February 15, 2014 at 8:47 pm #79728scheitrumcParticipant
Thank you for always being there for us, and everyone else. You are an inspiration. To be going through your own journey and still find time to help so many others is a special gift. You truly are a gift to many people who cling to your words, knowing you’ve been through so much yourself.
I will take your advice and try to establish these new contacts.
I hope you are staying warm in Chicago.
CarlFebruary 15, 2014 at 4:23 pm #79727pcl1029Member
I think this may be a time to consider chemoembolization (milder approach) or the radioembolization(segmental if possible as compare to whole liver) as your doctors suggested to you at the beginning of this journey last year.
Sloan is good,but mostly focus on chemotherapy or clinical trial such as HAI pump using FUDR . Phase II clinical trial of it shown about 47% overall response rate if patient is ICCA unresectable.(ie: pop=26 ) ;small population of patient and the associated risk(surgery is of my concern).BTW,I do not think ,unless you specially ask for a multidisciplinary approach that involved an interventional radiologist (IR).Sloan will start the process as such.-Sloan’s view is that radioembo/TACE is hard to draw specific conclusion but my be of benefits for subset of patient due to series of retrospective experiences with small numbers and varied post-intervention approaches there.
Mass General Hospital upon requesting for a GI consult specialized in CCA,He/she acts more like a coordinator to coordinate you to see all the specialty doctors and made the final recommendation from the multidisciplinary team.(liver surgeon,medical oncology, medical radiology and IR )
MGH will most likely you can get a more cohesive prognosis about your wife and treatments.( and I think they automatic request for tissue for NSG gene profile.)
One advantage of MGH is that they have the largest hospital research lab in the east coast base on what Dr. ZHU (the leading researcher) at 2013 CanLiv seminar at Washington DC.And they do have more clinical trials to match Next Generation Sequence(NGS)genomic profile result . May be they can suggest a targeted agent or clinical trial for your wife. But don’t get the hope too high, for me I have 4 mutations but I may qualify for one or two; other patients on this board even cannot find a match for a clinical trial.
Clinical trial is the recommendation from NCCN as well as the respected oncologist like Dr. Eileen O’Reilly at Sloan.
John Hopkins is also a very good place to have consult, just make sure you start with a GI specialist and tell her/him what other doctors your want to be seen.
Most of the time, I meet them at the conferences that this foundation sent me to sit in for information. The one that I went to for 2nd opinion and treatment is Mayo Clinics. they are very professional and answer questions in their field of specialty with great knowledge. my GI consultant is Dr. Roberts,gentle and kind.A very organized place for a 1800 bed international clinic(was told by a nurse).;it’s nursing care is unmatched in staff to patient ratio.(ie: vital sign every hour , and they did come almost exactly an hour to check my vital. if question asked and they don’t know, they will call their resident doctor to adjust my Fentanyl PCA in the middle of the nite.
God luck , Carl and
God bless.February 15, 2014 at 3:23 pm #79726lainyParticipant
Dear Carl and Lynn, I am so sorry to hear the latest. I think you have chosen some of the BEST to contact and at this point I can only say that I pray and wish for the best for Lynn. You are an amazing Husband and Man and I know you will keep us posted. I believe that a new pair of eyes can always see things in a different way. I will be thinking about the both of you.February 15, 2014 at 1:30 pm #9556scheitrumcParticipant
CT scan this week showed Lynn’s cancer has grown in her liver (ICC patient). Tumors have grown and there are more “spots”.
We had great success on Gem/Cis but switched to maintenance (gem only) in October. The recent results indicate the treatments aren’t working.
I am sending the latest information to both second opinion doctors at Fox Chase and Sloane. Hoping for some news about next treatments. We will go to Fox Chase to discuss alternatives. There is a trial which they are associated that Lynn may qualify.
Until then, I am going to start reaching out to other doctors who have been praised on this discussion board. I am planning to contact Dr. Chapman.
I would appreciate feedback regarding other consult doctors you would recommend. If you want to contact me directly, please send me an email (firstname.lastname@example.org).
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