Topic: Father in late 60's, stage 4, 7cm tumor

My dad was just diagnosed with stage 4 Cholangiocarcinoma, his tumor is 7cm and has grown into his liver. Doctors are saying w/o chemo he could live 3-4 months. With Chemo 6-8 months, possibly longer depending on how the chemo works. He has decided to go ahead with Chemo, which will start next week and he will receive it once a week. He will go for 2 weeks and then be off for one week. The medications he has been told he will be given are Gemcitabine and Carboplatin.

The toughest part is he is in Portland, OR and I am in Atlanta, GA. Not being physically with him during this time is going to be most difficult. I am trying to determine the best time to go be with him which I think will be better determined after the first cycle when testing will determine how he is responding, how long treatment will be and prognosis after the first cycle.

Any tips on increasing expectancy and just helping my dad get through this time in general is much appreciated!

Re: Father in late 60's, stage 4, 7cm tumor

Dear Mannaribbit, welcome to our extraordinary family and while we wish you didn't have to be here you have come to the right place. I think your idea about visitation sounds good. It is very hard to be across the country from each other. There is not much you can do at this point except to be very loving and supportive. Does he have someone to help him in Portland? Also please know that we highly believe in 2nd and 3rd opinions and that wherever he is being treated is very experienced with CC. Please keep us updated 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: Father in late 60's, stage 4, 7cm tumor

Thank you, he is seeing what we have been told is a doctor that specializes in this type of cancer named Dr.Bhardwaj. My dad also has Ulcerative Colitis and Diabetes. The only symptom he has at this point is pain. The tumor has also spread to the abdomen.

Any pointers on seeking 2nd opinions, he has Medicare and AARP. Should I look into sending him to a specialty center out of state? I am just overwhelmed at this point.

He does have my mom and siblings in town, as well as other family.

Thank you!

Re: Father in late 60's, stage 4, 7cm tumor

Hi,
Have you tried EMORY university hospital at Atlanta?
You can start an appointment  with their oncology specialty.
God bless,

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Father in late 60's, stage 4, 7cm tumor

mannaribbit.....I too would like to welcome you to our site.  I am glad that you have found us.  Personally I find it important to educate yourself as much as possible about this disease.  Doctors are able to give general time frames however; individuals vary in their responses to treatments hence, at this point, no one can say as to how long your Dad will live with this disease.  Much information can be found on this site.  It will help you learn about this disease and communicate with those sharing their personal experiences with you.  And, as Lainy has mentioned, supporting your Dad's decisions if indeed he makes educated decisions.
I agree with Lainy, a second or third consultation with a specialist is in order. You would want to look for a center/physician treating a high volume of CC patients.  Generally you will find that in major cancer centers.  I assume that your Dad has someone advocating for him and tending to his needs.  The chemotherapy treatments he is planned to undergo will have side effects hence, you might want to look up the drugs and what possibly is to expect.  Somehow I always prepared myself for the worst and then was happy not having to act on it.  You too will find your path.
Others will come around real soon and share their thoughts with you.  In the meantime don't hesitate from asking questions - we are here to help each other.
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: Father in late 60's, stage 4, 7cm tumor

I know how great Emory is, but he is in Portland, OR. What is the best way to go about finding specialists to get a second opinion in his area? Is it possible to have a specialist review his medical records or would he need to actually be seen in person?

Re: Father in late 60's, stage 4, 7cm tumor

I do have one suggestion until we get a few more members on here:

Swedish Medical Center - Seattle Hospital

www.swedish.org/

Swedish is the largest nonprofit health-care provider in the Greater Seattle area.

500 17th Ave  Seattle, WA 98122
(206) 320-2000

I remember we do have a couple of Members who went there and I know some more will come forward tomorrow with more suggestions. Hang on and hang in!

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: Father in late 60's, stage 4, 7cm tumor

Thank you!

Re: Father in late 60's, stage 4, 7cm tumor

Wow, I just thought of the other place!
The University of Washington Medical Center Seattle, Washington, www.uwmedicine.org , medical records, scans, lab results, etc., may be mailed to other cancer centers for evaluation.  Again, helpful members on this site may come up with the names of more. In the meantime you can start gathering any of the Medical Information above. Take a deep breath now, put on the boxing gloves your fight begins now. Oh, BTW we do not listen to time frames re: life, we were not born with expiration dates stamped on our feet.

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: Father in late 60's, stage 4, 7cm tumor

Hi there,

Welcome to the site. Sorry that you had to find us all and I'm sorry to hear about your dad. But you have done the right thing in coming here as you are in the best place for support and help. There is not much that I can add to what the others have already said to you but I wanted to welcome you here.

I found this on our homepage from the major treatment centres page -

http://www.cholangiocarcinoma.org/major … ers.htm#WA

I know that your head will be spinning right now with everything that is going on, and i must be harder for you as well with you not being able to be there right now with your dad. But please stay strong. We are here for you, we know what you are going through and we care. Please keep coming back and let us know how everything goes.

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.

Re: Father in late 60's, stage 4, 7cm tumor

An important tip I got after my wife's diagnosis in April was to create a personal copy of all of her medical records.

I would recommend you (or have your dad) request a physical copy of all of his reports and lab results.  Most importantly, you want to get a copy of his scan images (CT, Pet or whatever) on CD disks.  Whereever he got the scans are usually set up to provide these disks.

In my experience, armed with this information, you can quickly get a second opinion from most doctors and hospitals.  You do have to contact them directly and send them a copy of the information, but every doctor I have contacted has been very willing to spend a few minutes talking and has been willing to take a quick look at the scans.

If you don't have a personal copy of this information, a second opinion requires the hospitals to exchange information.  This process can be much slower, and often starts with a formal referral request.  At that point, two hospital beauracracies and your insurance company become involved which can add lots of time to the process.

I am not sure how often you will seek a second opinion about some aspect of your dad's care, but my experience has been that the "get a copy of all your records" tip has been hugely helpful.

Jason

Re: Father in late 60's, stage 4, 7cm tumor

That's a great tip Jason about creating a personal copy of the medical records so that you have it on hand at all times if needed, thanks for sharing that one!

Best wishes,

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.