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

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

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/facts/Liver_Cancer_fact_sheet.pdf

http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=65367#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.

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