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Dear Pam,
I can’t express how sorry I am for your family.
You are an incredibile person helping so many people in addition to your wonderful daugther.
I know that you will find the strength to pass this incredibily difficult time from your beautiful family.
All my thoughts,
Teresa
Hi all,
Am so sorry have taken a while to post Dad’s results. Have felt so terrible for what Pam and her family are going through that didn’t fell like postings.
Dad original scans showed some non specific soft tissue along the hepatic artery. Also he has some lymph node disease. His recent scan conclusion states; sites of soft tissue abnormality remain relatively unchanged . However the report also states that some of the lymph nodes show cystic necrosis which our Onc thought is tissue death possibly due to chemotherapy.
I know this is good news however must admit was hoping for some shrinkage (even though maybe 6 weeks is a little early????)
My only concern now is dad’s mental state: he is becoming more and more down as he realizes this is not like other cancers where there is a set number of cycles.
I think he wishes to return to his home town in Italy in August and now I am wondering if in August we should organize a chemotherapy break (the trial allows a 5 week break) so he can have a visit with his family whilst he feels well.
Naturally I am scared of having a chemotherapy break but if he wishes to do it ( his mind changes daily so hard to tell) I will try and organize it.
All advice regarding chemotherapy breaks?
Pamela,
I can only imagine how hard it must be for your and your family at the moment.
You are a very special and united family.
All my thoughts and prayers for Lauren’s recovery
Quick update on Dad.
His CA 19-9 went down to 51 after two cycles of chemotherapy.
He had his CT scan on Thursday and we get the results on Monday afternoon – please wish us luck.I am going back to my two young kids in Italy on Wednesday and would hate to leave if we get negative news……
Al the best
Hi,
Again as with Marion this is a layman’s advice however believe your doctors are doing the right thing in ensuring there is a complete work up to understand why you have repeated stones in the bile duct.
I also believe it is a good idea to have the gallbladder out and then the surgeons will likely monitor you with ERCPs to see if stone’s reform.
Ensure you also always get second opinions as well.
I wish you all the best
Cathy,
Not sure if this is helpful however here you go
http://theoncologist.alphamedpress.org/content/15/11/1227.long
Hi Cathy,
Sorry I must admit I can’t answer your question.
However am wondering if you had such good results on GEM/cisplatin and few side effects why did the oncologist stop this treatment. I thought the idea in CC was to continue till the drugs stop working
Hi Crownshine,
Your Oncologist will give you all the appropriate answers and I hope I didnt confuse you further. I know that the hardest part of this process is the wait – it can be nerve racking and we are all always waiting for something; for a test result, for a CT scan, to speak to a doctor etc.
Just because he has some potential disease in his lymph nodes (again this is my understanding from your post however please ask your oncologist to confirm) it doesnt mean it has spread anywhere else. Before a Whipples they perform a variety of tests including MRIs etc to check that it there is no visibile spread anywhere else.
It is important during this process that you look at the positive aspects; your father has managed to have surgery that many unfortunately can’t and that they only saw one out of nine lymph nodes with what sounds like microscopic disease (however again get the doctors to confirm this point please)
This information is what oncologists use to make a game plan; and I am sure they will for your father.
I hope I haven’t created more apprehension and confusion as this is the last thing I wanted to do.
Rest assured that your Oncologist will explain everything in a better manner and importantly will use this information to plan your father’s treatment.
I wish all the best for you as I understand how you feel with my father undergoing this process.
All my best
Hi Crownshine,
Basically it sounds like that even though there was no macroscopic (that is to the visible eye) there was some microscopic spread to the lymph nodes.
The suggestion from the oncologist would be to do chemotherapy (assume GEM/cisplatin ) once your dad can tolerate it.
I know you are worried and can fully understand that however once you have plan in place I assure you it will become more manageable.
All my thoughts
