Thank you dear Gavin for your support.

I would like to thank you all for your support and advice through this tough journey. It was just about 2 months ago since he diagnosed. Time passed to quick....

my dad passed away last night sad sad sad

Thank you for all your supports.
It is the forth day that he is in coma and dr said his heart beat is getting weaker today sad(

They looked at stent and try to help him with eating. He was a day in hospital and went to coma yesterday morning sad(( . He is at home now with oxygen and other things attached
Its an incredible and massive pain for my heart............

6

(7 replies, posted in General Discussion)

Hi Jennifer
I am really sorry for the lose of your loving dad. My dad went to coma yesterday morning and he also  diagnosed about 2 months ago. It's incredibly fast.
My pray and thoughts are with you and your family.

Hugs & Kisses
Samira

My dad buit up fluid in his abdomen and had drainage on both side. the fluid and swollen reduced but he lost his appetite and is getting more weak and tired as he most the time is sleeping, I am worry does anyone has any idea? I wanna know this happen because of drainage and will back to normal eating or his condition got more worse?
thx

Hi Evan,
I am really sorry to hear about your mum.
As people mentioned before Prof  Juan Valle in Manchester is a really good expert oncologist for CC and also you may consider Royal Marsden hospital in London.
Prof Brian Davidson (Royal Free Hospital) and Shahid Khan (Imperial College).

Samira

Thank you dear Lainy, well stents are plastic, they place them during surgery and one is still working. thought he may need surgery to exchange the one inside, but his body is getting weak. So his bilirubin is getting a big concern, as  they stop chemo and he lost appetites.
Many thanks for your concern.

Hi Julie thank you for your reply and hope all go well for you. Thankfully, my dad glucose level is back to normal and also his palettes and WBC. However, he has dizziness due to low RBC and HCT. 
Although he has stent over a month, his bilirubin level is still high and about 32. sad
Is there anything else to help to reduce biliurbin apart from stent?

amir do you know any center in iran that do Photodynamic therapy (PDT)?

Thank you to all.
He is much better now as his glucose back to normal level, but still has the issue with platelets (25000). So they stopped chemo for a while. He is getting few FFP and a Blood transfusion. sad
so, CC patient needs to consume loads of sugar and sweets, am I right?
Does anyone heard about Dr Rosenburg who treated a patient with advance CC by Immunotherapy?

Dad is taking 3 weeks course chemo (Gem+tarveca), and is gonna finish by this week. However, his glucose level droped to 56 mg/dl and platelets 66000 yesterday. They stopped chemo for few days and injected serum which helped to increase his glucose level up to 86 today.
does anyone has any opinion about this condition?
Thank you amir for ur info.

Hi,
he had about 3 weeks ago, and is starting chemo,
his surgeon was Dr Maddah, and oncologist Dr yasha Makhdoumi , in mashhad, omid hospital

Thank you for information. He is a bit better with eating now but is going to start chemo tomorro and probably will get more problem with eating after that.
I just found this center in Germany, does anyone have idea about it?
http://www.karl-olga-krankenhaus.de/lei … m-lgz.html
it is getting too hard, his dr said if chemo do not work the rest is only going to be palliative treatment. sad((

Many thanks Clarem for your info.

Thank you Percy, his doctor is a member of GI department and is quiet doing well but I am just trying to do my best. My dad back home from hospital today, he is generally ok but he stop eating , he just eat a bit of food /drink . He had much better appetite when he was in hospital (however, they add B12, B6, Vitamin K to his serum).
Dr said we should not give him any extra supplement or vitamin pills and he should get use to normal eating. I am worry because if he will be stay like this, he will lose weight and get weak before chemo. do u think his appetite will back after few days or will get more worse?
Thx

My dad is in Iran and I am living in UK. I am trying to bring it here, but I do not receive positive feedback from doctors here, I do not know wt should do sad
Is next- generation sequencing available every wr for CC?

Thank you all for your replies. My dad is already out of USA and I am not sure whether he could take part in clinical trails for immunotherapy or not?
and if anyone could help me to find a clinical trail for this stage would be greatly appreciated.
PCL1029 you mentioned chemo may be 6-8 weeks after surgery, but if makes tumor to spread more and control with chemo may be more difficult, am I right?
for NGS do they need fresh tissue or block sample from pathology is enough?
Many thanks again.

I am new to this site and found it very informative. My dad is recently diagnosed with bile duct cancer in porta  hepatia, he has very yellow skin. Surgery did not help him to resect the tumor as it spread to preitonal and liver. So in operation he had biliary stent to reduce bill level and dilation of  tumor, Cholecystectomy. He is still in hospital for post operation recover, and they are going to start chemo by next week. I read many papers and mostly suggest Gemcitabin/Cisplatin as the best option. However, he visited by several specialist and all mention low survival rate. I am wondering if chemo work to shrink the tumor, will be possible to remove it later or not?
I also like to receive your idea about any up-date treatment option for this stage of CC.
Thank you.