Topic: In the middle of this nightmare and seeking info.......

Greetings to you all....I was diagnosed with biliary duct  cancer end of September. My son in law found your web site for me and I have checked it now and again.  By early Nov., I started on the chemo of gimp/cicplatin (sp).  Just had follow up Ct and Pet scan with awful results.....I had one spot on my liver and now I have a bunch.  I now have 2 tiny spots in the lower lobes of my lung. The chemo did nothing.Dr. did say that it only works 1/3 of the time.  Is this true??  Because it seems most people are on that combination  Dr. said the past CT and Pet scan probably could not see these new little ones. So now it is on to 5FU and Oxaliplatin....once every two weeks....with the 5FU in a take home pump for 48 hours.  This starts tomorrow. I was devastated....and scared and everything you can think of.  I am 66 and in very good health...no major illness at all....just perking along and now this.  Anyway this is what the oncologist is offering me now  for the next 2 months and then another  set of scans.  Meanwhile, the oncologist is working something out so I can get the chemo in Florida.  Which leads me to this.....I got an appointment at MD Anderson in Orlando with a liver specialist to see if there is anything else to do.  Is there anyone out there who has been to MD Anderson in Orlando?  I appreciate any info anyone has.  God bless.........

Re: In the middle of this nightmare and seeking info.......

Hi welcome to the site and sorry you had to find us.
My case is different than yours.  I am 33.  I had a liver resection followed by chemo and radiation.
The chemo I got was gem/cis, but my tumor was completely removed by surgery so I have no way of knowing how I responded to it.
I know many others on the board may not have good results with one agent and then move on to some other chemo combo and can see results.
Gem/cis  seems to be what is tried first.
I'm sure others will share their stories as well.
I was not treated at MD Anderson, but I think others have been.
Best of luck to you and please keep us posted on your treatment!

Take care!

Susie

Re: In the middle of this nightmare and seeking info.......

KathyD,
I am sorry for the disappointing chemo results. I dont lnow the stats but have read that every persons tumors may respond differently to a given chemo. I can't imagine all the emotions you're going through and can understand why you're scared. Many have stabilized even with similar stage as you so please dont lose hope!  I don't know about MD Anderson in Orlando but know the one in Houston has great reputation so Id assume the ine in FL also would. Just want to offer moral support. The Gem/Cis didn't work for my sister either (well, mixed results; slt shrinkage of tumor in liver but growth of one in portal vein). Could be she wasnt on it long enough to get benefit because they dont let you have it if blood counts get too low (that happened several times). It helps to focus on next plan of action. For my sis it's radioembolization and maybe different chemo or chemoembolization later.  I know many have had success with smaller tumors using stereotactic radiation. I'm glad your Drs are quickly shifting gears. the ling-timers on this site always rec 2nd and 3rd opinions. Hang in there!

Willow

Re: In the middle of this nightmare and seeking info.......

Hi Kathy,

My daughter, Lauren has been on all the chemos you have mentioned at one time or another. If you have any questions about any of them, I would be happy to help. Different chemos work on different people. Gem/Cis is the one most people seem to get first. Tomorrow is a new day so put a smile on your face and go to chemo with hope in your heart. I know it is very difficult to be positive when things don't go well. We have been through this with Lauren, but I do believe it helps immensely to never lose hope and have a fighting spirit. I wish you all the best.

Love and hugs,
-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.

5 (edited by marions Tue, 15 Jan 2013 22:16:43)

Re: In the middle of this nightmare and seeking info.......

kathy....not everyone responds to the gem/cis combo; that doesn't mean though that another chemo won't work for you.  Statically, yes, the average response rate to chemo hovers around the percentage your doctor had mentioned however; these figures are calculated based on a large patient population  some of whom respond great whereas others not at all.  But you are not a statistic dear Kathy, you are your very own person with your very own response and there is not reason to believe that the next, recommended regimen won’t achieve positive results for you.   
Also I wanted to mention that scans only detect cells greater than 1 cm in size, as the plate of the scan itself measures 1 cm in thickness.
Until others can chime in I thought to attach some previous postings.

http://www.cholangiocarcinoma.org/punbb … 015#p41015
http://www.cholangiocarcinoma.org/punbb … 047#p48047
http://www.cholangiocarcinoma.org/punbb … 438#p50438

Hang in there, Kathy. 
Hugs,
Marion

Sorry, by the time I sent this off Susie, Willow and Pam had already posted.  Forgot to mention that you might want to inquire as to how many CC patients have been treated at MD Anderson, Orlando. I would not specifically focus on the name of the institutions rather I would inquire about the volume of patients seen by a specific oncologist.
Please, keep us posted.
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: In the middle of this nightmare and seeking info.......

