Topic: Hello, I'm new

Hello All,
I've been lurking here for about 3 weeks and have found you all to be so informative and knowledgeable. 
My 53 yr old hubby was diagnosed (intrahepatic cc) about 8 weeks ago---what a nightmare--it boils down to this:  after many endoscopic procedures, bile drainage tubes,  etc., he finally had a probable diagnosis of cc.  Surgeon says he's confident he can 'get it all with clean margins', however after the surgery he says that he couldn't resect because of 2 positive lymph nodes, then announces that my hubby has about a year to live and refers us to their oncology department (big *world class* Boston hospital).  He has titanium stents to keep bile ducts open and takes ursodiol daily to stop the itching and keep the bile flowing to prevent clogging, surgeon said he'll need to take this for the rest of his life.

I can't tell you how non-forthcoming these people have been.  Getting ANY information out of them is like pulling teeth.  I just found out today (because ofthis site I am actually learning what questions to ask) that they didn't resect because the 5.6 cm tumor is intertwined with the inferior vena cava, not because of nodes as previously told--eh?

Hubby has started on gem/cis 3 weeks ago (2 weeks on, 1 week off).  The onc actually told him that he wouldn't have any side effects---eh?
She tried to tell him he didn't need the ursodiol anymore--eh?
She told him not to bother with stool softeners anymore (he can become very constipated, not fun) and then proceded to write a prescription for zophran, which can be very constipating.
I have absolutely no confidence in these people--every time we've gone in the onc doesn't even remember him and asks him if he's seen the radio oncologist yet (we met with him for his plan when she brought this guy in for the first consultation).  Also, this is kind of laughable (and there's nothing else laughable), this doc looks at me every time we're there and says, 'Please don't try to get pregnant during chemotherapy'---I'm 52 years old, are you kidding lady????
I'm trying to set up a 2nd opinion at the New York Presbyterian/Columbia Hosp. that I've seen some of you talk about----with their liver center that has some of the Drs I've seen mentioned here--Kato, Emond, etc.
Good idea, right?
I'm sorry if I'm rambling, I'm scared, confused and feel like someone threw me into a washing machine and hit 'spin'.
Any advice from you guys would be greatly appreciated.

Thanks for listening,
Lisa

Re: Hello, I'm new

Lisa, get a new doctor and second opinion. There is always hope with Gods love. You and your husband need to have confidence in your medical care and this sounds awful the way you have been treated.i will pray that you are given a clear path of treatment.
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, I'm new

I would def get a second opinion, if this is the kind of treatment they are giving you now I don't want to even imagine what it would be like if God forbid things get worse. This disease is a rolllercoaster, hang in there. You will get a lot of support here, what questions to ask and experiences.

Hugs!!!

Re: Hello, I'm new

Hi,
I am not a doctor but I am a patient of intrahepatic CCA for the past 37months, it is surely a roller coaster ride that will need courage ,patience and knowledge along the ride.
I don't know which famous hospital you went to; but in general ,John Hopkins overall will provide you a better experience than what you have said here.
Since you husband have started chemotherapy, I will continue the treatment there until the next CAT scan to get a better picture of your husband's response.
in the meantime,trying  to set up a 2nd opinion at the New York Presbyterian/ Columbia Hosp. or one of the top 17 hospitals in the States is not a bad idea.
2nd opinion by  interventional radiologist first after the next 3month CT scan is a good idea since Gem/Cis is the standard chemotherapy and  most medical oncologist will use first.if you do not satisfied about the current oncology situation,2nd opinion for medical oncology in the same time frame of the radiogy consult is recommended.

No matter where you go, there are always possibilities you will meet some good medical professionals as well as some average ones ;that is human nature as well as the culture of that institution.
keep in touch and thanks for your kind words about this web site.
Try your best my friend to take  care  of your husband and May God's Grace take care the rest for you.
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: Hello, I'm new

Lisa,

I'm very glad you found the site and find it to be helpful.  It sure does sound like you're getting a lot of conflicting information.  I would say a second opinion is in order.
Best of luck to you both and please keep us updated on your husband!

