Topic: Fighting girl...new member!

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

Re: Fighting girl...new member!

Hello Laura,

Welcome to the site and glad you decided to join us and tell your story.  Thank you for sharing.

Sounds like you are have a medical that may not be working for your emotional needs at the moment.  Have you thought about seeking a second opinion elsewhere or changing doctors?  Our emotional well being is just as important as our physical one and it helps to have a team with which we can bond and feel like we are in the fight together with.

Sometimes people, especially medical folks who are so focused on your physical being, do not realize the power of their words and the effect is has on people.  Unfortunately it's is often up to us as patients to let them know what we need and to tell them when they've gone astray. 

I cannot address the issue of your chemo having not been through that particular course myself, but I am sure others will come along and chime in soon.

After my diagnosis I changed my diet to eliminate red meat and processed food.  Not sure it does anything, but it does help me feel in control and keeps me feeling like a fighter in all this.

We are with you in this fight Laura!!  Sending positive thoughts your way!

Hugs,
-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: Fighting girl...new member!

Dear Laura, I want to welcome a remarkable girl to our remarkable family but sorry you had to find us.  First I would like to call you, "The Gal with the Great Attitude". Second, I want to reiterate exactly what my girl Randi said but will not repeat, just give a hearty I AGREE. 2nd opinion time and attitude adjustment for Medical Team!
But then. chalk some of it up to the CC. Even most Medical Teams just don't know how to handle it! Teddy was with the same ONC for almost 6 years. He was tops here in Phoenix. And yet at the end he sent Teddy to a surgeon he had been to, to give him the bad end news. He just could not tell him after all he had been through. Guess I turned it all around and felt instead that he loved my Teddy so much it was all ok.
So, what I am trying to say here is that sometimes the Medical Team is to be forgiven if you are shown a softer side. Training needed for the rest.
You cannot go back and think about what should have taken place but you can go forward with another opinion for validation and treatment.
I am NOT big on any diet thing that has not been proven and for CC it has not. I believe that just keeping your energy level up and good food is paramount.
We have so many Super Heros here and lots of GOOD stories to tell as well. This is a place for hope and help.
So, Laura, from now on you are my new Boxing Champ, put on those pink, diamond studded gloves and fight away, we are all in your corner.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

4 (edited by PCL1029 Sat, 02 Mar 2013 09:33:38)

Re: Fighting girl...new member!

Hi,
Base  on your message, it looks like you have extrahepatic CCA (ECCA)
For some unknown reasons, 5FU and its pill form Xeloda (capecitabine) works better on ECCA than intrahepatic CCA.(ICCA). So I think it is a good choice to switch to 5FU + other chemotherapy or targeted agents.But GEM/CIS is the regimen that most doctors refer to use in cholangiocarcinoma because of it overall response rate is one of the highest (around 22-30%).

The rule of thumb is that if a regimen works ,doctors wiil  not change it until disease progress or intolerable side effect occur.. Most of the package insert of the chemotherapy agents will have that in the "Indication" section.
Therefore your doctor was not wrong to wait until the tumor started not to respond to the GEM/CIS regimen and switch to 5FU. The only way to know whether the regimen is working is a CT scan after the chemotherapy was given a period of time  or more. No one and I do not think you want someone to anticipate your disease progress and give you something else without  an evidenced-base diagnostic result- Unlike antibiotics, which they give you an empirical antibiotics first in ER and finally give the appropriate antibiotics when the blood culture is done and give the doctor or pharmacist the bugs that they know which antibiotics and frequency they should used for your infection. You do not want them to give you chemotherapy to try on you. chemotherapy agents are  much toxic than antibiotics and other medications.
When the disease did not response the current chemotherapy, that means the cancer cells had developed a mechanism to resist the effectiveness  of the chemotherapy agents that are in use  and it make no sense to continue the same thing if it is not working.that is why the drug company advice for most of the chemotherapy agents in the package insert, continue until disease progress,that means until the regimen no longer works.

