Topic: Gemzar,Kytril, and Decadroin

The beginning of the game?
      It's been a while since I have written because most of what was happening were tests.  In review, I have cholangiocarcinoma of the left bile duct.  The tumor, however, is protruding into the common bile duct.  (It was discovered during a cat scan of the lungs.)   Suspicions were confirmed by an MRI and an ERCP.  They were taken at Riverside Hospital in Columbus, Ohio.  The surgeon suggested that perhaps the tumor could be downsized and the common bile duct saved.
       Monday, February 21st, I had my first radiation and chemo treatment.  I was given Kytril (anti-nausea), and Decadroin (a steroid), prior to the Gemzar (chemo) treatment.  I've read a few comments about Gemzar.  Does anyone know anything about Kytril or Decadroin?????????  I'm to have five daily doses of radiation, be off Saturday and Sunday, and have five more days of radiation.  The chemo treatments are to be, concurrently, one day weekly for seven weeks.  At the end of six weeks I'm to be re-evaluated for surgery.  (Of course, all during the process there are to be blood tests etc.)
       While sitting in the waiting rooms, it's easily to see that cancer is no respecter of persons.    There are all ages, sizes, sexes, and colors.  What is good to see is the persons keeping themselves occupied.  Reading, working puzzles. joking,  covered in warm blankets and trying to sleep the pain away.  God help them (us) all.
       I would appreciate any comments that anyone has regarding the path that I'm currently traveling.   Are there any things that I have to expect from the chemo/radiation.?  I'm especially interested in the surgery.  Does anyone know how the chemo/radiation may effect the surgery?  Does anyone know of any do's or don'ts?  Have any of you had half or more of your liver removed  after chemo/radiation?

Ritchie

2 (edited by Joolz822 Wed, 23 Feb 2011 00:01:14)

Re: Gemzar,Kytril, and Decadroin

I had half my li_er (the key between C&B doesn't work) taken out in Feb 2010 but not for  CC. I had run of the mill li_er cancer. It took me a long time to  feel human again. I had chemo/radiation after the surgery. It was tough... at least for me. Then I was diagnosed with CC in Dec 2010. My remaining li_er is riddled with tumors. Gem/Cis has not worked.

My Onc says there's nothing else she can do for me.  I ha_e an appt at Fox Chase (all they do is cancer) here in Philly on March 10. Looking for options.

Good luck with your treatment!

Re: Gemzar,Kytril, and Decadroin

Thanks to Joolz822,
     I appreciate your posting.   It helps me to know that you did "feel human again," at least for a while.  I know that, with your situation, you can't be feeling the greatest right now...Yet, you took time to write the note.  Thanks!  I pray God that you will find some good options.

Ritchie

Re: Gemzar,Kytril, and Decadroin

I had radiation (once daily, except for weekends, for 28 sessions) and 24/7 chemo (FU-5) in the fall of 09.  I felt absolutely terrible - nauseous all the time and extremely tired (in bed most of the time).  Turned out the treatment gave me an ulcer on my esophagus.  After being treated with prilosec (at the end of the treatment) I improved rapidly.  I have learned you can be very very sick and then feel completely fine once again.  I do now.  Except for chemo brain and that I get tired more easily (which could also be just getting older), I do not feel like I have cc.  It's just always knowing I do have cc and the MRI's every 3 months.

Last year I did the gem/cits chemo combo. Had a few rough spots but not too bad.  During that time I they gave me Kytril and dexamethasone (steroid) to prevent nausea.  The drugs worked great!  I did gain unwanted weight, though.

Everyone reacts differently.  Many people on this site have had tumor shrinkage.  My tumor never shrank but it has stayed stable since treatment. I consider that great news and the chemo did work in keeping me stable with no new tumors.  The reason I had my second chemo was to keep things stable.  It was a hard decision to start chemo when I felt so good.

Since I have not had surgery, I do not know about having 1/2 of your liver removed after chemo/radiation.  I do know that I only have 1/2 of a functioning liver and it does a wonderful job for me.

They've probably told you this, but drink lots of water the day before and the day after chemo.   I'm not a water drinker, but I drank lots of lemonade.  I was told the liquid should be clear, but I also counted my daily 3 glasses of skim milk.

Best wishes on this new journey.  God bless.

Kathy

Re: Gemzar,Kytril, and Decadroin

Dear Kathy,
     I truly appreciate your posting.  It's great to know that, at least, you have been stable with no new tumors.  You have really been through the mill.  Reading that you can be very, very sick and then feel completely fine again must give many hope.  When you're down in the depths, it's sometimes difficult to believe that you'll ever get out.
     That idea about age seems to be a factor for me also.  No one ever told me that getting old could feel like this.
     Thanks again, and keep on truckin.

