaucracy itself often prevents motion when motion is needed. Its Byzantine complexity also allows too much human error to creep into the mix, something we discovered time and again as we dealt with mistake-ridden hospital reports about Mom's surgeries and other procedures, problems with nurses who didn't read charts carefully, and even doctors who didn't have their facts straight about Mom. While the overall level of care Mom has received has been very good, the mere fact that mistakes happen so frequently is cause for concern.

Thanks for your emails.


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