Topic: Anyone experiencie similar situation?

First please excuse any questions I might have that have answers posted. Although I read often and a lot, I am sure I have missed much. Also, please excuse the length. I will be as brief as possible.

I was diagnosed with CC 11 months ago. After researching my options and various treatments, I decided on Johns Hopkins in Baltimore. I have had 2 targeted chemo embolism (TACE) treatments and 8 cycles of cisplatin/gemzar. The TACE treatments were a challenge. I developed absessess and had to have drains for several months as well as a few hospital stays and transfusions. Chemo has not been that bad, thank God. Recently, I had all my scans, MRI,etc. including a bone scan as the MRI showed lesions on my spine. I am truly blessed as there is no metastasis. My tumors (3) have shrank and shown considerable necrosis, but are still inoperable and the surgeon feels there is little chance they will ever be operable as my largest tumor covers the portal vein and other important veins. They are proposing more chemo to continue to shrink and contain the cancer and possibly radiation in the future.  I am wondering if anyone has been in this situation or if anyone knows how long this treatment on the average goes on? So far I tolerate chemo fairly well. A few weeks of low blood counts, but bounced back. I do worry about my kidneys, etc. I feel good mostly and  people tell me look good overall. I am am asking this question mainly due to pressure to go back to work at least part time. I am not sure now that would affect me overall or what the prognosis is for my situation. The doctors tell me it varies so much they cannot provide me any estimate. Any shared similar experience or info will be greatly appreciated.

Re: Anyone experiencie similar situation?

C....First and foremost, congratulations on having bounced back from the TACE treatments, the necrotic tumor (we just love the word: necrotic) and for contemplating of going back to work.  Know that this cancer has a tendency to go to the spine area and in some instances radiation achieved positive results.  You might want to discuss this with the physicians.   As to when your treatments may cease, I don’t believe anyone can tell at this point.  Given the positive response you have had so far, one must hope for the good trend to continue.  Several of our members have been able to work while undergoing treatment and I believe that you will be the best judge of whether it will also be possible for you to follow a regular schedule.  I am sure for others to chime in real soon and share their thoughts with you also.
I wish the very best of luck to you and am sending many hugs your direction.
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: Anyone experiencie similar situation?

Hi C,

Wow. The TACE sure sounds like it was a rough road.  My daughter, Lauren had 15 cycles of Gem/Cis and 5-FU. She was then switched to just Gemzar and 5-FU. Her oncologist wanted to give her a break from the Cisplatin for a while. It can cause kidney damage. In the future he said he might consider it again or maybe Oxaliplain because it is not supposed to be as rough as Cisplatin. Her oncologist plans on keeping her on chemo as long as it works. She just had a Therasphere procedure last week. She will start back on chemo again next week. She is handling it all very well. About working. I would say you will have to have a very understanding employer to keep a job. With all the doctor appts., chemo appts., and days when you may not feel well, I really don't know how someone could hold a job unless maybe they worked at home. Have you checked out disability? I wish you all the best.

-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: Anyone experiencie similar situation?

I'm glad you have done so well.  It's interesting how people can look at you and see this "healthy" person.  A neighbor told my husband that my cancer must not be that bad because I hadn't lost weight and still had my hair.  (No longer have hair but wear a wig in public so they still can't tell).  This was during the time of my original survival diagnosis of 3-14 months.  Statistic wise we do not fair well, but always remember statistics are for the masses, not the individual.  I've way disproved them for me.

It's been 34 months now.  Inoperable, stage IV with portal vein and hepatic artery involvement and then "disease progression" in June 11.  I have presently been on a clinical trial for 10 months.  Before that time I have had radiation with 24/7 5-FU and then 7 cycles of Gems/Cits.

As for work, I quit the best job ever as soon as I was diagnosed.  At the time I believed my original survival diagnosis and thought if I could get on disability I would qualify for medicare, which I wanted to be able to go out of network.  Found out it takes 2 years on disability before medicare became an option.  I've been on medicare (and have another full policy) since Dec. 11.

I was approved for ss disability in 2 weeks.  It seems bile duct cancer has been on a "special" list of conditions that get almost instant approval.  There is 5 month waiting period before disability checks start, but the waiting period goes back to your first day of not working.  At least it did for me.  The very important thing is that you have not worked even part time, if you want to apply for disability.  Your waiting period will not start until you are not working.  After you get on disability they have a work program where you can work part time and still collect disabiltiy benefits.

Some people need to work for various reason.  Some for the insurance and paycheck, some for the achievements, mental health reasons, some just to keep things as normal as they can.  I personally do not have those reasons and want to keep my stress level as low as possible.  I had a wonderful job and supervisor who would have been very understanding, but I want to keep my stress level as low as possible.  If I could not do the job as good as I wanted or took too much time off, it would have been stressful for me.  I do miss work, but it's nice to sleep in everyday until my body is ready to get up.  With this chemo brain now, I couldn't even do my former job yikes)

Wish you the best.  God bless. Take care of yourself.