1 (edited by Lita Mon, 21 May 2012 09:00:12)

Topic: My young 30 year old husband is battling cholangiocarcinoma

Almost two years ago at the age of 26 I married a wonderful Englishman I met during a work internship. His name is Oli. He redefined for me what love is and how relationships work and thanks to him I started to believed in love, and in marriage, and in spending the rest of my life with someone.

We spent one and a half years in marital bliss. I often thought how I was so incredibly happy. I almost thought it was impossible for someone to be as happy as I was, that things were too good to be true...

Then in February, we took Oli to get some tests after having spent the good of six months with abdominal pain which the doctors thought was acid reflux or a stomach ulcer. The scans revealed that he had a large 10cm tumor in his liver and he was diagnosed with intrahepatic cholangiocarcinoma.

So we are dealing with the aftermath and it has been an incredible journey filled with all the spectrum of human emotion that you can imagine. He did not respond well to the first chemotherapy drugs and after two months the tumor continued to grow and spread. He is now in second line chemotherapy, which has an even slimmer chance of working. We live one day at a time. It is impossible to make plans for the future going further ahead than about a month and I have taken leave from my job to care for him and spend as much time as I can with him, as I don't know how long we have together.

I am facing the likelihood of being a young widow and of loosing my soulmate. However, Oli, as much as he taught me the meaning of love, has also taught me the meaning of death, and I now know that despite no longer being a part of this earth in body and mind, his spirit will continue to forever guard over me and provide infinite love. This gives me comfort and joy and the will to keep going, no matter what happens.

I want to tell all of you on this forum that I am here for you, and I know you are here for me too.

Re: My young 30 year old husband is battling cholangiocarcinoma

Lita
I'd like to welcome you to the CC family where you can be certain that we are hear to support you and Oli.  The members here (many are from the UK) have built up a wealth of knowledge, which they share openly for the benefit of all.  To get the must from this site, perhaps you could provide more details of Oli's treatment programme, what chemo treatment he tried and the hospital he is attending.  That way the members will be able to share their specific experiences/knowledge. 

Others will come along soon to welcome you and offer valuable information/advice.

Take care

Gerry

Re: My young 30 year old husband is battling cholangiocarcinoma

Hi,
Sorry we have to know each other this way thru a disease web site.
The acid reflux symptoms for a long time sounds very familiar in my intrahepatic CCA experience.
If second line chemo donot seem to work, clinical trial and interventional radiology treatment will be other choices.
Like Gerry who responded to your message a lot of our members are from UK. They are knowledge and helpful .
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: My young 30 year old husband is battling cholangiocarcinoma

Lita,,
My prayers are with you. And you have come to a great place.  I completely understand your feelings. Please share with us what chemo your husband is on.

And may I share with you my humble thoughts regarding this horrible disease. My husband was diagnosed this past November 2011, and every day we thank God for another day and we continue to see and believe our future together. The mind is a powerful thing.  We also have pictures of an undiseased liver in the bathroom and in our bedroom.   

You have a future with your husband believe God for it. I praise God for all of the wonderful doctors we have met, and we have also met some that weren't that nice (poor bedside manners), but at the end of the day it is God who has the final say on who lives and who dies.

LIVE and keep on LIVING.

Blessings and you and the rest of our CC family are in my prayers

Be encouraged.
EDH

With God all things are possible. Believe!

Re: My young 30 year old husband is battling cholangiocarcinoma

Lita,,
My prayers are with you. And you have come to a great place.  I completely understand your feelings. Please share with us what chemo your husband is on.

And may I share with you my humble thoughts regarding this horrible disease. My husband was diagnosed this past November 2011, and every day we thank God for another day and we continue to see and believe our future together. The mind is a powerful thing.  We also have pictures of an undiseased liver in the bathroom and in our bedroom.   

You have a future with your husband believe God for it. I praise God for all of the wonderful doctors we have met, and we have also met some that weren't that nice (poor bedside manners), but at the end of the day it is God who has the final say on who lives and who dies.

