May 29, 2014 at 2:20 pm #81843jscottMember
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.
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.
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.
*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).May 29, 2014 at 8:56 am #81842iowagirlMember
Olga, I have no experience to draw upon to share any wisdom with you and Norbert about his treatment choices. I only wish that whatever the choice, you both find peace with the decision and love in each other’s arms for as long as you are given.
Julie T.May 29, 2014 at 6:10 am #81841marionsModerator
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.
MarionMay 29, 2014 at 4:55 am #81839lainyParticipant
Dear Olga, I am so sorry to read all this uncertain news. Because CC is still so rare there are bound to be different thoughts from the different ONCS. You have done all the things that should be done and yes it is up to Norbert. When Teddy was told all they could do was Palliative Chemo he opted out as the ONC said it would buy him a month. We never regretted his decision. Teddy also asked the ONC if it was the ONC’s father what would he suggest! 2 months after the opt out decision was made we called in Home hospice and they took it from there. Pain is NOT an option as the longer there is pain the harder to get it under control. IF Norbert decides no chemo I would ask the ONC about ordering in Hospice as they come out up to a year at least ours did. They start out with a pain reliever and just keep increasing it as needed. Hospice does NOT mean the end it means more quality time with each other and family. I wish you the very best and please let us know as we are right by your side!May 29, 2014 at 4:31 am #81840
Norbert’s supposed to start chemo Monday. I thought he all good with it but yesterday we went to see his cardiologist and after that visit, he started asking quesions and making comments. I don’t know what to believe…..I hear good stories and bad stories about chemo. In a nutshell……he wants to know how much longer chemo will buy him. We can’t get any straight answers from the doctors. We get the…..”nobody has a crystal ball”….issue, but at least an average would be appreciated to make our decision. Tonight he showed that he’s scared, but I’m not going to stand in his way of making a decision that he’s comfortable with. I don’t know what would be harder….seeing him in agony because of the chemo or saying a final goodbye to him. He’s considering not doing the chemo and I told him I would be OK with whatever he decided. He’s been getting pains in his sides and he’s wondering if its something related to the cancer. He asked me to post something asking about the pains related to the disease as it progresses. Any comments would be appreciated.May 10, 2014 at 2:56 pm #81838lisasParticipant
I was 56 when I was diagnosed last October. My oncologist doesn’t even pay attention to my ca-19-9 at this point, although mine has always been higher than normal. My alk-phos levels are higher than Norbert’s and fluctuate a fair amount, which they can do during chemo and radiation.
I, too, was told no surgery, although I am stage IIIB. I did chemo and then chemo/radiation. I managed to get through them without major side effects, so I hope that is true for him. I didn’t have the radiation embolization. Mine is extrahepatic and I think (maybe) that’s more for intrahepatic.
Anyway, just to say that I’ve felt pretty good most of the time, which makes me want to fight like heck to hang around until there is some breakthrough treatment.
Thinking of you both.
LisaMay 10, 2014 at 1:48 pm #81837lindarParticipant
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.May 9, 2014 at 2:30 pm #81836
So Norbert is in having the radiation embolization right now. Yesterday, I read him a few posts that made him feel better about his decision about doing the chemo. I still have a hard time reading some of the posts without falling apart. I only read him the posts that give him hope or make him feel better about his decision.
I’m trying to understand the CA 19-9, so before he went back I had a nurse show me that in his chart. It just said it was <18 and normal range was 0-35 so his is in normal range. Does this sound right? Or should I be asking a different question? I also got his alk-phos level as 221 in March and 257 in April. Is that good? I know that level is above normal but nearly what I've seen within some of these posts. I now have access to his hospital chart online, which has a wealth of info, but it makes for a lot of questions. I've always hated science, but now, I wish I would have paid better attention in school. HELP!!May 7, 2014 at 6:16 pm #81835kris00jParticipant
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.May 7, 2014 at 5:20 pm #81834marionsModerator
Olga….so sorry to hear of the loss of your family members. Please accept my most sincere condolences.
I hope for others to chime in on your questions re: marijuana and the benefits it provides to patients like Norbert. Cannabis is known for its medicinal purpose and hundreds of studies have proven efficacy however; pharmaceutical companies continue to lobby against legalizing it in order to produce their own drugs for distribution and subsequent profit.
Glad to hear that Norbert had a good night’s rest.
MarionMay 7, 2014 at 2:09 pm #81833
Thanks everyone for the words of wisdom. It all helps. I’m in the waiting room while Norbert has a port put in. We have actually gotten much support from the family that is aware of what’s going on. That has been very comforting.
Norbert is scheduled for radiation embolization on Friday. An unexpected death on the family last week and another expected death in the family this week has made life a bit difficult. I’m not sure Norbert’s going to be up to going to the funeral services this week but I’m not going to worry about it. I need to do everything I can to make Norbert feel better about his decision to do the chemo. I’m not sure how to do that but I need to figure that out.
I need to know if anyone has any experience with hemp oil? The day after Norbert was diagnosed, our sons did research and after spending the last 9 months in agony because he couldn’t sleep (dry cough, night sweats, fever, chills), he was finally able to sleep!!! And has been able to sleep since he started taking it!! Michigan has legalized medical marijuana and we both now have our medical marijuana cards. He only takes it at night to sleep. In the morning, he needs 2 cups of coffee as opposed to his usual 1 cup, sometimes needs a third cup, but aside from that, no other side affects. It’ll be interesting to hear your experiences.May 2, 2014 at 4:04 am #81832dukenukemMember
I think your onc and mine read the same book – at least about the six months with no chemo. But looking back, if I had asked the right questions about elevated alk-phos, I think I would have been diagnosed seven months earlier. Which means I should never have made it to the diagnosis. Even though I was an engineer, I now have a totally different opinion of statistics. As has been said numerous times in these Boards, the current stats are based on studies performed years ago which do not reflect the current treatments and results. I’m undergoing chemo and will as long as I can tolerate it and it produces positive results. A positive outlook by you and your husband is essential. That and communication between you.
I can’t imagine getting told over the phone by a nurse practitioner. It was hard enough being told by my onc face to face. Her body language said it all even before she started talking.
You will find help in some strange places and from people you might not expect. Others, who you think would help, are going to treat you like lepers. Your lives will change. Stay active. Stay positive. You and your husband are best friends and lovers. Grab that and hang on for all you are worth. At the end of the day, after your glass of wine, it’s just the two of you and God.April 27, 2014 at 4:02 am #81831snowbirdMember
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.
JudyApril 26, 2014 at 11:41 pm #81830RandiParticipant
Just wanted to add my welcome to all the others. I am sorry you have a reason to be here, but you will get all the support you need by the wonderful people on this site where many have been in your shoes and others have been in your husbands shoes.
You and your hubby will be in my thoughts.
-Randi-April 26, 2014 at 3:18 pm #81829darlaParticipant
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,
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