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  • #60490
    pcl1029
    Member

    Hi,
    The key to Chinese Herbal medicine is to find an experienced practitioner(very important);please read about this under our experience forum title under “Complimentary and alternative treatment”

    HCC is relatively chemotherapy-refractory tumor .Systemic chemotherapy is usually not well tolerated by ptients with significant underlying hepatic dysfunction(ie: liver cirrhosis,hepatic B or c involvement).
    In general, monotherapy like 5FU,gemcitabine,irinotecan and thalidomide have been used;combination therapies of cisplatin with other agents like 5FU,,Xeloda,gemcitabine,doxorubicin have been done also. GEMOX and FOLFOX and XELOX are regimens that can be of use.
    Summary: The efficacy of cytotoxic chemotherapy is modest in patients with HCC.— “Systemic treatment for advanced HCC”– from uptodate.com literature review version19.3 sept.2011.
    Targeted agent like Nexavar( ie:400mg twice a day) provide some benefit to patients and the treatment is well tolerated(side effecgts included diarrhea,hand-foot skin reaction) the treatment outcome depended on the health status of the patient(ie:degree of liver cirrhosis) at the time of diagnosis.
    Other targeted agent like Avastin,sunitinib(Sutent),erlotinib,cetuximab have been used for HCC as clinical trials when used in combinations.
    Hormone therapy like tamoxifen,megestrol and octreotide have been studied in advnced HCC but cannot be recommended outside the context of a clinical trial.
    If there are no spread or mets outside the liver, 2nd opinion or consult by interventional radiologist is recommended to consider other radiation treatments like RFA or radioembolization is of value to the patient.
    I hope the info helps.
    God bless.

    #60360

    In reply to: New to it all

    pamela
    Spectator

    Hi Melissa,

    We live in Uniontown, Ohio which is about an hour south of Cleveland. So believe me, if this hospital wasn’t great, we sure wouldn’t drive that far. Lauren lives at home with us and our son, Ryan. As far as the chemo goes, I think the combination of those 3 are pretty powerful and very rough on a lot of people. Lauren might have an easier time because she is young and healthy. The main thing to remember with chemo is to keep up with your nausea meds. Lauren takes them around the clock for two days after chemo. You will probably be given Zofran and Compazine for nausea. Zofran gave Lauren headaches so she only takes Compazine. If she takes it once she is really nauseous, she will usually throw up, so take it at the first sign of nausea, not when it is full blown. With the three chemos, Lauren would feel like she was run over by a truck for a few days after. After she had 12 rounds of chemo, Dr. Z took her off the Cisplatin for a while to give her kidneys a rest. It is the hardest of the three to take because Lauren feels fine after chemo with only the other two. It also lowered Lauren’s platelet count quite a bit and she had to skip a few chemos because they were low. They have to be over 100,000 to receive chemo. The 5FU is administered in a pump that is hooked in to the port. Your Mom will wear it home for 48 hours, then have to go to the hospital to have it disconnected. It is put in a pouch that your Mom can wear like a fanny pack or over her shoulder. It is kind of a big pain for sleeping and all. Since we live so far away, a visiting nurse came out once, didn’t know how to unhook it and Lauren freaked out. After that, I asked if I could be trained to do it myself, and a nurse educator at the hospital trained me to do it and I have done every one of Lauren’s disconnects with no problems. That could be an option for you if you wanted to do that. Theraspheres is not real common. I know Dr. Sonnenday thinks it is a really good treatment option. Radioembolization is when millions of tiny, I mean like smaller than a fine grain of sand, glass beads of radiation are shot directly into the liver tumors to kill them. They are put in through the groin in an artery. Lauren had a practice run with dye on Thursday to see if she is a good candidate for the procedure. She is scheduled for the procedure on May 16. They are called Theraspheres or Sirspheres. Two different companies. They come from Canada. They are not approved by the FDA in the US. They have some promising outcomes though. Well it is getting late. I need to go to bed. Any other questions you may have, feel free to ask away. If I don’t know the answer, there are so many very bright and helpful people that will know. Take care and all the best. Maybe we will both be there for treatments one day and can meet.

    Love, -Pam

    #60359

    In reply to: New to it all

    melissapalma
    Spectator

    Thanks Pamela. It is amazing that my mother and your daughter have the exact same doctors. Small world! Where do you live? And where does Lauren live? That is a very long drive! Maybe we can get together for a coffee or tea sometime.

    My mother is considering the same regiment as Lauren (Gem/Cis and 5FU clinical study). I don’t think my mother is prepared for how hard chemo might be. She has this idea that it is going to be mild and that she won’t lose her hair. Have you found anything to help Lauren’s discomfort during chemo outside of the drugs that are prescribed?

