My mom recently diagnosed as unresectable metastatic cholangiocarc.
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November 28, 2011 at 11:34 pm #55156fatema-alzahraaMember
Hi.thanks Percy, marions and Lainys for your advice, i already consulted several oncologists from the university hospital and her treating physician is a professor in university hospital but i’m sorry to say that they are considering her case as in late stage, regarding centers caring about cholangiocarcinoma cases unfortunately we don’t have a specialized centers here, all are oncology centers. I’ll never accept that she is a late case i consider that only she needs treatment and i’m trusting GOD and that he will cure her although i can’t be strong all the time but i’m trying.
I want to share you my mom’s first day in chemotherapy she received oxaliplatin (80mg/m2) and Gemzar (1000mg/m2) today but she had severe terrible pain once they connected gemzar into her cannula my mother cried much and it was awful 30 min., the doctor said that gemzar doesn’t cause pain!!!! in addition to pain minimal rash appeared on her forearm, pain decreased after that but she still complain of hyperthesia at site of injection,
another complain is hyperthesia in her tongue once any fluid espicially “cold” comes in contact with it. Could any one help me in understanding those complaints?
Thanks.November 27, 2011 at 9:53 pm #55155lainySpectatorDear Fatemah, welcome to our wonderful family of the most courageous and caring people in the world. I am very sorry you had to find us but you are the best advocate your Mother could have. My suggestion at this point is also to get another opinions as we heavily support 2nd and 3rd opinions. I am sending you the best wishes and prayers for your Mother and please do keep us posted.
November 27, 2011 at 7:42 pm #55154marionsModeratorFatema……I am sorry to hear of your Mom’s diagnoses with Cholangiocarcinoma. This cancer sneaks up on us and frequently does not present symptoms until late stage disease
I agree with Percy in that you should obtain another medical opinion from a center treating a high volume of Cholangiocarcinoma patients. My immediate thought is a center in Italy and I have contacted a physician in order to obtain the name of a specialist in Italy. As soon as I receive a response I will then forward it to you.
Regarding the bone metastases you might want to inquire about Intensity-Modulated Radiation Therapy (IMRT) or Percutaneous Image-guided Cryoablation. Both procedures have shown benefits to members on our site.
I realize how shocking the thought of palliative care comes to you. I believe that most of us have similar feelings, but it is important to remember that palliative care does not exclude possible curative treatments in addition to providing the best quality of life for people facing the pain, symptoms and stresses of a serious illness.You are a wonderful advocate for your Mom and she must be so very proud of you. And, please remember that people’s responses to treatments vary greatly and don’t give up on hope. Your Mom may show excellent results to the proposed GEMOX chemotherapy. Good luck and please, stay in touch. We care.
All my best wishes,
MarionNovember 27, 2011 at 6:49 pm #55153pcl1029MemberHi,
one more thing, since your are a doctor,try to use your connections with your peers,they may provide you 2nd or 3rd opinions to help you especially if you are a physician affiliate with a big hospital.
I got all mine 2nd and 3rd opinions from the radiologists,GI specialists,GI surgeons and oncologists.
I think you should get a 2nd opinion on oncology consult now to prepare for the next step. eg to have the chance to use the targeted agent along with the current one;try the university hospitals that have a large oncologists population or/and the best of all ,research and get one that specialized in cholangiocarcinoma.
good luck and
God bless.
time is the essence.November 27, 2011 at 5:15 pm #55152pcl1029MemberHi,
Based on what your wrote,your mom’ CC have been spread on both lobes and front and back sides of the liver.
I also take a look at your link for SRFA,which is not much different the percutaneous RFA that I had about six months ago except it may be more precise for the location. (ie:they use the same needle-electrodes to burn off the tumors like RFA (see the study list at the bottom of this email.)I think it is difficult for you mom to have SRFA or RFA based on the multiple extent of the tumors involvement of the liver.
Current NCCN guidelines for metastatic CC included:
Gemcitabine/cisplatin;
Clinical trials at most of the big cancer centers in the US,may be some at Italy and UK.(most of the trials have molecularly targeted agent add to the current 5FU or gemcitabine 1st-line therapy)
5FU based or other gemcitabine based regimen
and finally supportive care in that order.Your mom is only 57 years old, so the age factor is on her side;make sure she eats well and use Ensure or other protein liquid supplement to increase her energy to fight the cancer.(I took 1-2 bottles/day(about 350-700 calories total in addition to my regular diet;I took multivitamins for adults 1-2 tab/day;I drink at least 6-8 glasses of liquid-about 2000-2400ml/day for hydration and mostly I eat fruits and vegetables,soy beans products like TO-FU ; try to sleep for at least 8hrs starting no later 10pm.)these are things we can do for ourselves.
At this point,I will follow your oncologist recommendation to start the GEMOX treatment and will follow with PET/CT in 2 months to check on the progress.
Currently GEMOX+cetuximab has the highest objective response rate(63%)but the long term outcome such as OS and PFS were not reported.further study of this combination is warrented.
(you can read my messages on the expericnce forum about the PET/CT and chemotherapy as well as the management of the side effects.)
And if you like ,you can always,like others, write to me via emails thru this web site by clicking my email address under my ID PCL1029.
Below are a few of the chemotherapy currently used without the molecularly target agents.
Chemotherapy such as GEMOX; ECF regimen of epirubin+cisplatin+infusional 5FU); GEMCAP(gemzar+capecitabine)Gemcitabine+irinotecan;Oxaliplatin+capecitabine to name a few.Stereotactic radiofrequency ablation.
Bale R, Widmann G, Haidu M.
SourceDepartment for Microinvasive Therapy (SIP), Medical University Innsbruck, Anichstr. 35 6020, Innsbruck, Austria.
