Topic: New Member

Good Morning-

First, I have to say I am so happy to have found this site.

My 41 year old husband was diagnosed with this last October. Stage 4. We are completely devastated (more I) he has been going through chemo sessions since early November 2011. Just had his 2nd pain block, but is still in severe pain. I feel helpless when he is up all night trying to get relief, he hates taking pain medication. My hubby is a very busy, hardworking man, he has been playing ball for over 20 years & to see his slow down is so hard for me to watch, he is still working hard, he said it takes his mind off of the disease, as soon as he lays down to relax the pain kicks in.

I need people to talk to, we have 4 boys, we are a blended family, ages 20, 19, 15 & 12.

They gave my hubby 12-18 months, it's been just over 12, so I am hopeful & holding on to a miracle. I have read some post about people losing their loved ones to this awful disease & it breaks my heart, I pray for your families to find peace in your heart.

At what point do people feel like things are getting worse? he's been in so much pain since the beginning that I don't know what to look for, what to do, I ask a million questions at the doctors office, but I just don't get the answers I am looking for.

Thank you!!!

Re: New Member

Dear MTWebster, welcome to our extraordinary family but sorry you had to join us.
One word we don't like is "pain". We feel that noone should endure that kind of pain. Your husband needs to know that the longer he goes without the pain Meds the worse it will be later to control the pain.Where is his pain? We are big believers in 2nd and 3rd opinions and if you feel you are not getting answers it may be time to get a 2nd opinion. Listen to your gut, it will not steer you wrong. What chemo is he on? Has he had any scans lately? Know that you have come to the right place here as all of us Caretakers have been there done that, unfortunately. The best advise I ever got was to BE STRONG and that was from my husband who had CC. Please do keep us posted 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: New Member

Thank you so much!

I can't stop the tears! I am having "a" day - I am as strong as they come, but I have been struggling, that is how I found you.

He is currently on gencitabine & cisplatin. The pain (currently) is in his abdomen & radiating to his right shoulder. He had the pain block procedure done one week ago & is finding no relief. He has had a current scan & they found that the little tumors in his abdomen have grown, just a bit. It's amazing how small they are & how much damage & pain they cause.

He is being treated in Seattle & I just found on here that the UW is a great place, I am going to touch base with them, as I think a second opinion would be a great idea, we actually told his oncologist that last week, although we feel that the care he has received is wonderful, this is his life we are dealing with & we will do ANYTHING to save him.

I am trying to navigate myself through this website, is there somewhere I can read your story about your husband?

Thank you for your response smile

Re: New Member

Good, what you are doing is very good! Can't wait for that 2nd opinion. Gem/Cis seems to be the cocktail of choice, but if after all this time not much has changed except to grow, it is certainly time for a try at something else and 2nd opinion.  I know others on our site have had shoulder pain. Go to the top of the page and click on the search button. Type in shoulder pain and see what posts pop up.
Feel free to read my posts but there are over 7,000! Teddy was totally different. His CC was contained in his bile duct valve. He had an aborted Whipple and then the real deal 3 weeks later. It was successful with clear margins. 5 docs said no to chemo as they said it would not help him due to location. 3 years later it returned to where his Duodenum used to be and they did Cyber Knife which bought him 2 more years and it returned again in that same area. He passed at 78 but did survive 5 1/2 years of CC. He was a real fighter, never complained, was very firm on my being strong and his faith helped a ton as well. I know there are days that we just need to let go and have a pity party. I used to get in the car, put on my CD of Mama Mia and sang so loud my throat would hurt and then I had my cry. Went back home all renewed. Wishing you the very best, we are all here for you and BE STRONG!
P.S. To get to my posts simply go to my name at top and left of this post LAINY, click on it and you will go right to my Profile.

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: New Member

Hi mtwebster,

I am very happy you found us, but sorry you had to. This site is so wonderful in providing information and support. My daughter was diagnosed with CC in Aug. 2011. Has your husband been on Gem/Cis this whole time? If not, what else has he been on? I am also concerned about his pain. He needs to consistently take his pain meds to see results. My daughter takes a long acting morphine in the morning and one in the evening. She has fast acting morphine to take for breakthrough pain during the day. She also had shoulder pain, but not anymore. Her doctor said it was from an irritated phrenic nerve. How often does your husband have scans? I do think a 2nd opinion at a cancer center that is very knowledgeable in CC would be a good idea. As for your sadness, I know first hand how that goes. I got so I was crying so much that I went to my family doctor and he prescribed antidepressants. It was too hard for me to deal with on my own. It was trial and error for a bit, but I finally feel better and don't cry very often. Just letting you know there are options for you as well. Talking to someone about things might help too. It is just so very stressful and with all those boys to take care of too!! Wow! Please come back and ask questions, rant rave, and vent if you like. We are all here to help. I am hoping your husband can find a way to ease his pain and you can feel better as well. Take care and all the best.
Love and hugs, -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: New Member

Hi and welcome to the site!

I am 33 and had intrahepatic CC.  I was lucky enough to get a liver resection.  I live in Portland, OR, so we are pretty close.
I would try to get a second opinion.  CC is so rare, you want to be sure to get someone with experience.  You want to make sure he has good pain control.

