dad diagnosed with cc
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Hi,Wendy,
As always this is for your info. only.Consult specialists first before changing treatment plan is a must.
They have already found the source and switched the ABX to Tigercillin-Cluv. which is indiciated for biliary sepsis.so you are in good hands.
Keep Nexium or Protonix twice daily for a while or at least once a day even after discharged. I take Protonix once daily for at least six month to prevent GERD or to decrease the acid reflux which over the long period of time can make the inflammation of the digestive system worse and I do not want that.
Kepp us inform so we can help others too.
God bless.Hi PCL,
Sorry I wasnt able to respond soon..
My dad is in Chinese Gen Hosp.. From what i know he started with Meropenem as the antibiotic, Nexium for the internal bleeding + 2 other which i cannot remember the name.. The bleeding has stopped..
I might be giving brandnames instead of generic names..
Currently, the Meropenem was removed and replaced with Tigacyl… that is the only IV left.. plus tablets – Nexium, Fluimucil for the phlegm, potassium and he is having nebulizer too as he has cough.. we are taking herbal too – mushroom essence..
Theres a little swelling on arms and feet and bouncy, bloated stomach… and he eats very little too…doesnt feel like eating sometimes and probably doesnt taste good for him… we do give him soft foods..
And they re-did bloodwork on him before he started on the Tigacyl…
I’ll ask what is the source of the infection….Thank you for all your help and god bless…
Rgs/WendyHi,Wendy,
since I did not hear from you.this is what I may suggest and
As always,consult physicians is a must before any changes of treatment plans.Since I do not know about the origin (the bacteria)of the sepsis infection
they should do blood cultures on your dad and find it out by now.
“Hospital acquired pneumonia” is also a concern if your dad stayed in the ICU for too long.
For UNKNOWN origin of the sepsis in which patient are not neutropenic (low WBC),no hypotension ,febrile and not life threatening:
The primary antibiotics (ABX)are the carbapenems such as Ertapenem or Primaxin in addition to Vancomycin.If the source of sepsis is BILIARY (eg, from the stents),then the primary antibiotics will be piperacillin-taz (Zosyn)or ticarcillin-clav in the antipseudomonial penicillins group.Levaquin or Cipro plus metronidazole(Flagyl) or Cefotaxime plus metronidazole can be used as alternative to the primary.they all are given as IVPB.
Do not worry about the creatinin,the pharmacist should adjust the antibiotics dose based on the creatinin clearance of the patients daily.Even if the patient is on hemodialysis. so check the hospital out to see they have done the blood and urine culture and find out what bacterias are,then check what antibiotics they used and whether the doctors or pharmacist adjust the dose daily for the ABX. and then should be fine.
Taking care of the infection is the fist priority NOW. after your dad recover for sepsis as you mentioned or suspected;then choose your oncologists ,we will talk later about this.
BTW, please try to read the “the Ultra sound CT scan MRI and PET/CT” in our experience forum,this will provide you help in understanding FDG uptake
in PET/CT scan and know how to talk and understand the doctor’s comment about your dad. You dad is only stage II and young.You need a lot of knowledge to help him to fight the CC.
As I always say, knowledge,patience and courage are need on the long and winding journey to help your father to get well.
God bless.Hi,Wendy,
As always,this is for information purpose only;consult doctors first is a must
May I ask the name of the hospital your father is at now in Phillipines?
and what are the antibiotics and meds he is on now? I will go to bed soon but I will answer you if you give me the above info. within an hour. ok.
God bless.Hi PCL, i hope you are well and thanks for making the effort to do some calls…
I have 2 contacts that i got.. one is the Dr Thomas Yau Univ of HK that you mentioned and one is Dr Khei Siong Khoo at parkway cancer center at Gleneagles.. Dr Khoo response is that curative surgery is possible but have to be assessed as there are FDG changes in lung (not sure what is FDG)
Over the weekend, my dad had some complications again.. I travelled to Manila last minute over the weekend… He is on anti-biotics for the infection as he had chills with temp rising.. and also some medicine as he had internal bleeding.. the bleeding has stopped but the blood results are not good with these IV’s.. His creatinin is going up everyday and his WBC and platelets are also rising.. The doctor plan to stop as it is worsening the blood results.. So we really dont know.. We are letting my dad take some herbal medicines too..
