First Meeting done, more questions, how did you decide?

Betsydoglover said:

Why Avastin when no visible tumors?

Avastin blocks the protein that allows tumors to grow their own blood supplies.  So, if your scans show no tumors, that doesn't mean there isn't cancer developing that is still not detectable on scans.  So, the idea is that Avastin could keep those tumors from developing, by nipping the growth of that blood supply before it is a big issue.  On Avastin for 2 years.  After my lung resection in 2009, here I am.

 

Staqe 4 diagnosis  5/05

Sigmoid colectomy

Liver met

Xeloda/oxy/Avastin for 6 cycles

NED

Aggressive monitoring

Lung recurrence and VATS 4/2009 (Avastin only for 2 years)

 

Still NED

Thank you for the explanation. And so wonderful to see you are NED! Gives me hope.

K

LearningAsIGo said:

Here was my oncologists’ reply

Betsy, Thank you for sharing your similar journey-mine has started much the same way as I read your bio. You mention aggressive monitoring, but have you done anything else as far as lifestyle/nutrition/supplements changes? That is the question we are asking ourselves-why is the oncologist not giving me Avastin in addition to the CAPOX...when there’s clearly been metastasis to my omentum, even though surgeon cut it out at time of my sigmoid colectomy 3 weeks ago. The oncologist responded to a lengthy email and says “adding Avastin would not be wrong, but typically it’s reserved for patients with unresectable disease or grossly measurable disease who needs indefinite chemo…. It’s not a type of treatment where we would decide to give for 6 months and then stop.  I believe that the benefit for someone like you right now without grossly evident disease would not be significant.  If you end up having recurrent disease and grossly visible metastatic disease, then we can add avastin then.  Opinion might possibly differ between providers.  I just talked to a colleague of mine before answering your email, and she would do the same.”

 

So, a lot of varying opinions I guess. I‘m so glad to have each of you as a sounding board and wealth of knowledge. I can’t believe how quickly this has become a place I reach for with questions and reassurance. I’m getting more and more worried about the omentum mass-as this oncologist also said she’d like me to meet with a HIPEC surgeon just in case. No one has told me I have peritoneal metastasis, but that’s essentially what that is indicating, if I am researching correctly? I had no idea that I could or would be on chemo lifelong-that was another surprise to us at our first oncology meeting-depending on PET scans from here on out. Again, learning as I go about a disease I wish never touched my little family.

-B.

LAIG I had a similar presentation--a mass in cecum that spread to omentum, one lone encapsulated mass that was removed with clean margins, no positive nodes, but the cecal mass had spread to terminal ileum , had lap hemi-colectomy.  Had lung mets, originally thought to be only 2, one 1cm and one smaller. Only the large one lit up with PET.  I had my appendix rupture while visiting my daughter 2000 miles form home and had emergency surgery and treatment near DC. Oncologist there was somewhat aloof, mentioned HIPEC too, which will definitely give you pause for thought. But he also wanted me to have lung tumors resected --I dunno they certainly cause swirling thoughts. Anyway came back to AZ, our litle rural hospital is blessed to have a wonderful oncologist that is Mayo trained, I had a high resolution lung CT and the radiologist read it as probably tumors less than .5cm in other areas of both lungs. Wondering why the fany big city hospital didn't do that particular CT scan to start with...Anyway am on FOLFOX with Avastin--I think you have a valid question regarding why you aren't getting it? My CEA when disease first discovered was 25, went down to 1.7 post surgery, before chemo. Have not been retested yet. Do you also get other drugs with your chemo? I get Decadron, Emend, Benadryl, the Folfox, avastin , magensium and calcium evry 2 weeks.