Topic: Mixed results with Cisplatin

Hi All, my beloved brother Rami is now 3 months after being diagnosed with bile duct cancer that has metsized to the lymph nodes, the cancer is at stage IV so operation and radio were excluded from the list of options. He was put on cisplatin for about two months now.

Today the oncologist examined his new ct scans comparing them to early scans. He found that while the cancer in bile duct has actually stopped or

Re: Mixed results with Cisplatin

Sam...welcome to our CC family.  So sorry for your beloved brother Rami having to fight this cancer.  Will you be able to be present at the meeting with the oncologist?  If so, it would be helpful to prepare a list of questions in advance and to have a note pad, or recorder handy.  This way you won't be overwhelmed with the responses and you are able to have those questions answered which are foremost on your mind.
I am a firm believer in 2nd and 3rd opinions when receiving a diagnoses and when making decisions in re: to the treatment options.  You might want to consider retaining all of your brother's medical records (including doctor's reports) MRI's, CT's, etc. anything and everything pertaining to the diagnoses of your brother.  I don't know in which Country or State you are residing however, in most instances, your brother will have to sign the release forms.  The Social Worker at the Hospital should be able to help you along with these requests.
Please, stay in touch.
Sending tons of good wishes
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Mixed results with Cisplatin

Hi Sam,

So sorry to hear about your brother but you will be a godsend in how you will be able to help.

My mom has cc and I suggested that she and my Dad see their attorney.  They drew up a durable power of attorney, a medical power of attorney and their (can't think of the name of it but it spells out end of life options such as feeding tubes ect....)  My parents gave me power of attorney and when I go to get copies of medical records, scans or whatever I just show the copy of the document.  These days most CT, MRI's and other reports are all digital so I just get the CD of them.  The first copies are free.  Our oncologist usually hands me a copy of the current blood work before we go to the chemotherapy room.  Mostly it's just thinking to ask and having the documentation that says you are the patient representative.

This type of behind the scenes work will keep your brother from having to deal with lots of redundant paperwork.

Hospitals have to work under HIPPA guidelines so they have to be careful in who they give results to.  They usually aren't being hard to get along with it's just government regulations that they have to follow.

Remember you are his advocate.  Don't be afraid to speak up, ask questions and keep asking until the answer is in a form you can understand.  Every business has it's own language and it's no different in the Medical field.  Unfortunately you'll have to learn a language you didn't want to!  My parents are of the generation that believes if a doctor wants you to know something, they will tell you.  I've had to reeducate Mom and Dad to the reality that they are paying for a service and they should demand the best.

You and your family are in my thoughts and prayers.  Your brother is unlucky in that he has cholangio but wealthy in the love of such a brother as you.

Let us know if we can help........

Cherbourg

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is.  Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: Mixed results with Cisplatin

Hi All,

We had recieved good news recently. The latest scans showed with some dought that the cancer in the bile duct and the multiple lymph nodes has stopped from growing, and maybe shrunk in some places?? the latest CT scan films and reports are still with the oncologist to further study them more carefully as the diagnoses from earlier scans lead to beliefe that the lymph nodes cancer grow bigger (from 2 to 5 cm), but the latest scans showed that it seems that the 5 cm cancer was not a cancer? it has almost disappeared now?!

Rami will have another chemo session starting the 8th of December.... its again (cisplatin & 5 FU), oncologist was happy with the latest scan results and blood test and decided to continue with the same medication

All the best for all of you and thanks for your prayers