Topic: choices of chemo

I'm starting chemo for the first time next week with gem/cis.
I've noticed that many of you were treated with different chemo combo and wondering how do doctors decided what chemo to start with?  I thought that gem/cis was the first choice for cc.

Re: choices of chemo

LeAnn,

I was also told that Gem/Cis is usually the first line of attack.  My mom was scheduled for that regimen, but because her billirubin levels rose, they were concerned that gem/cis would be too hard on her liver, which is already compromised due to the duct blockage.  She started on Oxiliplatin and F5U on Monday. 
Good luck.  I hope it goes well for you.

Lauren

Re: choices of chemo

Hi LeeAnn,

The Gem/Cis combo is indeed seen as the worldwide standard first time chemo treatment for CC and this came about after studies and trials into that combination for CC. However, it must be stressed that this combo is not the only type or combination of chemo treatments that are available here as you have seen from the many members posts on CC.

I so hope that all goes well for you next week with your chemo and I will keep my fingers crossed for the best possible outcome. And please, let us know how it all goes for you. We are here for you.

Hugs,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: choices of chemo

Thanks Lauren and Gavin.

I got my first chemo Gem/Cis today and so far I'm feeling good.  A little achy body but nothing else.  They gave me Hydromorphone  for pain on my side and Compazine, Dexamethasone for nausea. 
Thank you again for well wishes.

Re: choices of chemo

LeeAnn....you made it through the first round with little problems.  Congratulations.  May the rest of the cycle be equally as uneventful.
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: choices of chemo

Thanks Marion.
Your kindess means so much to me :-)

Re: choices of chemo

LeeAnn...thank you.   This is what makes this discussion board so unique in that all of us have a common goal: we are fighting this disease TOGETHER. 
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: choices of chemo

chemo #2. So far so good smile
For pain on my side they gave me hydromorphone but didn't work that well, so they chagned to morphine sulfa.  I hope this would let me get some sleep.

Re: choices of chemo

LeeAnn, so far so good sounds good to me, so far! Hope you got some sleep and that they get the pain under control. A good night of sleep helps so much. Thanks for the update and keep them coming as you know we all truly care!

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: choices of chemo

Glad you are doing good!!
Did they say how many rounds you will get?

I had 13 rounds of gem/cis

Then started to have reactions to cis. Be sure if you start feeling funny to let the nurses know ASAP! The more cis you have, the more likely you are to have a reaction to it.

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: choices of chemo

they said to check in 3 months if I'm doing well with this, but I'm going to ask to get ct in 2 months. If it's not doing anything in 2 months what's the point keeping it going.  I'm in charge of my treatment now.  No more wait and see.

Re: choices of chemo

LIKE you're being in charge!!!!
Hugs
Maria

No matter whether you think that you can, or that you can´t, you´re right
//Henry Ford

Re: choices of chemo

I just finished 3 rounds of gem/cis. Since I haven't had tumor marker checked since I started chemo, I asked for one today to see if there's any changes.
Well, almost at the end of chemo they had blood test result. Bad news!!!
I don't think chemo did anything for me. My CA 19-9 was 340 when I started chemo, today it was 790. I'm so upset and sad. I'm getting CT next Friday and discuss what to do next. I knew something was up. I had hardly any side effects at all. It was way too good to be true.  At this point I don't want standard treatment, any suggestion?

Re: choices of chemo

LeeAnn, I know this news upset you but remember there are many other chemo cocktails. I am not versed in chemo as Teddy never had it but I know there are more options and that is the important thing. If I am not mistaken some people don't lways get the side effects. You also can always go for another opinion. I will be praying and wishing that the CT Scan is stable. Next to shrinkage we like stable!  I know you will not relax until next week....so I won't tell you too!