Take care,

Susie

Re: New Member

Welcome and to repeat what all have said "sorry you had to find us"! I am a CC survivor, I have been cancer free for over 3 years there is HOPE. I have an amazing story to share so please read it at www.catherinedunngan.com under the telegraph link.
I was very lucky to have been diagnosed by one of the top hospital and doctor so I never needed a second opinion but I know a second opinion saved my mom's life when she was diagnosed with cancer.
Please keep posting and crying on our shoulders because being a friend who gets it and cares, is the one thing we can do here, it gives our stories and journey a purpose.
Lots of prayers and HOPE-Cathy

Re: New Member

Hello mtwebster from a fellow Washingtonian.  Where is your husband being treated now?  We are new to this.  Awaiting first chemo infusion today at Seattle Cancer Care Alliance, which by all accounts is a top notch institution combining University of Washington hospital with Fred Hutchinson Cancer Research Center.  Will keep posting about how it goes.   God bless.

Re: New Member

Great, you have almost met each other now and it is the best feeling in the world if you can meet in person. Many of us have never met and it's a feeling like,WOW I am  really not alone. It also makes me highly jealous!

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: New Member

Hi MTwebster,

Welcome to the site. So sorry that you had to find us all and I am sorry to hear what your husband is going through right now. But I am glad that you have joined us all here as you have come to the best place for support and help, and I know that you will get a ton of both from everyone here.

I am glad to hear that you are seeking a second opinion for your husband, good stuff. If something is not working right now for your husbands pain then it is time to look for and try something else. There are many things that can be tried for pain and being in pain so much is not good at all. What you say about this being your husbands life and how you will do anything that you can to help him is spot on. It is his fight and good on you for getting that second opinion! Please let us know what happens with that meeting and what they say.

I know you are having a bad day today, we all have them, no shame or problem with that. We have all been where you are now. But I can see that you are strong and will not give up either, good stuff! Please keep coming back here, we are here for you and we care. We know how you feel, we know what you are going through and we can help. Please stay strong, and feel free to shout, scream or vent as much as you want to, we understand.

My best wishes to you and your husband,

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.

Re: New Member

Thank you everyone!

It's so nice to talk to people that have been through this.

Currently my hubby is being treated at Viginia Mason in Seattle. Tomorrow I am calling UofW, to get his scheduled for a second opinion.

This has metastasized to his liver, has ran through his blood stream & is in the retroperitoneal & lymphnodes. The tumor board refuses to do any type of surgery, because it's eveywhere & if the tumor on his liver is not down to a certain size, they will not make him a candidate. What is really bothersome to him, he doesn't understand why they cannot take the little ones in his abdomen out, that is where his pain comes from & radiates to his shoulder, I have been doing alot of research & am finding that the cyberknife would be a great tool, any thoughts? Can he still do some kind of chemo while going through this? The main concern was that he would have to stop the gem/cis for 6 weeks & they do not want to do this, for recovery from surgery. I am wondeing if how invasive the cyber is vs. complex surgery?!

I go in with a million questions & would love some advice from you all, that have experienced this first hand.

Thank you for all the love, thoughts & prayers!

Teresa

Re: New Member

Dear Teresa, I think a lot of your questions will be answered at the 2nd opinion meeting. My husband had Cyber Knife and we considered it a Miracle, at least it had bought him an extra 2 years. From what I recall the tumor must be under 7cm and there cannot be a lot of tumors. Not sure if you can be on chemo while doing C.K. I do remember Teddy had radiation first to bring the tumor down a few cm and then we had to wait a couple of months until the radiation had worn off. Not sure if it is the same for chemo. Anything is worth asking about. Start making  a list of questions for your 2nd opinion. Best of luck.

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: New Member

Teresa....my husband also experienced upper quadrant shoulder pain. It was related to nerve endings in the spinal cord.  Pain medication kept it under control. 
I also wanted to mention Swedish medical center, Dr. Gold, medical oncologist.  Dr. Gold has treated numerous Cholangiocarcinoma patients and may be a good resource for you. 
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: New Member

At first I froze. I cried. I did find my way to a major cancer center but there, saw the famous surgeon for about 5 minutes, and was sent to Dr. Death, which is what I called the oncologist. It is so obvious that I was going to go in bin A (try to fix me) or bin B (no hope) and bin B it was, and they would make me comfy to die. I hated that more than anything! You want to fight! So I listened to the good people on this forum and made my way to FOUR second opinions. I learned so much and met such amazing people along the way .... and found a team I am excited to be working with. Every other doc said they were truly sorry I had to go through such a demoralizing experience, that there are ALWAYS things to be done for this cancer especially if you are young and healthy and strong. (like your husband) So, anyhow, go and get that second opinion and don't stop there either until YOU are satisfied that you have found a team you look forward to working with. As to pain, everyone on here says that is not right. I can't wait to hear about your second opinions! Good luck!! Oh, and you are a saint with the boys. I have 5 children in a blended family from 23 to 14, and the older ones are very helpful to the younger in talking about it... mostly they just want to be kids. In the car the youngest asked about a recent appointment of mine and I filled her in a little and then she said, "ok, Mom, I like hearing about it but now listen, about this guy at school...." So I figure they need to be allowed to live their lives wthout the constant worry we may have. I try my hardest to keep things normal around here. Good luck and all the best thoughts going out to you and yours.