pcl1029

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Viewing 15 posts - 1,516 through 1,530 (of 1,667 total)
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  • pcl1029
    Member

    Hi,Lainy,
    You inspired me to write that message.
    Did you remember you went out with your brother to PF Chang for dinner?
    PF Chang is good but expensive.for less than 10% of the cost;5-10 minutes of your time you can cook chinese at home.It is easy, inexpensive and nutritional.
    SEE,Mama Lainy, you will never know what will come up when you say something about youself. Now your turn this web site into PBS station because
    now there is a new series called”PCL can cook,so can you”.—just kidding.
    God bless.

    in reply to: New member #51711
    pcl1029
    Member

    Hi,CG,
    Here are additional info. you may want to know;
    Again this is for information purposes only.

    1. If you can have resection that will be the first choice if I were you.
    2. Orthotopic Liver Transplantation (OLT) based on Mayo clinic data has a five-year survival rate of 82% for selected CC patients who had unresectable CC and a history of primary sclerosing cholangitis.(PSC).And if your tumor can be resected as what is appeared to be the course of treatment at JH now;I will continue the treatment at JH till the next CT scan or MRI result;the reason is that if your liver can be resected you may not be qualified for OLT. and there are lots of test and waiting before the actual transplantation take place.By that time you may miss the opportunity of resection at JH.
    ” Liver transplantation has a poor outcome for patients with intrahepatic cholangiocarcinoma and is generally not recommended unless in the context of an approved trial protocol.”–Apr.2011 vol.8 Gastroenterology & Hepatology by T. patel.
    OLT has a better outcome when it was done on early stage of unresectable hilar CC after neoadjuvant chemo therapy. and recurrence is common in both groups.
    God bless.

    in reply to: New member #51709
    pcl1029
    Member

    HI,
    If I may ask a few more questions so I can understand your CC better.

    I am not a doctor, I am just a patient so consult your specialists or doctors is a must before changing treatment plans.

    1.Why surgery is not offer at JH? What stage 2, or 3?just one big one and do you know what segment of the liver the tumor is on?

    2. I guest 6.2cm is not a really big tumor(you give just one dimension,normally is like 6.5cmx5cm), and if not metastasized ,resection and/or ablation is the current recommendation of the medical community in the States if the tumor is resectable .So find out why this is not offer to you first?

    3.From what I can read,it looks like JH wants to shrinks the tumor down to the acceptable size in order to provide a better clean and safe margin for a better outcome of the resection and that is nothing wrong with that.A MRI with contrast 3 month after your diagnosis is a good idea to check the progress of the JH treatment.go to the experience forum of this web site and look under “the ultra sound,CT scan and MRI and PET/CT” entry to UNDERSTAND each unique function,it will help you a lot to know what and why the doctors are ordered such test in the future.Trust me,it is very helpful to me.

    4.What systemic chemo they used in JH? can you name them for me?
    and what and how they “direct inject chemo agents to the tumor?” what is the procedure name? is it called chemoembolization(TACE)? it will help if you know the exact procedure names so I can provide you more info about your situation.

    5 .Is it because the tumor is so close to major organ,portal vein and major arteries that cannot offer resection first at JH? If you do not satisfy with the treatments provided and want more options now, I will suggest you to seek 2nd surgical opinions by.Dr.Chapman in St.Louise or Dr.Kato in NY.They both are well known for their surgical skills from what I heard from this board.
    God bless.

    pcl1029
    Member

    Hi,Gavin,
    No, thank you, you are the PIONEER of research and knowledge for this web site and if you insist,then I will be a Sgian-dubh on your left leg ,since I am left-handed.
    God bless.

    pcl1029
    Member

    Hi,Gavin,
    I learn a lot about the Scotland kilt from the web sits you suggested.
    I can understand it will be very hot especially the kilt made with the famous Scotland wool.
    BTW,I Love the wool sweaters from Scotland;boy, are they nice to wear in winter time.(well even as I speak,it is 96F in Chicago-hot hot hot) .
    Thanks for your info.
    God bless.

    in reply to: Hello Again Everyone #50971
    pcl1029
    Member

    Hi,Mari,
    sorry to hear your brother’s passing.
    If you can,please e mail or just answer WEN888 for me.(her’s is a just few entry above this entry that I write to you) .

