Re: Coping with my dads diagnosis..

Thank you for all of your responses.

It's been a while since I've been on here to actually write anything. I wanted to update on my dad and see if anybody might have some answers to a few questions that I have.

for the past over year now my dad has been doing chemotherapy, gemzar/cysplatin, and about six months ago he decided to move to Florida. This has been very hard on me and my Younger sister, as we both live in New England. We do fly out to see him from time to time but what bothers me the most is that he is down there on his own. For about a year he been doing chemotherapy and not much had changed. As of recently, things are getting worse and things are becoming harder and harder for him to do which is what concerns me most about him being there without any help.

I would like to find an organization or company that can help him with food or preparation does anybody know of anyone in the St. Cloud Florida area which is about 30 minutes outside of Orlando that could help?

He has also lost a lot of the feeling in his hands and feet along with a lot of discomfort and is taking Lyrica for neuropathy.

two weeks ago he started to experience severe pain and bloating in his stomach. When he went to the doctors he had 2 L of fluid drained from his abdomen. A couple days later he started to feel the pain again, went to the doctors again and had almost 11 pounds of fluid drained a few days later. Yesterday he went to the ER with stomach pains and has not yet been discharged. I'm very frustrated because I have to leave a message with the doctor who never calls me back to tell me what's going on. I know they put him morphine so he could sleep and he will be having a pluerex catheter put into his stomach tomorrow. A nurse told me he now has C-diff as well.


Has anyone experienced this fluid and pain in the stomach and what does all this mean?

I don't know what to do. My grandma is taking a leave of absence from work and flying out in a few days. I don't know what all this means in regards to what point he's at with this cancer. I'm in school so it's hard for me to decide if I should go now, cause who knows what might happen next week...my sister and I went to see him last month and I was going to go again in April or May. Feel lost for answers. The doctors don't get back to me.

I don't want my dad to be in so much pain.. I'm scared they are going to start consistently giving him   morphine because I feel like that will be the end. He was taking steroids 2 days after chemo and those were the only days he ever felt good. Now they told him not to take the steroids anymore.

All I could have hoped and prayed for at one point is that this would go away and he would get better. All I want now, is for him to not be In pain. Everyday he's hurting, physically and emotionally.

Today he told me he's not really to leave me, and he can't accept this... I'm not ready either, and neither can I. I'm haven't been able to find the strength to really accept this.. People say over time you learn to accept the things you can't change and it gets "easier". Things are only getting harder and harder for everyone. My heart and soul is broken. Everyday when I wake up it's like hearing it again for the first time... Except he's sicker and in more pain < that is what breaks my heard.

If you have any suggestions or information at all I would really appreciate it.

Thank you all for being there. <3

Re: Coping with my dads diagnosis..

Hi Kristin, I am so sorry about your Dad and wanted to know where he is
being treated. Sometimes parents and children have to trade places and I feel Dad needs to come back to you and your Sister and you need to be the parent and insist.  One should not be alone with CC, that has to be awful. You could tell him to come back until he gets a 2nd opinion where you live. A 2nd opinion is imperative and should be done right away. I don't like what I am reading about the ONC not calling you back. That is not acceptable and I am not so sure he is being treated right. He needs to come home to everyone so you can be a team in helping him and he needs another opinion. Wishing you the best of luck, I know it won't be easy but you will need to be very strong. I feel some of your upset is that he is not with you and you really do not know  what is happening.

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: Coping with my dads diagnosis..

Hi Lainy,

He is being treated at MD Anderson, which I believe just changed to UF Health in Orlando. We want him to come back more then anything but when he was in New England he went to a doctor in Maine and to a doctor in Boston for a second opinion...both said the worst news possible, but When he went to Florida the doctor said the words " if we can get the tumor small enough, we could do radiation" those words that he has not heard from anyone else changed everything. Hes been there for almost 6 months now receiving treatment and before that about 6 months here receiving treatment.