Abstract
PURPOSE:To describe the technique of percutaneous stereotactic radiofrequency ablation (SRFA) and its application in a patient with an unresectable multifocal intrahepatic cholangiocarcinoma (ICC).
MATERIALS AND METHODS:A 72-year-old man presented with two nodules of an ICC with a maximum diameter of 10 and 4 cm, respectively. To produce overlapping ablation areas and cover the entire tumor volume, 18 paths for the placement of radiofrequency ablation (RFA) probes at multiple locations were planned on 2D and 3D reconstructions of the computed tomographic (CT) data. The 15-gauge coaxial needles were advanced through the aiming device to the preplanned depth. A control CT fused to the planning CT data confirmed correct needle placements. RFA was performed with an impedance-based multiple-electrode RFA system. Fusion of the contrast-enhanced control CT with the planning CT showed an appropriate zone of ablation.
RESULTS:Besides a mild asymptomatic pleural effusion, no complications occurred. Twenty-seven months after the first RFA, two new small distant liver metastases were successfully treated by SRFA. Currently, 38 months after diagnosis and 36 months after the first SRFA, the patient is free of detectable disease.
CONCLUSION:
SRFA seems to offer an effective treatment option in selected patients with even unresectable ICC.
Keep in touch and
God bless.November 27, 2011 at 4:02 pm #55151fatema-alzahraaMemberThanks Pamela for your support and sorry to hear about your daughter, i wish ALLAH will cure mum and your daughter too.
Thanks PCL1029 for your concern, my mother is 57 years old, thanks GOD she is in good health apart from back pain due to metastasis and ofcourse she is psychologically affected, in the triphasic CT liver it revealed multicentric mass-forming cholangiocarcinoma with (large infiltrative mass lesion involving segments IV and VIII and partially extending to segments I and II with multiple smaller lesions studded in all segments) with nodal ( celiac, para aortic and retro-crural) and osseus deposits
the malignancy was discovered on 25th october and final diagnosis was on 20/11/2011 , do u think she will be suitable for radiation?? do u have any idea about stereotactic radiofrequency ablation (http://www.ncbi.nlm.nih.gov/pubmed/22006031)
do u have any idea about the combinations u mentioned? are they applicable in the states , even if they are still under trial? could i get them in Egypt if they are not available? according to my knowledge Tarceva (Erlotinib) only is available in Egypt.
please if there is any hope even if it will be outside Egypt please help me, again thanks for your support and wish u and my mom get well soon.November 27, 2011 at 3:43 pm #55150pcl1029MemberHi,
Sorry to hear the news,I am a patient as well for 30 month now. But if you can tell me a bit about more about your mom,I can try to answer your question better.
1. When is the Dx.made?
2. Where is the rumor located? Left,rifght or the caUdate lobe and which segment? Posterior or anterior?
3. How big is/are the rumors? And how many or just one big one?
The above are related to whether your mom can have radiation procedures here in the State such aschemoembo,radioembrolization with Y 90,RFA SBRT etc.
4. How old is your mom? Is she in relatively good health or have other issues?
In the meantime ,I will look up the chemo like GEMOX with molecularly targeted agents combo. I know for sure GEMOX+Avastin,GEMOX+cetuximab and Tarceva and sorafenib had been used together.But most are in clinical trial setting and may be that is why your oncologist hesitated to try.
Most of the time,whenCC have metastasized to other organs,surgeons will not do resection to remove the tumor and systemic chemo is the choice of treatment.
More recently interventional radiation provided an other option to combat this horrible disease.
Please feel free to ask questions, and in the meantime try to relax and concentrate your energy on finding the best treatment options,if available,for your mom.
God blessNovember 27, 2011 at 3:19 pm #55149pamelaSpectatorDear Fatema,
I am very sorry to hear about your dear Mother. I do not have much knowledge on different treatments, but I am sure someone will fill you in soon. You came to the right place. What I can do is offer you a compassionate ear that will listen. My daughter suffers from this disease. I am scared every day for the future too. You will never feel alone when you visit this site. Continue to visit and read other’s posts. I find great comfort here and I hope you will too. All my best wishes for you and your Mother.-Pam
November 27, 2011 at 2:34 pm #5976fatema-alzahraaMemberHello every body, i’m a physician from Egypt my mother have been recently diagnosed as unresectable metastatic intrahepatic cholangiocarcinoma, we accidentally discovered that during lumbosacral MRI after 3 months of low bach pain which i thought it was just sciatica but MRI revealed metastases in vertebrae we went into alot of investigations which finally revealed large mass forming cholangiocarcinoma with bone and nodal metastases, i’m really shocked i still can’t believe that my mother has a malignancy, i don’t know what to do?? Unfortunately in Egypt most doctors said we will give palliative therapy really i hate this word (although i’m a physician but i can’t apply her on mom). Me and my family made our decision to trust that ALLAH is the only one who could cure her and we should do our best, she took radiotherapy with partial improvement of her pains and sh will start chemotherapy tomorrow (Gemzar/oxalliplatin) i’m afraid from side effects espicially bone marrow suppression, i’m so depressed because a radiotherapist told my dad today that there is no need to chemo as mostly it won’t work, i don’t know what to do??? i’m scared she is my lovely mom i wish i could do anything.
I asked her chemotherapist about targeted therapy (Tarceva) he told me that if we will use it we will omit oxalliplatin and he doesn’t think it will make such a difference!! i read a paper recently published about stereotactic radiofrequency ablation in unresectable cholangiocarcinoma but i don’t know if it will be available in Egypt??
Sorry for that long post but i’m really scared, could anybody help me here, if there is any possible treatment even if it is outside Egypt???
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