Topic: Intro

Hello everyone. Unfortunately husband was diagnosed in August w/intrahepatic bile duct cancer non respectable. Three large timers on liver, several lymph nodes enlarged in stomach. Blood test for tumor marker was 24000, started Gemara/cisplatin cycle in Oct, finished cycle not responding. New chemo 5fu /oxiplatin(sp?) combo and it is wearing him down!

Love dr except he does not tell prognosis ever per nurse. All we officially know is no cure just possible treatment, no staging. husband is in denial thinks he has years to fight this, I have read research info, average median survival 6 months from my research. I am firm believer in mind having power over physical condition but I need to know something! Hubby's pain is increasing blood sugars sky high, has had potassium levels too high.....just so much. And I know that you all understand.
Sorry to have gone on just feels good to get this out finally, little support.
Thanks for listening, any input appreciated!

Re: Intro

Hello Nd58 -
Welcome to the best little family that no one really wants to be a part of. You will find lots of good support here and we are always here to help, answer questions or just listen if needed.

My first question would be where is your husband being treated at? Is this a cancer center that has dealt with a lot of CC. Because it is so rare smaller cancer centers have a tendency to have not seen it much. I would also ask: Have you gotten a second or even third opinion? Sometimes doctors who have seen this more are more on the cutting edge.

I do not know much about 5FU yet, my husband will be starting this is a couple of weeks as adjuvant with his radiation. But we have much experience with the Gem and the Oxaliplatin. He just finished 6 months of that combo. I know the Gem destroyed his veins and the Ox drove him nuts with the cold sensitivity. Had to drink warm water, warm teas and hot coffee, even heated his Gatorade up (Yuck by the way).

As for the pain, what is he taking for pain medications? If what he is on is not working, there are plenty of options to chose from. And as for his blood sugars, they are going to probably be all over the place, especially if they give him dexamthasone for nausea....my husband had a big dose before chemo and the took it for two days afterwards. I wouldn't get terribly worried about those right now unless they are running really high. The biggest thing is to make sure he is eating enough protein. If you have to make protein shakes or something like that.

And don't even feel bad about your posts to us. This is such a crazy disease that often you feel like you are on a roller coaster. This is what we are all here for.

Keep us posted and we will support you any way we can.

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: Intro

Thank you! Yes we got second opinion and both docs are considered knowledgable. Onc specializes in gastro cancers. He takes OxyContin twice daily and Percocet for breakthrough up to three per day. Dr is good about pain control. We do protein shakes, he is turned off by meat from chemo . Blood sugars over 450 , we see Gp tomorrow, onc fri.

I am positive hubby doesn't want to know prognosis, tried several times to bring up what ifs, but he ends conversation. He tried to postpone seeing an attorney for our will and ect. but this must be done .
I stay positive w/him and try to build him up but have cried so much alone I think I may dry out, lol. He is only 62 too young.
I am wondering about jaundice. The night of chemo he turned yellow orange, it lasted only about an hour then went away.  I think that is odd. And he gets freezing cold inside his chest periodically, has anyone heard of this?

Thanks for reading and listening
Nan

Re: Intro

Hi, Nan,

I'm sorry you had a reason to find us, but it is a great place to get support for anything. I wish I had some suggestions for things to make things better. Hopefully some members with longer experience with this will be along. I've been through 4 gem/cis cycles and I haven't had the problem with side effects that krisV mentions. But, I'm an ear to listen. Just know you aren't alone.

I would think (quick disclaimer I'm not a doctor, just another patient), that jaundice from a blocked bile duct wouldn't come and go. I'd watch his color, and call your doctor if he's yellow again. There are a number of posts about the blockages and drains they can do and we can point you in the right direction if you need it.

Lisa

Impatient patient.

Re: Intro

Hi Nan, welcome to the cc family.  I don't have too much input or advice for you but wanted to give you a warm welcome.  I was on gem.cis for almost 8 cycles and fortunately had few side effects with that.  I am not familiar with the other cocktails.  I am glad that you so far have gotten 2 opinions.  A 3rd one probably wouldn't hurt.  Are you feeling like you are wanting to know more info from your doc regarding the diagnosis and prognosis?
Take care and keep us posted.
Porter

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

Re: Intro

Hi there
Some solid advice was given to me 2 weeks ago.  My husband was diagnosed with ICC in December 2013.  The advice given was that I must take over control of all legal and financial matters.  I have begun to do so.  I do involve my husband, who is not well enough to do these things himself.  I have requested a list of all his insurance policies, and communicate with his medical insurance and have seen to the Will. I am also helping him manage his business.
I would suggest that you write a new Will and then read through it with him.  Have 2 friends (not family) present when both of you sign it.
Have your attorney draw up a power of attorney document, giving you signing rights if he is not well enough to make decisions.
You do need to take control, even if it seems unfair to him.  As a matter of fact, you will be helping him and taking care of the future of yourself and your children.
It is tough.  I have terrible emotion times.  I feel awful but know that it is necessary.
Also, ask him questions and write down answers (obviousloy not blatantly in front of him).  Think of anything you may need to know when he is gone. 
I hope this information helps and encourages you. 
Know this, everyone on this forum knows and understands what you are going through.  It is good to have people to talk to who understand the emotions and decisions you face.

