Topic: Clinical Trial Sorafenib/Erlotinib

My Dad is on the clinical trial of Sorafenib/Erlotinib.  He had a pet scan last week and today he received his results.  According to my Dad, the doctor said the tumor in the liver, shrank a tad!  My Dad had cc 15 years ago.  It is back with a 4 in. tumor in the liver and 2 spots in the shoulder/neck area.   My Dad & Mom are celebrating with hi-tea in Chicago!  (definitely my Mom's idea!)  I am so happy that the tumor isn't growing and thankful for this good news!

Re: Clinical Trial Sorafenib/Erlotinib

Thirdone,
Great news! Your Dad is of particular interest to me as I am a fourteen year survivor. For cancer to recur after fifteen years defies all the odds so I'm sure docs are following closely. Please continue to post progress and I'll continue to pray for the best outcome for your Dad.

Grace and Peace,
bob

Re: Clinical Trial Sorafenib/Erlotinib

Great news, thirdone, glad to hear it.  Is your dad on anything else other than those two?  How is he coping with it?
Hoping to hear more of the same and that they enjoy their hi-tea!
Kate

Re: Clinical Trial Sorafenib/Erlotinib

Thirdone,
Great news!!! I am newly diagosed and determined to survive many, many years.
Best wishes.

Fighting CLC since 11-2010. Looking for silver linings every day.

Re: Clinical Trial Sorafenib/Erlotinib

Thirdone, I will drink "tea" to that one anytime. Wonderful news!

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: Clinical Trial Sorafenib/Erlotinib

Hi Kate,

My Dad is just on the two medications.  You can look up the trial he is on from this web site.  It's under "clinical trial".  As to how my Dad is doing, he's had some peeling & swelling skin around his fingers.   He's also had tenderness on the heels of his feet.  Additionally, he feels cold & is tired.  He also stated that he seems more forgetful.  He sees the doctor weekly for a blood draw.   Fortunately, he is out and about daily....living life.

Hi Bob,
Keep the prayers coming!  As you can probably imagine, when the doctors reviewed my Dad's file, they can't believe he's a survivor of 15 years.  I always thought that once he got past the 5 year mark, without cancer, he would be cancer free.  ( I don't know why I had 5 years in my head).  Anyway, the whole family has renewed their membership to the, "I hate cc fan club".  I am praying that God gives the doctors the wisdom to fight this cancer and He gives Dad another 15 years!

Re: Clinical Trial Sorafenib/Erlotinib

Wonderful, wonderful news.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Clinical Trial Sorafenib/Erlotinib

I have had cc for 5yrs, 5 months .It has never gone away. It has grown very slowly . I have numerous lesions throughout my peritoneal cavity. I started with a liver resection and several more surgeries removing ovaries, gallbladder etc. I have tried every chemo, I dont tolerate it very well. The sorafenib has been keeping it at bay for the past year or so. It grows a little , then shrinks a little. I have been having alot of abdominal pain, lower back and upper legs too.I thank God for giving me this time because I was told in the beginning that my lifespan could be a year. I am grateful for the time God has given me, but I am tired. My daughter is only 14 and I need to be there when she graduates. When I heard a couple of you were alive for 15 plus years, i was astounded. Thanks for the confidence building news.

Re: Clinical Trial Sorafenib/Erlotinib

Hello suzq104.....a warm welcome to you and congratulations to your five year plus five months success.  I agree with you in that long term survivors build confidence in all of us, and you are one of these people also. 
Thanks for joining in.  We love new members. 
Best of all 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: Clinical Trial Sorafenib/Erlotinib

Suzq,
You are a confidence builder for others on this forum as well. Kudos to you for being a five year survivor while continuing to battle cancer. Your daughter must be very proud of her courageous mother.

God Bless!

bob

Re: Clinical Trial Sorafenib/Erlotinib

I am so encouraged by your success at 5 years.  I, too, have young children, one daughter 12 and the other 11 next month.  I have been devastated to think of leaving them way too early, but am heartened by your story.  I go for my first post-op scan in a couple of weeks and am very nervous..hoping for good news.
Keep up your fight.  You are an inspiration.

Re: Clinical Trial Sorafenib/Erlotinib

Hi Thirdone, keep going with your Dad, another 15 years is just over there!

I have a question about the medications, Is your Dad having Sorafinib with Erlotinib at the same time or having one after another? If at the same time, are them be taken full dosage or only half of each?

Best Wishes

Chris

Re: Clinical Trial Sorafenib/Erlotinib

My mother is in this trial as well.  After first 2 months, today she was told the same thing as thirdone's dad at the beginning of this thread....it has shrunk a tad (3% they say)....she said dr's said +/- 1 inch is no change, but this does not sound right...I would assume 1cm.  Either way, no growth and has shrunk a little after first 2 months.  We will take that everyday!

Prayers go out to everyone still fighting for themselves or a loved one!  Proudly wearing my cholangiocarcinoma.com bracelet!

Re: Clinical Trial Sorafenib/Erlotinib

Hi Sidig and thanks for the wonderful report. Wonderful indeed! Hope to hear more good news as mom takes this journey.

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: Clinical Trial Sorafenib/Erlotinib

My mother just stared this clinical trial also, abiut 2 weeks ago. So far, she has no side effects from the pills.

Re: Clinical Trial Sorafenib/Erlotinib

Nicoles,

My mom did not start experiencing any side effects until after 2-3 weeks however what she has had has been "mild" compared to what they could have been with Chemo.  I am sure there will be up and down reports as we go however thus far she is still positive.  It took a while for her to get there however she is living her life and not dwelling on the future so much now that she is in the trial.....and had positive signs to this point. I pray your mom is being as positive.....it was rough in the beginning as she struggled to come to grips with so many unknowns with this disease.  Please keep us updated on her progress, I will do the same.

God Bless you and your mom!

Thomas

Re: Clinical Trial Sorafenib/Erlotinib

hi thirdone,
what is you dad cancer intrahepatic or extrahepatic? did he had a liver rescetion,im asking you cause my da had a liver resction 1 month ago and he is recovering very well,just wanted to know if he should have chemo or not??God  Bless your dad and all the patient and give tem power to fight the disease, best wishes,Mark

Re: Clinical Trial Sorafenib/Erlotinib

Is this the clinical trial you are referring to?
http://clinicaltrials.gov/ct2/show/NCT0 … amp;rank=1