Hi everyone...my name is Laura aka 'fighting girl' (lol)! I have been a lurker here for a bit and thought it was due time to intro myself and join the discussion. I am 49 and was diagnosed with cc in July 2012...in late June my hubby came home from work, looked at me and noticed that I looked yellow. That resulted in a trip to emerg, and a three week hospital stay.
After two ERCP procedures, ultasounds, a CT scan and an MRI, plus a liver biopsy, it was determined that the blockage in my bile duct was a tumour. It had likely been there for a bit as it has spread to make some masses on the liver as well. I went to see surgeon at Princess Margaret here in Toronto who said it is inoperable. They stented me, which didn't work well, so,ended up with a percutaneous drain, which is still with me...this is a tube that is inserted inside to bypass the blockage and allow the bile to reach my small intestine. From there, onto the oncologist who felt chemo would be of benefit to me given my otherwise good health.
Within a month I was into a gem/Cis chemo regime at Princess Margaret hospital, here in Toronto. Several scans later, and tumour marker blood tests revealed that I was responding to chemo...marker dropped significantly and tumour showed small shrinkage. I have been on this regime for roughly six plus months. Much to my frustration, however, my most recent scan done two weeks ago shows that the cancer is active again, the masses getting a little bigger and the marker being up.
Oncologist told me that in many cases people don't respond to the Cis/gem regime and I was fortunate that I did and now we should switch to a different regime, namely 5fu, which may work for me as it has worked for others. If this fails, my blood is being tested for a clinical trial which aims to target the tumour more directly.
I guess I am writing today for encouragement and emotional support...something the drs and nurses sometimes seem to forget in their daily contact with people. I couldn't help but get the feeling that the oncologist was disappointed with my last result...this is something I sensed (I am a very sensitive person to peoples body language) and didn't really make me feel much better emotionally about the change in direction. I feel I am in a good position to fight provided my medical team supports me one hundred percent...it upsets me to feel like maybe they do or maybe they don't but they are just going through the motions.
I am also somewhat annoyed that they didn't anticipate the possibility that the first regime might stop working at some point soon, as cancer is smart and regroups to fight....it would have made sense to me to change regimes while the cis/gem was still working, kind of tricking the cancer and thus leaving the door open to its use again at some point hence. But now I feel like we are 'locking the barn door after the cow has escaped, and we are playing catchup with this situation. It was eight weeks since my last scan and no tumour marker
Tests...did somebody drop the ball?
The worst part of my week came when the oncologists nurse called me to book an appt for Porto cath insertion which is necessary for the 5fu treatment...she gets on the phone to me and opens the conversation with 'I am sorry to hear the bad news'....I was floored. What bad news? I realize my scan showed changes but I understand this happens all the time with cc,regroup and fight, regroup and fight....it is not a straight road. I felt like saying,'thanks for stomping on me emotionally...you could use some sensitivity training.
I am in need of some continued encouragement to overcome all this negativity. I am also keen on any dietary advice you may have to offer...I have heard that sugar, dairy and meat is a no-no, and that a vegetable based diet is helpful. I was reading about Ted's diet on the Earth Clinic website and it falls into this line of thinking.
Thanks so much for letting me bend your collective ears. Hoping to get to know you all better in the months ahead,