Topic: introductions

I was diagnosed in April 2011. I found your site a couple of months ago but was having trouble posting. I wish my doctor had told me about you. Reading the discussion boards has been so helpful.
Before my diagnosis I was a healthy and happy 59 year old planning my wedding and really enjoying my life as a mother of 2, grandmother of 4 and a flight attendant.
I began to feel more tired than usual and started having really awful heartburn. These were my only symptoms. I was able to get into a gastroenterogist pretty quickly and had a cat scan and a biopsy. I was told I had adenocarcinoma. There were tumors around and in the liver and some lympth nodes.
My sister had died when she was 58 of what she said was liver cancer. On her death cert. it says CC. She lived 17 months after diagnosis.
I started Cisplatin and Gemzar the first week of May. The side effects were pretty bad. I have been on Gemzar only for quite awhile now. I have had a cat scan every 4 months and each time its been good news. Many of the tumors have disappeared and the largest one has shrunk.
One thing I wanted to mention is that the best thing I did was have a port put in at the beginning. I hate needles and it has made my treatment much easier to deal with.
I was told there would be no cure for me, no surgery possible and that I would be on chemo of one sort or another until they had no other drugs to try. So far the Gemzar is working. I accepted this because it's the same thing my sister was told. I did go to UCLA for a second opinion and the doctor there agreed with my current regimen.
My life is totally changed of course. Besides having to deal with not feeling well and all the other things this disease brings I also have to worry about not having my work insurance after June. I will go on COBRA but I understand its quite expensive.
I'm fortunate to have not lost my hair, nor suffered any of the wasting
associated with this cancer. In fact, I have gained weight! After dieting all my adult life I figured I might as well enjoy food. I eat everything I want and have gained 30 pounds! Not a good thing and even the doctor is concerned about what I weigh. If I thought I would be around this long I would have been more careful. I know I should diet but don't seem to be able to do so.

Re: introductions

Dear Janet, welcome to our extraordinary family but sorry you had to find us. It would be unbelievable that you and your Sister would have the same Cancer! I am glad to hear that your Chemo is working for you. Have they talked at all about the possibility of surgery down the road? Sounds like you have done the right things, second opinion and such. Where are you being treated? Please keep us posted as we truly care.

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: introductions

Janet,

Welcome to the site and I am also sorry you had to join us.  I don't think I've ever herd of siblings both having cholangiocarcinoma.  Good luck with your treatment and keep us posted.

Susie

Re: introductions

Hi,
please apply for disability from the social security office as soon as possibe.
using the  FIRST diagnosis date and try to get the government disability within 6 or 7 month. But the point is not the disability check but the time you will get the MEDICARE health coverage sooner than 65. If April 11 is the date of the first diagnosis then you will qualify for the early medicare 2.5 years after April 11,2011.and that can save you some money in insurance coverage.
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: introductions

Dear Janet,

Welcome to our family. I am so sorry that you had to join. I wish you the best of luck as you make your journey. I will be here to offer you a kind word, advice if I can, and just an ear to listen.  Feel free to visit any time. Take care.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: introductions

Janet...I would like to follow the others in welcoming you to our site.  Indeed we have seen this cancer occur within families however; within the last 6 years I don’t believe that it has been reported more than 6 times.  I am so sorry to hear that you and your sister both have been touched by this disease. Please know that we now have more treatment options then were available even a few years ago.

The Cholangiocarcinoma Foundation works very hard on bringing awareness of this disease to physicians and patients alike.  We attend numerous medical conferences and distribute brochures to doctor’s office whenever possible.  This is one disease no one should have to encounter without the support and information of this site.  I am so glad that you have found 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: introductions

I am sorry that you are going through this difficult time. I am so glad that your tumors are shrinking. I am age 69 and was diagnosed with  CC in September 2009. I hope that the longer we live, there might be a new drug down the pipe line.  I worked at the National Cancer Institute/NIH  in Bethesda for 6 years as a pediatric oncology social worker.  I saw incredible positive results of the research done on various cancers including new drugs.  When I first arrived at NCI the researchers were not able to get leukemia under control.  By the time I left leukemia had become a chronic  condition. The same is true for other cancers.