He now feels like being there is his only change at surviving and the only hope he has left...Even though nothing he is working and things are getting worse. I told him before he made the decision to move, to stay here and although I am only 25 and my sister 21 we will take care of him. I also am in school and have to maintain my job as I live on my own.. I am trying to go on as normal as possible and told him that if he made the decision to move I cannot pick up my life, quit my job, and school, and go there. He doesnt expect me to but is telling my younger sister he needs her and has made her feel like she needs to go. she told him she cant leave and if anything happened to him and she was the one there she would lose it. I was worried about her mental state already but with this pressure he has just put on her, even more so now. I feel like he is being stubborn and inconsiderate and its making me angry. He gets angry when I tell him to come back and responds with either..." I cant because I cannot get the treatment there I am getting here" or even more annoying.. "its too cold there, I just cant handle the cold there anymore." as if hes going to be sitting outside in the snow in a lawnchair.

Re: Coping with my dads diagnosis..

Oh, Kristin, I am so sorry for you all. Try not to be angry with your Dad as he is probably very scared and sometimes the Meds change your emotions. There are some excellent hospitals on the East Coast that have dealt with a lot of CC and many would work in consulting with MDA. While you have had your share of bad weather you are right, he will not be sitting outside. One more suggestion. Maybe he is afraid to come back alone. Its late now in most places but lets see what suggestions are posted for you tomorrow. Hang in, hang on and be strong. You are NOT alone here.

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: Coping with my dads diagnosis..

Kristin....You are so right, dear Kristin, your Dad needs support services. He also may have instructed to not have the physicians speak with you.  This is something you might want to find out from him.     I believe that you already are very much aware of the gravity of the situation.  The build-up of fluid in your Dad's case is not likely to reverse itself; pain control has to be the number one issue to address.  Unfortunately in order to control pain, your Dad may be more tired and sleep excessively.   It is good to know that your grandma is able to be with your Dad within the next few days. She will be able to assess the situation, speak with the physicians and request county support i.e. connection with social worker, etc.  Certainly it would be best for your Dad to near his family (grandma and you sisters.)
My heart goes out to you.  This is a difficult situation compounded by the fact that your Dad is living far away from you. 
Kristin, please stay with us on this board.  You will receive tons of support from us all.  We are with you therefore; 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: Coping with my dads diagnosis..

Thank you Marions,

He did sign a release for me to speak to the doctor. Hes just terrible with getting back to me. What is this build up of fluid and what is it going to do to him? im sorry to be so blunt.. but is it happening now? I wish i knew so I know if i should plan to go see him now.

How do you know if the end is really comming?

Re: Coping with my dads diagnosis..

Great, Kris; then start bugging his office.  Tell them that you are entitled to receive information and that you won't go away until you receive some answers to your questions.  Explain the situation of your physical distance from your Dad and that you need to be informed so that you can make the necessary plans to be with him if needed. 
Ascites is fluid build-up in the abdominal (peritoneal) cavity and in Cholangiocarcinoma it is most likely is related to advanced liver disease. But, dear Kris, try to get through to the physician for a more descript explanation.
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: Coping with my dads diagnosis..

I finally spoke to his doctor today. Hes on his way to a CAT scan right now and to see about getting the catheter so he can go home. He has an infection in his stomach and is going to get medication for it but the doctor said it is more then likely that the infection will not go away and the different chemo options they have tried are not working. He is going to sit down with him today and talk to him about finding a hospice. I hope he will come back home and spend his time here now.

Re: Coping with my dads diagnosis..

Kristin, I hope so too. He will be so much more comfortable at home with Hospice. Did the ONC say what kind of infection, that it won't go away?

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: Coping with my dads diagnosis..

Kristin,

Hoping your dad will come home for hospice as it sounds like it would be best  for everyone.  Keep us updated as to what decisions are being made when you can.

Love & Hugs,
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: Coping with my dads diagnosis..