    She wants to know where your brother got help,(names of hospital and the doctors) in Phillipines. And what is your opinions about their care.(Is it up to standard,expensive and effective?).
    Her dad has CC,so please give her some pointers and help her out;you know when you first hit with the news that someone had CC in the family you really like a ton of bricks hitting on your head and want any kind of help you can get;
    I am in the States and I don’t know that much in that area.
    So,if I may request you to see whether you can email Wen888 after you settling down from travelling .I will really appreciated. (I think she is also a Filipino too).
    Thanks for your thoughts and prayers for me. As you can see ,it works.
    and please keep us informed and come back often,You can be one of us to help other people too. We all are volunteers ,caregivers like you to your brother and patients like me.
    God bless.

    in reply to: dad diagnosed with cc #51545
    pcl1029
    Member

    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.

    in reply to: Medications suggestion for nausea/vomiting #51377
    pcl1029
    Member

    Hi, This is a reprinted message about how to handle Gemzar/cisplatin side effects.
    This is for information purpose only.Consult your physician or oncologist is a must before any change is made for your treatment plans.

    Please make sure when you restart your chemo on Friday,if it is the same (Gemzar/cisplatin); make sure you ask the chemo nurse to give you pre-med dexamathsone and Zofran as an IVPB over 30 min before you actually receive the Gemzar and Cisplatin to prevent the nausea/vomiting.
    You can also ask them for Ativan by mouth or sublingual or Ivpush for your anticipatory N/V before the administration of the pre-med of Zofra and dex.

    If they just give you the Gemzar only during the treatment cycle. Zofran IVPB will be sufficient enough to control the N/V.
    But you have to ask the oncologist first ,since Gemzar alone is not a high emetogenicity chemo(10-30%) like cisplatin(90%) or oxaliplatin or irinotecan and carpoplatin(30-90%).
    and be sure they will give you antiemetics after your Friday chemo if necessary.
    Zofran by itself (alone)will not be as effective as when give with dexamethasone(about 25% more effective if Zofran is given with dexamethasone in controlling N/V for high emetogenicity chemo like cisplatiin);for other alternative nausea and vomiting treatments;please check the “side effect” forum on this web site.
    God bless.

    pcl1029
    Member

    Hi,Gavin,
    Where have you been yesterday?
    shopping for those Scotland man dresses ? I am so dump,I forget the name of it.
    and why sometimes I see a couple bells and strings on them,Is that means you are in the higher up positions or work for the Queen?
    Just wants to say hi to you and cheat a bit.
    Please make sure you say hi to your mom for me.
    It is hot in Chicago (near 90F)but of course,compare to Lainy there,she will say PCL, you should not complaint and that is Mama Lainy’s order. it is 110F here.
    God bless.

    in reply to: Mom’s recurrence #51663
    pcl1029
    Member

    Hi,
    1. I am not a doctor ,I am just a patient .this is for your information only.
    I will use your husband’s networking to find a couple good interventional radiologists to look at the CT scans or even better get an up-to date MRI with contrast to determine what are the best options for radiation treatment (PDT,SBRT etc.).to shrink the tumor and then hopefully can have surgery later if they did not take out the 2cmx2cm tumor 2 days ago.
    2.Your mom is only 57 years young, when she recovers,it will not be a bad idea to use Gemzar+Xeloda as adjuvant therapy after the radiation treatment; It seems to me that this chemo is as effective as the Gemzae/cis combo if not better for DUCTAL CC and less side effects.Please consult your oncologist colleagues.
    3. it will not be a bad idea to ask the head dietician to do a swallow exam to see how well your mom can swallow things;ask him/her to see whether entero feeding is out of the question or which one at this point is better if TPN is needed based on the carloies count and hydration needs,- peripheral TPN or central TPN ,cyclic or continuous?) .One caution,having TPN for a long period may cause ammonia level to rise in the future (because the amino acids content in the TPN)and you may need to watch out for that.Base on what you wrote,it may not be a bad idea to have TPN if the dietitian agree. and I don’t understand why blood transfusion is so difficult especially post-op. For me ,I still feel dizzy and lightheaded now and then even 3 weeks after a liver resection,but my blood loss was only about 300ml and the doctor said drink more fluids and keep on eating and rest.He thinks I look good and the Hgb at discharge was 10.5. so there is no need for blood transfusion.
    4.As you may know already antidepressants can increase appetite and gain weight ,it is one of the”side effect” benefit. I notice GP use prozac or Remeron;but again you,as a physician yourself, should weight the benefit against the other side effects of the antidepressants in order to get the maxium benefit from it.
    I hope the ino. helps.
    and please keep us informed about the progress so we can help other CC patients .
    God bless.

