Topic: Stepdad with cc

Hi everyone!!!  I use to read on this forum very frequently when my step dad was diagnosed with cc 2 years ago.  They removed 70% of his liver and he underwent some chemo and was doing very well until a little over a year ago the oncologist said the scan showed lots and lots of lymp nodes and we should let nature take it's course.  We then moved to a different oncologist at the Markey Cancer Center who couldn't believe how wonderful he looked and how active he was golfing, working out and this is a 70 year old man who is just full of life.  He said there was nothing wrong and he didn't need any treatment right now.  Everything looked great for what he had.  Several months later a few lymph nodes did look larger in the neck and they did radiation and then some in the stomach and more radiation and then everything looked good again and said he would see him back in 4 months.  After this scan now the cancer is back in the liver, the entire chest wall cavity, stomach and mulitiple lymph nodes.  The doc says that most people at the point decide not to do any treatment and enjoy the time they have left that the chemos that are left to try there are only a 30% chance they will prolong his life and will make him very very sick. 

My dad died of colon cancer almost 10 years ago and he only lasted with us 8 months because his was so advanced they couldn't even budge the tumors. 

This is just so hard on my mom and my family that these two were able to find each other and now he is going to be taken away from her from this awful disease. 

Has anyone had the same situation and had any help at this point?  What start to happen?  The thing is he is still playing gold, and looks wonderful.  The bad thing is he can't eat much and is getting tired a lot more easy.  Starting to looking a little jaundice maybe.

Re: Stepdad with cc

sg.. so sorry for having tragedy strike not just once but, twice in your family.  The question of chemotherapy in this advanced stage is most likely one being debated, by most.  As you have been visiting this site for quite some time now you must have noticed the approaches vary, greatly.  Certainly, I would ask for another opinion in re: to treatment as even the medical community differs in their approach.   
A 30% chance of response could possibly include your Step Dad and he might just be the one who is tolerating the treatment, well.  So, one never knows until it is tried.  On the other hand with this cancer being slow growing possibly, with stints and his bile draining to keep him comfortable he may live comfortably for some time to come.  Palliative care encompasses many things.  I am sure for others to be able to help you along with your questions.
My heart goes out to you and your family,
Marions

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: Stepdad with cc

Thank you so much for the quick response.  The scary part is everything had held it's own for almost 2 years and then bam it came back in the liver, appreared in the chest wall cavity and the entire stomach area as well as multiple lymph nodes in the stomach area.  You mention stints and is bile draining I am not sure what that means.  I guess I wonder once it starts spreading as this has how quick it continues?

Re: Stepdad with cc

sg...I am hoping for others to answer some of your questions, also.  Generally, over the weekend the postings on this board slow down, significantly.   I was mentioning the stint in re: to the jaundice you might be seeing.  It is something you would want to mention to the physician.  In our case, when my husband was battling this cancer it was the physicians questioning me in re: to any yellowing of the skin or, cornea as it sometimes is not very noticeable under specific lighting.  I realize and understand your frustration with the recurrence of this cancer.  It is heartbreaking.  Supposedly, this cancer is considered to be slow-growing although, I was explained that two years would encompass this concept of slow growth.  Doesn't appear slow enough for me, either.  Hopefully, with the help of the physicians and the wonderful people on this board your family will be knowledgeable to make informed decisions in re: to the further treatments of your Dad. 
Until others can respond to you it might be helpful to use the "Search" function.  Also, you might want to read up on the description of Cholangiocarcinoma on top of the page.  In addition too, you might want to re-post some of your questions as sometimes the threads are lost due to other's writing in.  I am so glad for you to have joined our CC family although, as always, I wish it had been for other circumstances.  Thinking of you and wishing for the absolute best.
Marions

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: Stepdad with cc

Hello SG,
I am so sorry for the reason you had to come to this board. CC is a very nasty cancer and according to the specialists in the Netherlands, even after a "successfull" operation it allways returns within 2-5 years. The fact that is spreading so much is not good. There are people who respond to chemo, but most don't. It seems the most successfull when the patient tries to live on and be active as he used to. And taking extra vitamines and omega 3 helps slowing down the growth. Happiness is another thing that helps, a happy person has more resistance. Now I hear you thinking how can one with this cancer be happy?? Believe me, it's possible. My husband was diagnosed last year and surgery was broken off because the cancer went to far into the liver. He went back to work, plays squash, runs and bikes and he is really enjoying every day. Instead of the 2-3 months lifeprediction he got, we are more than a year further now and we had a wonderful year, cause we see it as a present. And yes, by him too the cancer is spreading. But because he literally resists to lay down, but goes on doing what he did, there is no energy loss. And also no weight loss. He doesnot like eating anything as he used to, but what he likes he eats a little more of.
I wish you and your family strength and the will to fight. I sincerely hope you will have more happy time together.
Thinking of you,
Iris.

