May 11, 2017 at 4:10 am #94842marionsModerator
Semih…..so sorry to hear your story. I have learned that affected lymphnodes are indicative of systemic spread of the cancer. In this case chemotherapy is the first choice of treatment. Having said that, dear Semih, palliative care does not mean end of life care. We know that other than a curative resection treatment of any kind is palliative in nature, but what does that mean?
It is likely you respond well to the chemotherapy treatment and the cancer is kept at bay. This then may open the door to clinical trials.
Prior to doing anything I would advise you to get in touch with Netherlands Center for Personalized Cancer Treatment, which is conducting The Drug Rediscovery Protocol (DRUP) trial.
I realize inclusion in this trial requires a measurable tumor, but perhaps you can receive some expert opinion re: the next step for treatment.
Please keep us posted.
MarionMay 9, 2017 at 7:52 pm #94841positivityParticipant
At this point I can only say thank you for joining the community and sharing. It is crucial we get as many people as possible to share their stories and treatment. This will allow everyone to benefit and understand how this condition works differently in everyone. I was reluctant to join for only a week, but wanted to share and make a difference. It was panic when I first heard the news and of course sorrow, but I had to turn it around.
Thanks again and keep us posted. I do see commonalities with some patients in the condition returning even after surgery, so don’t worry you are not alone. Can you get several opinions and look into several treatment options? Diet and exercise is still crucial regardless of treatment you choose or don’t choose.
Keep going and searching the best choice for you!
(only my opinions above based on experience)May 9, 2017 at 2:40 pm #13282sersemiParticipant
I have been a passive reader for almost 2 years this website after being diagnosed having ICC in August 2015. I read quite some posts, and it feels like I have an extended family here, giving a very hard fight against this disease. I learned a lot and read amazing stories which give me hope.
I live in the Netherlands with my wonderful and supportive wife and 6 year old daughter. I am 38 years old.
My CC story is like this. In August 2015, I had quite bad itching all over my body and some digestion problems in the first day of my summer holiday in Turkey. I was diagnosed with jaundice due to a tumor blocking the bile duct. It also spread to ducts inside my liver. Unfortunately the tumor markers didnot raise in my case. The doctors put the diagnosis and operated on me in 1 week. Luckily there was no lymph node spreading or spreading to other organs. I had internal bleeding and they need to operate again in 2 days. After that I recovered and returned to The Netherlands, recovered slowly.
I changed completely my diet, eating more plant based, avoiding sugar and try to do more exercise to minimize the risk of CC coming back. In The Netherlands, the treatment is very standard we were told, if you have a curative surgery with R0/R1 resection, no adjuvant theraphy is given. I enrolled to a clinical trial to get some chemo for prevention, however, I was in the control group, and I was only getting blood tests and CT scans every 3 month. Unfortunately, CT scan in April 2017 showed two lymph nodes close to resection area got enlarged. Followup biopsy confirmed that it came back unfortunately. Now we are told that we have only pallative care and that is standard first line treatment with chemotherapy. It feels so strange, I feel good and healthy but my oncologist is not very optimistic. I am wondering if there are any cases like me, recurrence in lymph nodes, what kind of treatment they are getting. It feels like these lymph nodes need to be removed by surgery or burned out with radiotheraphy.
That is my not so short story. I wish everyone a good fight and a new hope will arise in the near future.
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