lisacraine

Lovedad,

Welcome to our family. You are so wise to be doing research and asking questions on this site. There is so much experience right here and everyone is so helpful. Sending prayers for your Dad and your family.
Lisa

Rena,
I am so sorry for what your Dad is going through and your family. I am so glad to hear your Dad is home and will pray that he feels better. You sound like a wonderful daughter !
Hugs,
Lisa

Greynosa and Ginger, congrats on your wedding, I’m sure it was filled with love and emotions. I am sorry this is so hard on both of you, the caregiver job is tough, sometimes I think it is easier to be the patient. Sending prayers
Lisa

Eli,
Thank you for your research. You do such a nice job helping others….sending hugs.
Lisa

Eli, is there any effect on intrahepatic CC ?
Lisa

Age: 48
Gender: Female
Age when diagnosed: 46
Diagnosis and Stage: Intrahepatic CC- Stage 4
Initial CA19.9: 873
Lymph nodes involved? Yes, one in the gallbladder
History of cancer? No
Resectable? Yes
Had surgery (with details if applicable)? Liver resection in September 2010 removing over 75% of my liver. The gross mass of the tumor completely removed but could not get clean margins due to it being up against the portal vein so they burned an additional 3 mm. Second liver resection in August 2011 to remove two new tumors. This time they removed over 35% of my liver using surgery, nano knife and intraoperative radiation.

Liver transplant? No
Hospital: The Cleveland Clinic Foundation
Oncologist: Dr. John Fung(liver surgeon) – Dr. Bassam Estfan(oncologist) – Dr. Kevin Stephens(radiologist)
In remission (currently or was)? Yes, 14 weeks ago my scan showed the two tumors were dead and my CA 19-9 was 25.
Survived since diagnosis (years/months/weeks):2 years, 2 months
Chemo 1: 5 FU
Length (and/or number of treatments) of chemo 1: 6 months
CA19.9 trend during Chemo 1: trended down
Side effects Chemo 1: fatigue, nauseau
Chemo 2: gemcitibine
Length (and/or number of treatments) of chemo 2: 4 months and stopped because new tumors developed
CA19.9 trend during Chemo 2: increasing numbers
Side effects Chemo 2: fatigue, nausea, GI pain, aches and pains
Chemo 3: FOLFOX
Length (and/or number of treatments) of chemo 3:4 months then stopped because new tumors developed
CA19.9 trend during Chemo 3: numbers increased
Side effects Chemo 3: neuropathy, fatigue, nausea , hyper pigmentation, mouth sores
Advice for chemo:
Cyber knife? No
Radiation? Yes, steriotactic radiation, two different times
CA19.9 trend during radiation: initially went up as radiation killed off the tumors then decreased. The tumors were killed both times by the steriotactic radiation.
Chemoembolization? No
Radioembolization? No
Experimental treatments? No
Any other conventional treatments?
Alternative treatment? Acupuncture for side effects of chemo – very helpful
Use of supplements? Selenium, vitamin C, vitamin D, iron and omega 3-6-9
Special diet? Green juice once a day. Limited sugar. Very limited amounts of animal products. Very little dairy products. Mostly organic diet, about 80%. Green tea.
What worked for nausea (best)? Compazine
Biggest regret: not going to the doctor sooner
Best advice given to me: pray, stay positive, go to a specialist that treats many CC patients, get a second opinion, never give up hope.
Best tip/idea/recommendation: diet changes have really kept me feeling good. Post your status updates on caringbridge or a blog so you don’t have to call everyone anytime there is a change.
What would you have done differently? Gone to the doctor sooner
Current status: blood work and pet/cat scan coming up
Comments: research and stay on top of your illness but don’t believe everything you read.

Adam
Yipppeeee…no Cancer. I am so happy for you!!
I have had two resections with my last one August 2011 and my incision site still hurts plus the hernia is still there. They don’t want to do hernia surgery till I have a couple of clean scans in a row. I take ibuprofen.
Lisa