(19 replies, posted in Good News / What's Working)

@Matt: My father is being treated at Cleveland Clinic. We absolutely love his doctor and the treatment he recieves there. Any doctor who leaves their family at a drop of the hat for you and calls you to see how you are doing is one in a million and that is exactly what our doctor is. I agree with the last comment about the spheres. My dad's doctor introduced us to am amazing doctor at the Cleveland Clinic that administered and treated my dad with the SIR-Spheres micospheres on top of the Gemzar and Oxaliplatinum and it is working out very well. The doctor who administered the spheres and his staff are amazing too. Both doctors and their staff talk to us weekly and always are happy to answer any questions.

I am not sure how long of time intervals that you can stay on a certain type of chemotherapy. However, I do know that the chemotherapy stays in your system and keep working for almost 6 months after your last treatment. I have a notebook that I take everywhere and write my questions that I want to ask the doctors before each visit. I hit them with questions like rapid fire, but they have come to learn that they better come prepared to answer some questions each time. My dad's doctors expect questions everytime now and even make jokes when I do not ask questions now because they enjoy patients being on top of things. A great doctor appreciates patients and friends and family of the patients who care and ask questions. Keep asking questions and remember knowledge is power.

I wish you and your family the best of luck.


(19 replies, posted in Good News / What's Working)

@ Matt (mvbittner): My father who is 53, is on the Gemzar and Oxaiplatinum and the combination is duing wonderful things for him. He is very young like you. Oxaliplatinum does come with a lot of side effects and causes a lot of numbness the more you are given it. How often are going to receive the Oxaliplatinum? Make sure you are very honest when experiencing numbness because they might hold off on using that on different weeks. That type of chemo also makes you very sensitive to hot and cold things. We keep a pair of gloves on top of our refridgerator(sp?) for my dad when he gets things out because of the tingly feeling it gives him. It is like hitting your funny bone, but only it can be a constant tingly feeling and is not so funny either! :-)

I am not sure about the Xelodin chemotherapy because my father has not used that one. My best advice is to research them both to find out their side effects and to learn what to expect from treatment. I always research and read about my dad's chemotherapy to be able to help him and understand the side effects he experiences.

I wish you and your family the best. Let me know how your new treatment plan works out for you. If you have any more questions feel free to find me on here. :-)


(19 replies, posted in Good News / What's Working)

@ Katja: The doctors believe that is a combination of the two right now. We will see more results in November when he gets his three month scans to see how much more the SIR-Spheres have shrunk the tumors. I am keeping my fingers crossed and staying positive. In my opinion based upon the latest scans, the SIR-Spheres have significantly helped.

@ Everyone: Thank you for all of your kind words everyone. I really appreciate them and love hearing your feedback.


(22 replies, posted in Introductions!)

Welcome! :-)

Here are some tips for you:
*Always get a second opinion and make sure that you have a doctor/team of doctors that you trust. I take my father to Cleveland Clinic and to a local cancer center near his home and we've had great success. We went for a second opinion in Pittsburgh and were not happy at all with the doctor and his eagerness to help my father.

*Research everything! I always constantly research everything that his doctors tell us and prescribe him.

*Keep a notebook with notes from every doctors visit, document everything while staying in the hospital (i.e., every medicine administered, everything doctors report to you, etc.), keep all test results, and list all doctors used during your treatments and how to contact them. My notebook is growing constantly, but every doctor I meet says you are the girl I've heard such wonderful things about and I can't wait to see your notebook.

Best wishes to you and your family!


(19 replies, posted in Good News / What's Working)

My father was diagnosed with cholangiocarcinoma on January 21, 2010. They originally found two lymph nodes affected, lesions on his diaphragm, and one tumor that measured 7.5 cm. They removed one of the lymph nodes during exploratory surgery and told me that his tumor was unresectable.

He has been receiving Gemzar and Oxaliplatinum chemotherapy every week since. We have been using this therapy because the tumor is unresectable.

In August, he received a treatment of the SIR-Spheres micro-spheres. The one month scans show that the lesions on the diaphragm are gone, the one lypmh node that was remaining after surgery is now .5 mm and not worth mentioning anymore, and that the one tumor is actually two small tumors that are shrinking! One tumor has already shrunk about 1 cm!

We are so grateful for this news and blessed to have such a great team at CC! :-)

Has anyone else had luck with the Sir-Spheres?