Re: Stepdad with cc

Thank you Iris that is so very true and so very encouraging.  It is always good to hear that people have lived longer than what they were told.  My step dad doesn't want to know his time frame because he doesn't want it to be that way.  He wants to continue on golfing, going places and enjoying my mom and his famly and he says he knows his body.  Thanks again for the encouraging words and I hope your husband is doing well.

Re: Stepdad with cc

Update on my stepday and hope for some words of encouragement and help.  I posted last in June about my stepda'd oncologist telling us it was time to let nature run it's course and we decided to go back to the surgeon who did the liver resection almost 2 years ago and he hadn't even been cc'd on anything in regards to what they were doing for him.  He said he wanted him back on chemo which he had only taken once and that was a year and a half ago.  Well, 2 weeks ago they did a pet scan and then put in the port to start chemo which is suppose to begin this week.  But over the last 4 weeks he has gone down really fast.  He can't eat, sleeps all the time, is in a lot of pain and is having trouble breathing.  Why do they wait so long to take action?  I just don't get it .  This is a precious life we are talking about and they just see when they can put it on the schedule.  His cancer that we of is back in the liver, many lymph nodes in the stomach area, the entire chest wall cavity and the sternum. Has anyone been at this point and found help or treatment that worked.  My mom is just having such a hard time and we are not giving up.  It is just not fair.  Where do we go from here?  What happens toward the end?

Re: Stepdad with cc

Dear Sherri,   Sorry to hear things have gotten worse for your stepdad.  My cancer came back after resection of my left lobe and gallbladder.  It is back in my right lobe of liver,both lungs,rib bones, soft tissue near heart and eshopagus, soft tissue tumor tickling my spinal roots again and the lining of my stomach.  Surgery is out of the question, radiation may help for awhile, and still some chemo trials I could try.  Being straight up with you, once it has mets evwerywhere, trying different chemos could slow the progression or may not help at all.  There are novel treatments in the works, but years from being applied to humans.  Self advocation is your number one weapon right now.  Being persistent and letting the doctors know your expectations.  If no call backs ,you call them.  We all respond differently to treatments, so no one can say it is time to give up.  After saying that you and your stepdad will know when and if it is time to throw in the towel.  Thed oncologist and surgeons are only willing to go so far.  Some will push it as far as you want but it don't mean the outcome is going to be any better or worse.  It's not fair I know.  Get some more opinions from top surgeons and oncologist.  Then decide from there haw far you want to go and what type of treatment your stepdad is willing to take on.  Sometimes the location of tumors or the number of tumors can prevent any treatment other than trying to extend life and pallitive care to keep you comfortable.  I'm sorry to be so blunt, but I'm really only describing my situation.  I am taken a proactive approach and doing (EFT) Emotional freedom technique to see if increasing my body's energy by dumping negative emotionas from the pass may help in more ways than one , i.e. pain. emotional, progression.  I still believe in hope and always will. Some may say that is denial but there is a big difference.  Keep knocking on doors and get the answers to your questions, but remaining realistic, as heart wrenching as it can be also is a player. Wish and pray for the best for your stepdad.
God Bless,
Jeff G.

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

Re: Stepdad with cc

Thank you Jeff and I have a read a lot about you and you are definitely an inspiration to all.  do you mind if i ask how old you are?  I not only lost my dad to colon cancer but I lost my grandmother to milenoma my father n law to a rare lymphoma and my sister in law to breast cancer.  This is just nasty stuff.   My stepdad and mom and in Louisville,KY today as he is going in for a shot today to prepare for the chemo tomorrowDo you have a lot of pain with where all of your tumors are?  I know they say the chest wall is very painful and especially where it is "tickling" your spine.    They have only done chemo on him one other time and I think it was the gemzar and he tolerated it pretty good.  the bad thing is now he is swelling really really bad in his stomach area and I wonder if that is causing him so much pain and making it hard for him to breath.  Mom said yesterday that he couldn't hardly walk.  it is so hard to know what to do but I told mom that they may need to drain some of the fluid.  he is eating so very little and that is so concerning.  I wanted to ask if many people have heard or talked to Dr. Jerome Canady and what you thought?  I also wanted to see about the clinical trials and what are your thoughts?

Re: Stepdad with cc

Sherri,

I posted this on another discussion board. Don't know if you saw it or not. This is what I was told by a 2nd year med student as to what to expect.  I wish I had know all of this before my husband passed away as it would have helped to understand what was going on.  Everything she says here is exactly what happened with him. It may help you.