LIVE and keep on LIVING.

Blessings and you and the rest of our CC family are in my prayers

Be encouraged.
EDH

With God all things are possible. Believe!

Re: My young 30 year old husband is battling cholangiocarcinoma

Hi Lita,

Welcome to the site. I am sorry to hear about your husband and what you both have been through already, but I am glad that you've joined us all here as you will get a ton of support from the great members here. And yes, most certainly we are all here for you and know what you are going through.

I too am in the UK, in Dundee in Scotland. I came here after my dad was diagnosed and it was the best thing that I could have done personally for myself. It was good being around people who knew what I was going through and that helped me a lot. Like Gerry says, can you give us some more info on Oli please. Where is he being treated now and have you looked into getting a second opinion for him?

Here is the link to a UK site that will be of use to you as well. Helen does greta work with her AMMF site and it contains info specifically focused on the UK, treatment centres, doctors etc.

http://www.ammf.org.uk/

If we can help in any way then please do not hesitate to ask and we'll do what we can to help. And remember that we are all here for you.

Best wishes to you and Oli,

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: My young 30 year old husband is battling cholangiocarcinoma

Lita,
Welcome to the family. I feel my chest swell with concern and love each time I hear of a new case of CC. I have inoperable intrahepatic CC myself. My first experience with chemo didn't fare so well either. It did nothing as my tumors continued to grow (although I consider myself blessed at the slow rate they are progressing). Because of the way I reacted to chemo, the docs went right to the interventional radiology route rather than trying different chemos. I had my first chemo embolization 4 weeks ago. The next one was scheduled for next Thursday but I am having a flare up with the ulcerations in my small intestine. Dr. wanted chest/abdomen CT before the embolization but does not want to inject dye while I am having flare up..........so everything will be moved back a while.

Just continue to believe and enjoy every tiny experience.

Let Oli know we love him and are pulling for him.

-Byron

"Pull down your hat, strap on your spurs, and tighten the cinch. Let's ride this mustang."

Re: My young 30 year old husband is battling cholangiocarcinoma

Byron,
Thanks for sharing.  How did you do on the chemo emb. Since my husband is not a candidate for Y90 the Dr wants to move right to bland embolization. I would think the next step would be chemo before bland.  Since bland will cut lf all blood supply to the liver treated and cause thattreated area to die off.  Did your dr mention anything about bland embolization?

With God all things are possible. Believe!

9 (edited by Lita Mon, 21 May 2012 14:19:43)

Re: My young 30 year old husband is battling cholangiocarcinoma

Hello everybody. Thank you for your messages and responses. I will give you more detailed information on the situation.

My husband's first line chemo was Gemcitabine and Cisplatin. The second line chemo is Oxaliplatin with 5FU and Folinic acid, this is also being supplemented by Bevacizamab (Avastin). He started this last week Wednesday.

He had two liver biopsies. The first was inconclusive and the second concluded that his cancer is a poorly differentiated combination of cholangiocarcinoma and hepatocellular carcinoma. Initially, the tumor was 10cm in diameter and there appeared to be some local lymph node involvement (the scans could not confirm this 100% but the doctors were pretty certain due to lymph node enlargement). His CA-19-9 was 30,000 (normal is 0-20) but his liver was working well. Some doctors believed that high CA19-9 was due to spread in the peritoneal cavity. His bilirubin was stable at the time, no jaundice, no itching, just a lot of abdominal pain. We got 5 different opinions from the US and UK: Memorial Sloan Kettering, MD Anderson, Mayo, Liverpool Aintree University Hospital, and the London Bridge Hospital (the team is directly linked with King's College Hospital). 3 voted in favor of chemotherapy first with the hope of shrinking the tumor and then operating, and 2 voted in favor of surgery first. He opted for the chemotherapy first option; it was the majority rule amongst the international medical community and the option that gave him the most peace of mind.

