Topic: New diagnosis

My husband Gerry has been diagnosed with Cholangiocarcinoma (a rare Bile duct cancer).  He underwent liver resection on April 3 where they removed a little more than half his liver and reconstructed some bile ducts with small intestine.  The fact that they were able to do this is a gift from God.   More often than not a cancer of this type, by the time yellowing arises; it is too late to even do a resection.
On March 16, I took Gerry to the hospital with chest tightening, high blood pressure and a racing heart.  They ruled out a heart attack but the heart DR. wasn

Re: New diagnosis

My mother has been diagnosed with Cholangiocarcinoma. She was diagnosed in Feb.07. She started chemo in March so far she has had 2 rounds of Oxaliplatin with 2 rounds of Xeloda also. After the 1st dose of Oxaliplatin on 3-29 and starting Xeloda on the 30th she went in the hospital April 2 to have what we were told a stint put in.  They were unable to put it in where they wanted it but did put it in. It turned out to be an external drain with a bag. Tuesday they looked at what was done to determine if it was reducing the enlargement of the bile ducts. They wanted to wait till Thursday to try again. On Thursday it was a success they were able to get the drain to the bowl and take off the external drain. She was able to go home Thursday evening. This was a success due to lots of prayers. We thank God everyday.
On April 13th she started the Xeloda again and on April 19th she had another dose of Oxaliplatin. While at the office getting chemo she told them the problems she was having with taking the Xeloda. She was to start a new liquid form of this yesterday but on Monday evening she began to run a fever. My dad called the Dr. and was told to bring her to the hospital. Once she got there and they checked her vitals her blood pressure was 88/58, she was dehydrated. She has been there all this week. Her white blood cell count was 28000 on Tuesday but Thursday it was down to 24000 still high. They ran 4 kinds of antibodies and lots of fluids. Her bilirubin was down to 2 or 4 yesterday which is great since it was over 12 before the drain was put in. She sounded much better last night. More like she was before all the came about. This website has been great for me being able to hear other people

3 (edited by JeffG Fri, 04 May 2007 15:55:34)

Re: New diagnosis

Hi Cherryle,   Glad to her your mother finally gets to come home!!  Keep a close eye on her temp, chills, or sweating for a while.  Hospitals are surely needed but very easy to pickup infections.  I'm sure you know what I mean.  God Bless you and your Mother.  P.S.  Your mother is on the same chemo regimen I'm on.  Started  out a little rough but just finished my 5th round and going along fairly well.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: New diagnosis

Keeep hold of the bull's horns Gerry!!! Prayers will be coming your way.
Bless you and your family and pray things go as smooth as possible for you during this trying times.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: New diagnosis

Prayers are surely appreciated.  Will see Oncologists this week and plan to get a second opinion.  The first oncologists are planning to do Chemo and Radiation at the same time.  Radiation five days a  week for five weeks and a Chemo pump will be with me to infuse medicine a little at a time all the time.  Has anyone had this done in this manner and how did it work?  We're getting a second opinion to be sure this is really what needs to be done. We sure thank God for this website because we all need a support group to help us thru the storm before us.  Thanks Jeff and may God bless you and yours as well.

Re: New diagnosis

Jeff, Are you taking the oral Xeloda? Have you heard of the liquid form of that? Have you ever experienced problems with gas while taking chemo or antibiotics? She

