looking for solution
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Dear Mojgan, I am so very sorry about your Mother but know she is at a beautiful Peace now. Also know that I am sure she was very proud of you, you are a good son.
Those we love must someday pass beyond our present sight
Hi,
Mojgan,
I am so sorry at the loss of you mother. I wish thing could be different..
And thank you so much to let me know so soon, I deeply appreciated your friendship.
Sometimes God works things differently than humans because His plan is much perfect than ours. You and you brothers and sisters should feel very proud of you and ESP. You.you reach out from Iran to find info.to
help your mother.You are awesome,may be some day,when our two country rebuild good relationship.I can visit you and you siblings and say a few words or prayer to let your mom know how proud of her to have such nice kids that can reach out to the star and touch someone’life and make a difference across the world.May God’ grace,love;Christ’ joyful spirit,andThe Holy Spirit guidance and mercy be with you always no matter where you are.
Regards,
Percy.
If you don’t mind,I will put you message about your mom passing on th cholangiocarcinoma.org
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On Oct 29, 2011, at 4:22 AM, Mojgan Bordbar> Dear Percy
>
> thank you for all of your advises
> you encouraged me to do whatever needed, I’m sorry to tell you nothing is needed to do anymore
> my mother passed away last week
> it was harsh time for me. I never loosed my hope till last day, I did not like to accept doctors’ words as they wanted to aware me about what is happening.
>
> I’d like to have your words furthermore
> god bless
> yours
> MojganHi,mojgan,
You know I am not a doctor but just a patient.
Well,I almost miss your message today;so if you want to,you,like others, can always send me an email thru this web site by clicking the ” e mail” sign just under PCL1029,and they will forward it to me. In this way,I will not miss your questions if you want to direct them to me.
How is her health in general?Diabetics,high blood pressure etc. Was your mom seen by an oncologist as I suggested to you before and what did the doctor say,? For ductal Hilar CC ,capecitabine by mouth or 5FU given by IV with gemcitabine may be a better choice than gemcitabine & cisplatin.
Radiotherapy such as PDT with or without chemotherapy are acceptable options.These are all the factors that will affect the outcome of your mom’s treatment plans. Did they have a final stage diagnosis ? (ie: Hilar, stageII or III?) and is it really metastasized to the stomach instead of the abdomen like the omentum.
Most people confuse the abdomen with the stomach.I asked one of my medical colleague who is a surgeon and he is from Tehran;He told me Cat Scan and MRI are very common radiation procedures and if you are not sure, go to the hospital that is affiliated with the university and you should not have problem for your mom to get in for the procedure.
I think only the surgeon can give you an answer about the safety to REMOVAL the metal stent by surgery and its prognosis after the removal.
Usually metal stents may not be removable.As Marion said ,plastic stents eventually develop occlusion by sludge and/or bacterial biofilm, & maintaining billiary drainage usually requires repeated endoscopic procedures like ERCP;or initially using percutaneous stents which are usually left to open drainage external to the body(ie:patient carry a little bag to collect the bile outside their body);However complications are more frequent (eg. bile leaks and bleeding) and prophylactic antibiotics such as Cipro to reduce infection are commonly used here in the States for long term palliation of obstructive jaundice after the first episode of cholangitis no matter the patient has metal or plastic stents..As a result most physicians prefer initial endoscopic attempt for drainage which is currently your mother has -an internal metal stent with a plastic stent inside.So all your mom needs now is going back to doctor and let them flush and clean out the sludge and get prophylactic antibiotics like ciprofloxicin or levofloxicin to prevent cholangitis .Anytime your mom has a fever ,take a couple of acetaminophen(650mg total/dose) or ibuprofen (600mg total/dose);after a couple hours,measure the temperature again, if condition is not improved,call the doctor right away so your mom can have IV antibiotics without delay in the hospital.This are the basic home care you can provide for your mom to help her before the infection takes hold on her.
Talk to the doctors and show your confidence and knowledge when you meet them.Try not to be talked down by the doctors. Ask questions.
