Topic: Hi! new to this site

Hi everyone! My name is Leslie and my husband Scott was diagnosed wih intrahepatic cholangiocarcinoma in March of this year. We were told that this is a rare cancer especially for someone of his age (31) and health. He is in excellent health aside from this cancer. He had a permenent stent put in in April and so far has had 14 chemo treatments so far but because his last scan showed some growth they are going to try radioembolization. As of right now his cancer is only in the liver with one mass about the size of a tennis ball and several other smaller lesions. due to this resection is not an option and sounds like it will never be. He is currently being treated in Scottsbluff and through the University of Nebraska Medical Center. I was just wondering if anyone else was in a similar sitiation and what kind of treatment you are receiving. This is completely foreign territory for us. Thank You!

Re: Hi! new to this site

Dear Leslie, welcome to our extraordinary family but sorry you had to join us. I am wondering if the U of Neb. has treated many CC patients. It might be worth it to get another opinion from Mayo Clinic in Rochester, MN. It is so disturbing that we are getting more and more younger people with CC on our site. Sure wish we knew why. I know tomorrow you will get more answers here. Saturday nights are kind of slow, date night, you know! Don't think in terms of never as we have seen some remarkable things happen here. You are not alone in this craziness we are all here to help.

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: Hi! new to this site

Leslie...welcome to our club; they one no one wants to belong to, but is glad to have found.  The incidence of this cancer is increasing world wide however, it appears that many younger people are being diagnosed also. As Lainy has mentioned, we are witnessing this on this site. I also agree with her statement in regards to obtaining a second or possibly third opinion from physicians very familiar with this type of cancer.  Generally they are found in the major cancer centers.  It is my philosophy (and that of many others) to become as educated as possible, as it will allow you to make educated decisions.
Several of our members have been treated with radioembolization and hopefully share their experiences with you.  In the meantime you might want to use our search function in order to retrieve some postings referring to this particular type of treatment.
Again, I am glad that you have found us and please, stay in touch.
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: Hi! new to this site

Hi Leslie,

Welcome to this site, although I am sad another young person has had to find us. My daughter, Lauren was diagnosed with Intrehepatic CC in Aug. 2011 at the age of 25. She has a large tumor on her right side and several small ones on the left. Her large tumor started out around 17 cm., the size of a canteloupe, and is now 9cm. Most of this shrinkage occured when she first started chemo and was on Gem/Cis and 5-FU. She was taken off the Cisplatin early spring and continued with the other two chemos until May, when she had radioembolization with Theraspheres on the left side in hopes of killing all the small tumors so Lauren could have a resection. We were so hopeful, but they did not work very well and Lauren developed a new 4cm. spot on the left. They still aren't sure if it is a tumor or from the embolization. Lauren is now on Oxaliplatin and Xeloda. She just had a CT scan last week and her tumors are shrinking again. I think different things work for different people. We go to University of Michigan Cancer Center for Lauren's care. Her doctor has many tricks up his sleeve in case something doesn't work. We are very happy there. Hopefully, one day she can have a resection, but she was told no way at first too. Try and stay positive and never give up hope. It is the only thing you have for sure. I wish you all the best and I would be happy to talk to you any time. You can e-mail me or check out the blog I write for Lauren listed under blogs on this site. Take care and God bless.

-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.

5 (edited by PCL1029 Mon, 17 Sep 2012 08:51:43)

Re: Hi! new to this site

Hi,
If I may,may I ask the following questions to help me understand more about your husband's situation. I am not a doctor, I am just an older patient(63) who have the same disease of your husband for 39 months.

1.Can you tell me what chemo agents in the 14 chemo are? Is it Gemzar and cisplatin? and how big are the tumors now.
2.Is it the Liver surgeon(not  the general GI doctors in the hospital) who told your husband could not have the liver resection or the oncologist or radiologist? and why?

In general, If the sizes of the tumors are <3cm and less than 3 or 4 tumors;and if they are in reachable locations; RFA(radiofrequency ablation) first and chemoembolization performing  at the same time as one procedure and hospital stay one night over will be the best option. for the large one like the tennis ball( about 8cm in size),chemoembolization with adriamycin,
cisplatin and mitomycin in suspension injected directly into the liver tumor via angiography while you are half sleep is the best choice if you want to go this route. I reserve my opinion on the suggestion use of radioembolization for your husband until they give you a satisfaction answer of why they want to use it instead of RFA and chemoembo and change of chemotherapy first..I am just afraid now every doctor wants to jump on the radioembo wagon and that may be the reason why?(see side effect and other related messages on the experience forum under the heading Radiation treatment and options on our message board.for radioembolization);
Check out the link below for further info.
http://www.hindawi.com/journals/ijso/2011/571261/


http://www.sirweb.org/news/newsPDF/fact … _sheet.pdf

http://www.cholangiocarcinoma.org/punbb … 367#p65367

Again I am not against radioemo,I just want patients and caregivers know that other options with similiar or better results can do the same job before trying the relatively new procedure. Radioembo will definitely has its place on the treatment of liver and CCA diseases in the future.
However, systemic chemotherapy is another choice;they can use other chemotherapy agents to treat your husband too.
I suspect your husband's tumors are located in different segments and lobes of the liver and thus radioembolization is the  procedure than RFA and chemoembo combined together.
But think twice before just accepting what the doctor said esp. the other tumors are <3cm and less than 3-4 in numbers.(RFA is as effective as resection if tumor sizes is<3 cm of each tumor and not more than 3-4 or 5  total in numbers of tumors-chemoembo right after RFA add  overall additional treatment enhancement) .Just make sure your husband has enough liver reserve left and the tumor burden ( all tumors combined together is not too much for the body to endure the hardship of chemoembo or radioembo.)
keep in touch and
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: Hi! new to this site