Ritchie

Re: Gemzar,Kytril, and Decadroin

I had radiation and oral chemo (Xeloda) concurrent 5 days a week for 8 weeks. I finished up in Sept 2010.  I experineced  nausea, diarrhea, lack of appetite and was tired.  ALthough I took the radiation treatment in the afternoon and was well enough the next day to work 1/2 day in the morning.  Rest when you are tired and eat when you can and you will make it through.  After completion of treatments I still have a time gaining weight, but remain in otherwise good health.  The Xeloda did cause some stomach errosion and had to discontinue a few weeks to threat that problem and have to be careful what goes in  to keep the tummy in good shape.  Most recent I was prescribed a mega dose of vitamin d and that caused a set back with my stomach so I'm back on meds to coat the stomach and eating light and soft foods again.  My best to you!  Ray

Re: Gemzar,Kytril, and Decadroin

Oh.. forgot to mention I take Tigan for nausea.  It is an old time med and not prescribed as much today.  My gastro doc gave it to me and it works great for me.  I took one pill in advance of radiation and it kept things calm
most days.
The oncologyst recommended something else but I declined any other prescription since this worked so well.
Ray

Re: Gemzar,Kytril, and Decadroin

Dear Ray,
   
     My name is Ann.   I am writing for Ritchie because he isn't feeling well at the present time.  Thanks for your note.  It's encouraging to hear that someone who has been where he is, is doing as well as you are.  It appears that he has a long way to go, however.  The oncologist has told him that he can't take chemo any more because of his allergy to Gemzar.  He now has a terrible rash with a lot if itching.  He is to contact his surgeon, but the oncologist didn't think they could do anything until he is better.
     So for now, it's itching, itching, itching.  I worry about him and wish that there was something that I could do.  Then the sad thing is that when that's better there's still a long road ahead.
     You people who have been there are to be commended.

God bless you,
Ann

Re: Gemzar,Kytril, and Decadroin

Ritchie and Ann,

Sorry to hear you are not feeling well, Ritchie. Hope things are getting better.

I have a couple of friends who have had allergic reactions to chemo.  (different cancer than us)  It seems these allergic reactions can come on at any time during the treatment, even if not at the start of.  One of my friends was put on steroids for her itching and it helped a lot.   Hope you can find relief. 

Kathy

Re: Gemzar,Kytril, and Decadroin

Ritchie and Ann.....I am so sorry to hear that things still have not settled down.  I am wondering as to when the last blood test has been taken.  Is the bilirubin at an acceptable level?
All my best wishes,
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: Gemzar,Kytril, and Decadroin

Ritchie and Ann - My son had a strong allergic reaction during one of his chemo treatments.  He had difficulty breathing and his throat closed up.  They also gave him steroids and -- the next treatment -- they administered the dose very, very slowly and he was able to handle it.  I'm sorry you are having such a tough time.  There is more than one type of chemo drug.  Perhaps your oncologist will find a different protocol for you.  Hoping you feel better soon.  There are lots of email strings on this site about itching and what to do.  Perhaps you or Ann can read those to see if there are any good suggestions for you.  Best wishes - Nancy

Mother of John who lost his battle on Oct. 9, 2009 at age 30....

Re: Gemzar,Kytril, and Decadroin

So sorry Ritchie is not doing well,  I know how down one can feel and how nice it is to feel a bit better.  My oncologyst recommended the gemzar after I completed the Xeloda and I declined to take it.  Since I had a tough enough time with the Xeloda I decided to take my chances that the xeloda and radiation did the job.  I'm 78 years old and didn't want to cause more complications than experienced from chemo and radiation. I developed calcification of aortic valve and renal artery from the treatments.  Any more treatment would have worsened an already bad condition.  It was adjuvant therapy only... just in case they missed something, and since my tumor markers were in the teens decided it best to try to conserve the heart and kidneys that suffered from xeloda and radiation.  I'm moving closer to my one year mark and still encouraged by my recovery.  Once Ritchie is past this rough patch, I feel certain he will find the correct tolerable course of meds/treatments to get him back on track.. and hopefully ready for surgery.  I have read remarkable stories of patients that had success with downsizing tumors in preparation for surgery.  Stay Strong!
Best wishes, Ray

Re: Gemzar,Kytril, and Decadroin

Hello everyone and thank you for your notes.  Right now we need all of the encouragement we can get.  Right now, I'm at the point I can almost understand Ritchie being hesitant to do anything.  I'm glad that his reaction to Gemzar didn't shut down his breathing the way Nancy's son's was shut down.  He has had some breathing problems, but not that extreme.

As far as his Bilirubin, it was within normal ranges before he started chemo.  Since then, he has had a lot of blood tests, but they don't show Bilirubin.  Maybe I just don't know how to find it.  I'd type off all of the little letters, but a STORM is coming up.  I'm going to have to get off of the computer.

He is on steroids.

Thanks!
Ann

Re: Gemzar,Kytril, and Decadroin

Definitely ask about the bilirubin count.  It's a blood test they have to keep an eye on.  I would call the lab or doctor and ask where to find it on the lab work sheet so you can keep track of it.

Re: Gemzar,Kytril, and Decadroin

My Father age 80 has been diag with intrahepatic Cholangiocarcinoma of size 6cm by 6cm , poorly differentiated in seg iv B extending into the porta . there is mild dilation of intrahepatic bilary radicles. The dr has suggested therasphere. kindly guide. what is the life span without treatment ?  & with treatment ? Is it therasphere viable.
what to do for jaundice in such cases
Side effects my email naman_nirmal@rediffmail.com

Re: Gemzar,Kytril, and Decadroin

sitaram....Metal or plastic stents allow for drainage of bile and reduce or, eliminate the jaundice caused by bilirubin build up.  This information should have been given to you.  Please, contact another physician familiar with this disease.
All my best wishes,
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: Gemzar,Kytril, and Decadroin

Sitaram - No one here has the answer to life span with or without treatment.  This disease is different with each individual.  I have heard good things about theraspheres.  Where is your father being treated?

Mother of John who lost his battle on Oct. 9, 2009 at age 30....