Information for Cholangio Patients! Hi Guys!
This is information on all the appointments from, Mayo, MD Anderson and Dr. Lenz.
Mayo Clinic, MN
Dr. Greg Gores, Chair, GI and Hepatology 507-284-8700
At this meeting there was not a lot of information from him. He said the Gem/Ox and avastin I am on is a good treatment right now and that the cancer has been halted. Two things he said he has seen to work for CC patients is Therasheres (radioactive beads directed into the liver) and Gleevac (a oral drug). Other than that he did not have much to say.
MD Anderson, TX-
Dr. Katrina Glover, GI Oncologist (she works w/ Melanie Thomas)713-792-2828
This was an informative meeting with Katrina. She is a great communicator and is genuine and has a lot of encouragement to give. MD Anderson see's you on a Monday does alot of tests CT scan, chest x-ray, bloodwork) and then has the f/u meeting on a Thursday the same week. So the down side is you have to go there every two weeks for 4 days. She recommended I stay on my same regimen as well. She gave three different drug cocktails that could be used as 2nd line-
-Xeloda, Gemsar, Erbitux (this is the one she would have put me on first)
-Xeloda, Gemsar, Taxatere
-Gemsar,Cisplatin, Tarceva
She thought Theraspheres was NOT a good idea at this point. She said they see alot of CC and she said they do not know why anyone gets this disease but it is on the rise.
USC Norris Cancer Center-
Dr. Lenz, 323-865-3120
Dr. Lenz see's alot of CC patients. Mostly in there 40's and 50's. He has had a 22 yr old and a 28 yr old. Above anyone else I have seen he knows this disease the best. He is German and knows alot of what is going on in Europe right now. He is also heading up the Sorinafib trial right now (which Hanz is on). He recommended right off the bat to stay with what I am on but change the dosage and length of infusion. He recommends a two day infusion. Day 1 Gemsar (infused over 100 minutes) with Avastin (infused over 30 minutes). Day 2 Oxiliplatin 100 mg (infused over 2 hours) and Calcium and magnesium given BEFORE and AFTER for a 20 minute infusion. There is increased efficacy done this way (data from Europe). He also talked about 2nd line drugs being Sorinafib/Avastin or Sorinafib/Oxaliplatin. He said these drugs synergism each other. He also mentioned coming down the pike are drugs that have the VEGF recepor inhibitors from the BMS family. He also mentioned drugs like 5-fu and Xelodia as well as intaarterial chemotheraputic agents including microsperes.
He recommended coming back every 6 weeks for a CT scan and said PET scan are worthless.
He said, "Three years ago, Cholangio patients died. Now we offer hope and longevity
through the chemotherapeutic options.
I talked with a Natural Path last night and a few other things I am looking into are:
-Acidic vs Alkaline diet
-Mind body connection (your body wants to heal itself)
-imagery
-Accupunture (if on Avastin not an option)
-Diet
If you have any questions, e-mail vmccrea@gmail.com Luv you guys, Val
Mayo Clinic, MN
Dr. Greg Gores, Chair, GI and Hepatology 507-284-8700
At this meeting there was not a lot of information from him. He said the Gem/Ox and avastin I am on is a good treatment right now and that the cancer has been halted. Two things he said he has seen to work for CC patients is Therasheres (radioactive beads directed into the liver) and Gleevac (a oral drug). Other than that he did not have much to say.
MD Anderson, TX-
Dr. Katrina Glover, GI Oncologist (she works w/ Melanie Thomas)713-792-2828
This was an informative meeting with Katrina. She is a great communicator and is genuine and has a lot of encouragement to give. MD Anderson see's you on a Monday does alot of tests CT scan, chest x-ray, bloodwork) and then has the f/u meeting on a Thursday the same week. So the down side is you have to go there every two weeks for 4 days. She recommended I stay on my same regimen as well. She gave three different drug cocktails that could be used as 2nd line-
-Xeloda, Gemsar, Erbitux (this is the one she would have put me on first)
-Xeloda, Gemsar, Taxatere
-Gemsar,Cisplatin, Tarceva
She thought Theraspheres was NOT a good idea at this point. She said they see alot of CC and she said they do not know why anyone gets this disease but it is on the rise.
USC Norris Cancer Center-
Dr. Lenz, 323-865-3120
Dr. Lenz see's alot of CC patients. Mostly in there 40's and 50's. He has had a 22 yr old and a 28 yr old. Above anyone else I have seen he knows this disease the best. He is German and knows alot of what is going on in Europe right now. He is also heading up the Sorinafib trial right now (which Hanz is on). He recommended right off the bat to stay with what I am on but change the dosage and length of infusion. He recommends a two day infusion. Day 1 Gemsar (infused over 100 minutes) with Avastin (infused over 30 minutes). Day 2 Oxiliplatin 100 mg (infused over 2 hours) and Calcium and magnesium given BEFORE and AFTER for a 20 minute infusion. There is increased efficacy done this way (data from Europe). He also talked about 2nd line drugs being Sorinafib/Avastin or Sorinafib/Oxaliplatin. He said these drugs synergism each other. He also mentioned coming down the pike are drugs that have the VEGF recepor inhibitors from the BMS family. He also mentioned drugs like 5-fu and Xelodia as well as intaarterial chemotheraputic agents including microsperes.
He recommended coming back every 6 weeks for a CT scan and said PET scan are worthless.
