Topic: New

Hello I'm graye,  was diagnosed with CC June 2011 have been on cis gem since Aug 2011 - just finished my 17 cycle.  Chemo has worked so far for the cancer but it's taking a toll on my kidneys - have looked into other options however am not a good candidate for anything else right now.  See Dr. Harris at Palm Beach Cancer Center - can't say enough good things about him.

Hopefully I post this properly haven't posted to a forum before.

Re: New

Nice to meet you graye and welcome to this site. I think you did a great job posting. I hope you continue to visit and let us know how you are doing. I'm sure everyone would like to hear more about you. 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: New

Hello Graye and welcome to our remarkable family but sorry you had to find us. You posted just fine but we would like to know more about you and your courageous fight against CC. Along with hearing more of your story please do 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: New

Hi,
If you want to, get a 2nd opinion at MD Anderson in HOUSTON to see what other chemotherapy they can offer to you.  Gem only or Gemox is less toxic to the kidney and other targeted agents may provide additional benefits without the high kidney toxicity of Cisplatin.
MDA is the #1 oncology research center in the world and you should be in good hands; taking a chemotherapy vacation under  the advise of your doctor is not a bad idea either.
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: New

graye....I would like to follow the others in welcoming you to our site.  I am wondering why you don't qualify for anything else.  Have you consulted with another center for a second opinion?
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: New

Hi Graye,

Welcome to the site. Sorry that you had to find us all here but am glad that you've joined us all as you will get so much support and help from everyone. And please don't worry about posting properly as you have posted perfectly!

Have you looked into getting second or third opinions even as to what may be available for other treatments? Please keep coming back here and let us know how everything goes for you. We are 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: New

Guess my initial post didn't really give enough info - I don't want to give the impression I am doing poorly - it's just the opposite - I have been fortunate to be able to tolerate a lot of chemo - the cis gem combo has worked better than anyone expected - my last ct was clear! 

So a little more about my journey. 

In February 2011 started noticing an unusual sensation around my belly button and then got what appeared to be a yeast infection, after several months of attempting to treat with antibiotics it just kept returning.  Then in late May I developed jaundice (turned an impressive shade of yellow) and was hospitalized and a stent placed into my bile duct.  Belly button - turns out was a tumor - Sister Mary Joseph Nodule.  After a bunch of testing was diagnosed with Stage IV CC - tumors in bile duct, liver, gallbladder, belly button and lymph nodes.

Belly buttom tumor surgically removed in July.  Plastic stent got infected in late July and developed pancreatitis (worst pain I have ever felt), hospitalized again and plastic replaced with titanium stent - so far haven't had problems with it.  Started cis gem Aug 1 2011.

I did initially get 3 different opinions - Dr. Harris was positive that he could treat - other 2 were so bleak really wasn't even a thought not to choose Dr. Harris - 1 was from CC specialist at the Moffitt Center in Tampa.

Throughout this process we have looked into resection, transplant, radiation, chemoembolization - distant tumors and undefined tumors initially ruled out everything except chemo.

Now plan is to change to carboplatin gem combo to give kidneys a break.

Re: New

graye....Thank you for explaining in detail your journey with detection of this cancer and the subsequent  treatments.  This is the very first time that the Sister Mary Joseph Nodule has been mentioned on this site.  We have had reports on belly button protrusions, but never had this gastrointestinal malignancy been mentioned as the underlying source of this cancer.  I thank you for enlightening us. 
Most importantly though I would like to congratulate you on the clean scan; this is fantastic news. 
Graye, it appears than that the physician recommends continuous chemotherapy but this time chooses one with less toxicity to the kidneys.  Are you to be on treatments indefinitely? 
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: New

Marion -  At this point yes, the treatments are indefinite.  As long as the treatment is working and I can handle it, Dr Harris wants to continue and I agree - it's more a knock down and keep it down plan right now.

The day we changed from cisplatin to carboplatin because of my kidney function my tumor markers came back slightly elevated and a followup test confirmed so it appears the cisplatin was also becoming less effective.

Just had my first carboplatin treatment will just have to monitor to see if it is effective or not - have to say compared to the cis gem the side effects so far of carbo gem are very mild.

There may come a time when all available chemo treatments no longer work for me and the cancer starts growing again - at that point I would probably become a candidate for other types of treatment but I am happy to put that off as long as possible.

Re: New

graye......we have seen, on this site, for side effects of Carboplatin to be less than that of Cisplatin.  I am happy to see that the same is happening for you.
What will the future hold for this disease?  I believe strongly that we will continue to witness increased research and treatment options for our patient community. 
Please stay in touch, Graye.  We are in this together.
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: New

I also would recommend Dr. Javle at MD Anderson. Although it sounds like your disease is under control. He also feels that long term chemo may be required to combat this disease. So glad yur scans are clear! Excellent news!