1

(6 replies, posted in Good News / What's Working)

First, I would like to thank Leonard and all of the others who encouraged Ritchie.  Leonard was "right on" when it came to things.

Ritchie had an ERCP prior to, and after, two series of five days of radiation.  He also had two chemo treatments.  His reaction to the chemo was so severe, both on his skin and with the lowering of his blood count, that they were unable to continue.

He was admitted to Riverside Hospital, Columbus, Ohio, on May 9th.  He had a Roux-En-Y, with a resection of the left lobe of the liver on May 10th.  It was deemed to be succesful.  He was released from the hospital on May 27th. 

Home health care was provided for a time, but then it became home hospice care.  He appeared to be doing well for a while, but was in a lot of pain.  As his health declined, he blamed the medication and began to spit out the pain pills.  He was transferred to Kobacker House Hospice care on August 10th.  An angel came to take hlim home on August 12th.  He is greatly missed by those who love him.

I'm not a doctor, but I believe that the radiation shortened his life.  A friend, who is a doctor, saw the results of the before and after ERCPs.  The doctor commented on the dead tissue in the second ERCP.  The area covered by the radiation is small and the tissue delicate.  I believe that tissue necessary for a successful Roux-En-Y was damaged.  But then again, perhaps that's just the sorrow talking.  I miss his so.

Ritchie's mate

2

(5 replies, posted in General Discussion)

My rash is better.  At least it looks better. The prednisone has taken care of the outward appearance.  I use Sarna, baby oil on a hot wet wash cloth, prescription creams, and take Atarax for the itching. I still itch.  I also ache all over (pain medication doesn't seem to help); and feel as weak as a kitten.  The Gemzar and radiation really did a job on me. 
     I'm too weak, at the present time, for surgery.  They have, however, set up an appointment for pre-testing my heart to see if I can handle surgery.  They also are setting up an appointment for me to have another ERCP (They want to see if there has been a change since radiation and chemo).  When I asked the surgeon about inserting a stint at that time, he stated that it wouldn't be necessary because I would be having the surgery shortly thereafter.  The Klatskin surgery is to be on May5Th with me being admitted to the Riverside Methodist Hospital (Columbus Ohio) on May 4Th.
     The surgeon plans to do the work laproscopically, and then make an incision lower on the abdomen to remove the resected part of the liver.  Have any of you had Klatskin surgery done laproscopically, or know of someone who has had such a procedure???
     Knowing that everyone is different, I would like to find out (from people who have been there) as much as possible about my up-coming surgery.  With Laproscopic Klatskin Surgery, how long will it be before I can get out of bed?  Is there a lot of pain with the surgery?  The doctor said that I would be really sore.  Is there anything that I can do to help myself with the pain?  After release from the hospital, what is home recovery like, and how long does it take?  Is there any more danger of infection when surgery is done laproscopically than when done otherwise?
     I'm still wondering IF I should even HAVE the surgery.  That's why I suggested that a stint be inserted during the up-coming ERCP.
     I would appreciate information from any and all who can help me.

Sincerely,
Ritchie

Yesterday, after getting back from seeing the doctor about the extreme itching, I received a phone call from the surgeon.  He wants me to come in on the 30Th of March for an EUS.  I ""googled" the letters and discovered that  an endoscope is used to get into close proximity to the bile ducts.  I guess that the surgeon is going to talk to me about having one.  Maybe then he'll tell me anything that he might know about how long this itching is going to continue or/and if the surgery will be scheduled shortly.

The GP didn't have an answer for the rash.    When I asked the oncologist if the cancer could be  causing it, he stated that he didn't think so.  He felt that it was a reaction to the Gemzar.  It's difficult for me not to believe that the common bile duct wasn't damaged by the radiation, and that there is a back up of bilirubin.  I mentioned a blood test to the the GP yesterday, and he said that the Surgeon would be giving a blood test for that.

Sometimes I wonder if it's worth it.  My quality of life has already deteriorated greatly.   I can't see surgery just to have a couple of months more of life.  It's rather difficult to shake that idea of being in the 1% category

Sincerely,
Ritchie

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

Dear Lainy, Nancy, and all!

    Thanks for the notes of encouragement.  Thanks also, Lainy, for the suggestion of Sarna.  We got some and are using it.  He says that it helps somewhat.
     We went to the GP today.  There were no new suggestions about the rash.  Ritchie hadn't been taking the Atarax three times a day (He was leery of the side effects.), so they told him to take it as directed.  He has and is a little out of it right now.
     I still don't know how long it takes for the Gemzar to get out of a person's system.  It's been three weeks since his last chemo treatment.  His body is still heavily covered with the rash, and he has extreme itching.
     Please, anyone, if you've had a similar situation or suggestions let us know.

Ann for Ritchie

PS:  The oncologist said that Ritchie was allergic to Gemzar.

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

Dear Nancy,

     My name is Ann, I'm writing for Ritchie as he really isn't feeling well.  Thanks for the note.
     Ritchie had a round spot from the radiation also.  It looked like a heavy sun-burn.  His other, multiple, round red spots (from pencil size to quarter size) were deep red like blood leaking under the skin.  The  rash is very heavy over  his back, sides torso, arms etc.  We went to see the oncologist today.  He said that Ritchie was allergic to the Gemzar and wouldn't be able to take it any more.  He gave him a prescription for more prednisone, an antihistamine, and Pepcid. 
     Since last week, the dark red spots are better.  The rash, however is worse.  It's very widely spread, and he is itching, itching, itching.  Nothing seems to help.  I want to do something to help give him relief, but there doesn't seem to be anything I can do.
     Does anyone know of someone who has had a reaction to Gemzar? If so what did they do for it?  How long is it going to be before it gets out of his system?
     It would be nice if we could consult with someone from another hospital, but he really isn't well enough to travel.
    Thanks again for the note.  When you are discouraged, it helps to hear from someone who has been there.

