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

Hello Everone,
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 Everyone,
I have not written for a long time. Wednesday was my one year anniversary of being diagnosed with CC.
About 3 weeks ago I noticed my abdomen above my umbilicus (navel) bloated. I could not comfortably button my pants. I went to see my oncologist in Delaware who did not lay a hand on me say "pts. with CC usually don't get swelling there. Your labs are stable."
Well, I was not too happy. I am not blood work-I am a patient with a horrible cancer. I should be examined.
So, I went to my Hospital of the Unviversity oncologist (I will be transitioning to her when I move to NJ). Anyway, she felt my abdomen and believed I could have some fluid in it so more blood work and an ultrasound was ordered. Now I know an ultrasound is not the greatest test but what was explained to me is I have very little fluid in the abdomen and no huge tumor noticed. Yesterday, my HUP oncologist told me-she said something is going on but doesn't know what. I did have a CEA 125 drawn and it has doubled in 2 weeks. Anybody have any ideas?
I will go to JH on 11/15 for another MRI. I have some pain on my right side which seems to get worse at night.
Any thoughts would be helpful. Thanks and I think of you all when I read your posts. 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

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

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).

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

Hi Kris,
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!

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(8 replies, posted in Introductions!)

Hi Amy,
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

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

Hi Lainy,
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

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

Hello Everyone,
I thought I posted this but I don't see it on the site. I went to JH for another follow up MRI on September 13th. My tumor is stable.
I have not had any treatment for CC since I had the Chemo-embolization on March 13th.
My bilibrubin is started to creep up (1.3) it was always normal. I know this sounds weird but it feels funny not having treatment.
I don't have any symptoms, just need a nap in the pm.
I do go back for another MRI in November. I don't post all the time but I read everyone's comments. Alot of times, I just sit here crying.
9/26 will be 11 months that I have been diagnosed with unresectable intrahepatic CC stage 111 b.
I wish there was a support group for CCC. I do go to one but not specifically for CCC. I have a great amount of support at home and at work.
I hope everyone is having a good day! regards, Johanna

I cannot tolerate zofran so I take companzine. Have never been nauseated (knock on wood). Johanna

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(16 replies, posted in In Remembrance)

Nancy,
Sincerest condolences. Johanna

Thank you Lainy and Marions. Johanna

Hello Everyone,
I went to JH today and had an MRI of my liver. I had one chemo-embolization in March. My tumor shrunk a little bit-it is considered stable. I was happy with the results today.
JH will not perform another chemo-embolization on my liver unless the tumor grows.
Johanna

Andy-your story is very interesting. Hope your stent replacement goes well! Johanna

Hello Susie,
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

Dear Mary,
I have been following your posts. It is great that your husband is feeling better. I hope he qualifies for the study. Sincerely, Johanna

Gavin-thank you for finding this article. I am going to share this with my NP. She had never heard of CC. Take care, Johanna

Hi Katielinn,
I hope your mom is doing better. Lourdes gave you a lot of good info.
I drank many shakes my husband made me. The PA at Johns Hopkins told me it does take some people 6 to 8 weeks to feel better. I hope that your mom feels better soon-the procedure is definitely worth the aggravation of not feeling like yourself. Johanna

Hello Just_Jill and Lainy,
I agree that a much bigger sample size is needed. I also believe that qualitative research needs to be completed on CC.
I hope I am way above average  for survival with this cancer.
Johanna

Thank you Lainy. I will pay for it if I have to-it is my life. You are always there for everyone-it is so much appreciated. Thank you, Johanna

Hi Everyone,
I have BC/BS of DE traditional insurance. They are denying the need for a PET scan. Has BC/BS paid for PET scans? Please let me know those of you who have BC/BS.  Thanks, Johanna

Hello Katielinn,

I have had only one chemo-embolization-it took me one month to feel good. I lost 15 pounds.
As far as your mother's exhaustion-I had that also. I did develop cholangitis. I had chills and icterus (yellowing of the eyes).
What do the whites of your mom's eyes look like?
Just a suggestion, I would not wait to call the doctor your mom may need some stat bloodwork today.
Where was the chemo-embolization done?
Johanna (retired RN)

PS The good news is that more than 50% of my tumor is dead. I hope your mom feels better soon! Tell her to hang in there - she will feel better. My treatment was in March and it is still working on killing cells.

Thank you Heather for posting that wonderful news about your dad. It helps me when I am feeling down. Wishing your father continued good health news! Sincerely, Johanna