Topic: Intro & Questions

What we know at this time :  The doctors will not confirm it is CC until after they have their team meeting this Friday, but unoffically we were told that is the the dx to expect.  His cancer is inside the liver only.  We have been told my husband's cancer is inoperable as it is on both sides of the liver and it is too close to vein or artery (I forgot which) and it is rather larger (on right posterior lobe).  He also has multiple lesions which also factors in.   They pushed us towards SIRT (Selective Internal Radiation Therapy) even before their official meeting....  as they believe it is our best option at this time.

We were not given a stage but given what I have read I think we are at IIIa.  Doing some reading I'm guessing it is ICC as it is inside the liver only.

About my husband:  He is stubborn, strong-willed and extremely active 69 yo.  His only signs were pain in shoulder and exhaustion.  No jaundice.  He is still working, still active and hasn't lost weight, but has been suffering the past 3 weeks with very discomforting feelings of fullness, burping, nausea.  We are having difficulty finding foods that he can eat without feeling bad.  Even protein shakes seemed to bother him. 

What I'm hoping for:  The docs spend about 5 minutes downloading info to us at a time.  We have been sped through this process and I'd like to know what we should be asking, any helpful tips on dealing with issues (like his struggle with food), and suggestions from those that have been here before.  I feel like we've just gone along with the docs... ok pass check point b, go to c... take more test... and we still are in the wave of not understanding, disbelief and trying to come to understand.  It is finally starting to sink and I'm ready to begin the fight with my husband now.  I'm hoping the posters here will help us in this journey so we can fight a better fight.

Thanks, Lisa wife to Bill

Re: Intro & Questions

Dearest Lisa, welcome to our wonderful family and we are sorry about Bill. First I want to say what a wonderful woman you are as your attitude is what will get you and Bill through this rocky journey. Read and read some more. To be knowledgable on this rare Cancer is to be forearmed. We have a search engine at the top of the page and by typing in a word like 'nutrition' many posts will appear with lots of advice.  Keep a daily sheet of questions so that you an ask away when you meet with the doctor. Where is Bill being treated? You are not alone, we are here for you and yes we will help you walk this journey! I know others will be joining you on this thread.

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 & Questions

Dearest Lisa,
Reading through your painful story it reminds me of my soulmate.
He also had similar symptoms but unfortunately his stage was 4,with spread outside liver. I lost him last December.
Pray for the Best for Bill.
Take care
nk

4 (edited by childlikehope Mon, 29 Nov 2010 22:48:36)

Re: Intro & Questions

Lainy:  .  I've talked to him about going for a 2nd opinion, but he wants treatment NOW and is afraid of slowing the process.  Given what I have read, I believe it is not likely we will find a doctor who will resect him... so I'm with him on getting treatment as quickly as possible.  I have been reading... and reading.  I hope to be a strong advocate and fighter for him. 

Nk... I'm so saddened by your loss.   I'm so bonded to my husband I've been suffering sympathy pains with him (nausea, burping, etc.).  smile  I can't even go to the place of imagining life without him and I'm so saddened you live without your soul mate and know that place.   I'm sorry this brings such sad memories for you.  (((hugs))) if you are comfortable with them.

ETA:  Went to the Oncologist today and he gave me the ok to give Bill my 'special' ginger/turmeric tea.  Actually said Ginger tea was a good idea and that's why I'm posting about it.   For those interested I use a muslin tea bag and add 1 teas ginger and 1 teas turmeric (pepper to taste) simmer 10-15 minutes in about 2 cups water.  We add 1 teas lemon and 1 teas raw honey.    He also gave me the go ahead on the mushrooms (I found out about on these forums).  Thanks guys and gals for that one! smile

Edited out hospital name and location.

Re: Intro & Questions

Hi Lisa,

Welcome to the site. I am sorry that you had to find us all and I am sorry to hear Bill's diagnosis. And yes, I can so understand your feelings right now as I felt like that when my dad was diagnosed with his inoperable CC. And I am happy to hear you say that you and Bill are now getting ready to fight back and that Bill is strong willed. A strong attitude and being up for the fight will help here and I know that once you start fighting back then you will start to feel a bit better. My dad went through exactly this once he got his treatment plan in place, metal stent inserted and PDT.

And we will all be here for you and you will get a load of support from us all, and please feel free to ask any questions and we will help if we can. Yes the burping is a common issue and my dad used to hav bouts of this. He never really found anything that seemed to help but I recall someone here lately trying something and posting about it and they said it seemed to work. The search function should help if finding this out. Nausea, was Bill given anything for this? And for the feeling of being full, perhaps trying foods that are easier to break down such as minced beef, soup etc. My dad had issues with that also and that is what his specialist said to try.

