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  • #6200
    katrina
    Spectator

    My oncologist doesn’t know of anyone like me so we’re walking an unknown path. If there is anyone in my situation, let’s compare notes, please!

    I have interhepatic CC. I’m 63 and very healthy. The large liver tumor was successfully resected; no sign left. Did Gemzar/Cis just in case. No sign. Then, 8 months later, one lymph node near there doubled in size and was malignant. Tried Gemzar/Cis again. It remained stable with only a little shrinkage. PET doesn’t show activity but node is still enlarged and the “SUV” background was a bit brighter than they would have liked and could have concealed seeing activity. (So, what to do?)

    Went to MD Anderson (Houston, TX) for an opinion. An endoscopic sonogram shows also something dark between lymph node touching/encroaching on pancreas, portal vein, and CBT. It didn’t light up in PET at all but its darkness on sonogram suggests something is there (scar tissue from operation, dead or almost dead cancer, infection — don’t know).

    Almost all doctors suspect it isn’t dead in the lymph node periffery but they didn’t take another biopsey (as intended) to prove it. The MD Anderson surgeon can’t meet with me for two weeks to say what he’d do. The IMRT doctor won’t comment til the surgeon does. My home oncologist was considering 5FU to see if it keeps it stable. My home surgeon thinks surgery is a bit risky (and he is a risk taker!) and was hoping for radiation. But the radiation doctor had said before the endo that IMRT is the only radiation possibility and he would strengthen the dose which has a 25% chance of hurting the duodenum.

    Anyone else out there like that now or in the past? I can’t be the only one who got rid of the liver tumor but am living in a world of don’t knows….. I rather fear surgery if it involves the pancrease (perhaps whipple procedure) which has an abundance of potential complications and doesn’t spell CURE according to posts I’ve seen.

    Sorry, but I could almost throw up over being in this current world of “I don’t know for sure.” I’ve always been symptomless from the cancer to date but whenI read all tehse posts, I fear I’m just living on borrowed time for now.

    #56566

    In reply to: ascites

    pcl1029
    Member

    Hi,Fatema,

    If I remembered correctly,you mentioned reduced dose of cetuximab may be used for your mom by her oncology because your mom also has radiation treatment. If so, then the acneiforn rash may not be as severely as it should be.(the dose in the Gruenberger trial is 500mg/m2 for cetuximab on day 1 and repeated every 2 weeks for 12 cycles.) 13% of the patient (pt.pop=30 pt) had Grade 3 skin rash and overall,in clinical studies of cetuximab, acneiform rash was reported in 76-88% of 1373 patients. Therefore you may be correct in the assumption of the “mild” rash may not produce the desire response it should be for your mom.

    “There is a trend toward improved survival with increasing grade of rash,with grade 3 rash appearing to have a longer survival as compared to patients with less severe skin rash”–direct quote from clinical pharmacology on drug info. for cetuximab.
    From the same resource,,when discuss about colonCA patient on cetuximab in combination with other chemotherapy,”No benefit was observed over chemotherapy alone in patients whose tumor expressed mutant K-RAS.— In contrast to K-Ras wide type patients showed significant improvement in efficacy endpoints over chemotherapy alone.”
    You may have to look into whether your mom is KRAS mutant or not.
    As you know GEMOX+C or P are clinical trials use for other tumors.
    The one study below is for Squamous cell carcinoma and is not using GEMox;they use cis/5FU+cetuximab ,but the strength of recommendation is strong and level of evidence rating are high and date of review is very recent 11/09/2011 take a look ;1.Vermorken J,Mesia R etal. Platium-based chemothrapy plus cetuximab in head and neck cancer. N Engl J Med 2008;359:1116-27.
    I had studied the article”Targeted Therapy for Biliary tract Cancer” by Junji Furse and Takauji Okusaka,that you have mentioned about 3 months ago;. I did not looked at the Franch study but I did looked at the Austria trial done by Gruenberger because it was cited most often in the States.