Re: New diagnosis

Hi Cherryle,  Yes I am currently taking Xeloda pill form and Oxaliplatin by port a cath.  I have not heard of liquid form but am sure it is available as a lot of people can't swallow the horse pills.  I have only had to take antibiotics once in the last three years.  Both antibiotocs and Xeloda have caused me some pain gas related.  Xeloda initially caused loose bowels but now with reduced dosage I have had  some constipation.  But now I take duccolux stool softener 2 gel tablets on the end of day three only if nothing is moving .  It is very mild but works great in relieving gas and having a bowel movement or two on day four.  Cherryle just a reminder that all people can respond and have different symtoms and side effects.  It sounds as your mom has more going on than what I am at the moment. Not sleeping well could be several things... Xeloda, pain, stress and anxiety.  I take prescribed clonzepam before bedtime and as needed when my mind gets working overtime.  It has done me a world of good just getting that full nights sleep.  Fortunately it is not expensive. Might ask your GP about it.  It also sounds like your mom needs to drink more fluids and keep hydrated as much as she can.  It will help with many side effects.  I hope this was of some help. One last thing is I also take a pill 30 minutes before breaskfast each morning to lower my stomach acids to a minimun as the chemo has a tendency to raise acid level that can also cause discomfort gas related pain.  Bottom line is talk will your Oncologist and or Nurse and inform them of what is happening as normally you are more in touch with what is going on within your body and most of the time you need to advocate what you need.  Bless You Both!
Jeff G,

Take it to the Limit,One More Time! (Eagles)

Re: New diagnosis

cjfrancis,

I'm sorry to hear about your mother. I'm glad your husband is doing better. My mother was diagnoised with CC on 4-3-07. We find out tomorrow what treatment they are going to suggest. We are all in God's hands, and are at his will. I will pray for your husband, and your family. God bless you.

Marc

Re: New diagnosis

CJFrancis,
I have not personally had chemo and radiation at the same time.  I have had it back to back though.  I asked my oncologist about doing it at the same time but he though that because of the amount and number of years I've been doing chemo that it would be to rough for me personally.  I have talked with other people at my chemo home who are doing both and say they are doing just fine.  I only remember one guy having to hold off on his chemo for a week because his platlets got a little low and needed  to regenerate.  So to your answer, it is common to do and personally I wish I had done it at the same time.  It's like giving them cancer cells a one..two punch.  I may still look at that option down the road spite what the the Doc thinks; if I feel up to it then I advocate give it a whirl unless they got something else that sounds good. You would think I was looking at a menu hey?  God Bless ya guys.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: New diagnosis

CJFrancis,
   My husband took Xeloda along with his 5 weeks of chemo last fall. That was followed by brachytherapy. He was unable to have a resection but had excellent results with the radiation/chemo treatment. Like Jeff said it is a one-two punch. The Docs said the chemo would help soften up the tumor for the radiation to be more effective. My husband had his stent changed today and they said things looked good. No change from last time in Feb. The tumor is still gone. I really think chemo along with radiation is the best treatment course. Chemo alone just seems to wipe out your immune system to the point of no return sometimes!! Take care and good luck.  Mary

Re: New diagnosis

Thanks for the good advise.  Will see the oncologists this week and going to another oncologist for second opinion.  We will remember what you advised.  Treatments will probably begin the third week in May.  God be with you all.  We'll remember you in our prayers.  Cathy and Gerry

Re: New diagnosis

Jeff, I spoke to my mom a little while ago.She's not doing well. She's had to hook back up the outside drain bag. The Dr seems to think they may have been some of her pain. That's one thing I'm concerned about is the dr's care she's getting. When they called today they only told her to start taking two pain pills instead of one. How long will the drain last with out having to be replaced. She is seeing a Dr at UAB in Alabama. Chemo was put off for this week due to her still taking antibiotics. She'll take these daily till Sunday. The nurse had to come back out yesterday due to the vein clasped and they had to take it out and just give her the antibiotic directly. A different nurse came today and put in another IV they hope it works for a day or so. Things are not looking good. I wish she could get better care from her Oncologist are they all this way?

