Topic: Hello from a new member

Hello everyone,

I am 58 and was diagnosed with stage 4 metastatic ICC in August 2011 with mets to the lungs and ovaries.  I live in Austin and receive chemo at home but my doctor is Dr. Javle at MD Anderson. I have a plastic stent that I have exchanged every 2-3 months.  I was on Gem/Cis from Sept 2011 -Jan 2012, radiation and Xeloda Feb-March 2012, and back on Gem/Cis since August 2012.  After radiation I had a complete response in the liver, lungs unchanged but increase in size and SUV of the left ovary.  Originally I had increased metabolic activity in the left overy worrisome for metastasis.  The scan in May after radiation showed the left ovary measured 3.9 x 3.5 with SUV of 6.5 and mild uptake in the right ovary. The scan in August showed 3 new spots in the liver and both ovarian masses had increased in size and SUV.  I have asked about having the ovaries removed since the beginning but Dr. Javle said surgery can cause the cancer to spread more and they had not increased that much.  My Austin oncologist thought they should come out and I went to see a surgeon who also thought they should come out but I went with Dr. Javle's recommendation to leave them alone.  I had a scan a couple of weeks ago.  Liver is stable to slightly improved.  Left ovarian mass still increasing and right is basically the same.  Dr. Javle discussed my case with the team and he now says it is up to me if I want to have the ovaries removed.  He said if I was having pain and symptoms he would definetely say have surgery but since I'm not he now says he does not have strong feelings either way. Everyone thinks it is metastasis and not an ovarian primary but no way to know for sure without taking them out. Now what am I going to do?  They obviously are only going to continue to grow and possibly cause pain and problems but as he said, a hysterectomy will not change the overall outcome.  I have chemo Friday and will discuss again with my Austin doctor.  I have an appointment to see the surgeon the 13th.  I am very frustrated and would love to hear your opinions.

Other than chemo fatigue I have been doing very well and continue to work except for taking a few days off for chemo.  My latest CA 19-9 is 47.5

I have been reading the boards for a while and I know joining will provide me with lots of support!

Suzy

Re: Hello from a new member

Suzy....welcome and thank you for joining our site.  You are so very right in that plenty of support is heading your way and I am sure that others will chime in real soon.
Regarding the removal of the ovaries, I feel that much has to do with your overall feeling of well-being and whether the ovaries can be removed laparoscopically.  You are not experiencing pain at present and who knows whether much more growths will occur.  Given the circumstances, I would leave it alone and give it a bit more time. But of course, this is my opinion only.

Like you I am looking forward to hearing from the others also.

Again, so glad that you have joined us.

Hugs
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello from a new member

Hi,
I do not have ovaries but I am a  patient of the same  disease for 45 months and  I am also a caregiver to my sister-in-law who passed away not long ago of extrahepatic cholangiocarcinoma. From day1 to the last day during the entire 16 months journey,I was her medical person who read all her CT scan reports and labs and suggested questions for her to ask the doctors.
Yes, cholangiocarcinoma  can metastasize to the ovaries and the the speed is relatively fast based on the experience that I had with my sis-in-law.

since I am not a doctor but  just a patient and a past caregiver, I will stop here and let you decide what you should do after you meet with the surgeon. The key question to ask the surgeon  is to weight on the benefit of removal the ovaries  and related structures against the possibility of spreading the disease because of the surgery. Deep down in my heart, I may have already known what you will choose but you just need the confirmation of the surgeon's opinion and I think it is  smart to do so.

BTW, what was the CEA and CA19-9 level when you FIRST diagnosis as having cholangiocarcinoma?
Good luck and
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Hello from a new member

My original CA 19-9 was 92; CEA 2.4

My CA 19-9 got as low as 36 the first time on chemo, went back up to the high 50's and is now coming down again.

Suzy

Re: Hello from a new member

I am having surgery the 26th to remove the ovaries and probably the uterus. It will be a laparoscopic procedure and the plan is to start back on chemo March 8.  As the ovaries are the only area not responding to chemo, all the doctors believe they should come out and hopefully chemo will continue to keep the liver and lungs stable.  As far as I have seen, no one on the boards has been in this situation so that is a little scary but I think it is the right decision.

Suzy

Re: Hello from a new member

Suzy I would have made the same decision. Why have to worry about an area that may not get better. Out with it! laparoscopic is good, been there done that.
WHAT? Percy....no ovaries? Sometimes you crack me up!
Suzy seriously with this decision you will not look back and wonder should I have? As for Dr.Javle he is one of our heros and you are with a great team of Docs.  I know you are going to be very tired but please try to let us know how all went. Sending you the best I have in prayers and thoughts, it is going to be good, I can just feel it.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello from a new member

Hi, Suzy,
I am sure you have made the right decision. Good luck on both surgery and recovery.

Lainy,if I can crack you up with a smile, I will do it all the time. I hope everything is going your way.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Hello from a new member

Hi Percy. Thanks I am doing so much better. I don't like to post my trials but guess I should do an update it could help someone else with Ulcerative Colitis. I ended up in Emergency at the Hospital Teddy and I always used...nothing like coming home where you belong and to the GI we used, the one who found my Cancer 3 years ago.  They checked me in as I was literally starving to death. Had not had anything but water for a month and that came up! For 6 NTS I was on an IV of Potassium and Magnesium and 60 mg of Prednisone.All I was doing was dry heaving and they were talking TPN which I did not want. That Monday night I fell asleep at 9PM and thinking about having the BIG talk with my daughter Robin as I knew I was not going home, thought I was going to hospice. And then what happened was like from another planet. I awoke at 2AM on the dot. Nausea was GONE and I was so hungry they brought me all kinds of things to eat. I turned the corner. Don't know why or how but I sure felt Teddy there. Then they started me on Humira and except for still being extremely weak I am coming back! My work on this earth is not done yet as I have Grandchildren who need me, It will take some more time as I had hit rock bottom but I will get there. The Humira really took to me and the GI is already weaning me down on the Preds. I feel so blessed and soon it will be time to start my life once again. Remember, Teddy is sending me a man. Even though it's a different illness I think what I went through helps me understand our family here better. Love to you all!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello from a new member

oh, Lainy I am so hapy to hear some good news from you!!!! HUGS.

Re: Hello from a new member

Hi Holly and many thanks. One reason I wanted to post this was because of the questions we get on "eating" and this is why I now feel so adament about eating good regular diets when all that other "stuff" has really not been tested. We all so need our strength for what ever the reasons. My big goal is to attend #1 Grandson's wedding in Milwaukee in May. And the circle of life begins again!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.