jladams

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  • July 7, 2011 at 9:26 pm in reply to: My Johns Hopkins Visit #51504
    jladams
    Member

    Thank you Marions! Johanna

    July 7, 2011 at 9:06 pm in reply to: General Information about CC- a reprint from previous message #51479
    jladams
    Member

    Dear Percy,
    Have you read if unresectable ICC always metastasizes? I have had 3 doctors tell me “no”and 2 doctors tell me “yes”. Thanks, Johanna

    July 1, 2011 at 7:23 pm in reply to: My visit to Mayo #51354
    jladams
    Member

    Hello Kathyb and Lainy,

    Thanks for your input. I did have 20 radiation treatments along with xeloda with no tumor shrinkage that is why I opted for chemoembolization instead of cyberknife right away. I hope Tuesday’s MRI at Hopkins shows more tumor death. I have my fingers crossed. Hope you all have a wonderful 4th of July. Regards, Johanna

    June 25, 2011 at 4:42 pm in reply to: English newcomer #51174
    jladams
    Member

    Hello Nica,
    The tip of my port actually bent and I had it taken out, I will get another one put in when I need chemo. I have learned to only let the infusion nurses access the port where I receive treatmtent. Blood was not drawn from my port. Nica-I hope you will like your port. Sincerely, Johanna

    June 21, 2011 at 4:53 pm in reply to: Mayo Clinic #50939
    jladams
    Member

    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, Johanna

    June 21, 2011 at 12:18 am in reply to: Mayo Clinic #50940
    jladams
    Member

    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

    June 18, 2011 at 2:16 pm in reply to: Odds of resection after Chemo/Radiation #51000
    jladams
    Member

    Hello Peter,

    I hope your dad gets his resection. I saw Dr. Pawlik (?spelling) at Hopkins. My tumor is much bigger then your dad’s and also wraps around the artery and vein. Dr. Pawlik told me he could not do a resection, instead I was offered chemo-embolization at Hopkins. I have had one chem-embolization and after the first MRI, the radiologists notice that my tumor had some death. I am due for the second MRI July 5th to see if there is more death. I am hoping it moved away from the vein and artery.

    I am going to the MAYO clinic in Rochester the last week of June to see what other treatments there are for CC. Medicine is not an exact science so I am willing to go to anyone who will help me kick this disease. To my knowledge, my CC has not spread.

    Wishing you all the best at Hopkins. Sincerely, Johanna

    June 17, 2011 at 12:31 am in reply to: Mayo Clinic #50935
    jladams
    Member

    Hello 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, Johanna

    June 16, 2011 at 10:44 pm in reply to: Mayo Clinic #50933
    jladams
    Member

    Hi Kathy,
    Thanks for the advice. I really appreciate it! Sincerely, Johanna

    June 11, 2011 at 5:35 pm in reply to: Brittle Nails #50785
    jladams
    Member

    Thanks for your advice. I should have mentioned that I finished the xeloda in Feb this year. I go for blood work on Tuesday. I wonder if the brittle nails are related to low protein. Thanks again, Johanna

    June 9, 2011 at 11:41 pm in reply to: Chemo or Not #50817
    jladams
    Member

    Hello Again,

    I feel the need to introduce myself again. I was diagnosed with CC on 10/26/10 (unresectalbe intrahepatic).
    I have had 6 treatments of gem/cis and 4 weeks of radiation with xeloda.
    I was suppose to have cyberknife but just did not feel comforable.

    I made an appt. with Dr. Pawlins at Johns Hopkins (he said no surgery). I then had a chemoembolization treatment by Dr. Geshwin (I had a very long recovery with a hospitalization at Christiana in Delaware for a high bilirubin).

    I had one MRI at Hopkins that showed some necrosis of the tumor. The next follow up appt. for an MRI is June21st.

    I just made an appt. at Mayo Clinic in Rochester with a Dr. Queveda in medical oncology.

    I refuse to roll over and lay down and die from this cancer! The interventional radiologists at Christiana Hospital did not want to give me chemoembolization because they said “it would not help”. Well, they were wrong.

    I want to live, I am 59 years old. Any other suggestions from you wonderful people would be helpful.

    PS My blood work is good. My C 19-9 was normal until I have the chemoembolization.

    Thanks in advance for your help. Sincerely, Johanna

    November 7, 2010 at 9:44 pm in reply to: Chemo #39802
    jladams
    Member

    Thank you Kate. Johanna

    November 7, 2010 at 9:40 pm in reply to: Liver Resection #43547
    jladams
    Member

    Hello Jenny,
    The surgeon I saw at Penn was Dr. Giorgos C. Karakouis. A very young surgeon. He said he would consider operating if my tumor shrunk away from the porta. I am hoping for the surgery! Sincerely, Johanna

    November 7, 2010 at 5:33 pm in reply to: Chemo #39800
    jladams
    Member

    Hello,
    I have been looking up the chemo drugs gemzar and cisplatin. Has anyone had reduction in tumor size with this combination? I could not find that out.
    Thanks, Johanna

    November 6, 2010 at 11:53 am in reply to: Liver Resection #43543
    jladams
    Member

    Hello All,
    I went to U of Penn on Tuesday for a second opinion. I really like the oncologist and the surgeon spent one hour with me. The surgeon wants me to go through chemo first and then reassess the size of my tumor. The oncologist did offer me a phase 2 clinical trial but I opted for the standard protocol.
    I had a lung CT yesterday, of course I don’t know the results yet. I start chemo on Monday.
    Thanks for all your help on this site. I have my boxing gloves on!!!
    Sincerely, Johanna

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