Topic: How long can you be on chemo

My husband wanted me to ask if anyone has an idea how long a person can be on chemo? He's thinking that eventually his body will get immune to the chemo or take a toll on his body. We were told he would be on some form of chemo for the rest of his life and he's wondering if its worth it. Especially with the side effects. Anyone have any ideas?

Re: How long can you be on chemo

Dear Shel, I can't give you a precise answer but I know that sometimes the ONCs will make changes in the Chemo or give little breaks. I think the best one to ask would be the ONC. I am sorry I forgot, but how old is your hubby? Stay strong.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: How long can you be on chemo

Lainy, my husbands 46. His cancer came back last year in June. The only thing they told us that for him to do chemo to help prolong his life. I don't know how much longer its suppose to prolong it. He asked his onc doc 2 weeks ago how long they thought he would have to be on chemo and they told him he would be on some type for the rest of his life. He expects the to tell him how long he had but they won't. He's not in bad shape and to look at him you really can't tell. It's just he's getting tired of the chemo and even though he's been off the cisplatin he's experiencing a lot of side effects from it. He's always been the type of person that's had to be busy doing something and he's having a hard time adjusting to getting tired from doing not much of anything. Now his tumor marker jumped a little that'd bothering him. The nurse told us not to worry about it because sometimes them markers don't mean anything. His belly is really round but we have been told its nothing and the last ct a month and half ago showed nothing. He's always feeling his stomach. I ask him if its bothering him and he says no. Sometimes I just have a hard time believing this is all happening. Just seems like a bad nightmare.
I'm glad this discussion group is here, it sure helps.

Re: How long can you be on chemo

Dear Shel, have you sought a second opinion. I know that no one really knows anybodies time limit but I personally feel if he is mentally strong enough and wants to know that he has a right to a good guesstimate. That is my own personal opinion.
My Teddy's tummy was also always rounded and he would like pat it but he didn't have pain. If not a second opinion perhaps you could ask the ONC about a break. Of course you have a hard time believing, it IS a bad nightmare. Be strong!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: How long can you be on chemo

Second opinions are like a breath of fresh air. May be time for another set of eyes on this one. If you don't get answers to your questions after trying repeatedly, ask someone else. Best luck on this one, I know nothing medical, but I ask a lot of questions and expect answers, discussion, etc.

6 (edited by PCL1029 Mon, 14 Jan 2013 10:00:02)

Re: How long can you be on chemo

Hi,
If the chemotherapy works,most of time,if it is required ,it will be continuing the same chemotherapy till "disease progress or intolerable side effects occur. And if it does not work, they will try to switch to other regimen and continue the journey of treatment.
46 years old is by any standard  too young not to be treated. New therapies comes out every year;take a chemo vacation now and then if doctor agrees and continue the fighting;be proactive by learning about this disease;find a new way to forget the  unfortunate events and reinvent a new strategy to appreciate what is left. I am trying to do exactly what I said above and I am 63. I know it is very tough not to be sad and angry about "why me". But if this is the road I have to travel on, I have no choice but find the best guide book and God's blessing to go ahead. It may not get there, but I know I have try my best for me as well as for my family and friends like your husband.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: How long can you be on chemo

We have seen a few doctor. Even seen one from the U of M and they told us his only option now was chemo. It's so hard to set here and feel helpless. Life's just not fair. Thank you everyone for your thoughts, I appreciate.

Re: How long can you be on chemo

What did you find out about the CA-!9-9 numbers for your husband?
Mine went up over the normal range last summer and I panicked.  Marion told me that it was too soon to decide anything.  It's down to 13.5 now.  I have asked several times over the past 6 months what could cause the rise.  I got the answer, "We don't know.  Something environmental."  That was the answer twice.  The last time was another "We don't know.  It can be caused by scar tissue."  I didn't ask for an explanation of that.  Maybe I should.  The doctor took it as a sign to watch closely for awhile, but he wasn't alarmed by it, and it did go down again.  I know the feelings you are going through.  It is VERY hard......
Sending you warm thoughts.  Please let us know what has been happening the past couple of weeks.  Maybe you have and I've missed the post.
Kathy

Re: How long can you be on chemo

My husband just had CA19-9 checked again last Friday. He ended up sick with the flu going around so they waited an extra week before checking. So now when he went in Friday the 31st they decided to orderan ultra sound because they thought his belly is looking too extended. I didn't get to go to the appointment with him but they told him they were looking for fluid in the belly or to see if its the cancer spreading. All liver levels are normal but they said they still wanted to see if it spread. I guess it will be a few days before we get any results. So I'm trying not to get myself too worked up and trying not to think the worse but it sure is hard and scared to death.

Re: How long can you be on chemo

Shel....Great news on the  liver levels are in the normal range. Fluid in the belly can be removed with paracentesis.  It is a minimally invasive procedure using a needle to remove fluid from the abdomen. We have numerous reports on this procedure. 
Your husband got over the flu rather quickly - one week only.  Considering the severity of this year's flue outbreak many people I know are sick for weeks on end.
Fingers are crossed (Lainy crosses her eyes too) that tons of good news will be heading your way.

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: How long can you be on chemo

Doctors office just called, no results yet from ultra sound but the Ca19-9 results were in and it went up again. It was 72 then 98 now 145. I don't know what to make of it. Suppose to see the doc Friday. Praying its not bad news.

Re: How long can you be on chemo

Thinking of you and your husband. Hang in there as you await the rest if the results.  You have lots of  support here.
Willow

Willow

Re: How long can you be on chemo

shel...I agree with Willow - you have a tidal wave of support heading your way - can you feel it?

Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: How long can you be on chemo

Thank you, it's so nice having a place where people know what your going through. I don't know what I would do without the support and advice from everyone on here.
Michele

Re: How long can you be on chemo

Michele,

I just wanted to let you know that I hope you get good news Friday. I know it is so hard to wait for results. Please know that I care.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: How long can you be on chemo

Michele,

I know the waiting is difficult and I hope the new on Friday is good.  Lots of good thoughts coming your way.

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: How long can you be on chemo

Ultra sound showed no fluid it belly but they said they seen dilation in one of the biliary ducts. Now Friday he goes in for a ct scan just to check things out. All liver levels and bili levels are still normal. Only bad thing is he gets the ct scan and they make you wait a whole week before he gets results. Can't stand that. So scan on 15 results the 22nd.

Re: How long can you be on chemo

Ah, Shel, the old scanxiety game! I am fortunate to be going to MDA Phoenix as I get my scan 1 day, for my Cancer, then the next day the results! Hoping for the very best for you all on Friday!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: How long can you be on chemo

Sorry you have to wait so long for results, Shel. It is the worst!! I am hoping for the best.

Love,
-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.