Dear KathyD, Welcome to our extraordinary family but sorry yu had to join us. BTW we were neighbors and I come from Milwaukee! Actually we were visiting kids in Milwaukee when my Teddy, 73 at the time, Jaundiced and our journey began. Our 2 week trip turned in to 3 months. He too had been the picture of health. Gem/Cis seems to be the cocktail of choice to start with and like others have said everyone reacts so different. I hope that the new cocktail works for you, if not there are more combos you can try. I am so glad you are not just looking us over anymore but have decided to join us. Please do keep us posted as we truly care.  P.S. My best friend lived in Oconomowoc years ago.

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: In the middle of this nightmare and seeking info.......

Hi,
Yes, gem/ cis response rate is average about 30%.
5FU/ oxaliplatin will be better tolerated and may provide stable response to your tumors. If not the next step will be clinical trial involved targeted agents.
Where are you be treated and do you know what kind of bile duct cancer you have? ( in the bile duct outside the liver or inside the liver ).
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: In the middle of this nightmare and seeking info.......

Outside the liver I believe.  I should have the dr. draw me a picture again but the tumor shut down the duct so I had to have the stent put in.  Last picture I saw, I believe it was outside of the liver.  But all is so close..

Re: In the middle of this nightmare and seeking info.......

Hi,
With your description, I will guess you may have hilar extrahepatic CCA.
I am not a doctor, but for some unknown reason, 5FU works more effective than intrahepatic CCA which I have.
I will suggest to get another oncologic opinion after the result of the two month trial of the 5 FU / oxaliplatin .
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: In the middle of this nightmare and seeking info.......

Kathy, Welcome and sorry you had to find us. (love your name LOL!!) I am glad you have joined us, there is more info and life expierences than any doctor or hospital. I am a CC survivor and am pushing 4 years cancer free!! I have an amazing story to share, please read it at www.catherinedunnagan.com, there is HOPE!!
I did all the chemo's you mentioned, I did the 5FU for 24 hours a day for 6 weeks!!! The side effects were are all "manageable" with meds and rest. I suggest you keep ant-nasuea meds in system at all time.
There is HOPE!!
Lots of prayers-Cathy

Re: In the middle of this nightmare and seeking info.......

Good morning everyone.  Can't thank you enough for responding with your personal stories with this awful disease.
Just had first dose of Oxaliplatin and at home 5FU for 48 hours.  Wow......never thought the cold would be this painful and much of the time I am using a glass that is at room temperature.  My fingers and throat tell me if it is not at least a bit warm.  Cottage cheese this morning warmed did not go down so well  smile
Had to find something funny about now.
Everyone has been so hopeful and so was I, but I am a little shakey right now.  Hope this blows over....I am so weepy...and I think so shocked. It seems it is almost like playing Wack-A- Mole.  They  might get the tumors to shrink one place only to have them pop up in another.  My oncologist refused from the start to give a stage to my case....said he does not agree with doing that altho I am sure it is in my records.  My stage must be 5,6,7 ??  Maybe I don't want to know every detail.  He never gives survival months and said we will just keep plugging along until we find the right mix, changing as often as we need to.
Should I keep posting in this area, or move to another area of the discussion board? 
God bless you all.........

Re: In the middle of this nightmare and seeking info.......

KathyD, I am so sorry you are having this bad reaction. Instead of cottage cheese(dairy may be to hard on you right now) how about a hot cereal like Cream of Wheat that you can get in instant packets. Are you being treated in Milwaukee?
I do like your ONC's attitude about not believing in statistics and willing to try things until you hit the right cocktail.  Where you have been posting is just fine. I hope for you to feel beeter quickly!

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: In the middle of this nightmare and seeking info.......

Yes, I am being treated at Froedtert Medical college/hospital.  good people. Any hints on the "pins in the fingers" ?  It is awful and this is my first treatment.  Gloves actually don't help....I tried leather..no go.....even the countertops hurt.Thank you everyone!!  p.s.  made some oatmeal this am....went down great.

Re: In the middle of this nightmare and seeking info.......

Kathy....I have heard that in order to reduce the effects of neuropathy and cold sensitivity physicians order 1000 mg. Calcium Gluconate and 1000 mg.   Magnesium Sulfate both before and after Oxaliplatin infusion.  Side effects can be culmative therefore I would make sure to ask your physician prior to the next treatment. Also, drinking liquids with a straw should be helpful.  Glad to hear that the oatmeal went down nicely.
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