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Hello -right now I am living in a state of confusion. I had a CT scan in late December and an MRI last week at Johns Hopkins. Hopkins told me my tumor was stable, I had chemo radation since March. The CTscan shows multiple new lesions in the liver!
My numbers have been rising so I need to go on chemo again. I have not had any treatment since 3/14. I new I would go on Gem/Cis again.
I am feeling pretty good. I had a GI bleed and a paracentesis in November. My appetite is great and I am thankful for that. The interventional radiologist and my Onc. should talk this week.
Any ideas of what questions I should ask? I have a copy of the CT scan results and will get a copy of the Hopkins results soon.
Anyone ever had this before? Please write and tell me what happened.
Thanks to all of you in advance! Fondly, Johanna
I am so glad many of you are doing well with your treatments. Johanna
Hello Marion, Gavin, Lainy, Wallsm1,
Thanks for all your comments and suggestions. I have had no surgery because my tumor is considered non-resectable (it is in the porta hepatis). I do not have a stent – my bilirubin is 1.5. My CA-19 is 109. I take no pain pills and the pain is twinges and does not bother me at night.
I think I am going to take Marion’s suggestion and wait until the MRI. I am going to call Hopkins tomorrow-they may want to see me earlier. I will have blood work again on 11/9. I thank you for all your support and ideas for this issue. Sincerely, Johanna
Hello Tommy D,
I have stage 3 unresectable intrahepatic CC. It has been 11 months since my diagnosis. I have had gem/cisplatin. The only problem I had was I could not tolerate zofran (got a real bad headache). Zofran is given to prevent nausea, I took compazine instead.
I had no nausea, I was tired and rested whenever I needed it. I had blood work every week.
I wish your dad success with these drugs. Sincerely, Johanna
Hello Byron and Kris,
Thanks for your posts, it keeps me going. I am so mad at this cancer because I had to give up my job as a dean at a university because of the stress it was causing. I am lucky that my boss created a new job for me. I will retire this June, no matter what. I hope I feel good enough to do some traveling.
Kris-my tumor is in the porta hepatis and has not shrunk. 7 surgeons said no to surgery for me since the possibility of bleeding would be a problem. I am keeping on going to continue this fight against CC. Right now I am having trouble sleeping and was put on restoril.
Thanks for writing back-it means alot to me. Johanna
PS Because I am a nurse, I always said good health was so much more important than money and material items. Money can not buy you good health (just look at the former CEO of Apple).
Thanks for your kind words. My daughter just told me about a 31 year old young lady that had a tumor in her liver (stage 4 breat cancer). No drugs could help her. It is so sad. I am thankful for every day-but I still cry every day. I HATE not being in control. Life is not fair. Believe me, I am thankful the tumor is stable. Sincerely, Johanna
PS Gavin and CM thanks for your support also!
I had 4 weeks of radiation. I was tired-radiation is cumulative, no redness, no burning. Hope it goes as well for you as it did for me. Sincerely, Johanna
Thanks for writing back. None of my nurse colleagues had heard about CC. Maybe I will ask Hopkins about a support group.
Have you heard about anyone not having treatment for 7 month?
As always, thanks, Johanna
I cannot tolerate zofran so I take companzine. Have never been nauseated (knock on wood). Johanna
Sincerest condolences. Johanna
Thank you Lainy and Marions. Johanna
Andy-your story is very interesting. Hope your stent replacement goes well! Johanna
I had radiation in the hopes of shrinking my tumore because it is unresectable. I went everyday for 4 weeks (and oral chemo. (xeloda) along with radiation). I had no nausea becuase I took compazine before I had the treatment. I just became tired because the radition is cumulative. I was diagnosed Stage III B because of the size of my tumor.
I saw the radiation oncologist once a week during radiation. Hope this info helps you. Sincerely, Johanna
Katie-just a suggestion- I am not a doctor. If I remember your mom had her
chemoembolization at Hopkins.
Did you call the attending on call at JH? Did your mom have blood work? Did the ER staff take her tempature? Just a thought.
My first chemo-embolization worked very well. I hope she feels better. Johanna
I have been following your posts. It is great that your husband is feeling better. I hope he qualifies for the study. Sincerely, Johanna