betsy
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Hi Mary,
Wow – thank you so much for your post. I really, really appreciate it. The last time I had a stent was in May 2009. If my radiologist does anything, it will probably be a cholangiogram (blah). I had stents and drainage bags from Feb. 09 – May 09. That’s interesting to know about MRIs compared to PET scans.
I know I need to pick up the phone more often and just call my doctor and ask questions. He gave me his cell phone number and said call anytime. I just have to do it. Maybe I’ll try email like you.
So sorry to hear about the struggle your sister-in-law is going through. My goodness – I’m glad to hear she pulled through the weekend. I don’t remember if I mentioned this already, but all of my doctors are at the Cleveland Clinic. If you don’t mind me asking, who is your sister-in-law’s oncologist? I had a consultation with Dr. Pelley at Taussig re. chemo/radiation.
I don’t know – do you think the Dragster at Cedar Point compares to this ride?
Betsy
Hi Mary,
Well, based on the MRI I had a couple of weeks ago, the bile duct was partially obstructed but my doctor wasn’t too concerned and didn’t see anything “remarkable.” When I saw him yesterday, he said he can’t say for sure what is causing the obstruction but that for now, he wanted me to see the radiologist and continue with labs. My bilirubin count is well within normal range and my liver enzymes continue to fall, also tumor marker blood check is negative (when I was diagnosed with CC, all of my numbers were elevated and tumor marker test was positive.) He did schedule a consult with my interventional radiologist next Wednesday and I will definately talk to him about the PET scan.Who the heck knows. I get so confused trying to keep the facts straight and then to make matters worse, I add my own drama by trying to read between the lines. I also feel like I’ve gotton all of my questions answered, only to come home and think of 20 new ones to ask. Leaves me freakin’ and geekin’ most of the time!
Betsy
Hi Guys,
Thanks for your posts. I did have an MRI a couple of weeks ago to “image” the blockage. At the time, the doctor said there was nothing “remarkable” about the MRI and to have my CAT scan done in October. So, I’ve had a CAT scan and an MRI in the last 4 weeks. My surgeon said because everything else looks good, i.e. blood work, weight gain, no jaundice, he was o.k. with waiting until my next scan to determine if anything needs to be done. I am seeing my interventional radiologist next Wednesday for a consult re. the blockage and I will ask about the PET scan. Haven’t had one since last December. Does anyone know when the tumor starts to change liver enzyme numbers? Its seems to me I remember reading somthing about the tumor having to be a certain size before it starts to change liver function.
Betsy
paa,
thanks for your post. Your sister’s surgery was at John Hopkins, right? Mine was at the Cleveland Clinic. The oncologist I saw said he wouldn’t recommend chemo/radition since I was cancer-free but I’m wondering if I should get a second opinion? Did your sister get a second opinion? How’s your sister feeling these days? Also, did your sister have any health issues before being diagnosed with CC? I have Celiac and was diagnosed with it about 2 years ago. The doctors think that was the same time my tumor started to grow but can’t see how the 2 could be related.Betsy
Hi Val,
I was wondering if you were able to find out what was the causing your itching? My itching was constant and not like a rash or hives. My ALT number has remained high but all of my other numbers are good. I go for my 3 month CAT scan and labs next Wednesday. I’m hoping my liver enzymes remain the same and that I can continue treating the partially blocked duct with medicine rather than another stent. I’m so glad for you that you have “cleavage” once again….truly something to celebrate!
When did you have your surgery and was it a liver resection? Mine was Jan. 5th 2009.
Betsy :cool
Hi Kris,
I feel so bad about your time in class. I’m sending you a big hug from Cleveland, Ohio! I hope the Chinese food helped. You know my prescription to a bad day…..climb into bed with the TV remote! Escape from reality for a while.
Betsy
Hi Donna S,
I had stents for several months following my liver resection. Mine were plastic and attached to an external bag. I was quite yellow when the stents were first placed. From Feb. to May I struggled with the stents. I kept having high fevers, chills, weight loss and hair loss (due to poor nutrition). In my case, the stents caused more problems than they solved. Even though my bilirubin numbers were high, my surgeon had them pulled in May and my count has improved to where they are now normal. Go figure!
Also as a side note, after many failed attempts to correct my stents, my surgeon was frustrated with the Interventional Radiology department and went to the Director of Interventional Radiology for help. The Director was able to fix my “plumbing” and has become a huge support to me.
Hang in there!
Betsy
My liver resection was performed at the Cleveland Clinic and my surgeon was and still is, Dr. John Fung. He is the Department Chair of General Surgery at the Cleveland Clinic and was the former Chief of the Division of Transplant Surgery at the University of Pittsburgh. For appointments the number to call is 216-444-3776. http://my.clevelandclinic.org/default.aspx
Dr. Fung is a remarkable surgeon. He took amazing care of me and got me through the darkest time in my life. Although he would be totally in his right to have a huge ego, he doesn’t. Can’t say enough positive things about him.
Just a note about the Cleveland Clinic….it is a HUGE teaching hospital so there are “teams” that take care of “pieces/parts” of a patient. During my 21 day stay at the Clinic after my resection, I was really frustrated at the lack of communication between the teams.
Thanks so much for your quick response. I’ve been on this website since my diagnosis but never had the courage to get involved. The statistics about this type of cancer are frightening to say the least. But I’m finally starting to have some good days where I can feel positive and calm. However I still have those days where I retreat to my bed, watch TV and assume the fetal position!
