SwiTcHing treatment

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  • #56229
    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
    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.

    #56227
    jtoro
    Member

    Percy- The scan before this stated:
    Stable lobulated primary mass between the left and right portal veins measuring approximately 3 cm. multiple stable hepatic low density mestatic lesions.
    Stable lymphadenopathy as well as omental and peritoneal carcinomatosis.
    Remainder of exam is unchanged compared to 9/20/2011.

    I realize you are not a doctor, but you understand more about all of this than I do. I never had fatigue and no pain from the nexavar. I had abdominal and back pain when first diagnosed. Now the pain is on my left side under the last rib and throughout my back. I take about 1500-2000 mg of Vicodin a day.
    Dr. Lens explained that any little bit of growth in the peritoneal area can cause lots of pain.
    So confused and wondering if I should stay on the same drugs or time to switch.
    Don’t want to use up my options if not necessary.
    Jtoro

    #56226
    pcl1029
    Member

    Hi,Jtoro,
    you know I am just a patient like you and not a doctor.
    base on the scan info. you mention. can you quote the scan “impression” section of the scan just prior to this one so i can compare? the key word on the quote statement is the word STABLE appeared twice and i want to know what is the wording of the scan prior to the current recently scan.

    BTW,please forgive me if I want to know more about yours and other patients medical reports ,record and questions. I am not trying to be nosy and I am not trying to act like I am a doctor. I am just a patient who love human biology , biochemistry and pharmacology and by major in college I am working in my medical profession for 30 plus years. My interest in that three subjects provided me an additional interest and desire to help me to understand my CCA. and hopefully thru this web site I can at least share what I found and provide a different angle to all of you who seek info. for CCA.
    Back to the message,
    if you lie down for a while will the pain subside as compare to sit up or standing for let say,a couple hours;where are the source of the pain? liver,(lower or upper right abdominal pain near the liver or joint or chest or muscle pain.I want to find out whether the pain is related to the Nexavar or not?
    Are you still as fatique as when you started this 3drugs combo treatment 20 month ago( the same, feels better, or worst or “got use to it “in fatique and pain side effects)
    God bless

    #56225
    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

    #56224
    mn
    Spectator

    I agree with Marions. You had great success with the last chemo…almost 2 years. Your success will continue. Dr. Lenz is an amazing man who does not want to give up. He always comes up with something else.

    #56223
    marions
    Moderator

    Jtoro….I am so sorry to hear that you had a tough day. These are the days we are reminded of the roller coaster ride this disease brings along. You had such fantastic results with the past treatment that I am full of hope for the next choice to be equally as effective. As Peggy has mentioned there are numerous other options available. Hang in there and don’t give up on hope.
    I am thinking of you and am sending all my best wishes your way,
    Hugs
    Marion

    #56222
    pcl1029
    Member

    Hi,
    This is a difficult decision.
    abdominal pain is a side effect of Nexavar,but if the Vicodin can give you enough relief of pain; i will rediscuss the treatment plan with Dr. Lenz to see whether he will change back to the Gemzar/Xeloda/Nexavar.
    In my opinion ,which CAN BE WRONG ,I think the three drug regimen will work better. The increase of 1mm in size may or may not be of anything and I think that was the reason that Dr.Lenz wanted to continue the 3drugs combo for another cycle in the first place.But if your pain is unbearable,then you may not have any choice. Good luck, pray hard and let the Holy Spirit guides you.
    God bless.

    #56221
    peggyp
    Member

    Hi Jtoro,

    My husband, John, is on his third chemo cocktail. He started chemo in March 2009. So don’t give up hope; keep your fighting spirit and pray that your next cocktail will keep you stable, or better yet, shrink your tumor more. Sending positive wishes your way, PeggyP

    #56220
    lainy
    Spectator

    Jtoro, please don’t jump the gun. Have you thought of another opinion? If you go to the search button you may pull up posts that talk about 5fu/oxiliplatin. You do have the week to decide what you want to do. Remember, it all is your decision. I am wishing the best for you and you will make the right decision! You never know how strong you are until “strong” is the only choice you have!

    #6156
    jtoro
    Member

    Update- I have been on chemo with gemzar/xeloda/ nexavar for almost 20 months with scans each 7 weeks. My last scan (2 weeks ago) showed only 1 mm growth, but activity in peritoneal area. He decided to keep with same chemo until next scan. Today I had appt. And told him that my pain has really increased and am taking vicodin round the clock. We had a talk and he decided to change treatment now because of the pain. The next treatment will be 5fu/oxiliplatin. I have to wait one week for insurance approval. I’m very upset that the last treatment is not effective anymore. He said it was amazing it worked for 20 months. I’m so nervous that this next treatment won’t work and then I don’t think there’s anything left to try. I broke down in the office and couldn’t stop crying. I need to be here for my children-16 and 19. How well has this treatment worked for others? What if this doesn’t work? Should I have switched? So many questions going through my head.
    Jtoro

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