June 12, 2008 at 4:31 pm #20374lainyParticipant
Jeff…you are so right about the CC mets!!! This Cyber Knife doctor from yesterday, plus the transplant surgeon last week and our ONC said this is the same CC cancer but it is in a different place. Where the duodenum used to be. It is and always will be the same kind of cancer! It was contained in the bile duct valve to start with, they got all that and he was clean and green until this
and even though its been 2 1/2 years it is labeled the same. What can we say? Guess it knows a good resting place when it finds it! LainyJune 12, 2008 at 1:46 pm #20373jeffgMember
Hi Pauline… Wishing you and Anthony the best with this trial. Taxol also known as taxotere has been one of the chemos I just finished trying. I had some positive results with the liver tumor reducing in size but with my mets to lungs it was a toss up. Some slightly grew and some slightly shrunk. I had 8 cycles and over all felt it kept things at bay for some time. It’s so hard to tell some times. Like some one mentioned the other day it depends on the doctor deciefering the scans, the tumors could be a little smaller or larger. Hair loss was my biggest side effect from taxotere(Taxol). 3 times as I stoppped and started to do little trips I had planned. Avastin I don’t remember if I’ve tried before, I’d have to check the generic brand name. I also wanted to share that the mets to Anthony’s lungs is not considered lung cancer but CC mets to the lungs. My Onco had to re explain that to me again the other day when I was giving him a hard time about what I wanted to try next. Mets to any part of my body he said is still considered CC/bile duct cancer, not lung or bone,etc. So i replied we can keep on trying anything then right? He grinned and just said we’ll try what ever scientifically has merit. I said that’s all I wanted to hear. Then he reminded me that it is amazing and basically not heard of a cc patient surviving this long. I told him He needed to visit our web site as it is happening. He feels that combinational treatments have been showing promise. So, with all that said it sounds like the trial Anthony is going to have is combinational of different chemos which canbe of benefit as they work in unison with each other for better results. Lots of possibilities still exsist and seem to be popping up here and there in my opinion. I hope and pray for the best with Anthony’s trial and everyone else who is trying anything novel.
Jeff G.June 11, 2008 at 10:57 pm #1284paulineMember
My husband, Anthony, has been offered a place on a phase 1 trial of this drug in the UK at King’s College/Guys Hospital. The trial is of BIBW 2992 in combination with paclitaxel(taxol) and possibly also avastin. Does anyone have any experience or information about this drug? We have done a bit of research and there seem to have been some positive results with certain lung cancers. We feel it is probably worth a try but would be grateful for any input from members.
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