From Spain, help!
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Hi Jose,
My husband was diagnosed Stage IV ICC in August ’08. He had a large mass in his liver which the surgeon was going to remove. During the surgery, the surgeon called me from the operating room and said they were dealing with more than he had anticipated. They ended up removing John’s right kidney, gallbladder, part of colon, some of his stomach cavity and over 70 percent of his liver. His tumor was the size of a softball. In March ’09, the part of the liver that hadn’t been removed presented with multiple tumors. He has been on several different chemo cocktails since then. A month ago, he went to see if he would be a candidate for radioembolization. He was not because there was too much leakage into his stomach. He did have the chemoembolization on February 23rd but we won’t know if it worked until he has scans later this month. We’re hoping for the best.
Just as everyone else has said, there is always hope. Tell your sister to stay positive as I believe attitude plays a big role in responding to this cancer. Your sister is still young and if she was in good health prior to the CC, her chances of tolerating the chemo are much better. I will keep her in my prayers, and she is so lucky to have a brother like you who is fighting along beside her. Sending well wishes your way, PeggyP
marions wrote:Jose…not all physicians use Paracentesis (the removal and of fluid from the abdomen with a needle) for palliative purposes however; those institutions focusing on hepatobiliary disease most likely will be do so. This is whom I would contact.
Hugs
MarionThanks Marion. However, this point worries me. We are going to ask the doctors why they chose not to remove the fluid of the abdomen. She is back to the hospital shortly for another chemo. She is crying and suffering altough I think she is tolerating well the side effects.
Hugs
JoseLalupes wrote:Welcome to this wonderful site, Jose. My thoughts are with you and your sister. My lovely sister has cc, too. She was diagnosed in August 2009 and is still doing well in March 2012. She has been told her cc is not behaving the way they expected it to. I hope your sister proves her doctors wrong, too. Please don’t listen to “life expectancies”; as Lainy says, absolutely no one knows.My best to you both
JuliaAll my best for you and your sister as well. We are feeling more positive now. Thank you very much
Josehollandg wrote:Jose
I also wish to welcome you to this site and to echo what everyone here has advised you. You are doing all the right things by getting 2nd and 3rd opinions and learning everything there is to know about CC. Most of all you are there to support and be an advocate for your sister.Good luck
Gerry
Thank you very much Gerry, finding this discussiong is really helping me. I feel a bit more optimistic but always realistic. I think this is the adequate balance.
Welcome to this wonderful site, Jose. My thoughts are with you and your sister. My lovely sister has cc, too. She was diagnosed in August 2009 and is still doing well in March 2012. She has been told her cc is not behaving the way they expected it to. I hope your sister proves her doctors wrong, too. Please don’t listen to “life expectancies”; as Lainy says, absolutely no one knows.
My best to you both
JuliaJose…not all physicians use Paracentesis (the removal and of fluid from the abdomen with a needle) for palliative purposes however; those institutions focusing on hepatobiliary disease most likely will be do so. This is whom I would contact.
Hugs
MarionJose
I also wish to welcome you to this site and to echo what everyone here has advised you. You are doing all the right things by getting 2nd and 3rd opinions and learning everything there is to know about CC. Most of all you are there to support and be an advocate for your sister.Good luck
Gerry
Pamela wrote:Dear Jose,As long as your sister is living, there is always hope. I have a daughter who is only 25 and has CC. I promised her I will do everything to help her and never give up hope that one day she will be cured. I hope you will do the same for your dear sister. My Lauren has intrahepatic CC with a large tumor on one side of her liver and five small tumors on the left. She has had twelve rounds of chemo and has seen a lot of shrinkage in her tumors. We hope one day that she will be able to have surgery. Please keep thinking positive thoughts and welcome to the site. I hope we can help you. Take care.
-Pam
Dear Pam, thanks for your support. It’s a great news that tumors of your daughter are shrinking. I hope the same happens to my sister. All my best wishes to you. Jose
PCL1029 wrote:Hi,
The swollen abdomen are fluids accumulate due to the bile duct in the liver cannot function normally .the medical term is ascites. It is a simple procedure and It can be relieved by inserting a needle and withdraw the fluids out by a doctor in the hospital up to 20 liters in volume without major side effect. .in addition, the doc will prescribe diuretics like furOsemide and Aldactone to decrease and control the symptoms.