Re: Intro

Nan -
You are probably right about your husband not wanting to know how bad it is. My husband was the same way when first diagnosed....he wouldn't even call it cancer....it was a tumor and that was it. He got mad if anyone mentioned it was cancer. And he wouldn't even think or talk negative.

One thing I will suggest is that you talk to the doctor about changing the Percocet to plain oxycodone (short-acting version since he is already taking the long acting). The Percocet has Tylenol in it which can be hard on the liver especially when taken routinely for a long time. Plain oxycodone will cover the pain just as well and eliminate something that may be stressing the liver.

Other than that, make sure he's drinking plenty of fluids. Hydration is important.

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: Intro

Hi Nan,
Welcome to this wonderful and supportive group. I also live in Ohio and am treated at The Cleveland Clinic. Chemo tolerance is different for everyone but I did have the 5FU and did very well with few side effects. I think you will find hope and compassion on this site. If you would like to talk please feel free to call me anytime.
330-903-6868
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: Intro

Dear Nan, welcome to our elite little club that no one wishes to have to join. As for the ONC I do not care for his attitude. It is your RIGHT to know EVERYTHING. Have you sought out a 2nd opinion. I don't want to repeat what has already been said but all above have given you great advice. The bottom line is comfort. Teddy was on Morphine and did very well with it starting out very low then increasing as he needed too. VERY important to have a will and Medical directives. You can get it all set up and then just have your husband sign it along with 2 witnesses. You actually can find all kinds of legal papers on the Internet. We are all here for you so please feel free to post anytime, 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: Intro

Hi Nan,

Don't have much more to add but also wanted to welcome you.  Sorry you have a need to be here, but glad you have found us.  I agree the a second opinion is needed and that comfort and pain management are the most important things to deal with right now.  Take care and let us know how things are going.

Love & Hugs,
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: Intro

My husband knows the prognosis but chooses not to let it get him down. When the oncologist told him 6-9 months, he said "You don't know me." We have prepared but not overly stressed out about when he will no longer be with us. He has chosen not to have any treatment because the outcome would be the same and he feels pretty good now. Hospice has been a great help and they are really on top of everything. He has had few symptoms, no jaundice, and was diagnosed on Thanksgiving Day, 2013. If you have not involved hospice yet, I highly suggest you do. My husband (age 63) was reluctant at first but now he is happy to see his nurse when she comes. God bless your family during this difficult time.

Re: Intro

Hi Nan,
My husband behaved in much the same way that you describe. He remained optimistic that he would return to work right up until the very end. Initially we cried quite a bit together, and even joked at how it "cleared out our sinuses." But I too cried a lot more when I was out of his sight, and tried to be optimistic and positive when I was with him.

I'm glad that I took the steps I did, such as the ones you describe, with regard to asking him about email passwords, and other information that only he knew, so that I wouldn't be at a complete loss when the inevitable happened.

Still, I regret that I didn't have the clarity of mind to have more of a "goodbye" talk, because that is what I truly long for now. I was so in shock with the sudden diagnoses and monumentally fast decline, however, that I didn't even know how to form this idea or know that I would want it once he was gone.

I am glad that I made a little video with my phone of us talking to each other. So I do have that and cherish it dearly.

So I would advise anyone and everyone to have some kind of a goodbye talk, in some fashion or another -- it is something that I would imagine would be cherished.

Perhaps others who have taken that step can chime in. I just know that it's something I wish I'd had the presence of mind to manage.

I'm wishing you all the best.
Much love,
Margaret

Re: Intro

Dear Nan, I agree with everything said above as I did like they did...we used to call it getting your house in order. We talked A LOT about everything and somehow that was best for both of us. Teddy even told me what he wanted me to do for a Memorial Service. He was Sicilian, I am Jewish and we had the Memorial at his Church and it was the first time ever this Church let a Rabbi  on the Alter to give the eulogy. We also had the Jewish Choir and Catholic Choirs singing. I had everything done and taken care of so that I would not have to spend the next month or so doing that investigating and paper work.
Here was an example of his attitude. I had him in home Hospice until the last 4 days and then the Nurse and I felt he needed to go to a Hospice Facility. We had already agreed with this plan. The hardest part was that he insisted I drive him, he did not want to go by Medical support. As he was settling in bed there he asks, "Have you made plans for the Memorial?" I said everything is in place and he said with a smile, "I should have known that". I was blessed to have had 16 years with him and I was so thankful for his attitude which helped ease the Journey. Remember one thing that might help you get strength and that is you are now in charge, you are the boss. While he watches TV you can go on a computer and get a lot done. No one asks for a job like that but the more you get done now it will ease the Journey later.

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.