Mayo Clinic
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Thanks Lainy,
I will prove Hopkins wrong! I will let you know all about Mayo. Thanks for all the positive vibes-I really need them. Sincerely, JohannaDear Johanna, now let’s get with the program!
You know we do not listen to statistics or what any hospital or doctor tells us is our departure date! We have proven them wrong time and again on this very site. I am most anxious to hear what Mayo says. Best of luck! I am crossing everything that you will hear some promising news.Hello Jamie,
I hope that I click with Dr. Quevada. I am going out to Mayo for another opinion next week. I live in Delaware so it would be impossible for me to go Mayo for treatment. My husband will accompany me, thanks for the offer to meet me. Also, your story really helped me. My oncologist here in Delaware calls me a “wildcard”. I am glad she has never said how long she thinks I will live.
I want to prove Hopkins wrong, they told me I had one to two years to live. I will let everyone know how my Mayo visit went. Please keep me in your thoughts and prayers.
Sincerely, Johanna
Hi Jamie! Just wanted to butt in here and say hello. So good to see you again.
I am also glad to hear of your progress and I have a very strong feeling you will do more than make the 5th year! Keep up the good work and enjoy your summer.Johanna, I was originally seen by Dr Quevada at Mayo in Oct 07. I did not “click” with him and changed Docs after a couple of months. I was also told that resection was not a possibility and that I was looking at months. I started on Gemzar/Xeloda and had a good response. In June 08 I had a 65% resection of my liver. Most surgeons wouldnt have tried but I was blessed to see Dr. Nagorney and he agreed to give me a chance. I went a year with clear scans but then it came back in my lungs. At that time the oncologist told me 6-9 months. This Oct will be 4 years since I was diagnosed. I have left Mayo and am currently being seen by the original oncologist I saw. I prefer his attitude and beliefs. He knows I dont want to give up yet and want to fight this and he is willing to fight for me. For me one of the most important things was feeling comfortable and trusting of my Dr. It may change along the way and I saw 3 different oncologists at Mayo. Each had their place in my treatment but when I felt I needed something different I wasnt afraid to move on. I am currently on Folfox and had a scan last Thur. Drs nurse called Friday to let me know it was improved but will get details at appt tomorrow. They have had to decrease dose and frequency because of low platelets. Do not give up the fight. My odds were dismal when I was diagnosed and told it was impossible when I asked about 5 year survival. I want to prove them wrong. All they can tell you is about statistics, but we are more than statistics. I have a strong belief system and believe that God is the ultimate healer and will determine how many days I have in this world. If you want anymore info about Mayo or just would like to chat, feel free to message me and I can give you my number or we can email. Also, if you would like to meet when you are at Mayo let me know when you’ll be there. I live about an hour north of Mayo. Take care and keep fighting!!
God Bless,
JamieJohanna, Attiitude is what it is all about. I am a CC survivor, I am 2 years cancer free. I am alive because of a liver transplant. My clinical trial was developed at Mayo, I was not a candidate for resection because of location, this was my only hope. My doctor is Dr. William Chapman at Barnes-Jewish in St. Louis MO. Dr. Chapman helped develop this trial. Please discuss transplant as an option, because Mayo believes in this as a cure as most doctors don’t. I am a miracle and Dr. Chapman credits Gods work before his!I was diagnosed in July 31,2008, my first question to Dr. Chapman was would I see my daughter graduate from college and he said I would, on May 9,2010 I did!! Please read my story at thetelegraph.com under Christmas miracle, it is so full of HOPE. I was told 6-8months, 2an half years ago!!!
Lots of prayers-CathyKathy you are such a love and you are so right about everything! Let’s not forget also that your wonderful attitude helps as well. You say it all so beautifully. Best wishes and hugs to you!
Johanna,
I know resection is the goal most people strive for in fighting this cancer, but this cancer is so unpredictable. I have lived as long or longer as many who were able to have surgery with inoperable cc. Although I was told 3-14 months max, I’m almost 2 years out now and still feeling good (symptoms of jaundice and itching started June 09, diagnosed July 09).
What I’m trying to say is if you cannot have surgery, hope is not gone. Unpredictability can work in our favor. Since I am not resectable I guess I need to feel this way to have peace about it.
What I have personally done is chosen God for my main physician. I am relying on Him to open up treatments and block treatments. I feel this is why I am still a survivor. Only He knows the best plan for me.
People also tell me how strong I am and what a good attitude I have and they think this is why I am doing so good; but I am also weak and have many times of feeling sorry for myself. I tell my husband that tears are good for they get rid of toxins from the body. Don’t know if that’s fact, but it works for me
Take care.
God bless.
KathyHello Lulu,
Thanks for you kind words. I say I am strong-but I don’t know. I have cried everyday since I received this diagnosis. I am so angry. I can’t imagine not being here for my husband and daughter. I know we will all die but I have to many plans for my life.
By the way, I see where you live. I live in Delaware and have a home on the NJ shore (originally born, raised, and educated in NJ.
I wish I could have a resection. Take care, JohannaJohanna…I love your attitude..I’am a 18 month survivor of CC..I did have hepatectomy of my right lobe…and resection..you are my kind of girl..never give up! You will be in my thoughts and prayers!
Johanna,
I go to Mayo and I’m very pleased with the doctors, staff and treatment I’ve received. Their professionalism and skills are outstanding. I receive my test results the same day. Testing first and doctor appt. later the same day. Very efficient.
In oncology I do not know Dr. Quevedo as I see Dr. Bleeker who is actually a fellow.
Since you have an appointment, you have a Mayo number. When you are registered you can go online to view statements, appointments and lab work. I especially like to see my labs online (same day). You do have to send them a signed with notary paper to validate online viewing before you can do this, but I think I presented myself to the business office in person for validation. Instructions will let you know. https://www.mayoclinic.org/_portal/html/C/index.html
I’m sure there are doctors there I would not click with, but I’ve not met one.
God bless.
Kathy
Hello Everyone,
I have an appt. with the Mayo clinic in Rochester the last week of June. I have intrahepatic CC-I have been given no hope of a resection, this really bums me out. (5 surgeons have told me no resection)
I was suppose to have my second follow-up appt. (MRI) at Hopkins for the chemo-embolization I had in March. I developed shingles Sunday and luckily I caught it early. Hopkins told me they consider me contagious for 10 days. I willl go to Hopkins on July 5th.
Does anyone know a Dr. Quevedo-this is the oncologist I will see at Mayo?
What is Mayo like? What questions should I ask besides the treatment they will suggest?
I am anxious to go but I am also scared. Dying is not an option for me-I am a fighter. Any advice will gladly help. Thanks, Johanna
PS Wishing you all the best!
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