GEMOX+cetuximab is a powerful chemo that combined two chemo agents and the newer anti-cancer agent call molecularly targeted agent (cetuximab).
The good thing is your sister is young so she can tolerate the combo treatment better than others. You should expect her to develope skin rashes ,but this is actually an indication of the drug is working well.Try to read more about this treatment combo under our discussion forum title “Chemotherapy”; to learn more about it.
If have questions,please feel free to ask us.
God bless.Thank you very much. This information is really useful. I don’t understand why doctors did not use a needle to reduce her tummy. This swallon abdomen is affecting her psychology, thinking that she is worse.
Dear Jose,
As long as your sister is living, there is always hope. I have a daughter who is only 25 and has CC. I promised her I will do everything to help her and never give up hope that one day she will be cured. I hope you will do the same for your dear sister. My Lauren has intrahepatic CC with a large tumor on one side of her liver and five small tumors on the left. She has had twelve rounds of chemo and has seen a lot of shrinkage in her tumors. We hope one day that she will be able to have surgery. Please keep thinking positive thoughts and welcome to the site. I hope we can help you. Take care.
-Pam
Hi,
The swollen abdomen are fluids accumulate due to the bile duct in the liver cannot function normally .the medical term is ascites. It is a simple procedure and It can be relieved by inserting a needle and withdraw the fluids out by a doctor in the hospital up to 20 liters in volume without major side effect. .in addition, the doc will prescribe diuretics like furOsemide and Aldactone to decrease and control the symptoms.
GEMOX+cetuximab is a powerful chemo that combined two chemo agents and the newer anti-cancer agent call molecularly targeted agent (cetuximab).
The good thing is your sister is young so she can tolerate the combo treatment better than others. You should expect her to develope skin rashes ,but this is actually an indication of the drug is working well.Try to read more about this treatment combo under our discussion forum title “Chemotherapy”; to learn more about it.
If have questions,please feel free to ask us.
God bless.Lainy wrote:Jose, you have done and are doing all the right things. Please don’t listen to “life expectency” as we were not born with expiration dates on the bottom of our feet. We have MANY here who have out lived what the Doctors predicted. I alway say we try to remain optimistically realistic. Please keep us updated as we truly care.Thanks a lot for your support this discussion board is really helping me a lot.
Dear PCL1029
Thank you very much for your reply. My sister has received just one dosage (or “cicle”) of GEMOX ( Gdmcitabina + Oxaliplatino ). Doctors are considering to try another component called CETUXIMAB.
Your post has really really helped us to feel better. We are now expecting the results of her first chemotherapy. Its suppouse she will take the second next week. She is fine with secundary effects but what worries me is that she has a swollen abdomen. I know this is as a result of a disfunction in her liver and I wonder to what extend chemotherapy might help to reduce it.
Thanks for you help
JoseHi, Jose,
First, your sister is only 49 years old therefore the age risk factor (<65) is on her side; that means she will have a much better chance to tolerate the chemo agents and the side effects of the chemotherapy treatment that comes with it.BTW,can you tell us what chemo she is on now?Palliative care is not a death sentence;it is just a medical term referring to the stages of a treatment plan. Even if your sister is in this stage of the treatment plan, chemotherapy may provide shrinkage of the tumor and the lymph nodes may even disappear and the whole situation will be changed if the chemotherapy is effective.
since I am not a doctor and only a patient like your sister and do not have the details of your sister CCA image scan record; I cannot provide more specific help to you at this point.
But in general, for intrahepatic CCA,that is the cancer is originated in the bile ducts of the liver ;if there are metastasis like lymph nodes involvement out side the liver, chemotherapy and molecularly targeted agents are the choice of systemic treatment.But I know in the States, resection of the liver along with the removal of the affected lymph nodes can be performed also if it is not contraindicated to the outcome of the treatment.
2nd opinion from a liver specialist, an interventional radiologist and medical oncologist from the best medical institution(usually a hospital affiliated with the best university) is highly desirable for your sister.Chemoembolization and radioembolization may be also considered if the tumor is too large but the tumor burden is within limits of the protocol.
If the tumor or tumors are small(ie: Yes, there is always hope in treating this cancer and I think positive thinking is one of the most important ingredients in fighting this cancer.
Praying has been proven useful in studies and will provide the inner peace that help both of the patient and the caregiver like you and will give you the mind set and calmness to prepare for this long and winging journey of this disease.
God bless.
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