I do not know about the cultures out in Iran,but I know one thing for sure, this is your mom and you have every right to ask and question the plan of treatment for your mom no matter where you are .
By the way, use liquid protein like ENSURE or Carnation breakfast drink or Boost
These are high calorie content liquid protein supplement that you can use for your mom;making smoothy with fresh fruit is always a good option.do not worry about being yellow,once the stents get clean,it will disappear. Good luck
Keep us inform.
God Bless.mojgan…..Metal stents are considered to be permanent, but they can be cleaned out when clogged with sludge. I am wondering: why are the physicians planning on removing the stent? Please, consult with a physician familiar with this disease. While attending a medical conference in Barcelona I had met several doctors from your country so I know that they are there. Please, make some calls and please, stay in touch.
All my best wishes,
MarionHi
my mom is again in hospital, as she was so weak and low blood, they are deciding may they can remove stent or not? however they informed me that it is in high risk as stent is stuck and may cause injury the duct or liver.
could you please inform me what is the best way to remove the stent, and how much injury would be risky for my mom’s health.
I want to know what shall we do now to remove her digestive problems because I think her bad condition is due to she can not digest foods,however we mix food and feed her with liquids, but nothing absorbs by her system (really I’m not specialist, this is just my guess). although she has no yellowish now.
please provide me with the best solution for this new condition.
waiting to receive your advice
thanks in advanceHi,
You mom need oncology consultation ASAP for chemo recommendation.
Chemotherapy can slow the progress of CC.Gemcitabline and cisplatin are two drugs that used in the states.
keep us inform.
God bless.Thank you so much for your comments PCL1029
we live in Tehran.
as she has mettalic stent they can not do MRCP anymore. I do not know about cat scan/ pet scan. but sonography showed metastatic in bile ducts and probability of stomach carcinoma.
as you told you have CC. shall I ask if any drug you take. really is there any drug to stop progress of CC?
I’ll try to follow your instructions for Scan and finding intervention radiologist and oncologist.
hope you health and prosperity
Mojgan1390Hi,
You are welcome.
May I ask where do your mom and you live?
1.If you can,the most important thing to do NOW for your mom is to schedule and have a “CAT SCAN with contrast agent of the chest,abdomen and pelvis” to get a completed picture of your mom’s current internal organ condition.(sonogram,do you mean ultrasound.? if so,then you really need CAT SCAN to make a better diagnosis for you mom.) ; A PET scan is even better at this point since your mom had the problem since last year.
Current medical articles indicated that patients,depend on their general medical condition, who are on biliary stent alone can extend their survival from 3-6 month to 16-21 months with PDT radiation.
2. Make an appointment to see BOTH an “intervention radiologist ” and an oncologist AFTER you get the CT scan result.GI specialists and surgeon cannot provide the current specialty oncology knowledge and that is why you need to bring your mom to see an good oncologist who know about cholangiocarcinoma (CC).(even a general oncologist may not completely familiar with CC,not to mention doctors in other specialty such as GI doctor.)
Keep us inform and if you wish,you can email me.
God bless.Keep in touch.
God bless.thank you lainy for your guide
PCL1029 , thank you so much for your detailed comments
diseases of my mom started by itching 14 months ago, first time it was wrong to visit skin specialist and other doctors, it took a few weeks to visit a Gastroenterology and Liver Disease specialist, so that by MRCP they detected Klatskin Tumor. doctors told us surgery is not possible (to remove the tumor). as her jaundice was progressed during those days and ptting stent did not apply first time, we urgently drained biles by a PCT specialist.
after that putting metallic stent done through an international conference (Uni) 11 months ago.
she went good healthy until 5 months ago that mom’s abdominal problems started. doctors told us the metallic stent is infectious and they could not remove it so they put another (plastic type) inside the pervious one, 2 months ago. but she did not become helthier.
really i did not refer to oncologist or chemotrapist or radiotherapist. I just consult Gastroenterology and Liver Disease specialist. I did not know the tumor would be spreaded as pathology test we did last year, did not show any malignant cells.
anyhow now the sono shows metastatic, causing low blood(anemia) , digestive problems and so on.
it would be appreciated to have your further help and advises
it is to mention we are not in USAHi,
I am not a doctor but a CC patient for 2years.