    Since your family is a few months ahead of us, I am sure I will have a lot of very specific questions for you because yes, you are right, in the beginning it is a lot of information to process at the same time as trying to cope with the emotional shock of it all.

    I am so glad to hear that Lauren’s treatment is showing signs of improvement, that the tumor has shrunk. I had never heard of Theraspheres. Is it a common procedure? What exactly is radioembolization?

    I am happy to meet you here and am sending you, Lauren and your family lots of healing thoughts and energy.

    Melissa

    #60357

    In reply to: New to it all

    pamela
    Spectator

    Oh my gosh Melissa. Now I am thrilled to meet you. You live in Ann Arbor. How lucky you are to be that close to the hospital. My daughter’s name is Lauren. She just turned 26 in March. She was diagnosed on Aug. 29, 2011 after a liver biopsy ordered by Dr. Sonnenday. My daughter, Kristen, is 3rd year anesthesia resident at the hospital and she spoke with Dr. Sonnenday about Lauren and that is how we found him. He is the most wonderful doctor we have ever met. He gives us hope. Dr Zalupski is great too. It took us a little longer to warm up to him. Being an oncologist, I think they are taught to give the bad news and keep a distance. He has come around though and I really think he loves Lauren. He really cares so much about her. Lauren is doing really well. She is in a clinical study where she received Gem/Cis and 5FU. She had one large tumor and a few small tumors. The large one was the size of a canteloupe. It has shrunk at least 4 cm. The small ones have as well. We spoke with a radiologist a few weeks ago and her large tumor is now 50% necrotic (dead). She just had a mapping procedure this week to see if she is a candidate for Theraspheres. In a nutshell, this a form of radioembolization where tiny glass beads of radiation are shot directly into the tumors. If this kills her tumors, she might be able to have a resection. When we first started out, I think everyone thought Lauren’s future looked mighty grim, but with the help of these wonderful doctors, things are looking better. She feels great most of the time. Her back hurts, but that is about it. Chemo is hard on people, but she has had an easier time than most with it. She did lose her hair. Cisplatin was the hardest drug for Lauren to handle. Her platelets would go pretty low and she had to miss a few treatments because they have to be over 100,000 for treatment. She is only on Gemzar and 5 FU now because Dr. Z wanted to give her a break from it for a while. It is hard on the kidneys. If you have any questions at all, feel free. I have learned so much from this site. I felt lost when I first joined and had not a clue about terminology or anything. This site has been such a blessing to me. I hope it will be for you as well. I wish you and your Mom all the best and I can say she is in the best hands at U of M. God bless.

    Love, -Pam

    #60420

    In reply to: Introduction

    pamela
    Spectator

    Dear THennesy,

    I would like to welcome you to this site. Some will say chemo does not work. I can tell you that it has worked for my daughter. She has been on Gem/Cis and 5FU since Sept. 2011. Her tumors have shrunk and her large tumor is 50% necrotic (dead). She is now getting ready to have a radioembolization procedure. Everyone thought my daughter’s prognosis was very grim at the beginning. We have never given up hope and never will. She feels better now than she did before the chemo. So, go into this with a positive outlook. It makes all the difference. God bless you.

    -Pam

    #60383
    pcl1029
    Member

    Hi,
    welcome to our small world.
    1. Gemcitabine and Cisplatin are the current standard of choice of Tx for cholangiocarcinoma(CCA). there are still many other regimens to choose from if this one is not suitable for your mom in the future.
    Gemcitabine is easy to take,minimum side effect like low platelets count is one of the the most stand out side effect. Nausea and vomiting,loss of hair,fatigue,body ache,nephrotoxicity(kidney);hypomagnseium and hypopotassium are side effects of cisplatin. Nephrotoxity is accumulative and therefore ,depending on the health of the patient,after certain # of cycle(ie: 6 cycles) ;review of the regimen may be a good way to protect esp. the kidney if the side effects cannot be tolerated well.
    To start the chemotherapy each time overnite is a good idea and I don’t know why we cannot do this here in the States. It is less anxiety to the patient and they can sleep thru some of the unwanted side effects of the chemotherapy.
    2. 63 years young and otherwise healthy individual after left liver resection, (even had a lympth node positive involvement )has a good chance to live long enough for the next new thing to come in radiation oncology or/and medical oncology to extend our lives with much less side effects and enjoy God’s mercy for those who suffer. I do not see a “magical pill “will be discovered in the near future like penicillin for infection that provide a “CARE” for us.
    3. Continue to pursuit other options such as radiation treatment ;read and learn about it and other development of treating this CCA is the way to handle this disease. I am a CCA patient for 35months,like your mother,I had the left lobe completely resected;on gemcitabine for 14 months;off the chemotherapy for 6 months,CCA came back;RFA and chemoembolization; then re-resection again.Now is only on Xeloda(pro-drug of 5FU);and the rest is up to God’s mercy.

    what I am trying to say is this; CCA is a long and winding road to navigate ; it require courage,knowledge and patience; it is not easy but it can buy time for your mother.
    keep in touch,
    God bless.

