Thank you Marion, Kim and Donna.  I appreciate all of your support.  This is such an incredibly devastating disease, but with all of this support and prayer, we will make a difference.  I will keep you updated and keep your families in my prayers as well.

DJ--I am so sorry to hear about your dad--Christmas was almost impossible for my family as well with my grandma in the hospital, but I can't imagine how difficult it must have been for you and your family.  I am praying for you and praying for a cure for this disease so that no one else has to suffer like this ever again.

John

My mom recently setup a blog for my grandma, inspired by Jesus's statement to Jairus "Do not fear, only believe."  Jairus had asked Jesus to heal his daughter, but en route, his daughter died.  Jesus told him not to fear, but to only believe, and he healed Jairus's daughter, explaining that she had only been asleep.

This verse has made us stronger.  We are trying to coordinate a day of prayer on December 29th (this Wednesday) for my grandma Ruth and all who suffer from cholangiocarcinoma and for a cure. 

If you have time, please visit our blog at http://luke850.blogspot.com to learn more.

Thank you for all of your support,

John

Thanks Marion and Susan--I appreciate all of your support, help and advice.  My grandma actually is not a diabetic (was probably borderline before all of this), but I am a little worried about her glucose going up so much--granted, it's not incredibly high, but I would like to avoid using insulin at all.  I think we might try switching to Glucerna or something like it.

Thanks again,

John

Thanks Marion!  We are very glad that everything worked out the way that it did.  She is on a Jevity 1.2 Cal formula, which seems to be pretty good, but I am a little worried about the sugar load---she needed 3 units of insulin tonight after blood glucose spiked at 153.  I am concerned about administration of insulin, because I know that insulin/insulin growth factor receptor is a target of many new therapies, and IGFR overexpression has been identified in CC.  Just hoping that we are able to pick and stay on the right formula that is high calorie, high protein and low sugar!

Would appreciate any insights on formulas/options that worked well.

Thanks again for your support,

John

Good news so far...the gastroenterologist was able to endoscopically place an NG tube past the hernia and into the duodenum, so luckily, we do not have to worry about a G tube and can still get the nutrition needed.  Our oncologist was reluctant to try TPN, as he was worried that the risk of fungal infection was too high, and that the risk of liver toxicity was also too great, while the nutrition is not as good as enteral options.

Thanks for your help--it is much appreciated!

John

Hello,

Wondering if anyone has any experience with G tubes/PEG tubes--these are tubes that are inserted directly into the stomach by a small incision done under general anesthesia.  We had been hoping to do an NG (through the nose) tube, but unfortunately, my grandma's hiatal hernia (stomach is bunched up above the diaphragm) makes it difficult to do this.

We are worried about the G tube because she has ascites, and we had heard that poking through the ascites could possibly seed tumor elsewhere (if there are malignant cells in the ascites).

We are very torn and do not know what to do.  Our doctors tells us that the risk is low of spreading the cancer, but any risk of that seems completely unacceptable to us.  At the same time, she needs nutrition and cannot eat enough.

Does anyone have any other ideas/options?  HELP!!!!!

Hi epato,

By personalized DNA care do you mean analyzing tumors for specific mutations?  This is probably going to be a huge part of cancer treatment in the future, and some institutions in the US are already doing it.  Part of my grandma's biopsy was sent off to a company called Caris that looks at overexpression of certain cell surface receptors (EGFR) but also for some common tumor mutations.  Unfortunately, the technology still has a ways to go.

Best of luck to you,

jebben

Hi Marion,

I know that most places in the US do RFA, but they only do it using CT or ultrasound guidance, which means that the maximum tumor size they can typically ablate is 5 cm.  The new stereotactic technique combines 2D and 3D CT imaging, allowing interventional radiologists to ablate much larger tumors--some that are even larger than 10 cm.  I talked to a bunch of IRs in the US about the procedure--most thought this was the future, but thought that it is currently too expensive/resource intensive to do before more studies come out.

