Topic: Hello-New to site

Hi.  I am writing this with a heavy heart.  My life completely changed for the worse less than a month ago, when my amazing dad was diagnosed with cholangiocarcinoma.  It's all still so very new and I don't know much about it.  The little I do know, I don't like.  To give you a little more background I'll tell you how it all started.  First of all my dad just turned 59 this past July.  Around the end of July dad started losing his appetite & not feeling great.  He also had some pain in his legs with some swelling.  Dad had a stressful job and kept going and didn't make the time to go in to the doctor.  He knew he had an appointment in late August and figured it was just stress.  On August 15 dad had to go to the ER because his legs were so severely swollen.  They discovered clots in both legs and lung.  At that time they also found a spot on his liver & lung.  The doctors said they had to handle the clots first & deal with the other later.  After several days in the hospital on lovenox shots, dads swelling went down.  They ordered a PET scan for the following week to check out the suspicious spots.  After 2 days, dad was back in the ER with more clots.  This time they scheduled a surgery to remove the clots in his legs and at the same time place a filter in to stop them from going to the lungs.  A few days later he was released.  Dad had the PET scan a few days later.  Then the next day he was back in the hospital with major swelling.  Oh, I forgot to mention, both times he was released from hospital they put him on Coumadin.  He had MORE clots.  They put him on Lovenox again.  Waited for the Coumadin to get out so they could do a biopsy of his liver.  This all took several days.  He was in the hospital about a week.  A couple of days after returning home his vascular surgeon called and said he had liver cancer that was treatable.  We live a few hours from MD Anderson, so we got that process started to get him in.  After a week or so he went there and was shocked to hear he did have cancer, but much worse than we thought.  Stage IV liver cancer (cholangiocarcinoma) that had spread to lymph nodes, stomach, back, lungs, etc & that it wasn't treatable.  We are still in disbelief.  Since all this started dad has lost 50 pounds, is very weak & has no appetite.  He is emotional, as we all are, very down.  He has so much pain in his stomach and back.  He is in his recliner 23 hrs a day.  He took his first chemo last week & did great.  He actually felt good for a few days afterwards & had a little appetite.  He has his second treatment next week.  This is so hard & I figured having this forum would help me through this nightmare.

Re: Hello-New to site

Hi mafoster,

I would like to welcome you to this site, but I am so sorry to hear about your Dad. Many people on this site are treated at MDA. Your Dad is being treated at one of the best places. This is all still fairly new to you and I remember all too well what it feels like when you first find out. My daughter, Lauren who is now 26 was diagnosed with CC in Aug. 2011. She has been on chemo since then and feels better today than she did back then. We are all one big family on this site and someone is always available to answer questions, give advice, lend a shoulder to cry on, or listen if you just need to talk. I hope chemo will make your Dad feel better and don't be afraid to tell his doctor about his appetite loss and pain if you feel his meds aren't helping. Take care and all the best to you and your Dad.

-Pam

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Hello-New to site

MaFoster, welcome to our remarkable family but sorry you had to join us. I feel so bad that your Dad has all ready gone through so much. Are they giving him anything for his pain?  As for eating, try having him graze during the day instead of full meals. Also the nutrition shakes are good, my husband loved Carnation Instant Breakfast, the vanilla, and I would blend in a banana. This would take the place of a full meal and have all the nutrients. Try to read up as much as you can as knowledge is one of our most powerful tools for fighting CC. You are right, this is a nightmare, a monster, what ever name you can call it which is why attitudes are important as well as being strong. Please keep us updated on Dad as we truly care.

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: Hello-New to site

Welcome to the site.  I'm very sorry your family is going through this.  You will get a lot of support and helpful advise from this site.  Everyone is so kind.
Please keep us updated.

-Susie

Re: Hello-New to site

Mafoster,
Welcome to this site and a beautiful family of supporters. I was diagnosed with Stage IV in September 2010. The people here are amazing and I don't know how I could get through this without them.
Lisa

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: Hello-New to site

mafoster...I would like to follow the others and welcome you to our site.  What a ride this has been for you and your family!  I am sorry to hear of the events leading to the diagnoses of this disease.  We have had numerous reports of blood clots due to this disease.
I have learned that Adenocarcinomas of the pancreas and lung are associated with tendency to form blood clots (hypercoagulability)
http://en.wikipedia.org/wiki/Trousseau_ … malignancy
The good news though is that your Dad is responding to his treatment and that his appetite is increasing a bit. 
Shakes high in protein (Lainy's suggestion) and high protein meals spread throughout the day are great for weight gain.  I used to entice my husband with some of his favorite foods and to be honest not always considered the most nutritional meals, but he enjoyed eating it and for me that was good enough.
I would like to mention that studies have proven the benefits of walking or moving around while undergoing chemotherapy.  It does not have to be strenous, but some physical activity is highly recommended.  Therefore,  you might want to nudge him a bit to get out of the chair.  But, of course please discuss with with the physician first.
Most of all I wish for you and your family strength and continued succes with the treatments. Please, stay with us.  The welcome received by Lisa, Susie, Pam and Lainy are just the beginning of a warm relationship.  There is more to come. 
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: Hello-New to site

Hi Mafoster,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your dad. He sure has been through so much already. But I am glad that you've joined us all here as you will get so much support and help from everyone.

I know how you feel right now as I felt the same after my dad was diagnosed. Like you I didn't know much about this at all and didn't like what I read. But, please, do not give up hope at all. Your dad is in excellent hands at MD Anderson and I know that he will receive the best possible treatment there.  Is he taking anything right now for his pain?

Please know that we have been where you are right now and I know that it can all feel so overwhelming. But please also know that we are all here for you. Keep coming back here and let us know how things go with your dad, we care.

My best wishes to you and your dad,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.