kris00j
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She said she has no baseline. And she’s nervous because of the sac of bile in my abdomen. She connected my hospital stay to my last chemo even tho all I got was gemzar. It’s frustrating…
I put it on Facebook. All of my friends know what this is called, even if they can’t pronounce it.
But I do have to say: let’s get the word out for cc awareness month. I will not say “happy” nor will I celebrate it. I’d much rather not have had the need to visit this site, and wish no one had to hear of it ever. I feel the same about all cancers and major illnesses: it’s too bad some people have to experience it.
I have emailed with Stacie: if I get the brochures in time, I have another Sloane Kettering appt. on the 13th. I will put some out in the waiting room on both my Dr.’s floors.Kris
My surgeon said the tumor probably started about 9 months before it was found. I finally went to the dr. with pains radiating around from my back to my chest. She said it was classic gall bladder symptoms. I had had 3 previous attacks, but went to the chiropractor as I thought it was my back bothering me again. Adjustments must have dislodged the gallstones, because until the last attack, the pain stopped immediately after adjustments.
I had had the pains for about 2 or 3 years, and sometime after the 4th attack my gall bladder collapsed. That’s how bad it was. But I didn’t have bad gastro problems, nor bad pain very often. No itching or jaundice or any other symptoms.
About a year before diagnosis my ex-husband and I separated and started divorce proceedings, so I was under a lot of stress about the time the tumor started, if Dr. Fong’s guestimate was correct.
KrisI don’t know about how much they are linking alcohol to this disease, but I will say that alcohol weakens the liver. I drank pretty often, but many times it was a glass of wine with dinner. My first surgeon called me an alcoholic and told me I have cc because of that. I never considered myself an alcoholic, but I definitely didn’t abstain either. Until March of last year.
I don’t think they really have a handle on what causes this cancer, except for the river fluke, which since I don’t even eat sushi, I can pretty much say I never came in contact with. But I do think that drinking might aid in the speed with which the tumor(s) grow.
KrisMy treatment is mainly at Sloane Kettering in New York City. My surgeon is Dr. Yuman Fong. He took out my gallbladder and cleaned up “stuff” and implanted the liver infusion pump in April 2011. My next surgery is probably mid or end of March 2012.
My main oncologist is Dr. Nancy Kemeny. We’ve had our share of problems with systemic chemo (can’t take the oxaliplatin anymore) and the pump (had 3 embolizations before we could finally use it). Plus blood infections, etc. I haven’t had chemo since Nov. 2011 and want 1 or 2 more before my surgery to try to shrink the tumor some more. It was still shrinking as of Dec. 30, 2011 so hopefully it’s still getting smaller. I’ve received the gemcitabine/oxaliplatin cocktail plus FUDR thru the pump.
I also go to Princeton when I don’t get chemo in the pump. My oncologist there is Dr. Richard Lee. The oncological staff there has been trained by Dr. Kemeny’s staff in the pump and can remove liquids/add saline only. So I only go there when I’m not getting long term maintenance or chemo thru the pump.
My resection is not yet scheduled. I’m hoping for sometime in March. That gives me a bit over a month to prepare for it and get my parents up to PA so they can care for and worry about me up close and personal. I’m praying it’s successful!
KrisThey gave me Levaquin as part of my broad spectrum antibiotics everytime I had a blood infection, also. It seems to work wonders.
While I agree that all of us living with this diagnosis can consider ourselves survivors, I think we should maybe start at the point where chemo, radiation, surgery or some other treatment has “eliminated” the cancer for at least a given amount of time. Maybe 6 months? Or a year? That, to me, would be a “REAL” survivor story. I don’t consider myself a survivor yet: I am a cancer patient who hopes to be a survivor soon.
Kris Jacobson. 48 years young. Birthday in June. Born in Minnesota. Have lived in many states. Now just outside of Philadelphia, PA. I was diagnosed March 2011. I travel to Sloane Kettering in New York City for treatment, and occasionally to Princeton, NJ. I had surgery April 2011 to install hepatic pump. My surgeon says I can have surgery now to try to remove tumor. My tumor is still shrinking so I want to try for more shrinkage for about another month then resection. I am divorced (pre cancer) with no kids and have a semi-serious boyfriend who didn’t run. I worked in Advertising until I was laid off after my diagnosis. Currently on disability.
I would love to have an entire section for “survivor stories”. I for one can’t wait for 6 months so I can post on it. I think the stories that say how long you are a survivor and basic information are great to read. They give me hope. But they are hard to find sometimes, so I vote YES for a new section for these stories.
I will be doing the American Cancer Society Relay for Life again this year (my 7th year: 2nd as a cc patient). This year I asked if anyone in my team minded if I put out brochures for cc. They all said it was fine. So I will be ordering them for June. I also think I’ll ask at Sloane Kettering if I can put brochures out on some of the tables for new and existing patients, since a good number of patients in the waiting room are cc patients.
