Fay

Kris,

I think it is safest to look at the entire clinical picture (as in all signs and symptoms) and not to get too hung up on the number. My mother’s CA 19-9 was around 130 at the time of diagnosis and within normal range (around 20 to 25 for her) post resection. Despite extensive disease recurrence which was finally detected on CT five months post resection, her CA 19-9 were still in the 20 – 25 range. I’m disheartened to say that my sister and I fought hard to convince the oncologist not to get too hung up on that number, as well as other providers, because her symptoms were very progressive in nature post resection. So I think the most important thing is to look at the entire constellation of signs (including CA 19-9) and symptoms. I should also mention that my mom has the rarest form of cholangiocarcinoma from what we have been told – papillary mucinous subtype and I’m not sure if perhaps this changes things. But this has been our experience thus far.

God bless and hugs to all,
Fay

Dear CC family,

First of all, I am sorry I have been away for a while but things have been busy with my mom. She just finished a five week course of capecitabine (aka xeloda) with concurrent radiation. Capecitabine is a prodrug of fluorouracil. She was on this regimen five days a week and had the weekends off. She tends to be quite side effect prone but tolerated the regimen very well. Yes she did moisture her hands, feet and abdominal area twice a day. The capecitabine is meant to sensitive the cancer cells to the effects of radiation. So it’s really a synergistic effect. She went from requiring long acting pain meds plus break through every one to two hours, to not requiring any break through at all since the end of June. Her last day of treatment was on July 12th. It has been amazing. We are now titrating down her long acting oxycodone. She feels great.

Everything was going well until one of her providers was kind enough to destroy her mood with negative talk….basically telling her not to get too excited because it will come back and she may be gone in a year….upsetting and hurtful to say the least. Talk about destroying and taking away whatever hope a patient has. So unnecessary and disheartening.

If you have any questions about the drug itself, please let me know. I have a lot of PharmD friends that work at the cancer agency in Seattle and I am happy to pass on your questions. I have missed you so much.

I love you all,
Fay
P.S. Dose of capecitabine is lower for this indication, when used concurrently with radiation. That is why it is tolerated better.

Hi Emmam,

I’m sorry that this is happening to your mother. Please do not settle on one surgical opinion. Seek a second, third, fourth one if you have to. Experienced hands are key especially since this is a rare cancer. My mom had a resection at age 72 and she is a type II diabetic as well (in addition to hypertension and hypercholesteremia). Yes the surgery is massive and recovery time can be long, but your mother deserves a formal surgical consult. Don’t let them brush her off. My mother was mismanaged from the start and this is not a very forgiving disease. Please ensure you get more than one opinion from very experienced surgeons.

Hugs,
Fay

Dear Hopeseeker,

I would be hesitant to use vitamin E since it has blood thinning properties and with such a low platelet count (16), her baseline bleeding risk is already high. You may want to ask her oncologist for his or her opinion on this matter as well.

Hugs,
Fay