Topic: Hello

My Dad was diagnosed with CC in February with a 10cm mass. He has been given less than 6 months. His is inoperable and chemo may give him a month or 2 longer. 
How our story began:
Dad has suffered from degenerative spine disease for about 20 years. Over the last year his mobility and strength have declined. Also in July 2013 he was diagnosed with melanoma. The melanoma was removed and all margins were clear. After healing from the surgery he had several falls and had to start using a wheel chair most of the time. In the fall he was in and out of the rehab hospital and received home health. In Dec 2013 we were told he had to have spine surgery again. During a routine MRI of his spine a mass was seen in the liver area. He then had a CT scan of the liver and at that time the mass was 6cm. The dr didn't biopsy at the time and felt the spine surgery was more of a priority. After having surgery and then aspiration pneumonia, Mom inquired further about the mass. In late January 2014 another MRI was done and the mass grew to 10cm and a biopsy was done. At that time is when Dad received his diagnoses.

Currently Dad feels pretty good! It is strange to me how he has been giving such a poor prognosis, but doesn't seem to be sick. Its hard to not always be thinking of when and how the symptoms will start. Have any of y'all had this experience? Thank y'all for reading this long entry and any input would be greatly appreciated.

Mendi

Re: Hello

HI Mendi and welcome to the site.  Sorry to hear about your dads diagnosis. You mentioned they did offer him chemo.  Is their a plan set in place, or has he decided if that is something he wants to do or not?
I was diagnosed last year and I was shocked by my diagnosis and yes was in otherwise healthy conditions.  I never felt sick (aside from abdominal pain) never looked sick, and have very little symptoms so I definitely understand how you guys feels about that.  So it is good to hear that he feels pretty good and I hope he stays feeling good for a long time.  Hugs and blessings to you and your family.
Porter

Hope, love, strength...2013 and for the years to come, Porter.

Re: Hello

Dear Mendi, welcome to our family and know that you have come to the right place. I am so very sorry to read about all the things your Dad has gone through and now this. First I would try and get a 2nd opinion from a top hospital like MDA in Houston. It is most important to be with an ONC and a hospital that is VERY experienced with CC. Sometimes with CC there are no symptoms until very late which accounts for many poor prognosis. I would definitely get that 2nd opinion ASAP. Wishing your Dad the very best and please keep us updated, 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

Mendi -
Welcome to the sit. Sorry you had to find us but you will be glad you did. As has been said definitely go for the second opinion or third if needed. I would definitely head to MD Anderson, especially if you are close at all.
My husband felt pretty good right up until he turned yellow. He had some fatigue problems but we attributed that to getting older. A lot of people don't notice anything until it's quite far along which is why it's so hard to diagnosis.
Good luck 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: Hello

To echo what Lainy said, I would encourage you to get a second opinion too. If you are in Aledo, I would consider Baylor in Dallas. I know a lot of people just assume MDA is the way to go, but my experience with Baylor has been very good and because of baylor's living liver transplant program, they do see a lot of cc.  It's a lot closer to home.   

My oncologist is Dr. Andrew David McCollum.

And, yes, when I was diagnosed (10/13), I thought I was in great shape. One day my eyes just turned yellow. Only symptom and I didn't notice. A friend did.

Good luck. Will answer any questions I can.

Lisa

Impatient patient.

Re: Hello

Thank you  all for responding!  Dad has chosen not to do chemo. His body is already so weak from his back issues that he just wants to live life to the fullest without treatment.  His oncologist is Dr Mark Redrow  with Texas Oncology at Baylor Fort Worth.  They have not gotten a 2nd opinion, I think Dad is in a little bit of denial. I think that since he does not have any symptoms that he thinks he is doing good.  Does anyone know of support groups for cholangiocarcinoma patients and care givers?  We seemed to be a unique little "group" that no one knows about until they are apart of it. Again Thank You!

Re: Hello

TX oncology is a good group.  My Baylor dr is part of it, so I expect they communicate between Dallas and ft worth. Don't know your dad's age, but I can certainly respect anyone's decision on treatment or not. Sometimes, the treatment is so hard on people and if he has other health issues, that does play a role.

Obviously, you want to keep him comfortable. A lot of people on this forum have experience with hospice care. That might be something to look into. I just don't have any experience with it.

As far as local support, I haven't found any. Big Baylor, as I call the main hospital, has a support group for just about everything else. So, I come here.

Lisa

Impatient patient.

Re: Hello

Mendi, local support groups are virtually non existent due to the rarity of CC. I tried to start one in Phoenix through Mayo Clinic and the best we can do is join a Cancer group for all Cancer patients. That is why we are so glad when people search and find us, we are very unique and I might add fabulous! I have looked at other disease support groups and quite honestly we are quite unique...and I am proud of my bragging rights! I just wish this crazy CC did not exist and we could be here just for meeting wonderful people. Not sure if I missed it but may I ask the age of your Dad?

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

He was 73 in February.

Re: Hello

Mendi, my husband was 73 when diagnosed and made it to 78, however he went through a lot. In June of 2010 we were told the cc had returned for the 3rd time and there was no more that could be done. The ONC said Teddy had about 5 months left and offered the Palliative chemo to which Teddy asked, "If I do the Palliative how much time will that buy me?"  The ONC said about a month. Teddy thought about it for 2 days and said no. He would rather have as much quality time as he could over quantity. It is a very personal decision to make but we never regretted what we did. If that is what Dad wants, so be it and I hope his journey stays very comfortable and you never know, he could surprise everyone!

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

Lainy,
Thank You so much for the encouraging words! It means a lot to talk with people that understand what your going through. From what I have read, the end of the battle seems to be so tough. I just don't want my Dad to be in pain:( I will be in touch and hopefully Mom will register also!

Re: Hello

Mendi, I know we say this a lot but everyone is so different. With all the Meds we have today there is no reason to have a bad ending. I had Hospice come in August 15th 2010 and Teddy passed Dec 6th. I can't it was easy BUT we laughed and joked our way through and I can best sum it up by saying every time a new Nurse would come Teddy would say, "We are on our honeymoon". Because Dad said no to chemo has the ONC brought up Hospice? They will start up to a year out and Home Hospice is wonderful. Please feel free to email me at any time. Sending lots of hugs.

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.