Re: New diagnosis

Cherryle,
   My husband had a lot of problems with his stents and drains initially. They could not get both stents in when he was first diagnosed in June 06. They managed to get one in his right duct which had to be relocated when they did exploratory surgery and then they placed an external drain to the other side. He had a lot of problems too at first. From June to Nov. he had 4 different external drains placed for different reasons and some because of their location would cause him a great deal of pain. He had one into his right side last fall that hurt so much he had to take oxycodone continuosly for the three weeks it was in. He never took any pain meds even after his initial surgery so I know it had to be bad. Eventually they were able to take all external drains out and now he just has one internal stent. I hope they can get your mothers situation under control. You may need to see another Dr and don't feel bad about being outspoken about her care. I think I drove the Docs crazy at times with my questions but I think they respect my knowledge and opinions too. They know that if we are concerned about something that it is for good reason since our concerns in the past have proven to be right. So ask questions and be your mothers advocate if necessary. Don't just let them write her off. There is a lot that can be done and she shouldn't have to suffer with pain ,ecspecially if it is because of a badly placed drain or something like that.  Take care and God Bless.   Mary

Re: New diagnosis

Thank you Mary. Our biggest problem with the Dr is that when you call the office during the day it takes forever for them to call back (is it this way with all dr's) and then it's just been take more pain meds. I don't understand why they are not having her come back in and check the drain. If she's having to hook it up to the bag then something has to be wrong inside wouldn't you think? I am just lost for words on how I feel she's being treated. I live 100 miles away and am unable to be there everyday. I have to hope she and my dad will speak up to the Dr. How would you go about getting 2nd opinion with chemo already being started and the drain already being in. Would another Dr see you while under another Dr's care?

Re: New diagnosis

Cherryle,
   Is the drain actually draining? Your liver produces a lot of bile each day and it may fill the bag several times a day if it is functionimg properly. I was scared to death during one period my husband had so much coming out I called the Doc because I thought it was too much. At that time they had us clamp it to try and make it go through his ducts- they were double? drains so they were supposed to drain into his intestines too and the bile was taking the path of least resistance and going out the external drain. As far as Doctors I really don't know how to handle it. We did go to another hospital and Dr to see what they thought but it was after his treatments and before the next step was discussed. I did feel better because they said the same thing his first team at OSU said. WE were also extremely lucky at OSU as far as his main Dr. He was hired and started one week before my husband became ill. My husband was his first patient at OSU and for the first couple of months it was like we had our own personal Doc. It was awesome because he would call us at home and chat and stop and spend time when Tom was hospitalzed whenever we needed him. He got busy pretty quickly though and things changed but they still always answer their phone persoally and get right back to us. The Doc actually still calls personally. I don't think it would hurt to just see if someone else would review your Mom's history and records. I really do think they would tell you if they disagreed with the treatment. This is life and death and not something frivolous so they shouldn't mind doing that for you. Feel free to ask as many questions here as you want. I started coming to this site last August and it has helped a lot. We've all been where you are now and understand. It's very scary and frustrating! Take care.  Mary

Re: New diagnosis

It is draining in the bag a lot. See when they 1st put it in it was draining to a bag then they got it in to drain to the duct that worked for 4 weeks. When she complained about hurting again and she says it feels like a gas pocket they told them to hook the bag back up to the drain. My dad say's he's been empting the bag every three hours so that a good bit coming out. She just had 3 good days last week and that was while she was in the hospital. We just knew she was going to be feeling better for a while but 1 day after being home trouble starts again. Dad say's she's nauseated and throwing up this morning. I just don't have a good feeling about what's going on. You did get lucky with having such a great dr. The only time they talked to the Dr on the phone was when my dad got tired of them not calling back and blew up on the girl answering the phone the Dr did call back then. The Dr didn't even see her last week when she was in the hospital for 4 days, his team saw her. Thanks for the support. I'm glad I found this website. Mom's a registered user but has only posted one time. She never feels well enough to get on the computer anymore.