Susie

Re: Hello, I'm new

Dear Lisa, welome to our remarkable family and am so glad you stopped your lurking even though we wish you didn't have to join us. I would run to the next DOCTOR, not walk. This treatment of a patient is totally unacceptable. I like your note of being in a spin cycle as I usually say one feels as though they have been hit by a bat in the stomach. Your "spin" is more refined. Dr. Kato is excellent, you couldn't do better. As if you don't have enough on your plate you get a dessert of inepts. Be strong, hang in, we will be anxious to hear if you get in at NY Prespb.

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, I'm new

Hi Lisa,

I would also like to say to run not walk to a 2nd opinion. Don't ever put up with anything but excellent care. Those doctors sound like a bunch of uncaring buffoons that have no business taking care of your husband or anyone else!! Once you find a place where you feel comfortable, I think you will both feel better. Wishing you all the best.

-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, I'm new

Lisa, husband has ICC and we saw Dr Abby Seigel at Columbia Pres for a second opinion. We were VERY impressed with her. She's a top specialist in CC and really caring too. Her office # is 212-305-9781 if you're interested. I pray God's strength for you.
Audrey

Re: Hello, I'm new

Thank you all so much for your supportive replies, I have learned so much from this site that it's unbelievable.  I actually found out thru this site & you all that the chemo regimen is the correct one to follow, so just be sure I had another onc team that has the nanoknife just outside of Boston take another look--they agreed with current chemo--told us to stay with that in Boston but as soon as that was finished to bring cat imaging to them for their interventional radiologist to evaluate for nanoknife ire. 
The tumor has to be around 4 cm for them to apply nano, so it will have to shrink.
Audrey, thank you, thank you!  I've been trying to get the correct # for the liver specialists there, I'm calling today!
God bless all you brave people
Lisa

Re: Hello, I'm new

Hi Lisa,

I can only agree with the others advice to get another doctors opinion.  This disease is tricky.  Hard to diagnois and harder to figure out the best way to treat it.  Stick with this site and you will get a lot of help and support.  Good luck to you and your hubby on this journey that no one wants to go on.

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.

Re: Hello, I'm new

Hi Lisa,

Welcome to the site. Sorry that you had to find us all and I am sorry to hear what your husband is going through right now. But glad that you've joined us all as you have definitely come to the best place for support and help, and you will get tons of both from us all.

Sorry to hear as well what you are both having to deal with with regards to the docs and getting info out of them etc. That is not right and as you say, you feel that you have no confidence in them anymore so I guess that if I was in your shoes then I too would look at getting another opinion like that others here have said.

I do hope that you keep coming back here and keep posting. Please let us know how things go for you both and please, no apologies are ever needed from you. If you feel like rambling or ranting here then you go right ahead and do so and know that we are all right here for you. We know what you are going through and we care.

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: Hello, I'm new

Hi Lisa,  Sorry to hear about your husbands diagnosis.  My husband was initially diagnosed by Dr. Kruger and Dr. Churkie(wrong spelling) at NYPres in NYC with ICC.    But they are surgeons and surgery wasn't an option for us..   So we met with Dr. Poppa for initial treatment and she worked closely with a local oncologist in our home town so he wouldn't have to go into NYC daily.   The oncologists should work with someone locally for you as well.   

He started with Gemzar/cis, then a few other combinations. 
Zofran works great.  Constipation is an awful side effect of both the treatment and pain killers.  We found the best relieve was a combo of prune juice, coffee and milk of magnesia (ugh!) BUT it works.

Keep the faith

Peony

Re: Hello, I'm new

Hi Lisa,

I am deeply sorry to hear about your husband's diagnosis. My wife and I are similar in age as you and your husband, and still have the two younger kids at home. We understand the shock and disruption that comes with this diagnosis during this time of life.

What you've experienced is unacceptable, simply put. We had a similar experience at the first big, nationally ranked medical center where I was being treated....so my wife pulled me out of there. What we all do deserve with this disease is a place where the people are thoroughly knowledgeable, will treat us like individuals, and will be aggressive in fighting on our behalf. Such places and doctors do exist, as many have shared on this site. Not only can such a place be medically life changing, but it simply provides the basic comfort of knowing that no matter what happens, you are being well cared for. It sounds like you are now seeking better care, and my thoughts and prayers go with you on this journey.

Mark