Topic: Phase II trial at Ireland Cancer Center (UH)

Over the past couple of weeks my dad seems to really have gone down hill.  He is very badly jaundiced and he is just so tired. He seems to have all the symptoms associated with liver failure, but then again others have said all he needs is a stent.  In any case, we are headed to University Hospital's Ireland Cancer Center tomorrow to meet with Dr. Joseph Bokar about my dad's possible pariticipation in a Phase II clinical trial.  The title of the trial is Adjuvant Therapy for Patients withPrimary Uveal Melanoma with Genetic Imbalance.  The applicable disease sites are Melanoma, skin.  This seems very odd to me but from what my mom told me they have found that this treatment has had some positive results with liver cancer patients. Once I get more information, Iwill post again. Just wanted to throw this out there in case anyone had heard of it and cared to comment. Not sure if my dad will even be a candidate at this point, but maybe the information will help someone else.

Re: Phase II trial at Ireland Cancer Center (UH)

Hi Dads daughter,

Sorry to hear about your dad right now. My dad was the same when he had his jaundice and he was tired a lot as well and he had a metal stent to help relieve his jaundice.  Does your dad not already have a stent inserted? I have never heard of this treatment or trial before for this so I hope that other can come forward and help you some more. Please keep us updated as to what happens.

Best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Phase II trial at Ireland Cancer Center (UH)

Well, there is no trial for my dad.  Unfortuantely, Dr. Bokar said that he does not meet the phyiscal criteria.  He very compassionately and honestly laid the truth out for us.  He said that dad has been on a mission to fight the cancer over the last year and it's now time for him to change his mission to one of quality of life. He has had all the standard treatments, has had three surgeries and there is nothing more they can do.  I had brought my computer with me to type so I could make sure I captured all the detail of the trial, I had used this wonderful site to prepare questions and he is not a candidate.  And, the ironic part is, something happened to the document when I shut down my computer and I have nothing. . .I can't even remember the trial drug to share with all of you who have been such a wonderful source of comfort over the past year. 

I know we will all be fine and life will go on, but right now, alone in a sleeping house, I just can't stop crying. I cannot say that any of this surprised me or anyone in my family.  We've all seen him get progressively worse. He is so yellow and he is on oxygen.  The blessed thing is that he still has his appetite and he is in no pain.  God bless all of you and thank you for always being here. We can only pray that some of the burden of having to keep fighting has been lifted from my dad's shoulders and he can focus on enjoying what time he has left.  He did tell me on a recent visit that he loved opera and that when he was stationed in Germany he used to go to the opera (it was actually cheaper than going to see a movie).  If anyone knows of a good opera CD I could purchase, please let me know.

Re: Phase II trial at Ireland Cancer Center (UH)

Dear dads daughter.....my heart goes out to you in this very precious time.   Take in those wonderful moments to be shared. I realize it may be difficult, but underneath the yellow color is your loving Dad looking just as he had before this disease progressed.  When afraid of the unknown we have a tendency to not live in the moment. You have the ability to cherish it all; the love you have for each other and the warm moments of tenderness between a daughter and her Dad. This disease is not always accompanied by pain and your Dad may want to eat many more of his favorite meals.  That is what I am wishing for.  We are here for you so please, remember that you do not need to shoulder this alone.   
I am thinking of you and your family and am sending my warmest wishes and many hugs your way.
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: Phase II trial at Ireland Cancer Center (UH)

Thank you, Marion.

Re: Phase II trial at Ireland Cancer Center (UH)

Dear Dad's Daughter, we are thinking of you and this time you are going through. How lucky your dad is to have a daughter like you who is taking this journey with him. I would ask him to name a couple of his favorite opera's and get a CD of those 2 or look for a CD with various selections on it from other operas. Personally I think that Carmen is an all time favorite and personally I LOVE Madam Butterfly. Carmen is very lively and Butterfly is more soft and romantic. Never feel guilty about crying, it is a natural release from all the mental pain. I am sending a cyber hug your way and don't be shy to use our shoulders.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Phase II trial at Ireland Cancer Center (UH)

Dear Dads daughter,

I am sorry to hear this news. I know how you feel right now as it was only last year that I was in your shoes with my dad. It was tough to take in at the time and there is nothing wrong whatsoever in crying at all.

What I would say to you is to enjoy this time with your dad right now. It is an important time for you both and please cherish it, and as you say, focus on trying to enjoy this time as best that you and your family can. I am glad to hear that your dad is in no pain and still has his appetite. My dad was the same, his pain was very manageable and was not a lot, and he still had a healthy appetite and enjoyed his food. And I am hoping that this continues for your dad.

Please come here when ever you want to. We have been where you are and understand how you are feeling and also what you are going through. Think of us all as the biggest pair of shoulders in the world.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.