I will still contact Dr Yau on what he says too…I really dont know what to do.. Is there any other way to prevent sepsis without use of antibiotics?
Rgs/Wendy
Hi Kat,
Welcome to the site. So sorry that you had to find us all but am glad that you have joined in with us all. I am absolutely stunned to hear that your dad and his 3 brothers have all been affected by this cancer, I really do not know what to say to that. I can’t really add anything what PCL has said to you about questions to ask, and I aslo strongly agree with what you have been told re getting a second opinion for your dad.
That is good though to hear that your dad is feeling a bit better now that he has the drain and stent in and they are working as they should. My dad felt so much better once he has his stent in and it was working. He had a metal stent inserted, do you know what type your dad has, metal or plastic?
Please keep coming back here and let us know how your dad is doing. And please feel free to ask any questions that you have and we will all do what we can to help in answering them. None of us are doctors, but we know what you are going through and we care.
My best wishes to you and your dad,
Gavin
Dear KAT11 welcome to our wonderful family but sorry you had to join us. I have never heard of 4 people in one family to have this Cancer! Wow, that is mind boggling! I too would ask you many of the same questions PCL asked so will wait for your answers to him. I am wondering why they are not doing surgery as it is the only sure cure. Try to read up as much as you can as to be forwarned is the best way to fight CC. We are big believers in 2nd and 3rd opinions and attitude is extremely important. Stay strong and please keep us posted. Oh, as a suggestion you may want to re post your Introductions under the Introduction Tab as I am afraid this may get lost in this long thread.
Hi,Kat11,
I am not a doctor ,I am just a patient like your father having CC.Below are for your information only ; It is a must to consult doctor before even taking supplements while on chemo treatment.
if I may ask,where is your dad lives now? In the States ? What is the exact diagnosis stage2, 3 ? What is your father’s occupation?Were 4 brothers working for the same company? and where were they live when they were young and together?
What do you mean your father”Although he has always had trouble with it”?
There are radiation options for extrahepatic cholangiocarcinoma(CC) like Hilar Klatskin,distal CC besides chemo.and you may talk to your oncologist about it.Most of the doctors may not even heard about this disease,not to mention about the treatments if the tumor is ductal or intrahepatic,radiation is another option if not contraindicated because of patient’s condition.
Gemzar will control the cancer but is not for cure. the side effects of Gemzar is minimum compare to other chemo.Most of the patient on Gemzar can even go back to work while on it. It may cause some nausea and vomiting but your doctor should give him some medications like Zofran ODT and it will take care of the problem.I was on Gemzar for 14 months without any serious side effects.
I STRONGLY suggest for a 2nd surgical opinion to see why or why not he cannot have surgery now,you need to consult a cardiologist for that if you live in the States. It is also a good idea to get a 2nd opinion on oncology.
Do not worry,your father will be fine,The way I handle my disease is to treat this cancer as a chronic disease like hypertension ;(I had 2 resections in 2 years and just back from the hospital) and if you think the same way,your will feel better and will have more energy to help your father in a more positive way.
I will not be surprised there will be a couple more effective treatments to treat CC coming out in the next 3-5 years.
Please keep us informed and if you can tell me a bit more about the 3 brothers of your dad,what age they died? and where and how did they get the same diagnosis of bile duct cancer? Are they all have the same diagnosis of extra or intrahepatic bile duct cancer? Were they chronic hepatitis B carriers? or Were they all working in the auto,rubber(tires),chemical(plastics,asbestos) or wood-finishing industries for a while?Were they like drinking a bit and smoking when all the brothers were together having fun?Did they like to eat seafood and esp.shellfish like clams,crab,shrimps ,oyster etc? Were all 4 brothers like to swim in the 1950s-1970 ?and where were they swimming? any one of the brothers had TB and require treatment of of Isoniazid?
I appreciated your help in answering the above;it will help us to understand why 4 brothers have this rare form of cancer. and in return I may find out some answers to prevent you and your family to have the same fate.For checking out “side effects” start with our web site,look under the experience forum “side effects” ;
For nutrition help check under the Nutrition subtitle or check out the “alternative treatment” in the experience forum.