Hi Leslie,

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

I know what you mean about all of this being foreign territory to you at first and in the begining, we all have went through and felt like that too. But I do know that the more that you learn about everything then the better informed you will be when it comes to making decisions and stuff. And you are not alone any more, we are all here for you and know what you are going through. So please, come back here lots. Vent away if need be, shout and scream if it helps and if you have any questions as well, then you go right ahead and ask and we'll do our best to help in answering them.

I can't add anything much to what the others have said to you already. And I so agree with what they say about seeking further opinions from those experienced in treating patients with CC. Here is a link that may be of use to you, it is of the major treatment centres in the USA -

http://www.cholangiocarcinoma.org/major … enters.htm

Please keep coming back and let us know how everything goes. And know that we are here for you and we care.

My best wishes to you and Scott,

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: Hi! new to this site

Dear Leslie,

Wellcome. I am, also like you, a new member of this family here.
My husband, Guy (55 years old), was receiving radioembolisation with the product Yttrium 90 microspheres (SIRT) this year in january. His situation on that time was: primary tumor of about 6 cm diameter and a secondary very small tumor - both stable - and no matastasis. This result was achieved durring the treatment with Gemcitabine/ Cisplatin. But... Is always a "but". So, but our pr. dr. was saying to us that it is the time to try SIRT because the Gem/Cis seemed to not work anymore and Guy is at this stage a good candidate for SIRT. So we did it. After SIRT, at the begining of March this year we had the MRI scanning and it showed that SIRT didn't work what so ever so he was puted on treatment with 5 - FU Leucovorin ( he had 6 times transfusions of this regimen)- wich also didn't work at all. Now, he is in a very poor state and he is in the hospital with severe anemia and also ascites and also a Cellulitis infection. His bone marrow may be also affected, cause it seems that his anemia is getting worst and worst, day by day.

But what it is more important for you from my story here is that - FOR MY HUSBAND - radioembolization didn't work at all and also caused damage of the near healty tissues, fallowed by liquage and building up fluid. Our team of proffesors were arriving, on this fryday - and they validated a report-  to the conclusion that SIRT in january, combined with tumor progression after SIRT and 5-FU not working, is the cause of the poor state in wich Guy is today.

But, please, remember that this experience of ours it is just ours and for your husband may work. Anyway, a second opinion before deciding what to do i will recomand with all my heart, because i am really sorry now that i didn't asked.

With alot of hope for you,
Liliana from Belgium

PS: Please allowe me that this is also an update in my Guy's case also for everyone in our family here.

God bless you all

Re: Hi! new to this site

Dear Liliana I am so very sorry that Guy is not feeling better! pLEASE DO NOT LOOK BACK AT WHAT YOU COULD HAVE, SHOULD HAVE DONE! It serves no purpose. We were all new to this horrible  monster in our beginnings and we did the best we could for a rare Cancer that knows no boundries! It seems to have a life of it's own and we just don't know why. Please don't be so hard on yourself, we do the best we can with what we have to work with. You sound like a loving, wonderful wife, caretaker and advocate.  We have kind of a rule here and that is to be kind to ourselves too! Thinking of you and Guy daily and hope to see some improvement soon.

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: Hi! new to this site

Leslie-Welcome and sorry you had to find us, I am a CC survivor, 3 years, 4 months cancer free! Please read my story on my FB page (Catherine Sims Dunnagan) it is full of HOPE.
My family lives in NE, (Papillion and La Vista) and the Univeristy of Nebraska saved my mom's life when diagnosed with non-hodgkins lymphona, 2 other oncologist told her to get her affairs in order. Our miracle worker there was Dr. Voss, which turns out she was one of the top docs for this cancer.
My hero and miracle workder was Dr. William Chapman at Barnes-Jewish Hospital St. Louis MO.
I can't add much to what all are telling you, and just reinforce how important it is to be treated at a major hospital with trials and expierence in CC.
Please contact me if I or my family can help.
Lots of prayers and HOPE-Cathy

10 (edited by PCL1029 Mon, 17 Sep 2012 09:17:13)

Re: Hi! new to this site

Hi, Leslie,
I just add another article( the 1st linked article) to the message that I had wrote earlier and revised the 3rd link to add to the content .
2nd opinion is recommended and the best place that near you is Chicago ,the interventional radiology dept. at Northwestern University . They are the pioneers of radioembolization.
( please remember the technique and experience of such procedure required experienced hands to do the job.)
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.