Topic: My adventure with cancer, for what it's worth

If you have questions or comments and for what it's worth, here is my regimen. It is marginally successful but if I veer off this road, the results are unpredictable. Incidentally, I have chemo two weeks on, one week off. Diagnosis biliary cancer, stage 4. Diagnosed after MRI in response to severe upper back pain. The MRI was prescribed by a senior resident when my attending was not available. My attending was focussed on the musculature and did not entertain, at least in my presence, the possibility of cancer. My attending did not belive in periodic xrays and I had not had one in 9 years, although Iam not certain that xray would have seen the small lesions. Pathology could not positively identify the type of my cancer and suggested that the stain most resembled biliary cancer. The primary site no longer existed, which made things harder of course. I don't know that I would be eligible for any trials for this reason. So, I'm just waiting it out, fighting the weight battle and tidying up my affairs. My oncologist focussed on quality of life. I am somewhat blessed in that I experience minimal nausea (only from my pain meds at home). I have all my hair but that'snot a critical issue. My oncologist does not have a a group of other professionals, such as oncological social workers and nutrionists, which makes me feel a bit isolated. I am now reaching out to cancercare for this support. And the meds...Zometa plus two others which I don't recall. As for pain, Oxycontin (really helpful), Dilaudid to fill in the gaps from the Oxy CR, and various narrow range meds for specific maladies (flomax, lisinopril hctz, wellbutrin). Optional are Celebrex, Fle eril. High protein drinks are a life saver but do get boring after a while. That's it. By the way, since this is being typed on an iPhone, correction of typos is very hard, so I have left them in. You'll be able to figure them out. Best to all, R.

Re: My adventure with cancer, for what it's worth

Robin, your story is worth a LOT to me and others in this crazy world of ours.  Thank you for taking the time to share your experience as a patient with a rare presentation of an already rare cancer.
Why did they stage your cancer as a 4?
My mom has oodles of bone mets. Her story is not unlike yours.
In Nov she was given an MRI on her neck for some icky pain that would not go away with PT or meds. Voila- numerous tumors, all up and down the spine. Next a full scan revealed a mass on a bile duct sitting on the gall bladder. Stent was inserted into duct. Second set of biopsies revealed that it was primary CC, stage 4, no other tumors.
We are unable to get her any treatment besides chemo due to the dstant mets on the bones. There are no tumors visible anywhere but the primary and on the bone. My mom starts cisplatin with her usual gemcitabine next week- those bone mets keep growing and multiplying. She has a monthly injection of Zometa. She uses pain meds just for sleeping at this point.
I am researching all the various chemos for cholangio, and also treatments for bone mets. We shall see if any of her docs will go out the box for her.
God bless you. May the pain meds keep working for you.
p.s. You are a better typist on Iphone than I am on the Mac!!!!!

Re: My adventure with cancer, for what it's worth

Robin....I agree with sharupeilover.   Don't worry about spelling errors.  In the world of Cholangiocarcinoma we worry about more important things.  I am glad that you have found us because; you will not have to feel isolated anymore.  I am wondering, has your oncologist approved the various medications you are describing?  And, are you taking anything to stay regular something, like a stool softener.  Are you able to eat any solids in addition to drinking the shakes?  By the way, you can add some extras such as different fruits to make it more interesting. I am hoping for others to come along and offer some of their advice also. 
Sure wish that I could use my I-phone as well as you do.
Best,
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: My adventure with cancer, for what it's worth

Hi Robin,

Welcome to the site, although I am sorry that you have to be here. And no apologies are needed from you at all for anything. If I had to type this on an I phone then I know I would make a ton of mistakes! I am glad that you have joined us as you will get a ton of support and help from us all, so please, post a lot and ask any and all questions that you might have and I am sure that you will get lots of responses.

As to nutrition, I used to like to make soup for my dad as this was something that he not only enjoyed, but was able to keep down when he had his troubles with nausea. My dads specialist also advised us that he should eat more often, but eat smaller amounts over the day as this would mean that food could be digested easier. Dad also used to take Lactulose and had prunes a lot to help him stay regular.

My best wishes to you,

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.