    In my opinion, except the Gem/Cap+ Avastin that personally I have observed from my sister -in -law. with amazing results except the perfolation of the colon( I think patients who has diverticulitis are prone to this side effect if they take Avastin or other similiar targeted agents.);
    Targeted therapy is still a long way to go . A well-known GI specialist who have done a lot of work on CCA at one of the most famous clinic specialized in CCA told me about Sorafenib may be of value to CCA patients;but I take a look at the old studies; sorafenib is not that special,but indeed as he said to me about 3 weeks ago, it is a targeted agent that target a lot of different signaling pathways in cancer cells. May be something is new on the horizon for that drug .
    BTW,You may have read this too. it is by L.H.Jensen” Marker driven systemic tx of inoperable CCA: Panitumumab and combination chemotherapy in KRAS wild type tumors.”it is on the ASCO web site under ACSO 2011 poster abstract No. 4010.
    I talk to the author Jensen during the 2011 ASCO convention, he said hopefully the results will be updated this year.
    I still haven’t heard from the member’s response for the permission.I will keep you informed as soon as possible. But the side effects of his/her tx of the GEMOX+cetuximab is in line with the Austria trial .
    The Austria trial did not tell us the “endpoint” (PFS or overall survival); however,he Poster #4020 will provide some insight on this front even it is not cetuximab.)
    God bless.

    pcl1029
    Member

    Hi,
    If my info is correct. S1 will be available in the States in a couple years.and is now under studied by the FDA for its effectiveness as compare to Xeloda.

    Last year,when I attended the ASCO 2011 convention there was a poster about s1, and the gentleman on duty indicated that they will try to market S1 thru a larger drug company in the States. I will get more info about S1 in the up coming ASCO2012 convention.

    Basically S1 is like the Xeloda (Capecitabine) that is current available in Europe and in the States. these are the prodrug of 5FU taken by mouth.
    God bless.

    #56435

    In reply to: 5fu/oxiliplatin

    jamie-d
    Member

    Hi Jtoro,

    I was on FOLFOX (5FU, Oxaliplatin and leukovoran) for 6 months before it stopped working. I don’t think it was that bad. The worse was having to wear a pump for the 5FU for 2 days… just an inconvenience really. I had some hand and foot syndrome, but not as bad as when I was on Xeloda. The results certainly made it worth being on it. Take care and God Bless,
    Jamie D

    #56434

    In reply to: 5fu/oxiliplatin

    Eli
    Spectator

    Hi Jtoro,

    My wife was on 5FU for six weeks, combined with radiation. The worst side effect from 5FU was hand-foot syndrome. You can find TONS of information about it by doing a google search:

    http://www.google.com/search?q=hand+foot+syndrome

    Re second drug: the name is oxaliplatin. Do another search of the old posts using the correct spelling. Hopefully you will find more posts.

    Best wishes,
    Eli

    #6177
    jtoro
    Member

    Is 5fu/oxiliplatin treatment difficult? I may be switching to that and Dr. Lenz said it will be about the same as the one I’m on now which is xeloda/Gemzar/and nexavar. I looked up old post, but did not see many.
    Jtoro

    #56413

    In reply to: stopping chemo

    pcl1029
    Member

    Hi,shar,

    5FU/oxilaplatin is tough to take; I presume they do labs before each chemo treatment to see whether your mom can take the chemo or not on that day. If the hemoglobin or the WBC or the platelet counts are low,;the lab should be reviewed by oncologist or the PA first to determine your mom should or should not have the chemo on that that day. Even if so,as a patient you can refuse treatment at any time.
    And as the right of the patient;he/she can refuse treatment at “the point of treatment ” too without being charged(What I mean is that if the chemo were made and your mom do not feel up to it and refused,she cannot be charged for the chemo that had already made even cost thousands of dollars to the hospital.( ie: the new drug “Yevoy “cost 50.000 average/dose to the HOSPITAL.,the pt. cost will be much higher)
    Here is my answers for your questions.

    1.”My question is would the quality of life improve (even if just for a few months) if we stop chemo?
    for me ,that is not a difficult question for me to answer;but may be difficult for some people to understand if you do not keeping up and continue to do your research on this subject:
    the answer is YES.but the consequence of the overall treatment will be UNKNOWN till scan time.( If I may, i will suggest your mom having scan every 3 month instead of every 6month for disease in the active treatment state,)
    2. ” Can you start again once you have stopped? ” that will be determined by your oncologist.

    My own opinion is that,for myself as a patient, quality of life is much more important than just laying on the bed and receiving the tender loving care by all those who care about me.
    For example I will miss very much of my wife’s tender loving care who prepare each meal perfectly for me 3-4 times a day;pray every nite with me;and my son who always find time to talk to me at nite before going to bed;ask how i am doing during that day;and before going back to his room,he always give me a good hug each nite and say good nite before leaving;and he is a 25 years old christian who works late hours.
    The point is as a patient myself, the KEY is try to PREVENT or IMPROVE my disease from getting worse.this is the most important point of seeking treatment,but if the outcome is to the contrary ;then what is the point or purpose of receiving treatment and seeing those who love me so much suffering each day inside but maintaining a uplifting face outside to please me,the patient.Don’t you think the caregivers are not suffering too?
    Chemo and targeted agents still is a long way to come for prolonging life(i mean quality of life) and cure.
    God bless.

