Introduction

Hi Olga,

I have fairly strong opinions about chemo, but please understand, these are only my opinions and I am not a medical professional. Here goes:

The sad fact about chemo is that the costs (how bad will the side affects be?) and the benefits (How much will it help me?) are very uncertain. Some people find the side effects very manageable, and some are debilitated by chemo. Moreover, chemo doesn’t really work very well for many, but some experience dramatic improvement.

Benefits:

I am convinced though that the wrong way to look at chemo for cholangiocarcinoma is that it will “buy me a month or two.” This puts far too much weight on what happens for the “median patient” and far too little weight on the minority of patients who really respond well. An alternative way of viewing chemo that reverses this emphasis is to say that you are at least four times more likely to be a multi-year survivor with chemo compared to without chemo.*

I think of it more like this: Imagine you have five cards face down and one of the five cards is an ace. You pick one of the five at random, and if it is the ace, you are one of the lucky ones that respond really well to chemo.

Compare that to a set up where none of the five cards is an ace. If we just look at the median (i.e. the third best card), we would say that both games are the same since the median in both cases is not an ace (this is analogous to the statement that chemo only “buys me a month.”) However, which game would you rather play? Unfortunately, chemo doesn’t insert 3 or 4 aces into the deck, but inserting one ace is still valuable.

Costs:

For some, chemo is very manageable, for others, it significantly degrades their quality of life. Should you do chemo if hammers your quality of life? probably not. My main advice here is don’t forget you can stop chemo! Nothing says if you start chemo and find out that you have a bad reaction that you have to keep doing it. At least you know you gave it a shot.

Overall, I would say you really want to take a peek at the card and see if it is an ace, but you want to have an acceptable quality of life in the process. For me, I would start chemo and see the effect on my quality of life. If things were manageable, I would do chemo at least long enough to get some feedback on whether it was working (I would really like to see if my card was an ace).

Again, just my opinions.

Jason

*I say at least because this number comes from the famous gem/cis vs. gem study and not a study of gem/cis vs. no chemo (e.g. best supportive care).

Olga….it is very likely that the pain is related to the cancer, but then again, the physician should be able to answer this question. But, by all means make sure that Norbert has pain medication on hand.
My husband choose chemotherapy. Then (7 1/2 years ago) not much was available. This has changed a bit, and I believe that some people have had positive results. Xeloda, the pill version of 5-FU and leucovorin has been used by some, but I hope that others come forward and share their own experiences with us as well.
My heart goes out to Norbert for having to make a decision based on uncertainty. And, dear Olga, my heart goes out to you for having the strengths and utmost love for Norbert by supporting his decision whatever the outcome may be.
Hugs,
Marion

Hi Olga. Some people don’t express tumor markers such as CA 19-9 or CEA. My husband’s were always in the normal range, even when his disease had progressed. ALP is one of several liver function tests usually monitored during treatment. Small fluctuations are often not relevant but they look for trends. Take care of yourself. I know how difficult all this is.

Olga,
I’m glad to hear Norbert has found a little help. The Medical marijuana will also help if he does get nauseous during treatment.
I know this is difficult. Having been in and still am in, his shoes, having someone to talk to really helps. I’m glad he opted for chemo, as it seems to be his best option. Hopefully it works enough to shrink this monster down so he can have a better quality of life. And hopefully, a newer treatment option is out there soon.

Olga – your story could almost be identical to mine. My husband, Ron, was diagnosed in August of 2013, when he was 59 yrs old. He was told the same as Norbert – palliative chemo was all the doctors had to offer him, or 6 months without it. I was shocked when Ron decided to have chemo because all his life he said that if he ever had cancer he would never take chemo and he would never “go under the knife”. I’m glad that he changed his mind, and I too wondered if it was only for me. After overhearing him talk with some of his friends, I found out that it wasn’t just for me. He wanted to live longer than 6 months. Ron was so worried that the chemo would make him sicker than he already was, but he was pleasantly surprised after his 1st treatment made him feel better! The chemo started shrinking the large tumor and took pressure off his other organs from the very start. Since then there have been many ups and downs and sometimes we both wonder if going through all the bad times is worth it, but then there are the good days…… I have told Ron that he doesn’t have to go through any of this for me, that it is his decision to go forward with whatever treatments come next (they’ve had to change his chemo regimen several times due to complications). I think this is something you need to do too…. have that talk with Norbert and let him know how you feel. That way you’ll never wonder. I’m praying that everything goes well for both of you.
Judy

Olga,

Glad you have found us, but sorry you had to. I can’t add much either, but I do know how you are feeling as I too have been there. Just know that you have found the best place to be when dealing with all of this. You will get so much help and support from all the wonderful people on this site. We all get it. Come back often, even when you just need to vent. We understand and will listen.

Love & Hugs,
Darla