1

(9 replies, posted in Good News / What's Working)

Hi everyone...thanks for your feedback so far. I still don't know the actual name of the trial. The dr just presented it to me in general terms at our  last meeting and I am due to see them again within the month so that's when I will get all the paperwork with details. As far as I know, it falls under our public insurance system here, so thanks to heavens I shouldn't have to pay...for this alone I am eternally grateful. Keep the stories coming...it cheers me!

Take care, Laura

2

(9 replies, posted in Good News / What's Working)

Hi...My name is Laura and I am new here. I am writing today requesting to hear some positive stories about member participation in clinical trials.

I myself have been invited to participate in a phase 1 trial--I don't know all the details yet, just that it involves examining my blood and tumour samples for genetic markers that will allow me to be more closely matched to a trial drug to fight my cc.

I guess I am looking to hear some real life stories of participation in trials--including what exactly is involved--for example, my dr indicated  it required more visits to the hospital to stay on top of progress. I have been feeling really kind of down in the dumps lately and would love to hear any positive stories you feel like sharing where trials are concerned.

Thanks in advance, Laura

3

(7 replies, posted in Introductions!)

Hi Eli and Pam! Thanks for the welcome!

Eli...I think it was great that your Dr actually took it to his meeting...that was an accomplishment for you. I do find that some medical people now get a touch annoyed when you bring them any info you have found off the Internet. It is as if they think you are second guessing them, and I sense that is not always appreciated.  So again, at least your dr was open minded enough to go that far for you which was great.

Pam...How excited you must be about your daughters forthcoming procedure. I keep wishing, dreaming and praying surgery will someday be an option for me. They can be so emphatic about no surgery at the outset, it can be very discouraging. On the encouraging side, thanks re the info about the different drugs. I was unawares that one could still return to a previously used chemo agent in a different combination, so this is definitely something I will address with my dr.

Best wishes everyone for a continued successful fight!

Laura

4

(7 replies, posted in Introductions!)

Thanks everyone for the warm welcome. Your kind words and insights have already cheered and strengthened me. I especially appreciate the info about the new chemo drug I will be on. The drs don't communicate too many clinical details about the specifics of my condition unless I really press...they just give info in layman's terms so the point about the extrahepatic treatment is very valuable to me.

As for getting a second opinion, I don't know how that would work here in Canada. We are on a public health system so in essence all the drs work for government...it's not competitive like private care in other places. So if I were to seek advice elsewhere, my file and related history would simply follow me, and chances are the new doctor would not contradict his or her colleague who had already assessed me. I have had several friends experience same so that is why I am wary. Add to that Princess Margaret is one of the most progressive cancer centres in Canada, so going elsewhere would mean going from more to less expertise where cc is concerned so I am scared of risking that.

Once again, thanks for the big cyber hug...it made my day. Every little bit of support helps me to remain a fighting girl with pink boxing gloves on wink

Laura

5

(7 replies, posted in Introductions!)

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,

Laura