I believe ,based on the info your provided,the tumor has spread from the common bile duct to the liver ;depending on the location and size of the tumor spreading and the involvement of the portal vein and hepatic artery occlusion, and if it metastasized to other part of the body,the surgeons will not operated on the patient. Of course age and general health condition are also risk factors for considering treatment options .
Base on my estimate,your mom had the Klatskin tumors for at least 9 months;during this time,Had she had any CAT scan or MRI to follow her condition?Did she only has ultrasound and MRCP ? What specialty of the doctor was in charge of ordering these procedure? A GP or GI specialty doctor?
Did you mom has oncology consultation for the possibility of receiving chemo?
What specialty is the doctor who would not offer chemo and do you know why?
Is it the radiologist saying that you mom can have radiation but why still not finalized the radiology treatment plan?In general,systemic treatment (chemotherapy) is the choice of treatment if the tumor has metastasized and cannot be operated unless patient is not fitted for chemo (poor health condition,low blood count,other health issue etc.) ;PDT and/or chemo/radio embrolization and clinical trial are options depending on the outcome of the
If I were you, I will find out the answers of the above questions? If you don’t know the answers and or confused or .Get a 2ND OPINION from the medical institutions which specialized in CC treatment.(depend on where you live?)
East coast -John Hopkins;west coast-UCSF or MD Anderson(MDA) in Texas;mid west-Mayo clinics and down south MDA in Florida. There are other hospitals too but because of the limited info you provided,I will just recommend these.I my self is a CC patients,I look no different than other healthy persons at work,or on the street.Especially if the bile ducts are not completely blocked(intrahepatic CC);the patient looks pretty normal to the people who see the patient every day.The patient may feel tired a bit,but it does not indicated that the cholangiocarcinoma is not growing inside if patient received no treatment at all .(Stent is not a treatment for CC,it is a procedure only to keep the bile following)
Keep in touch.
God bless.Of course
I am so sorry but we are not doctors. We do have a listings of Hospitals on the Home Page and the best would be to send the results to John Hopkins or to Mayo Clinic in Rochester, MN. The doctors do not accept chemo all the time as the best results come from surgery. Call the hospital of your choice and ask them how to proceed in sending them the Test and Lab results. Good luck!
Thank you Lainy
Thank you Nancy
as her tumor was in central part of liver, surgery was not possible. doctors told me after putting metallic stent radiotherapy is possible. however due to her age (77) they did not accept to do that. doctors do not offer any chemotherapy.
Her doctor just said to take a high protein diet.
please tell me if I can send the medical tests (sono and reports) to consultants of this website, may they can guide me if there is the right solution .
I do not like to see her condition become worse.
thank you for your adviseHi Mojgan, Like Lainy I would suggest that you seek out a doctor who knows cholangiocarcinoma well. Find out if she is a canditate for surgery. Has she done any chemo? Wishing you all the best. Nancy
Hello Mojgan and welcome to our wonderful family. I am very sorry about your Mother and would like to know where she is being treated. The only suggestion I can make to you is for your Mother to see another Doctor for a 2nd opinion.
You can get copies of all her test results and LAB work and take it with you for another Doctor to read. Make sure if you do this that he is very experienced with Cholangiocarcinoma. All my best and please let us know what happens.Hi there
my mom was detected cholangiocarcinoma(KLATSKIN tumor) by MRCP last year.
they put mettalic stent in the bile duct, but after 6 months she faced digestive problems and fever & …
they could not remove the metal stent and put a palstic type inside the metallic one. however her digestive problems did not removed and she got worse, weak and very seak and infectious.
now the new sono showed metastatic. I want to find a solution to prevent or remove tumors.
could somebody please help me to find the right treatment for her.
many thanks for you good site
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