Apr 14, 2011 - 2:36 am
Hi everyone, I am new here, and writing in regards to my mother who is a non-small cell lung cancer survivor (currently 53 yrs old) of 7 1/2 years, who, unfortunately, is battling with metastasized brain cancer at this point.
She was first diagnosed with 2 mets in Feb 2006, and went through a round of WBR, and a long period of chemo, which she had excellent results and the 2 mets all disappeared. Then, in January of 2010, she was diagnosed again of recurring tumor, by her left thalamus. She had Cyber Knife, and had the tumor in control. Then, in November 2010, the tumor started growing again. She went through Cyber Knife again, but this time it didn't do much to shrink the size of the tumor.
Now, her oncologist put her on Avastin with Irinotecan, as known as CPT-11/Camptosar. She had 2 of each, every other week, and the MRI showed a 30% decrease in the size of lesion. We were ecstatic. Long story short, we were not happy under the care of her first oncologist, Dr. W, so we went to Memorial Sloane Kettering for second opinion. They first weren't convinced of Avastin or Irinotecan, but after the result of the MRI, they approved Avastin, but still thought that Irinotecan didn't contribute much to it. We were convinced that Avastin was the main player in the treatment, so we went along and switched over to Dr. N at Memorial Sloane Kettering.
After 3 treatments of Avastin alone, my mom had another MRI. It didn't show any reduction of lesion size. I am worried - I'm afraid that Avastin alone might not be as effective as combination therapy with Irinotecan or other chemo drugs. I asked Dr. N, and he explained that that's usually the case with Avastin - you get dramatic results in the beginning, then it stabilizes at a plateau. Eventually, the tumor will start growing again, so Avastin just hold it at bay for some time - as for how long, it varies from patient to patient.
There is also this article that's a bit alarming -
Well, the question is then, is it better to do Avastin alone or combination therapy? Does anyone have any experiences with Avastin? I would love to hear some feedbacks from you guys here. Thank you so much!!
Btw, is anyone being treated at MSKCC or NY Presbyterian/Weill Cornell? I have to admit that, I was not impressed by the service and care at MSKCC. It was a disappointment, we had such high hopes coming to them. They were disorganized (which is surprising considering their reputation) - they could not find the MRI CDs that we gave them when we first came for consultation 4 months ago, and they couldn't find the medical records that we brought to them and was gonna charge us 75 cents per page for their medical records, which is just plain outrageous. The doctor told us to go to the front desk, the front desk told us to go to medical records, then medical records told us to go to radiology, then radiology told us to go back to the doctor. I mean, come on now, let's not play this game of "not of my responsibility". We were supposed to get a call today for the next appointment for chemo, and never heard from them. 3:30 chemo appointment didn't start until 5:30 yesterday, and it was the same story for all three times we've had chemo there. Not to mention a certain assistant of Dr. N, who started yelling at me for calling the office too many times for questions and prescriptions. Again, just flat outrageous.
It is frustrating - not only do we have to fight this damn disease, we have to fight with the hospital! It is just really disappointing. So now I'm considering a consultation at NY Presbyterian/Cornell. Could anyone share any experiences?
Again, thank you so much for reading this long post. I hope to hear from you fellow forum-ers here.