>> cholangiocarcinoma is a cancer of the bile ducts- vessels that drain
>> bile into and out of the liver.  it is a weird tumor in that it is
>> very silent until it is large enough to impede on other organs around
>> it (ie. liver, gallbladder, pancrease, etc).   by the time it
>> manifests itself in symptoms such as turning yellow, abdominal pain,
>> itching, vomting, nausea, and things like that, it is often spread to
>> a point where it is not able to be resectable by sugery, which is the
>> only definitive cure.  thus, a lot of the management is by palliative
>> measures and pain management because of the late diagnosis.
>>
>> there is a higher prevalence in asia due to some kind of endemic
>> chronic infection associated with liver flukes.  other risks factors
>> include chronic hepatitis, HIV and ulcerative colitis (a form of IBS).
>> it is hard to pinpoint any one of these down because many people with
>> the above don't develop the cancer.  the fact that he had a parasitic
>> infection may have contributed to the development of the cancer, but i
>> would not say that it is the sole cause.  the majority of people
>> diagnosed with cholangiocarcinoma have no known risk factors.
>>
>> as a family, i would make sure he is in sufficient pain control- if
>> this means very high doses of pain meds, that is ok.  if he is still
>> lucid, he will eventually want to stop eating and stop drinking
>> fluids- this is alarming because it is against our thoughts that food
>> = comfort but this is normal and very characteristic of the final
>> stages of death.  hydrate the mouth with small ice chips if he cannot
>> drink fluids.  in the last days, he may spike a fever.  this is also
>> normal.  there may be secretions in the mouth that towards the end
>> will accumulate because the swallowing reflex is diminished and this
>> will make a rattling noise.  these secretions can be sucked out of the
>> mouth if necessary.
>>
>> i know this is all hard to hear but i wanted to write it out in case
>> the doctors didn't say anything about what to expect.

Try to be strong & hang in there. My husband was a strong health 62 year old man 7 weeks before he passed away on 9/2/08. In his case it went fast. For him that was a blessing. For the rest of us it will be a long road ahead. I loved him & I miss him terribly. Every case is different. Good luck to you & your Step Dad. My thoughts & prayers are with you & your family.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Stepdad with cc

Hey all

Everyone here is just so sweet and helpful and it is truly a godsend that they have thse forums now.  I wish I would have had this with my dad.  Anyway, my stepdad went in on Monday and had a chemo treatment and then on Tuesday they had him come in for an ultrasound of the stomach area.  They drained over 6lbs of fluid off of his stomach and that was all they could do at one time or his blood pressure may bottom out.  He was feeling a lot better which I can only imagine and was starting to eat a little bit again. What causes all of the fluid?

12 (edited by JeffG Wed, 10 Sep 2008 13:56:36)

Re: Stepdad with cc

Hi Sherrig,  Wow that is a lot of fluid, I bet he is feeling better.  The fluid can be be cause from a number of reasons.  It can be cause by the disease progression itself, or side effects from the chemo,or pain medications.  It can be caused by not drinking enough clear fluids(I know it sounds funny but we are talking about clear fluids to flush out excess stomach acid and enzymes), drinking to many carbonated drinks like soda(has carbon dioxide in it), salt, or processed foods with high sodium content, fatty foods, any intestinal inflamation or obstruction.  to much lactose and sugar as well.  This is why it is so improtant to monitor your diet closely.  Some people go all out and go on a strict cancer diet,while others eat pretty much the same but watch out for the salt and sodium primarily and eat smaller meals more often, instead of 3 big meals as it causes so much of acid and enzymes to flow.  Hope your stepdad is feeling better.
God Bless,
Jeff G.

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

Re: Stepdad with cc

Hey everyone

Thanks Jeff for sharing and he did feel better for maybe a day.  Hasn't been able to eat any solid food drinking Ensures mostly.  Had a really really bad weekend and thought they were going to have to call an ambulance.  He was just in a lot of pain stomach getting really large and hard again, restless, having difficulty breathing and just really sick.  They did call the Dr on call and they had him take a couple of pain pills and neausea medicine.  A couple of days later he still wasn't better just getting worse.  They went in yesterday to drain more fluid but it wasn't fluid.  they said that he has a large blood clot in his lung and has to have a shot in his stomach every day.  Is this related to the cc or what?  I hate not being there because my mom just doesn't ask a lot of questions just because I think she just doesn't want to know.  He has a pet scan a couple of weeks ago and ultra sounds and blood work yesterday but they don't know any of the results from the pet scan.  I just hate that he is going through so much and just is happenning so very fast.  Just a month ago he was doing so well considering. Mom said yesterday that he looked really bad.