    #6175
    shar
    Member

    My mom is currently being treated with 5FU/Oxipl and it has been very hard on her. No energy/appetitie and we keep ending up in the ER for fevers and dehydration. The 6th and 7th day after treatment are the worst.

    My question is would the quality of life improve (even if just for a few months) if we stop chemo? Can you start again once you have stopped?

    I don’t know if she is ready to make that decision but would like to know if it is something we should talk about. If she isn’t going to feel and (or maybe feel worse) I would have to rethink bringing it up.

    #6168

    Topic: Introduction

    in forum Introductions!
    lisacraine
    Spectator

    I was diagnosed with cholangiocarcinoma in August 2010 and had a liver resection removing over 70 percent of my liver followed by 6 months of 5FU. Three months later my tumor marks jumped and a CAT scan showed two new tumors. I had another resection removing over 35 percent of my liver. During this last resection they used radiation and they got clean margins. One month later my tumor markers were elevated again and a CAT scan showed a one centimeter tumor in the liver. They started me on Gemzar and I will have radiation as well. I am new to the site and really need a support group and people that understand the challenges involved with this disease.

    #56229

    In reply to: SwiTcHing treatment

    jtoro
    Member

    Percy- Thank you for your thoughts. I am a Christian. There is no way that I could have gotten through the last 20 months without God in my life. Everyone i know I ask them to pray for me. I believe this is why my treatment has been so successful. The Lord has been with me.

    I am taking the Vicodin 500, about 3-4 in 24 hours. I also have pain each morning in the middle area right below the breast bone. I will email Dr. Lenz tomorrow and continue to pray about what to do. He has me off the nexavar and xeloda. He is waiting for insurance approval for the 5fu/oxiliplatin. The pain is definitely getting worse and is not all relieved by the Vicodin. They gave me a prescription for dilaudid and fentanyl patch, but I haven’t tried either. I’m very nervous to try them.
    Thank you for your support,
    Jtoro

    #56228

    In reply to: SwiTcHing treatment

    pcl1029
    Member

    Hi,Jtoro,
    I hope you meant you take Vicodin tablet 5/500 or Vicodin ES,3-4tablet total per day,if you need stronger strength,switch to Norco 5 or Norco 10 because Norco contain less acetaminophen per tablet but equal in content of hydrocodone,the main narcotic ingredient for pain.
    Back to the discussion, both reports indicated STABLE disease for the multiple low density liver lesions and omental carcinomatosis ,with the latest report of suggestin some of,but Not all of the low density liver lesions and omental carcinomatosis MILDLY or SLIGHTLY increased in size.

    In my opinion,I will suggest to accept D.r Lenz” the 3 drug combo” for another cycle as Dr. Lens original decided, I think he was right on that.
    as I also indicated in the last message, you need to rediscuss your concern with dr. Lenz if you are not 100% sure. You donot want to upset the doctor,most of them ,especially those who are of the highest regards may get offended by information patient get from the internet even the research infomation were done by their respected peers on the same field. It is totally depending on the personality of the doctor,some are open minded,some are not.Remember I am only a patient and not a doctor. And my suggestion cannot match the experience of Dr .Lenz for sure.
    5FU/oxaliplatin may works too, but as always,you have to try it first to know whether it works or not. Again, as whenI first answered your message,I said,
    “This is a difficult decision”,indeed it is.
    As a Christian,during the course of my treatment,as you may know,I read a lot in addition to my understanding of my disease, therefore I have more choices to choose From. In such events,I always let the Holy Spirit guide me through, it sounds I am so undecided and needs Devine intervention and I am stupid,but as patient myself,I know ,for most of us, we cannot do much to help ourselves because of our health and time is not on our side, therefore the thinking process of the existence of us on this earth are always on the backs of our mind no matter what suggestion otherwise.our worry are very different than our caregivers ,our fear are in a very unstable situation ,our so call reasonable expectation become unreasonable ,and that is why ,especially me because of my knowledge of this disease may be actually a hindrance for me, I pray a lot ,I need the Holy Spirit to guide me. A study on the use of alternative or complimentary medicine(CAM) indicated patients who have higher education level ,most of them will seek CAM as treatment also. why, because as patients we are really think that ,the more we know,the best chance we can have,but sometimes it may not work that way .that is why I need the Grace of the Lord for guidance,until now His Grace is more than I could ask for.
    If you are not a Christian,please forgive me for my venting.you know,sometimes tough and stupid man like me still need to talk out loud to relief the emotional burden even on the surface , I always present my best front to all those who know me.
    If you are a Christian,Just leave all your problems to our Lord,Jesus Christ, on earth as in heaven, he will give his best for us. And for the others who think I am too religious and lost my marbles at this moment, my answer is NO. I just know that human limitations cannot provide the timely and urgent treatments that we need now for us,the patient.
    God bless.

