Diana,
Your message is a powerful one especially about having all the facts before jumping into a course of treatment and later regrets. I don't know where your husband was treated and I don't know all the facts of his case or your personal/financial situation but I do have experience with GBM and Avastin and I would like to add some information about what my husband's experience was. I also want to say that you should try and not second guess yourself. You did the best you could and trusted the doctors you had. If anything your frustrations and disappointments are caused by the inefficiencies, shortcomings and poor coordination of the medical system in the United States.
My husband was diagnosed with a multifocal GBM which had tumors in every lobe of his brain's left side on July 18, 2008. The local neurosurgeon in Reno Nevada suggested several things to me that night. 1) standard of care (attempt to debulk/large biopsy, wait for healing 2-3 weeks, radiation for 6 weeks and low dose Temodar, followed by high dose Temodar) 2) do nothing (given the size and aggressiveness of the tumor why spend his last few weeks having surgery, radiation and chemo when what ever time it gains him will be spent being sick, sleeping and uncomfortable.) of course palliative measure would be given. or 3) go to a tertiary care center that does a lot of these and participates in clinical trials. Time of course was of the essence and this doctor counseled us about the options near and far away and because someone answered a phone on a Saturday my husband ended up with Dr. Keith Black and his team at Cedars-Sinai in LA.
The big differences between what they did and the standard of care is they pushed the envelope. Fred started radiation and Temodar within 1 week of surgery. (to wait the standard 2-4 weeks was risking death because of the aggressiveness of the tumor.) He also started an every 2 week regimen of Avastin at the same time. The Avastin probably helped control the growth of the tumor but it also acted as a super steroid and controlled the swelling in his brain thus allowing him to take a minimal amount of decadron after weaning from the post surgery highs.
What isn't said in all this is the Avastin even after all appeals and all options considered was not covered by our insurance. Cancer treatment centers affiliated with hospitals screw self pay individuals and I am on the hook for a lot of money. In fact the cancer center at Cedars would not provide the first infusion unless I made a deposit of $138,000. Avastin is not approved by the FDA for GBM as a primary treatment. It is only approved as a monotherapy (by itself not combined with anything) for recurrence. This approval only came in May 2009. Thus, most insurance companies will not pay for it without a fight though Medicare will. (A clinical trial was not an option because Fred's neurological status was so poor and he did not qualify plus most require the 3-4 week wait between surgery and starting Avastin.)
Fred continued with every 2 week Avastin and high dose Temodar until the end of July 2009 when a recurrence was detected. He tried a clinical trial of Axiza but was failing too fast with the tumor galloping along in both sides of his brain. Fred passed at a palliative care hospital in New York near his grandson September 30, 2009.
Fred had a good time during his stable period. There were issues between us at times and they were some of the loneliest times I have spent in my life but I don't regret it. We traveled to Cedars every 6-8 weeks for MRI's and he had the Avastin at a local cancer treatment center near Reno that charged less than Cedars but still a lot. I found out after months that there were infusion pharmacies that charged a lot less than any cancer center and would do the infusion for less than a third the cost. (I am fighting the hospitals using the infusion pharmacy cost. I am really angry about this whole rip off the patient whose family can afford it and is desperate attitude of the hospitals.) Our insurance has been great about everything else and I can afford the treatment I gave Fred (not just Avastin but travel to LA and aides in the beginning, etc.) even though it will impact my future and I know I am lucky to have these resources.
Was this the best way to treat Fred's tumor? I don't know. I think so. I saw others that Cedars failed (or couldn't help.) Could other treatments done as good a job, who knows. The stars were aligned for Fred that day in July 2008 when the Reno doctor gave me options and spent time with me and got Fred to a place that kept him alive for the average. Should more information be available for all and a system of getting patients to tertiary care centers for rare cancers such as GBM be put in place? You bet. We the families should not be second guessing the treatment choices we make for our loved ones but the doctors should be making sure they know the options and get the treatment available if humanly possible. Doctors should know what they do not know and admit it and find out who knows and how to get a patient the proper help.
One incident stands out in my mind that illustrates the craziness of our medical system. In July 2009, Fred had a grand mal seizure that really signaled the tumor's starting to grow. He went to the emergency room in Reno again and the doctor there contacted Fred's NO at Cedars who requested an MRI along with a CAT scan and an adjustment in Fred's seizure meds. This is the No who had devised the treatment scenario who knew Fred and me really well and walked the ER doc through everything. On the way to the restroom in the ER, I overheard the ER doc telling the hospitalist or neurologist or pharmacist that the CAT scan showed no change from the prior CAT scan that they had and they weren't going to do an MRI even though the "hotshot" NO in LA wanted one. At the time I was relieved that there was no change from the prior CAT scan. Later that night I realized that the CAT scan was from a year earlier when Fred had a great deal of edema which he did not have at his prior MRI in June. So there really was a change. Fred had the MRI a few days later after discharge and ultimately when read at Cedars progression was diagnosed. Three weeks after that the tumor had grown 25%. Did delaying the MRI cost or shorten Fred's life? Probably not.
This is a cancer with a horrible prognosis. All most of us want is to know the truth and try and provide the best for our loved one. Its sad that we have to be doctors too.
Best to all of you,
Love,
JMB