Re: Stepdad with cc

Sorry for all the pain that you and your family are experiencing. From my sister's experience, once there's all this metastasizing into the abdominal cavity, you have all this pressure and sometimes blockages in the stomach and the intestines. My sister did not eat 9 weeks(!!) before she passed away, just hydration and fluids (only sometimes and not at all for the last 2 weeks). At this point, you have to concentrate the most on pain relief and nausea control. And I agree, the down hill on this is so quick and very terrifiying. Be strong for your mom, Belle

Re: Stepdad with cc

Hey All
I just wanted to update you on my stepday as it has been a few weeks.  It is now at a crucial stage I am afraid.  He is requesting for hospice which is just tearing my mom apart but he can't eat barely can drink and has no saliva in his mouth.  Mom tries everything to get him to eat and usually can only take one bite and I think that is to appease her.  When he went for chemo last week they only did the gemzar and his blood work wasn't good.  It shows the cancer is spreading.  I doubt he will have any more.  He is so sick at his stomach and so uncomfortable.  I am taking some time off or work to go be with him and my mom as I fear the end is near.  I haven't seen him since he got this bad and I dread it so much.

Re: Stepdad with cc

Hi Sherri,

I am so sorry to hear that your Step Dad has come to the stage we all dread. Hopefully he will be kept comfortable & without pain. At this point that is probably all you will be able to do for him. You & your family are in my thoughts & prayers.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Stepdad with cc

Sherri...I am so sorry to hear the news and I admire you for being there for both, your Mom, and Stepdad.    Hospice will be able to tend to him so that he can be comfortable.  If possible, you might want to ask about their experience with CC as this cancer differs very much from most.

Caring for someone with advanced cancer has been described to others as being the toughest thing they have ever been through.  And yet they wouldn

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: Stepdad with cc

Well here I am at my Mom's as i have been trying to spend as much time as possible here with mom and my step dad.  He decided onFriday no more chemo and to just do hospice.  The chemo is literally killing him faster than the cc is.  He hasn't eaten a full meal in weeks and is so week he can hardly take a shower.  He sometimes can take a bite of food and that is all and just to take a drink of water just makes him sick.  He says he has the worst taste and that everything he puts in his mouth just makes him so sick.  He is so pitiful and it is so heartbreaking.  He hospice nurse has been in and has added a second neausea medicine in hopes that it will help.  He is just so neausous he can't stand it. The weakness is getting worse from lack of food.  He says he isn't having much pain but from the looks on his face and the moaning that he does I think he is in pain which he is on Oxycodone and Loratab.  We are trying everything we can to help him overcome the bad taste but just aren't having any luck.  He is literally skin and bones except for the large abdominal area.  If anyone has any suggestions on what to do for the severely bad taste and neasea Please let me know.  I know he gets so tired of us asking if he wants to try this or try that but it is so hard to watch someone not eat or drink or if they do it looks as if it is so painful.  What to do? The only good thing is that he is resting really well at night sleeps about 10 or 12 hours.  The doctors had told us that he probably only had about 3-4 weeks left.  How do they know that? I do know that when my dad had colon cancer they gave him 6-8 months without chemo and 8-9 with chemo and he was with us for 8 1/2 months.  I just feel so helpless and wish I could do more as I know everyone here does.

19 (edited by JeffG Tue, 21 Oct 2008 21:00:50)

Re: Stepdad with cc

Hi Sherri........... So sorry to hear how advanced your step Dad's cancer is.  Don't feel helpless or guilty or anything like that sherri.  Your a great daughter helping your Mom and step Dad as much as you possibally can.  At a certain point all you can do is give your support and love and try to make things as comfortable as possible.  Being there for your Mom is a tremendous help.   I wish I could offer some suggestions of help,but all I can say is love and touch.  Stroking of the hair or hand. keeping a clean face and hair is refreshing as well.  Sherri , is hospice there at home most of the time? do they need to be there more often?  Let them know what you need and don't hesitate to talk with them about what to expect.  If you have a good hospice team, they should be of great help to you and your Mom.

God Bless You All,
Jeff G.

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

Re: Stepdad with cc

Hey all
Just wanted to update you on my step dad after they changed his pain med to morhphine and put him on a new nauseau med which I can't think of right now it start with a c but he has been doing a little better got up on Thurs and felt like a new man was hungry and ate quite a bit Thurs and Fri.  Sat Sun and Mom weren't as good not able to eat too much.  Last night he got up and fell.  He wasn't hurt but said his legs were heavy. The hospie nurse came today as she is only coming once a week or as we need her and said he is probably having fluid build up in his legs that is causing the heavy feeling.  It is just so good to see him able to eat again and it actually taste good to him.  Has anyone had the heavy leg feel?  He even looks better and sounds better.  It is so weird.

Sherrig

Re: Stepdad with cc

Just remembered he is on compzene and zophran.  Thanks for all of the responses and help.  I pray for everyone that is here and hate the things tht everyone is having to go through. 

Sherrig

Re: Stepdad with cc

Sherrig

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