9

(6 replies, posted in Chemotherapy)

Thanks for the information Marion.  It is unfortunate that CC doesn't get more attention.  I know that oncologists often have the option to prescribe something off label--if I am understanding correctly, they can prescribe a drug that is FDA approved for any other cancer to treat CC if they feel there is a reason to.  Just wondering if anyone had taken tamoxifen off label, since it is (relatively) cheap with limited side effects.

Thanks again for your help

10

(6 replies, posted in Chemotherapy)

*weak

11

(6 replies, posted in Chemotherapy)

Was wondering if anyone had tried to use tamoxifen off label in combination with something like erlotinib/Tarceva or if people were using tamoxifen alone.  I looked through the literature and it looks like there have been a lot of lab studies with tamoxifen and CCA, but no clinical studies, which seems odd to me. 

Here's the link to one of the papers I was reading: http://clincancerres.aacrjournals.org/c … /1288.long

Just wondering, because the side effect profile of tamoxifen is really pretty good and easy to tolerate--something that my grandma definitely needs because she has been pretty week.

Would appreciate your insights/any experiences anyone has had with tamoxifen and CCA.

Thanks!

Hi Kris,

Best of luck to you in Germany.  I have also been looking into some European centers and was excited to hear about stereotactic radiofrequency ablation being done in Innsbruck, Austria by Dr. Reto Bale.  They have done some bigger studies and look like they have some great preliminary results---159 patients treated, 12 with tumor recurrence (10 underwent a second ablation and are now tumor free), and Dr. Bale is able to treat tumors >10 cm in radius with the stereotactic technique.

Maybe I'm getting excited about nothing---have read a couple of papers, but no one does this in the US yet.  Did you hear about this or consider it?

Again, best of luck to you--my prayers are with you.

13

(5 replies, posted in General Discussion)

Hi Lainy,

Thanks for the support!  My family is from Appleton, WI, but I am actually a med student at MCW and Marquette grad, so I am in Milwaukee.  We have been talking with Dr. Rilling at Froedtert, as well as Dr. Winslow and Dr. Cho at UW--have you had any experience with them?  I will go ahead and contact Dr. Henry as well--thanks for the advice!  I will also be sure to take a look around the nutrition page--very important that we are able to build up strength soon.

Thanks again!

14

(5 replies, posted in General Discussion)

Hi Bob,

We have consulted with doctors and interventional radiologists at both of our state (WI)'s major academic medical centers, and I got in touch with another doc at Mayo.  Just emailed another doc at MD Anderson as well---let me know if anyone has had a good experience with any doc in particular. 

Will be meeting with an interventional radiologist to talk about chemo/radioembolization this coming Thursday.  We need to be really strong and demonstrate that she can handle the therapy, which is why it is so important that we find some really great nutritional options this week and work to build strength.  Any suggestions on specific foods or nutritional options?

Thanks for your prayers and your support Bob!

15

(5 replies, posted in General Discussion)

Hello,

I am new to the site--my grandma was diagnosed with ICC about a month ago.  She has been hospitalized a couple of times, but has good liver function (good bilirubin levels), no jaundice and disease is entirely confined to the liver.  Until 4 weeks ago, she was totally independent and the strongest person that I knew (she still is).  Unfortunately, the doctors aren't giving her much of a chance.  Because of her hospitalization, she is pretty de-conditioned--can't walk anymore, which is making our local doctors say that she is too weak for systemic chemo.  We are hoping to do chemo or radioembolization, but need to build up her strength and appetite.  Does anyone have any suggestions on how to build strength?  Any good foods/ways to stimulate your appetite?  We could really use all of your help and prayers!  We are becoming frustrated that it has been almost a month and we still don't have any treatment going...we are very concerned that we need to move much more quickly and aggressively, especially since liver function is still very good and everything looks promising on paper.

Thanks for your help,

John