Topic: What Next?

My husband had a distal bile duct tumor and whipple surgery in September, 2011.  He followed that with radiation and 5FU; and followed that with gem/cis.  Now?  It  there are very very very small multiple nodules in the lungs.  Just got back from MD Anderson; we were very disappointed.  After bungling a CT scan and being very bluntly told:  there's no cure, we can only try to buy more time, without having even SEEN any scans at that point.  Now what?  They advise back on gem/cis.  My husband doesn't want to go the chemo route...Anderson told him those lung cells were probably there at the get-go....so, why go back on a chemo regimen that didn't work in the 1st place?

Help!  Any alternative treatment ideas?  Anything?

Re: What Next?

Hi LDittmar,

I am sorry to hear of your disappointing visit. If you are not happy with the care you received at MDA, why not send an e-mail to a department head voicing your diappointment with your treatment. It is the top cancer center in the US, so I am sure they would want to keep it that way and try to fix anything you are not happy with. Was this a 2nd opinion? What did your regular doctor suggest and why did you decide to seek treatment at MDA beside the obvious of it having a great reputation. I don't have any alternative treatment ideas. The only thing I can suggest is to find an oncologist that feels they can help. I know that is easier said than done. I hope some others come along that have gone through similar situations and can help. All the best to you and your husband.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

3 (edited by PCL1029 Wed, 30 Jan 2013 20:32:04)

Re: What Next?

Hi,
If I may, 2 nd opinion by an interventional radiologist  to see whether  RFA or microwave ablation can be done to burn the nodules off in the lungs.
Since I do not know what State you are living in or out of the State, I cannot recommend a place for you to go.But in general, you should find a hospital that is affiliated with a big and well known university will be your best bet.
Stanford on the west coast, Northwestern university in the mid west and John Hopkins or Mass General hospital on the east coast  are a few of the top hospital in this field.
BTW, distal CCA after whipple by far has the best chance of survival than other kinds of CCA ,like intrahepatic CCA or Hilar CCA. So MD Anderson may not be all wrong to say that those CELLS ,which were too small for  the CT scan to see, were there Long before and only biopsy of the lung nodules can provide whether it is mets from the CCA or otherwise.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: What Next?

LDittmar....We had numerous reports on lung metastases; some people had it  removed wheras others did not.  Our Ken (Brianfam5) had three separate surgeries for removal of lung nodules.  From what we have seen on this board, lung nodules do not respond well to chemotherapy; even in those instances when other tumors reduce in size. But in general, unlike other cancers, lung metastases don't seem to cause the biggest problems with this cancer.
Hugs
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