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: choices of chemo

Hi LeeAnn,

Try and not let the CA 19-9 test make you that upset. My daughter, Lauren's oncologist says he looks more at scan results and what is going on rather than that test. Hers goes up and down all the time. If you worry too much, you will make yourself sick. That is good if you don't get side effects from chemo. That means you are handling it well. Lauren doesn't have near the side effects most people have from chemo, but she has had a great deal of shrinkage in her tumors. I know it is hard to not freak out about stuff, but please try to relax. Scans will tell what is going on soon enough. If you are not happy with your treatment, why not get a 2nd opinion to put your mind at ease. I am hoping and praying that you have great scans and a lot of shrinkage. Take care.

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.

16 (edited by marions Sat, 13 Oct 2012 11:18:08)

Re: choices of chemo

LeeAnn....I think that it is too early to worry.  Tumor markers in general are meant to provide a baseline for treatment however, it is the trend (up or down) INCLUDING patient symptoms and scan results that provide a more accurate response measure.  Fluctuation of the CA 19-9 markers may occur due to various reasons including, chemotherapy and radiation treatments.  Similar to what Pam has mentioned we have seen on this board often times for the markers to be moving around without any indication of disease progression.
Gem/Cis is considered the standard of treatment for this cancer, but as Lainy has mentioned, there are numerous other options available to you.  The physician will rely on his/her knowledge and experience and make the decision on which treatment protocol is best suited for you.
Hang in there, LeeAnn, the glass is still half full.
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: choices of chemo

Thanks to all.
I know what you are all saying but I couldn't help being disaaponited.  My Ca19-9 was on up trend since after surgery.  My lowest was 79 a month after surgery and was going up since then.  Since this was my first chemo, I had a such  high hope for the number to go down or any improvement and didn't happened.  I know this isn't the end of the world, but.......I'm sure you all understand.  Thank you all again for your support and I will try to stay positive.

Re: choices of chemo

LeeAnn of course we understand and don't ever apologize on this Board for the way you feel. I have my own dismal moments and I call them my "pity parties" and hey, who doesn't like a good party now and then! Then when the party is over it's time for me to go back home where I belong. Sorry, I am one for all the metaphors. Bottom line is you are loved here no matter what you are feeling or writing. 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: choices of chemo

Hi LeeAnn,

Any news you hear, that is not what you are expecting can be disappointing. I remember the last time Lauren had scans, there was only small amounts of shrinkage. Everyone was thrilled except Lauren, including her oncologist who I have never seen get that excited. You would have thought she had ten new tumors by her reaction! So I, along with many others understand where you are coming from. Try not to dwell too much and think positively to the future. Sending hugs and support your way.

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.

Re: choices of chemo

Of course we understand, LeeAnn.  This site provides a sanctuary for all of us - always.
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

21 (edited by LeeAnn Mon, 22 Oct 2012 07:08:04)

Re: choices of chemo

Hi everyone,

Got some good news!!!  I went in yesterday to get a new CT and to see my onc. From last week's blood work- tumor marker being double since I started chemo- I expected the worse news like  new tumors and got bigger etc.
Nope, actually it showed shrinkage on main tumor and stable. No new lesions!!! How about that!!!  I was so happy to hear that.  So they gonna keep me on gem/cis for now.

I just want to say "Thank you" to all for your support and encouragement. I don't know what I would do without you guys.:-)

LeeAnn

Re: choices of chemo

LeeAnn, I am doing cartwheels (not an easy thing anymore). Yeah! I had a feeling it was all OK. Shrink, shrink, shrink and stable! Excellent! What a good weekend we are having on this Board. Maybe we should just concentrate on weekends! I am elated and thanks for letting us know your good news.

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: choices of chemo

LeeAnn,

My tumor marker went up a little while I was on chemo.  I went even higher with radiation.  I think it has a lot to do with inflammation in the body and is not always indicative of cancer progression.
It still worried me when it went up, so I know how you feel.

Take care,

Susie

Re: choices of chemo

Hi,
I am currently reading many things on chemo and as my brother's doctor informed him, it might be that especially at the beginning of chemo, the markers level rises - it is of course not a general fact as every body reacts differently. All best for you!