Now, after two rounds of 1st line chemo, his cancer has progressed. The tumor is larger, involves the hepatic artery, and there has been more spread into the lymph nodes. He is no longer eligible for surgery. Prior to the scan that revealed the situation we were very optimistic, because his CA19-9 had dropped from 30,000 to 500 but for some reason this was not indicative of how the situation was really unfolding. We spent 8 days in hospital last week. He was in a lot of pain, calcium was high, hemoglobin was low, bilirubin was high. It wasn't until all these were brought back to normal that he was able to receive chemo and be discharged from hospital. Today we went on a small bike ride and he insisted on cooking me dinner. It is truly a roller coster experience and things can change from one minute to the next.

He is being treated at the London Bridge Hospital by a team that specialises in liver cancer and cholangiocarcinoma, and we are confident in our medical team.

In addition to the medical treatment he is receiving, we have also changed our diet (juices, smoothies, organic, no red meat, no sugar, low animal protein). He does visualization excercises, meditation and yoga. We have tried to embrace all the complementary approaches possible.

I hope with all my heart that he is able to heal and for us to have a long life together, have children, go on a 6,000 mile bike ride in Southeast Asia, start a business. However, all my extensive research points to the very sad fact that this is a terrible disease. This is going to be a major battle, and a very painful experience overall.

Any suggestions or advice that you can provide for us on the way forward would be very welcome and appreciated.

I send you all my most positive vibes and warm wishes.

Re: My young 30 year old husband is battling cholangiocarcinoma

Dear Lita, welcome to our extraordinary family but sorry you had to join us. You so, remind me of Teddy and me but we were much older when we met. You are doing ALL the right things and your attitudes are great. Attitude plays a big part. Teddy used to tell people we were on our honeymoon! Keep all that love going and glowing and it will get you through so much. We never listen to time frames as we have members who did nothing and are surviving and we also have members who tried it all and succumbed. So numbers are useless and we were not born with expiration dates. You are so right that if the worse happens Oli will be all around you, I know, I keep a diary of Teddy's visits and if you are a believer, it will get you through it all! Try to take it day by day abd above all BE STRONG!

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: My young 30 year old husband is battling cholangiocarcinoma

I am facing the likelihood of being a young widow and of loosing my soulmate. However, Oli, as much as he taught me the meaning of love, has also taught me the meaning of death, and I now know that despite no longer being a part of this earth in body and mind, his spirit will continue to forever guard over me and provide infinite love. This gives me comfort and joy and the will to keep going, no matter what happens.

Lita, those are beautiful words. So moving.

My heart goes out to you and Oli and I wish you nothing but healing and peace and comfort in the coming weeks and months.

Deb xxx

"The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares." [Henri Nouwen]

Re: My young 30 year old husband is battling cholangiocarcinoma

Lita,

I am so sorry to hear about your Oli. My daughter, Lauren, is only 26 and has CC too. As a Mom, it is so hard to see my child go through this. As a young wife, I am sure it is equally devastating. I am sure Oli has so many hopes and dreams as does Lauren. All I can say is Lauren takes it one day at a time and tries to make the most of it. It sounds like you and Oli do the same. I will pray for a miracle for Oli as I do for Lauren and so many others every night. God bless you both.

Love, -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: My young 30 year old husband is battling cholangiocarcinoma

Dear Lita-
I can only echo the words of support you have got already from our wonderful CC family. We are always here.
Chrissy M

Re: My young 30 year old husband is battling cholangiocarcinoma

Dear Lita,
I recently lost my mother in March 2012 to Cholangiocarcinoma, she was 66. She did have the surgery with a 6cm size tumor, opted for no chemotherapy, and lived 19.5 months. We are here for you, sending love, hugs, and many prayers. Be positive, and follow your hearts, the rest some how works itself out.  Please stay in touch, you can find me on facebook or email me at: ronidinkes@yahoo.com

Love & Prayers to you and your husband,
Roni

p.s. Dr. Schulick has moved from Johns Hopkins to Colorado to be a Departmental Chair for he University of Denver Surgery Department. He gave my mother 19.5 months, and as far as I am concerned has is one of the most prominent surgeons in the field.