Keep reading, keep posting and you will become the best advocate that you can for Bill.

My best wishes to you both,

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.

6 (edited by childlikehope Mon, 29 Nov 2010 19:40:05)

Re: Intro & Questions

The doc gave him three meds today to help. smile  But he told my husband he should go out and have hamburgers... so we tried it and the meds did help and maybe the heavier stuff is better right now.   

Thanks, Gavin for asking and for sharing.  Soup was working for us so that was good advice.

I just wanna ramble a bit...  the doc said a few things today that had me a bit muddled.  He said transplants were not an option for this cancer because of the adrenal system (edit:  went back in notes he actually talked about 'glandular' and I thought adrenal) and immune issues.  My dh doesn't have immune issues I'm aware of and I have read on these boards about people getting transplants... so that seemed a bit off.   But what really bothered me is the doc acted like he was trying to convey how he's there to 'comfort' us as my husband dies.  I do appreciate it.  Yet...   My husband is alive right now and until he's confronting death....  I don't know... it's just my husband is really acting pretty healthy and it's just getting to me that everyone seems to act like he's leaving already.   I'm afraid this kind of 'comfort' is like my mom giving me wild turkey as a youngin' to send my cranky butt off to sleep because she didn't know how to deal with me.   

I'd have thought a man would have to at least act sick before people throw their  hands up and send him off this way.  Just grumbling....

ETA:  I think docs was saying my dh has a combo of Cholangiocarcinoma and Hepatocellular from reading online.... type C: an intimate intermingling of hepatocellular and glandular elements (mixed type)  Taken from: http://jjco.oxfordjournals.org/content/33/6/283.full

Called: cHCC-CC   I guess we're not cc or icc now.  Who know's what we'll be tomorrow.

Re: Intro & Questions

Lisa...I recall only one other person with combined Hepatocellular and Cholangiocarcinoma, on this site.  He had been treated at MD Anderson.
Regarding your doctor's opinion:  Doctor's vary with their approaches regarding treatment and life expectancy of their patient.  Some appear to be more optimistic whereas others tend to have a more negative outlook on the outcome.    I believe that some physicians shy away from what they feel may be promoting "false hope" for the patient.  But, I think that realism should be coupled with hope. (This Kris has taught us.), Perhaps, based on today

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

8 (edited by childlikehope Mon, 29 Nov 2010 22:49:56)

Re: Intro & Questions

Marion, frankly we don't know what type as yet as all the doctors seem very reluctant to give it a name, we were told 'unofficially' in the murky world of maybe... we thinking...  Then today the local doc seemed to confirm what the other doctor said it maybe by mentioning the ducts and glandular.   Bill won't go yet for a second opinion.  He doesn't care what they name it... just that they treat it.  He says that's the local docs job... comfort care... nausea meds, pain relief if needed.  The big city docs will have the job of fixing him up and he's hoping the tumors/lesions shrink with SIRT and that will open up some options.  (Not that any doctor has said it would open up options for us.)

Realistically, I know on some level my husband's body is dying even though he's acting healthy and without resection or transplant he will not be cured and will die from this cancer.  But my husband's spirit is very much alive and fighting... likely why he's so physically active still.  I want to protect that spirit.  I'm angry and sad and scared and confused.  I'm a mamma bear hovering 'round my wounded mate.  As long as his will is alive and fighting and he believes he can make it for some time I'm gonna live in the another murky world.... childlike faith my man can rise up and stay with me.    If anyone can... he can. 


But I also need to let go of believing I might find a magic cure online somewhere.  I can't fix this for him.   I'm a messy gal right now and likely need to tend to business and not make this cancer upstage our whole life together.

Thanks everyone for letting me come and vent, grieve, etc. here. smile

Edited out location.

Re: Intro & Questions

So much of our lives are consumed by this cancer - either caring for our loved one, looking for treatment or doctors, sometimes the day-to-day business is a blessing. Sometimes it's more than we can handle. You are doing great. Keep up your positive attitude and fight. Fight for your husband's life and do all that you can while he is feeling good. Some have said that this cancer is a blessing because it raises your awareness to how precious life is and how precious our relationships are. Vent, grieve, whatever you need - we are here. Blessings, Susan

Re: Intro & Questions

Lisa....everyone has his/her own way dealing with this disease and supporting our loved ones in this endeavor is the most value gift we can make.   You are a wonderful example of that.  There is no reason to believe that your husband won't response positively to treatments offered, because people do just that all the time.  We have seen this on this board over time and we continue to witness it. Numerous treatments available have allowed people to live with this cancer by treating it like a chronic disease.   And, who knows what will come our way tomorrow?  It has been suggested that those patients with a positive outlook have shown to fair best and your husband is practicing just that.  More power to both of you. 
Best wishes,
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