Topic: Introduction - My husband is diagnosed

I have joined because I want to learn about this disease, what helps it, what doesn't, what I can do to help him feel better, find out if we can help him get well and all of the hundred other things that I need to learn in order to understand what he is going through so I can be effective in my care for him.

My 72 year old husband who has been known to have PSC for the last 15 years was diagnosed with an inoperable Klatskin type tumor. It has spread to his liver and to his lymph nodes. He has completed his first round of chemo (cisplatin and 1/2 strength gemcitabin) after having a metal stent to help his liver drain. At first the meds after his chemo really energized him and he felt he could still be active, but the first treatment of the second round has left him with exhaustion and he's running a fever off and on. He has days where he sleeps all day and all night and other days where he is tired but able to be interested in what's going on in our home.

I have been looking at this site for some time. I appreciate everyone of you who has shared their experience.

Re: Introduction - My husband is diagnosed

JanBee,  I'm sorry that you have a reason to be here on this site...and at 2:15 in the morning.  I know how much you are worrying and trying to find answers.  I'm a patient, myself, with intrahepatic cc and am in the beginning phase (since Jan 2014) of fighting this monster.  There are others here who are so informed in both facts and experience that far exceeds what I know, but you will find that everyone is ready and willing to help you in any way they can from navigating the medical systems to just being here to listen when you think you can't handle any more.  They're the most compassionate group of people I've ever had the fortune to meet.

Iowa Girl
Julie t.

"Just for today, I can get through anything."  Hey....I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences or knowledge.  As always, talk to your doctor about your concerns and treatment.

Re: Introduction - My husband is diagnosed

Dear JanBee, welcome to the best place to be for support of CC. Yes, you have both been on that CC roller coaster and we want to see that GEM/CIS zap that monster! If he is running a fever on and off I would definitely call his ONC as he may have an infection settling in from the stent or anything really. Advise the ONC about his sleeping so much and the fever. Is he eating at all? You are not alone you have a ton of new family here and please keep us updated on his progress. We are glad you decided to come aboard!

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: Introduction - My husband is diagnosed

Dear JanBee -
Welcome to the best little family ever. You will infinite support from everyone here....and many answers to you questions.

I would call the ONC about the fevers and fatigue. My husband got that way a lot during his treatments so finally the doc just gave me a refillable antibiotic prescription and told me to start it when he ran a fever more than three days in a row. It was Levaquin which is a wonder drug for infections. Seems my husband always fought sinus infections. Of course we did have three hospitalizations for blood infections early on but they never really did fine out why.

Also each round, dose will be a little different. Not sure why but some times Mark would breeze through the week and other weeks it was a struggle to get to the next one. Fatigue and constipation were his two big issues. He thankfully didn't have a lot of nausea with the first go around.

Hope you work things you and keep us posted.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Introduction - My husband is diagnosed

Thanks for your input on the problem with fever. At first I was thinking that he had an infection, but I can't account for the fact that his fever is intermittent. He may run it all afternoon, but the next day it's normal. Today no fever, and I can see his bright self shining through. Hoping it lasts like this for most of the day. However, I discuss this with his doc.

Re: Introduction - My husband is diagnosed

Hi JanBee,

I too want to welcome you to this forum.  Glad you found us, but sorry you had to.  I don't have much to add at this point, but just wanted you to know we are here for you and we care.  No matter what you need, answers, support or just a place to rant, we are here to listen and help in any way that we can.  We all know and understand what you are feeling and going through as we have all been there in one way or another.  Let us know how he is doing and what you hear from the doctor.

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.