I am not a doctor but only an old patient of ICCA for 45 months now. I am a medical professional also. My opinion may be wrong but that is the choice you have to make when you try to gather info. from the internet.

Princess Margaret Hospital is one of the best research hospital in Canada  for cholangiocarcinoma. I took my Dad there several years ago for treatment of lung cancer and I know how it feels about the personal who works there, You may see an oncologist with  residents doctors; the waiting area are small and  full of a lot of cancer patients that do not know what comes ahead in their lives; you need to go to a different floor to get register for lab work and other things and there are a long line ahead of you. The nurses are over work and under paid and take care of several patients at the same time and there are training goes on for nursing as well as in other medical fields.So please be kind and forgive their choice of words,they wants to do good,but they may not have the capacity of keen sensitivity like you have-can read body language and among other things.   There are not many medical professionals born with the gift of comforting the sick and satisfying the needy patients .It takes time and emotional maturity to develop such skill .
You have come to the right place to get emotional support from all our moderators as well as seasonal caregivers and patients; they will provide you the vast emotional support to boost your fight spirit, to encourage you when needed; to comfort you when sensed; and above all provide you a place to vent.
This site is very different than some other sites that is only operated by one person and have nothing to enrich our live toward understanding medically and emotionally about cholangiocarcinoma.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Fighting girl...new member!

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

6 (edited by eli Sat, 02 Mar 2013 13:15:21)

Re: Fighting girl...new member!

Hi Laura,

I am in Ottawa. I'm a caregiver for my wife; she is the one with CC. She received all her treatments at The Ottawa Hospital. We never went outside of our hospital for a second opinion. As you know, our public system can be slow at times. We were afraid that going for a second opinion would cause unreasonable delays.

Here's what we did instead on one occasion.

I asked our oncologist about new chemo protocol that showed promise in a small trial in Europe. He dismissed it because the trial was very small. I wasn't happy with his answer.

I knew that our oncologist was a member of the gastrointestinal oncology team. The team includes all hospital oncologists who specialize in GI oncology.

I asked our oncologist to take my wife's case to the team meeting and discuss the proposed chemo protocol there. He did that. He brought back their consensus opinion the next time we saw him. The opinion was the same as his own: the protocol lacked evidence because the trial was too small.

The important part for us was... it was team opinion rather than his own personal opinion. We found some comfort in that.

This option is not as good as a true second opinion. You can't attend the team meeting and ask questions face to face. But, at least, it's something.

Best wishes,
Eli

Re: Fighting girl...new member!

Hi Laura,

I wanted to welcome you to this site. I am sorry to hear you have CC, but you are definitely at the right place for support, advice, and friendship. My daughter has CC and has been on all the chemos you have mentioned, gem/cis, just gem, 5FU, and Xeloda as well as oxaliplatin. I think 5FU was the easist for her to tolerate, but is kind of a pain because you have to carry it around with you for 48 hours. Her oncologist switches hers when the chemo starts not being as effective. She has been on gem two different times, so they can go back to one with a different combination. My daughter has been doing this for 18 months and is set to have surgery March 25th. She was told at first she was not resectable, but things change.

As for diet, Lauren did eat what she wanted and what made her stomach feel good, but gained a bunch of weight plus she was inactive. So now we are eating very healthy, and she feels great. She can still have whatever she wants, but is making smart choices. Since Feb. 11 she has lost 14 pounds. She is also walking every day on the treadmill. She is up to 25 minutes and we are trying gradually to get up to 60 minutes a day. 

There is no excuse for what that nurse said to you. There are always going to be people that don't think and say the wrong things. I'm sure she meant well, but said it in a dumb way.

I hope I have covered everything you are concerned about. It is so scary, but as you go on things settle down a little and I hope it does for you. Please keep us posted. All the best.

Love and hugs,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Fighting girl...new member!

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