  I wanted to share with you that my sister died at age 46.  Dana Farber in Boston thought that her diagnosis was cholangiocarcinoma but the death certificate said probable cause pancreatic cancer I never had a discussion with this doctor after she died so am not certain of her exact diagnosis but am suspicious that it could have been CC.  I haven't done any thing to find out if there is a genetic component.  If there are any registries around I'd like to be included in one especially to see if there are any other siblings with the same cancers.  I am currently being followed at Johns Hopkins.

I wish you well and know that I am thinking of you.

Fondly

\Judy

Re: introductions

Hi Janet,

Welcome to the site. Sorry that you had to find us all and I'm sorry to hear what you are going through. But I'm glad that you've joined us all as I know that you will get a ton of support form us all here. If you have any questions at all then please just ask and we'll do what we can to help you. We are all here for you.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: introductions

Hi Everyone,

Thanks so much for your kind words and support.
Thought I would give a bit more information about my sister. She passed away 4 years ago. I do not know what chemo drugs she was given. She had been in great health before her illness, even running the LA marathon at 50. By the time she went to the doctor her liver enzymes were extremely high. Mine are still normal so I wonder if my cancer was perhaps diagnosed at an earlier stage.
I live in Long Beach, CA and my doctor is Sasson Farjami. He is with Pacific Shores Medical Group. I have been told that no surgery is in my future.
I had applied for Social Security disability and just found out I will be covered. Now I just need to figure out what to do about insurance. I was told today by the billing gal at the doctors office that its important to not have any gaps without insurance or the pre existing condition clause comes in to play.
Thank you again for this site.
Janet

Re: introductions

Hello Everyone, and again thank you for this forum.
I had another ct scan and got the results yesterday. After 13 months the Gemzar has stopped working. I have a new tumor in my liver. Because of what I have learned from the discussion boards I asked to be refered to both a radiologist and to USC Cancer Center. I see the radiologist tomorrow! I'm waiting to get a call from the doctor at USC. His name is Dr Heinz-Jospeh Lenz. On June 25, one day after my 61st birthday, I start on 3 different chemo meds. Leucovorin, 5-FU and Oxaliplatin. Side effects from these medications sound like lots of fun...
Best wishes to all of you going through this

Re: introductions

Dear Janet, so glad to see you again even if the update is not what we had hoped for. The good news is you still have choices and you have a good attitude which plays a big part in this journey. You are doing all the right things and Dr. Lenz is high on our list of Doctors. By the way, I will be in Long Beach on July 26th for an overnight at the Current Hotel. It's my daughter's 50th and we are doing an all girls Cruise over the weekend. If you feel up to it and would like to meet I have the afternoon of the 26th or EARLY morning on the 27th. Please keep us posted as we truly care.

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.

12 (edited by marions Fri, 08 Jun 2012 23:54:18)

Re: introductions

Janet.....at one point we expect maximum benefit of chemotherapy; we then have to switch to another regimen.  Good luck with the Radiology appointment and I hope for Dr. Lenz's office to get back to you real soon.
Please keep us posted.
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: introductions

Dear Friends,

I had the gold "seeds" put in my liver today. Not a bad procedure at all. In the

month since my CT scan the tumor has doubled. I have not heard from Dr

Lenz yet. Hopefully soon.

Lainy, please call me at 562 618 1242. I would love to get together on July 26

which is MY daughters 40th birthday!

Thanks for all the support,

Janet

Re: introductions

jANET, i WILL CALL YOU. I get in at Noon and am taking my Grandson to lunch (he is picking me up). I should be at the Current Hotel by 230PM and can spend some time with you then. My daugthter's 50th is the 26th! I would say we are 2 lucky Mom's. I will be calling!

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.