September 15, 2009 at 6:33 pm #30910ajcarman72Spectator
My mom is newly on Gemzar (2nd treatment last Friday) and she is tolerating it well. I just got off the phone with her and she had been out walking with her friends, worked some and was baking banana bread before sitting down for her afternoon nap.
She has her treatments on Friday. Saturday she feels sluggish and Sunday she feels awful. Monday she is like a new person and that lasts through Friday night for her.
My mom is 56 and for her, the chemo is worth it so far. We are still relatively new to all this as well.
Good luck to your father!September 9, 2009 at 3:08 am #30909ireneaMember
Just wanted to add my proverbial 2 cents and also support what Magic. Chemo, as was noted is effective in less than 30 percent of all cases of cholangio (and in some studies that number is below 20 percent) so this is something to consider when looking at all options and also measuring quality of life issues.
There are a few of here who do, at least for a while, decline the chemo/radiation route. There are downsides and upsides to every choice, and there are no absolutely right or wrong answers. CertainlyI would make sure that it is more than one doc who thinks surgery can’t happen.
I wish your family all the best. And keep checking in here. Having folks who understand available to you really helps.
-IreneSeptember 9, 2009 at 2:14 am #30908rayeMember
It was a pleasure talking with you Lee. I wish your family the best during this ‘trip’.August 30, 2009 at 7:30 pm #30907desperateleeSpectator
Thank you all for your replies. They are proposing gemzar (gemcitobine) and cisplatin in combination for Dad. I will try and get more information about his staging, and also why surgery has been completely ruled out. Thank you again for your help and caring.
LeeAugust 30, 2009 at 7:03 pm #30906devoncatSpectator
Which chemo will he have? I was on xeloda and oxalplatin. Had very bad side effect of diarrhea which caused so many problems I was doing the Hokey Pokey in and out of hospitals. I was also very sensitive to cold things and unlike most people who have it only a couple of days, mine lasted 10 days which really had a bad effect on the quality of life. I have also had neurapathy and thinning of the hair. I am now on gemzar only, but will be adding cisplatin to it soon. This has been an easier regime so far. No diarrhea though the neurapathy is getting worse and my hair a bit thinner. But I feel great. I am not tired or in pain.
KrisAugust 30, 2009 at 5:26 am #30905magicSpectator
I think it important to remember when considering chemo that there is only a 30-40% chance that it will work in a palliative situation.My husband chose to have it and it didnt work plus he had terrible side effects.He was symptom free before he started it ,it was abandoned after 8 weeks when a scan showed progression of the cancer so that was 2 wasted months he perhaps could have enjoyed with his family.He died 1 month later.Just another perspective-the problem is that you dont really know,its a bit of a lottery really.
Good luck JanetAugust 30, 2009 at 2:04 am #30904barbaraSpectator
I am 60 and have had chemo for 9 months. I have had a good response to chemo and no adverse reactions to chemo. I have had infusion with gemzar and take xeloda pills along with it. Currently I am having radiation to the tumor in my liver and then will return to chemo. I know I will need treatment for the rest of my life, but since chemo isn’t too bad, why not try to lengthen my time here?August 30, 2009 at 1:08 am #30903darlaSpectator
I would also like to welcome you. You have come to the right place for help & support. I agree with everything that Lainy has said. I also can not help you with the chemo issue, but am sure you will hear from others soon that can advise you. Getting more opinions will help your Dad to make a better informed decision on how he wants to proceed from here. I am glad you have found this site, but sorry that you needed to. Take care & keep us up to date on your Dad.
DarlaAugust 29, 2009 at 9:26 pm #30902lainySpectator
Welcome to our world and sorry you had to find us. I can’t help you on the chemo as Teddy never had it but I can welcome you and tell you that you have found the right place. Feel free to come here often to vent, ask or advise. I just know you will get an answer from someone who has been in chemo. You might also type chemo name into our search engine at the top of the page. I know that everything is overwhelming right now but by educating yourself on this CC, it will help you make the best decision and to know what questions you want to ask. The most important thing to know is that 2nd and 3rd opinions are always advised and to make sure (ask if you need) that the doctor/hospital treating him knows how to deal with CC. Please keep us informed.August 29, 2009 at 4:42 pm #2623desperateleeSpectator
I am definitely a discussion board rookie, as I posted my intro as an answer to someone else’s post. So sorry. I will try and learn quickly. To reiterate, my father has just been diagnosed with CC. As I did not have enough information at the intial consult, I have not asked some of the right questions. However, my goal today is to start arming myself with information, and I seem to have come to the right spot. I already am feeling a bit less alone with this. Dad is 81 and in very good health. The CC was an incidental finding on an MRI he received for some unrelated benign bladder polyps. He is therefore still asypmtomatic. The oncologists have said that the cancer is inoperable, and has metastasized to the liver (number and size unclear to me ) and a probable site on the lung. They are recommending the combination chemo for “symptom relief”(as he has none) and a 20% extension of a vague amount of time, measured in months(?). I would appreciate hearing how those going through the this chemo are faring. I am concerned with that at my dad’s age, if they start chemo soon, he will give up some really good quality time right now for some unknown future. I cannot find much to give me hope in the literature, and I cannot clearly see from what I have read where this goes in terms of how dad will feel. We are a small family, and very close. We just lost my uncle to cancer in July, and now this. The shock and grief I am feeling are terrible, and it is so hard to see my dad looking so well and trooping around at my horse show, and digging in the the dinner table and believe this is all real. Thank you so much for listening, and any suggestions or help would be so appreciated.
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