    in reply to: dad diagnosed with cc #51543
    pcl1029
    Member

    Hi,Marion,
    Thank you for your concern about my recovery.
    I deeply appreciated .
    God bless.

    in reply to: dad diagnosed with cc #51540
    pcl1029
    Member

    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.

    in reply to: dad diagnosed with cc #51536
    pcl1029
    Member

    Hi,Lainy,
    Thanks for you complement.It just happened that I know that reigon very well and I think my imput will be of some help to her.You never know,some day one of our member may actually provide the cure for all of us if we all keep looking and researching.
    I promise I will not holdback on your guys ok Mama Lainy.Oh,I like that term,Mama Lainy very much.
    Thanks again,your guys imput on this site are much valuable than you think,Esp.when we first heard about cholangiocarcinoma what?? noma?
    God bless you ,Lainy.

    in reply to: dad diagnosed with cc #51534
    pcl1029
    Member

    Hi,Wen888,
    Normally I will not join in the discussion if you have been taken care already by
    our more experience members.But I think I can give you some insights on the treatment of that part of region.
    1Type in mares0311 in the Goggle box on the top right hand corner of this CC web site. She is from philippines and her brother has CC and are currently in touch with me via e mails. she may give insights of finding treatment locally or aboard.
    2.Hong Kong ,China was a British colony until 1997;and the Hong kong University (a government hospital)is very active in liver cancer research. I saw at least 5 posters while I attended The ASCO,2011 in June; and the filipino population there is large enough that you can ask for more details about anything who speak your language. It may be cheaper for you to get treatment than in Guangzhou ,china as most of the hospital in China are “profit oriented” and I have no comment on their treatment results. Ask the local Filipino what they will do when they get sick in Hong kong? In this way you will get more info. Of other hospitals in treating CC in Hong Kong(there are lots of hospitals there,for the rich as well as for the middle class if you wanted to.( Dr.T.Yau, RC. Leung etc are from Centre for Cancer Research,University of Hong Kong,I don’t know them and you may have to google their phone number or address to start from there.)There are clinical trials for liver and/or cholangiocarcinoma in Hong kong because,as you know,from Japan to Taiwan to Hong Kong to Philippines and Thailand and India,there are lots of CC and liver cancers occur there.( I believe the cause is environmental such as diets,ie: raw seafood, the habit of eating unclean shellfish,and not up to current standard of water hygiene in general).
    3.For Stage 2 ductal CC , there are a lot of treatment options even the CC is unresectable;systemic chemo therapy such as 5FU or Gemzar .In Asia they like to ise Gemzar+S1 oral formulations to treat CC ;intrabiliary radiation and therapy such as PDT or brachytherpy;SBRT and clinical trials are the current
    approach.
    I hope the info. helps
    God bless.

    in reply to: Any good marker for CCA cell line? #51658
    pcl1029
    Member

    Hi,
    When I attended the ASCO 2011 convention in early June this year,I ran into L.H. Jensen who was presenting his findings “Marker driven systemic treatment of inoperable cholangiocarcinomas;Panitmumab and combination chemotherapy in KRAS wild-type tumors” I talked to him,he is a nice guy and knows about biomarkers.
    his email address is Lars.Henrik.Jensen@slb.regionsyddanmark.dk
    I think he can provide the research help that you may need.
    God bless.

Viewing 15 posts - 1,516 through 1,530 (of 1,667 total)