Kristin....the catheter will need to be tended to.  I assume that your Dad will be given instructions in re: to the care. Hoping that a nurse will stop by his house to clean and change pads, etc. 
In regards to home hospice:  I strongly believe that you can do it, but you must consider obtaining additional help.   No one can replicate the love you can give to your Dad however; for one person alone, it is very difficult to tend to a hospice patient. 
So, you have some things to consider:  Home Hospice vs. a Hospice Facility and the availability of the later? 
Most of all, my heart goes out to you.  Please stay in touch.  We are with you, all the way.
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: Coping with my dads diagnosis..

Kristin,

You have gotten good advice from the other moderators.  The rapid accumulation of so much fluid is not a good sign.  Hospice has a lot to offer and it does not mean he won't be treated for the infection or other things that come up. It just changes the focus to his comfort and is a tremendous help for all involved.  Hopefully your Dad can be encouraged to come home at this point. It is better for your family to be proactive and have care in place right away, no matter where he chooses to live. I wonder if he is in FL also to shield you and your sister from this, but is now needing you more than ever. Like the others, my heart goes out to you all having to go through this.

Willow

Willow

Re: Coping with my dads diagnosis..

Kristin,

I am also in the Boston area.  My mom just started a clinical trial at MGH with Dr. Zhu, he seems to be very knowledgable and has lots of experience with bile duct cancers.  If your dad does come back up here, perhaps it would be worth trying to get him seen by him or one of his colleagues?

My mom got second and third opinions (including Dana Farber) when she was first diagnosed and they all told her that MGH is the best hospital in New England for dealing with liver cancers as they have the most experience.   

If you need anything or I can help in any way, please let me know.
Take care,
Beth

Re: Coping with my dads diagnosis..

I'm 63 and was diagnosed in July, 2013.  I started chemo within a few weeks, resolving not to go down without a fight.  I lost over 30 pounds in seven months before I starting gaining weight.  Still less than I started, but it's a healthy weight for me. 

In today's world of the internet, I'm sure everyone in my family has checked out the survival figures, but like the elephant in the room, no one mentions it.  As some have noted, we don't come with an expiration date.  Since I beat the odds getting a rare cancer, I figure I can beat them again by surviving longer than the odds give me.

I'm thankful that my chemo has had few side affects - mostly hearing deterioration and chemo brain.  I plan to continue as long as the tumors shrink.  ONC has me pegged as palliative care but I'm going to prove her wrong.

I would recommend to your Dad that he keep a private journal.  That's kind of what I use these posts for.  No one in my family knows about them - I can say things to my family here that I cannot say to my blood family.  It really helps.  Anger, fear, and frustration are normal. 

Other than that - don't overlook the power of prayer - yours and others.  I'm sure prayer keeps me going through the dark times.

Look at every day as a miracle and a treasure.

Fighting with dignity, not desperation.

Live, Laugh, Love

Re: Coping with my dads diagnosis..

Hi. I'm jumping in late to this because, ironically, I've been in the hospital with an infection and fluid buildup (like 20 lbs of it). I commented to one dr that I must have been impregnated with an alien baby it happened so fast.

I'm sorry your dad is having problems. One thing I've learned this week (and it may or may not help you, but I throw it out there anyway) is that in my case, the fluid buildup, which is primarily in my abdomen at this point is much more likely the result of freaking my kidneys out when I got very dehydrated because my biliary drain tubes/bags were pulling so much fluid out of my system than related directly to the cc. So, the lesson I learned is that my oncologist pulled in a multi-disciplinary team - infectious disease specialist and nephrologist. They are telling me my fluid will go away, but slowly. It is not ascites.

Wondering if your dad's drs are using a multi-disciplinary approach?


I also wanted to comment on the cold weather issue. While it's true that he's not going to be sitting in a lawn chair in the snow, it is also true that cold weather affects each of us differently (and even differently than it might otherwise have pre-cc). I get cold so much faster - even in my house (which is nearly 100 years old and drafty in places) and I take a really long time to warm up. With my biliary drain tubes, I can't rely on my favorite hot soaking bath to warm up either. So, even if he's not outside a lot, the cold can definitely play a big role in how he's feeling.  My husband gets upset with me when I say it's too cold for me to walk with him and the dog lots of nights, but it's the truth.

Impatient patient.