    #40884
    sallypa
    Member

    i have some more information about the treatment plan for my sister and i hoping to get some advice from the friends i have here. the oncologist at university of penn spoke of three different chemo protocols. xeloda, gemzar and 5fu plus oxiliplatin. my sister was given 5fu with the radiation treatments she received after her first surgery. that was followed by six months of gemzar. the oncologist believes the best course of action right now would be to give her a stronger dose of gemzar. he said he is basing that on the length of time it took for a recurrence to appear. it was a little over a year. he feels a stronger dose could keep it on hold longer. my sister also spoke to someone who felt a combination of xeloda and gemzar may be effective. we dont have much infor on the 5fu/oxi chemo. i would really like some advice. on monday we are contacting sloane to let them look at her reports and give advice. also was wondering if anyone has ever heard of a drug called naltrexone. i was reading about it and it suppossedly has become an effective cancer fighter but i always question the legitimacy of drugs i havent even heard of before. thank you to everyone for your support, prayers and advice. we really appreciate it.

    #56225

    In reply to: SwiTcHing treatment

    jtoro
    Member

    Percy- Dr. Lenz was going to continue the treatment until I talked with him about the pain. He said with this cancer he has to rely on ct’s, bloodwork and the way I’m feeling to make his decision. He took into account how my pain has increased quite a bit over the last two months. This was the report from my last ct: multiple low density liver lesions, which are stable to slightly increased in size. Stable to mildly increased omental modularity, concerning for carcinomatosis. Mild interval increase in mess enteric soft tissue attenuation, which may be related to edema.

    Would love your input on these findings. Would it still be more beneficial to continue same treatment.? Is 5fu and oxiliplatin not effective?
    Jtoro

    #56321
    pcl1029
    Member

    Hi,

    2 things, which you may have known already.
    1. AVOID cold drinks,use of ice cubes;touch of cold materials and housewares like cups.etc.
    2. Felling fatigue is normal unless interfere with daily activities like dinning or reading a book or taking a walk .

    Xeloda is a prodrug of 5Fu which your husband had before;except taken by mouth.
    Oxaliplatin is the third generation of cisplatin (newer with supposed less side effects);but since your husband was on cisplatin before;please REMIND the chemo nurse on the FIRST treatment of oxaliplatin to watch out for anaphylactic reactions(such as difficult in breathing,shortness of breath,rash,itching and hypotension,it can occur within minutes of staring the oxaliplatin the FIRST time of treatment.) and make sure drugs as epinephrine,solu-medrol,antihistamine like benadryl injection are available ON HAND just in case.

    the only other things you have to watch which may not be on the patient information list you got are ,

    1.Make sure the time of oxaliplatin infusion will be around 2hours but NOt longer than 6 hrs to avoid acute toxicities.
    2.Use of an injection port to avoid severe tissue irritation as comparing to each time of sticking a vein and increasing the chance of extravasation .
    3. If the patient is on Lanoxin(digoxin) for heart problem;talk to the doctor to adjust the dose of digoxin if needed.
    4.drug interactions with filgrastim,G-csf etc may occur and you should discuss with the oncologist.
    God bless

    #6162
    appreciatehelp
    Spectator

    Looking for those who have received chemo using CAPECITABINE and OXALIPLATIN (XELODA & ELOXATIN). We await Xeloda meds and it is my understanding that the regimen will be:
    Cycle: Day 1-Infusion of Oxaliplatin;
    Day 1-Also begin 14 days of Xeloda,
    Then the “cycle” repeats.

    Husband had Whipple 06/23/10, followed by two other chemo treatments. First was Gemzar with 5FU Infusion but 5FU was discontinued. Cancer recured in surgical bed and is protected by transverse colon. Next he had CISPLATIN/GEMZAR for 6 cycles, completed 12/9/11. CAT following showed tumors slightly increased. And then yesterday (1/6/12), he required removal of fluid from within the peritoneum… 6 liters!

    Seeking imput from those using this same combination. I have printed out side affects to expect for each, but if you have any “tricks in the bag,” experience or advice to offer, I do welcome it!!! Thanks.

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