Cherryle

Re: New diagnosis

Hi Cherryle,  I'm so sorry your Mom is having so much difficulty and pain .  I wish I could tell you something that would help but I can't.  I agree completely with what Mary has posted as she and her husband have been where your Mom is at.  I have had abdomen drains a few times due to post surgical infections but thats it.  Like Mary said You got to really advocate for yourself.  It don't matter what stage of the game your at, if your Mom and Dad feel they are not getting the proper care and their Oncologist is not envolved enough then speak with the hospital advocacy team member or Head Social Worker for some assistance.  Cherryle dear you are about 100 miles away and I can imagine you are at wits end not being there and seeing whats going on.  Please hang in there and if you really need to change hospitals go straight to the emergency room to get things going.  It's going to be tough girl and I can't tell you what should be done but go with your gut instincts.  Don't feel afraid of asking for the hospital advocate and let them know your worried and scared and see if they can check things out for you.  This is  part of the roller coaster ride and sometimes with this CC you have to stay on the ride until it stops.  My heart goes out to you and your Mom and Dad.   I pray only the best of outcome for you and that things calm down soon.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: New diagnosis

The other thing my husband dealt with was an abcess. Sometimes those can occur around the drain site or in the liver. Have they done any scans lately that would pick that up? My husband was very nauseas and vomiting because he had an abcess that blocked off his bowel. He became very dehydrated and was in pain until they discovered that and drained it. He was instantly better. Even with our good Drs. it took 2 weeks to get them to actually look into what was wrong and it was a wonder it didn't burst and cause sepsis. They took us more seriously after that incident and would always check things out right away if I called about something. I really think your Mom should see someone else if possible. You shouldn't have to get upset to get them to listen! I hope you can get things worked out soon. Just hang in there and support your parents as much as you can. I'm sure they really appreciate it.  Take care. Mary

Re: New diagnosis

Jeff, What is the pill you take before breakfast to lower your stomach acids? I have seen on the site others talking about different herbal medicines or natural things they are using to help fight this. Can someone give me a list of these things and what they are suppose to help? Things like carrot juice, milk thistle.
Cherryle

Re: New diagnosis

Cherryle,
  Milk Thistle is for improved liver function and to help with jaundice. Carrot juice is full of antioxidants to fight the cancer and help immune system. My husband takes both of above then fish oil for the omega 3 benefits, maitake mushroom for their anti-tumor benefit and immune boosting ability, beet extract for liver and bile duct health. He drinks lots of green tea(iced now) and lots of spinach, broccoli and fresh fruits and veggies, very little sugar and meat. Lots of water too- ecspecially now because he is having some itching and a little jaundice. His stent was changed Mon. but it was about a week too late and must have been clogged. He hasn't been itchy since his diagnosis last year. Hopefully both will clear up in a few days.  Mary

21 (edited by JeffG Wed, 09 May 2007 20:28:40)

Re: New diagnosis

Cherryle,  I take 20 MG Capsule of OMEPRAZOLE 30 minutes prior to breakfast each morning to lower stomach acid.  It protects you from inflamation , ulcers, mouth sores by keeping your digestive acids low and calm, especially during time when taking chemo treatments.  It's manufactured by Altra Zeneca.  Basically an ant-acid.  It's contents is sodium magnesium.  It has also for me kept the nausea under control. I have hardly ever used my anti nausea medicine for the last 2 years.  I take when having chemo treatments  and any other time if I think my stomach acids are getting to high.  Mostly due to something I ate or ate to much of.  It can get it at most pharmacies or a generic brand of it.
Jeff G.  P.S.  It has also been used for Zollinger-Ellison disorder which is tumors of the stomach, pancreas,and duodeum caused by stomach acid, an H-2 enzyme blocker.

Take it to the Limit,One More Time! (Eagles)

Re: New diagnosis

Where do you find the Milk Thistle, carrot juice,& maitake mushroom?

Cherryle

Re: New diagnosis

I make my own carrot juice with a juicer. I use 2 lbs a day to make 16 oz of juice. I buy the milk thistle and mushroom capsules at my local health food / supplement store.  Mary