He said, "Three years ago, Cholangio patients died. Now we offer hope and longevity
through the chemotherapeutic options.
I talked with a Natural Path last night and a few other things I am looking into are:
-Acidic vs Alkaline diet
-Mind body connection (your body wants to heal itself)
-imagery
-Accupunture (if on Avastin not an option)
-Diet
If you have any questions, e-mail vmccrea@gmail.com Luv you guys, Val
posted by McCrea Family at 9:35 AM
12 Comments:
Val,
What great news, it seems like you are on the right track. Between prayer, a natural path, and the right chemo agents.....you are on your way to stabilizing this growth. You are soooo strong!!! Keep up the fight. You are in our thoughts.
With love,
Beata, John, and all the Hughes boys!
Hi Val,
That is great! Looking into the PH Alkaline. I have read up on that and other natural things,chemicals in the body, so on. I think that is a great move on your part. Good Luck. It will probably make you feel better too.
Stay Strong,
Jamee
Val,
What valuable information. I just finished faxing it to our oncologist in Birmingham. We are still waiting to hear about starting the clinical trial involving DNA blockage of protein. I was wondering if any of the doctors mentioned this trial. I appreciate your sharing all of this knowledge. May God bless you and your family. I just know and believe that there are some miracles awaiting all of us.
Val,
We are so happy to hear about your encouraging news!!! Just to let you know that Gregg and I did some research in the years past with regards to Acidic vs Alkaline. Our bodies can be very acidic and "bad cells" can grow in an acidic environment. Kevin Trudeau is a nationally known author who has written a book called "Natural Cures...". He speaks a lot about changing our bodies from an acidic stage over to an alkaline stage. It is very interesting and truely makes a lot of sense. The Lord has put you in a position to be able to share all your research with other people who are in your same situation!!! How awesome is that!!! Gregg was wondering how Chris was doing with his back. Hope the exercises are helping him. God bless you and your family.
Colleen Cole
Val-
I am very happy you have received such great news. I pray the path you are on is the right one. I wish you encouragement and peace in this journey you are on. God bless you.
Hei Dee DeStefano
Val-
It was so great talking with you this morning! I wanted to let you know I spoke with a friend of mine who works for Genentech and sells Avastin locally. She shared some information on insurance issues. Give me a call when you have the time. I will be available all day Friday and over the weekend. Mattie is visiting this weekend with her little one. I can stop by if you're up for it or if you need ANYTHING, let me know!
I'm thinking and praying for you tonight as you travel to LA.
Talk with you soon,
Deanna
My thoughts and prayers are also with you tonight and tomorrow as you go back to LA for another infusion. I am so proud of you! You are so strong and knowledgable! I am so confident that you are gonna beat this, I just know it!! I feel it so strongly whenever I pray for you that I am just overwhelmed with emotions and praise each time.. A couple of days ago I was driving in the car, and just kinda having a converstion with my Father, it was after Chris Castillero shared her vision with you. I said to Him "You're gonna heal her aren't you.." I heard Him so clearly kind of smilingly saying "Yes I am!" It was so awesome.. Of course the enemy came and filled me with doubt, so I asked Him "is this really You, or just wishful thinking..?" He clearly said "It's ME! And through this you will share with the world that my healing power is the same today as it was 2000 years ago!" It was so awesome, I have never felt or heard Him so clearly before... He loves you soooo much, Val.. and so do all of us! You are an inspiration whether you believe it or not, for so many people. Just look at the counter on the bottom right of the blog.. Over 1000 visitors since Feb 10th! Wow.. God is using you in a mighty way, you are helping others with Cholangio, both by sharing your knowledge and by inspiring them to stay strong, and only our Lord knows how many hearts have opened their doors to Him by the messages they have received through this, messages of faith, hope and God's unfailing love.
Remember, He has promised you that He will not test you beyond what you can handle.. believe that Val, He will carry you through this!
I love you!
In Him,
Osil
Hi Val, I was looking forward to seeing you tonight just to give you a big hug! You weren't home when I delivered dinner - So, I gave the big hug to your mom. I also tried to give your baby boy a hug too; but, he wouldn't have anything to do with it!! He is absolutely precious!! I think of you and pray for your often -- Stay strong -- Love Lainie
Val...
You have been in my thoughts and prayers...I hope your trip to LA went smoothly!!! Reading your blog this morning just confirms what I have already be shown...God is working with you and through you my friend! You are on the right course...and I am so proud of you! Not to mention that I completely admire your strength...your courage...your tenacity...you have a glorious WILL!!! Without a doubt...you will be just fine!!!
Take care for now! We love you!
All our love,
Kerry Randall
Wonderful News, Val!
Louise Richards
Val,
I am thinking about you an sending a big hug your way. So glad to hear about your treatment options and success, you are in the hands of great doctors. More than one opinion is the best solution for optimal success. I was thrilled with the news - this is wonderful to know the drugs are working. You are so strong and wonderful to share this information with others. I hope your holistic remedies help as well, it makes sense to seek treatment from all angles.
I hope your trip to Los Angeles went smooth - I am praying for you.
Looking forward to seeing you.
Love,
Amy V.
Hello Val and Family,
Just wanted you to know we're sending hugs and kisses your way! Chad couldn't believe how big all of your boys are getting. Ryan has all the girls in the neighborhood chasing him already....
Love and hugs...
Frank,Jenny,Michael,Ashley,Chad,
Christopher and Sophia xoxo
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