Sincerely,
Ann (for Ritchie)

Hello all!
     My trip to the oncologist resulted in a prescription for prednisone and directions to use the creams which I already had for itching.  Two days later I began to break out (this is in addition to the dark red blotches which were on my body).  By the third day I looked like I had the measles.  A call to the doctor resulted in the recommendation that I continue with the medication and hold on until Monday.  At that time I was to come back in to see the oncologist.   Chemo was to again be canceled.  It's been three days since  I called the doctor.  Some of the red blotches (ranging in size from a pencil eraser to the size of a quarter) have lightened.  The rash, however, is just as bad.  It really does look a lot like the measles.

     Have any of you had rashes on your arms, torso, and legs like that?

     Thanks for any responses,

Ritchie

Dear Margaret,

Thanks for the post.

As shown by an ERCP, I had one fully operational duct, then I had radiation.  Now my itching has greatly increased, and red blotches (as well as bruises) are forming on my skin.  I'm afraid that the good bile duct has been destroyed.

Tomorrow, I am to see my oncologist.  I'm going to ask what my options are, and plan to refuse further chemotherapy until some satisfaction can be given to me as to why things are going downhill so quickly.  I'm going to ask for another MRI or another ERCP.   Something, that will show why things don't seem to be getting better at all.  I think that I'm going to ask for a stint or something to decrease the itching.  Right now, my quality of life has gone to pot, and I don't believe its directly due to the CC.

I started out with one good bile duct and no evidence of cancer anywhere else.   They said they couldn't put in a stint during ERCP because I was throwing up.

Now I end up itching worse than ever (by the way you don't happen to have anything good for itching do you?), increased nausea, weakness beyond belief etc. etc. etc.  I don't mean to complain, I have so very much to be thankful for, but I got on a roll there.  Forgive me.

Perhaps I am wrong, but even before you wrote I was thinking that the radiation had destroyed the good bile duct.  If so I'm "pissed".  Pardon my language.  I know that it would have happened sooner or later anyway, but they said that it was slow growing.  Go  figure!

I'll stop bugging you, but I want you to know how much your information helped me to think that I'm not completely "out of it."  That perhaps there's more to the way that I'm feeling than my imagination.

Sincerely,
Ritchie

A quick review:  I've been diagnosed with bile duct cancer, have had 10 radiation treatments (5 and 5, off weekends), and two Gemzar/Kytril/Decadroin treatments (one each week).

Today, when I went in for my blood work before chemo, I knew that I felt terrible, and my nausea wasn't being stopped by the pills that I was taking.  I also was having some heavy, dark red rash, and a little bruising where there should have been none.

They told me that they couldn't give me chemo today because of a low platelet count. My platelet count had gone ;from 221 about four weeks ago to 60 today.

Here's the question.  I don't really know what platelets are.  Are there any suggestions as to how I can help to get the count back up?

How long will the overall extreme flue/fatigue feeling last?  Will the fatigue ease now that I've finished radiation, or will I have to wait until I've completed chemo?  Will the fatigue lessen as my platelet count goes up?

Quality of life is very important to me, and knowing how the chemo will effect me will influence my thoughts.

Any suggestions would be appreciated.

Ritchie

11

(15 replies, posted in General Discussion)

Lainy,

     You said that no one takes care of us like we do,....and that's the truth!  I don't think that I meant "scary" scary, but more as an expression of astonishment.  There are so many things happening out there, that it's nice to know that there are people "on the alert."

Sincerely,
Ritchie

12

(2 replies, posted in General Discussion)

Best   wishes Joolz822!
Ritchie

13

(6 replies, posted in General Discussion)

Hi!     At a time like this, words probably don't help much.     Roslyn seems to have hit upon the only solution, enjoying the time you have together.  We'll be praying for you.

Ritchie

14

(15 replies, posted in General Discussion)

Lainy,

     Wow!   As a patient who has read some of the terrible things that can happen when you have excellent care, this is scary.

Ritchie

Beth,

It's those who go before, and wear down the rough spots, that make the path a little smoother for those that follow.

Best wishes,
Ritchie

Melanie,

Best wishes and prayers.

Ritchie

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

18

(4 replies, posted in Adverse Reactions & Side Effects)

Thanks Marion!
Ritchie

19

(4 replies, posted in Adverse Reactions & Side Effects)

I'm so glad that I found this posting.  I've had hiccups for two days.  They started after my first chemo treatment.  I don't know why I didn't connect the chemo  (Gemzar, Kytril, and Decadroin) with  the occurrence of hiccups.  In my knowledge, I have never had hiccups like this before.

Thanks for the posting.  It always makes things a little easier when you understand what's happening.

Ritchie

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

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

22

(5 replies, posted in Chemotherapy)

Halinamary, 
I hope that you and your mom ore doing O.K.  It's very difficult to make decisions for others.  The important thing is that you are there, and that you are trying to do what is best for her.  Remember during the process that you have to take care of yourself.  You need strength to be there for her.
Best wishes!
Ritchie

Dear Jemima,
I noticed that your original post was on June of 2010.  I have had some of the same questions.   Would it hurt to wait a while?  I'd be interested in knowing if you did wait.  If so, were there any serious repercussions?
Best wishes for you and your Mom.

Ritchie

Thanks Lily.  Everything helps!  The information helps. Your reply helps!

Ritchie

25

(11 replies, posted in General Discussion)

Just wanted to say that you can add one more person praying to that list!

Ritchie