It won’t hurt to take multivitamins with Coenzyme Q10 and selenium etc(ie:Theragram-M premier 50 plus or any generic multivitamin should be fine);milk thistle 1000mg,Maitake mushroom extract are among a few of items that you can consider.Additional info.
Fish,soy milk,tofu,beans are good source of protein;
Fruits like blueberries,banana,orange,mango and papaya,pineapple are good source of antioxidant and vitamins.
Garlic,brussels spouts and cabbage are good vegetable choice .
Practicing Yoga,Qigong meditation;walking for 30min daily are good for your dad’s circulation and immune system. do not smoke and drink lightly.
God bless.Hey, my dad was also diagnosed and is going through all of that as we speak. He has a tumor in his bile duct and has not affected his liver yet, although he has always had trouble with it. His first chemo (gemcitabine) was last thursday, and this thursday will be his second… It is early but his heart is very weak and couldn’t possibly stand an operation we were told. He had a drainage put in to get the bile out and put in a stent, he’s been doing way better. He gained a few pounds thankfully….he had dropped down to 124pounds (he’s 68 but didn’t look like it until now…). I don’t know where to look for things that might help….right now he’s ok, but I’m just terrified that one day he’s just going to have a zillion side effects…. Also I’m said that they keep saying there’s no other course of treatment and that the chemo definitely won’t cure him. I would like to know about supplements or foods that can help treatments and the inhibition of the cancer….if there is any.
He has had 3 brothers die of this cancer, they were caught way too late… So from those experiences we didn’t really learn…
Hi,Wen888,
I am not a doctor, I am a patient just had my 2nd resection three weeks ago ,still weak but ok. I mentioned Hong Kong Cancer Centre was that if you want to go Guangzhou for treatment,most likely you will go thru Hong Kong first to get there.But your sister’s suggestion to go to Singapore (SG)hospitals is even a better choice,The reason why is simple,I have a few of the middle class friends,after hearing I had CC 2 years ago,they started going to SG for ultrasound and blood work physicals and they told me they had good opinions about SG hospitals experience.Since they are private hospitals, they can arrange and diagnose you the day after your landing,they do everything in the same place and they will even book hotels for you and your family to stay nearby,usually 4 days and you will get the result when you fly home.They are not expensive as I was told (ie: the ultrasound of the liver is about SG 150.But you can ask them roughly how much of CTscan or MRI cost and to get an estimate.)
I made a couple calls and found Gleneagle medical centre and Mt. Elburn Hospital,both are private hospitals;you should google them to find out whether they have hepatobiliary or liver surgery specialty , then go from there.
And just in case ,I got a doctor’s name for you to start. Her name is Dr.Susan Lim from Gleneagle medical centre .(I don’t know her, my friend Lydia Mchman recommended her .Lydia’s husband was the 2nd secretary of the Canada counsulate in SG but he retired recently.)Dr. Lim’s number is 011-65-6475-7133,she is not a liver specialist but she is very good,I was told the queens of the nearby little Asian countries see her for breast cancer,liver and pancreas . I don’t think she is a hepatobiliary or liver surgeon. But it won’t hurt to see her first and she will refer you if she think your case is out of her specialty. Start to do research now and call them asap, you may be lucky if you can see her next week and get to whole thing resolved.
Again remember what I said, “I have no comment for Guangzhou’s treatment” and you should know what I mean. Among the three countries medical centres you mentioned,I will choose Singapore without a 2nd thought if your local Phillipines hospitals cannot satisfied your need,
I hope the info. helps
and remember to share your stories with us so that we can learn from you and help the others in the future.
God bless.@Lainy , thanks.. I will call Dr Gores office again tomorrow to follow up, and hopefully I can get information.. Take care….
Hi PCL1029, where are you based?
Thanks for the info.. I saw this on the website and emailed the doctor you mentioned from HK
http://www0.hku.hk/medicine/staff_personal_Yau%20CC%20Thomas.htm
and my sister also mentioned Parkway Cancer Center in Singapore; so i also emailed the doctor
http://www.parkwaycancercentre.com/about/specialists/dr-khoo-kei-siongTake Care/Wendy
I agree with the above. Please, continue to do as you have, but only with adequate rest time in between. We need you to be well.
All my best,
Marion
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