positivity

Thank you for joining the board, and the more people we get the better for understanding this condition.  I am not here to give advice or tell you the road you need to choose, but give you my experience.  I highly believe you should be your own advocate and if you are unable have a family member or someone close to you.  It is a tedious process and sometimes the person who is going through this does not have the energy to schedule appointments, research doctors, make decisions, or even make the effort to learn about this condition.

CC is a very challenging condition and can differ for many as far as location, how aggressive, and how you will respond to a treatment.  If possible genetic testing is important so you know there are more options than the standard gem/cis.  My mom has the same which is perihilar CC, and it is tough from what I have experienced.  Have you had stent placements?

She did not have treatment based on her individual unique health conditions.  I had a hard time with limited choices, so we just did symptom control.  Again, there is no easy  day and we take it day by day.  Check into clinical trials as that can open doors for many if something works.  The most important is finding a doctor who you feel comfortable with and is able to work with you.  Sometimes that can be a challenge as some are not very assuring and have a one track mind.  I recommend a few opinions if that is possible for you.  Again, look into what your body can tolerate as far as treatment and ask about success rate by the doctor giving examples.

Hello Aroha,

Definitely speak to your medical team about pain management soon as possible.  According to my experience, CC can go months without pain, then sudden extreme pain.  When this happened the first time I knew that a pain management program would need to be in place immediately at home.  Our doctor prescribed a couple of pain medications to have readily available according to the level of pain: one being milder and the other for extreme pain.  Also, as stated above check status of CC and this disease causes extreme pain on the right side at the liver/bile duct area if that is what you are referring to.  My mom also chose not to have chemo/radiation and did have stent placements.  Again, I always have to stress this is our personal experience and choices, not giving suggestions for anyone to follow our decisions.  I learned from the forum that this has to always be stressed where we are coming from personal experience and knowledge, but not necessarily a choice for another individual to make.  Keep going…I know the difficulty as I have been through this for a year.  You are taking the steps necessary by learning and understanding this condition and asking questions.

Thank you for sharing your experience.

Again just sharing the same, mom had no chemo or radiation and the tumor has now covered more space after a year. Chemo has no guarantees, but I’m sure it’s so individualized. We need more treatment options and should be the focus. There are still way too many limitations with oncologists and not many options. This is one year of tough experience.

Yes I can relate. Inoperable mom and we did not choose chemo and there is nothing offered that will work. Now after a year I hear the hospice word again and so disappointing. We have a similar situation. Research and studies are slow and I was told immunotherapy doesn’t work. Who are the fortunate ones that it worked? They must not have had perihilar CC.

I know this is an extreme late response and don’t know the status of this patient, but needed to express my dissatisfaction with this oncologist at USC.  I can add more detail if anyone is interested.

Hello,
I just have to give a brief reply as I deal with this tough cancer.

I agree whether you have chemo or not, one still feels some kind of fatigue.  My mom could not have chemo and still has extreme fatigue, loss of appetite, and at times seems hopeless. The big barrier is those darn stents, but we can’t do without which if one day there can be some incredible treatment where this can be controlled and the patient can be off stents.  Those procedures are high risk also and sometimes not guaranteed, so it’s sometimes like hitting a roadblock.  It seems the more stent procedures the less effective the stents have become which is extremely disappointing.  It’s a tough journey, so it’s okay to express yourselves.  We can only hope for some effective treatment to control this nasty condition. Also with genetic testing an adequate tissue sample is needed to be qualified and we did not meet that test, so that is eliminated for now.  There is no way I would have her go through that risky biopsy again.  No matter what turn, everything is risky in this condition, but we continue to manage even though there is no cure. Also, needed to comment on oncologists, you have to see several as obviously there will be the negative ones or ones hard to communicate or you get the feeling they have nothing to offer so they don’t want to work with patient.

Amazing to know people who have gone on for years especially with the intense treatment program.  Obviously not everyone is a candidate for surgery, and some individuals may have more sensitivity to a very strong treatment.  As we know CC is very individualized, so have to look at the age, medical history, and tolerance level of the person before any treatment program.

Incredible news and thanks for sharing and keep going no matter how tough it is.