    #60044
    jathy1125
    Spectator

    Mymom-I took XELODA for 5 months while waiting for transplant, I had no side effects. I did receive a weekly phone call from the Xeloda company nurse.
    I also had radiation with a 5FU pump prior, for 6 weeks with no major side effects. I did become extremely tired at the end of treatments, just competely wiped out, I just climbed in my recliner and stayed there for a while.
    Lots of prayers and HOPE-Cathy

    #59653

    In reply to: xeloda-oxiliplatin

    pcl1029
    Member

    Hi,
    there are no standard protocol .normally is 6 cycles and scan for progress of the treatment and determine the next step to go forward or change to another treatment for the cycles that is recommended for that new chemotherapy, Kris is right on her assessment about the treatment plans for CCA. In short, they are trying what they think is good for the patient at that point of time (the time of appointment). I still don’t think chemotherapy is the way for finding the cure fast enough for most of us who suffer for CCA.
    Most of the chemo regimens is for 6-8cycles and scan for results ;as you can see on this web site there is not uncommon to be on Gem/CIS more than 6 cycles.;not to mention Gemox ; Gemzar or 5FU monotherapy which the manufacturers indicated ” till disease progress or side effects intolerable.” as the criteria to stop the use of the drugs. that means if the drug works , the therapy can be used for life.(what kind of quality of life is that?).

    My suggestion is that you are always prepare psychologically the CCA will be back,(>65%);do not expect otherwise. so if this is what you believe and agree; then “to stop the treatment and wait “may not be the best option; but I also know patient are tired of chemotherapy(I know, I am on Gemzar,the easy one for 14 month and I hated it.)
    So the logical choice here will be just have the Xeloda 2 or 3 tablets twice a day,but make sure you talk to the oncologists first and he agree,he is the doctor and i am only a patient .I think in that way ,the patient still have chemotherapy to control the CCA but can avoid the harsh side effects of oxaliplatin or cisplatin . The patient will have both sides of world -less and tolerable side effecte and stil have chemotherapy to keep the CCA under control.
    Yes, there are side effects on Xeloda,but I think if your want both the worlds(good and bad); Taking Xeloda by mouth is my choice under you circumstances.
    God bless.

    pcl1029
    Member

    Hi,
    unless your are using the infusion pump like 5FU 48 hr pump for longer duration of infusion per cycle.
    the current protocol for Gemox do not called for such infusion scheduled use of the chemotherapy.
    Gem/cis is less tolerable than Gemox. and most of them is 1 week with both drugs and the second week just give Gemzar.
    but as you know physicians can use the referrence protocols any way they like .
    If you can tell me what you mean by High dose eg.give me like I will be on Gemzar 1000mg/m2+25mg cisplatin or Gemzar 1250mg/m2+50mg or 75mg of cisplatin and is that regimen give once a week or twice;then I can have some ideas.
    the following web site may be of some value to you even it does not have the most up-to-date regimens on bile ducts cancer as on our chemotherapy web page.
    http://www.chemoregimen.com

    God bless.

    #59638
    jtoro
    Member

    Tiffany,
    I was on xeloda for 19 months. Three pills in morning and three at night. The only trouble I had was feet peeling and numbness, but nothing I couldn’t handle.
    It got to be a little too much after a year, so he cut me down to 4 days instead of 7. I never got the mouth sores or any other side effects. I was on this with Gemzar for 19 months, then had to switch to 5fu/oxilaplatin which I’m on now.
    Best wishes to you on this new treatment. My prayers are with you.
    Jtoro

    #59637
    jathy1125
    Spectator

    Tiffany-I had gemcidabene, 5FU and XELODA. I had the 5FU pump 24/7 while doing 5 days a week, for 6 weeks of radiation. My main side effect was extreme tired!!
    Lots of prayers-Cathy

    #59636
    tiff1496
    Member

    Thanks yall. Kris– day by day please! LOL you can tell me about it on fb. ;) I hope the insurance doesn’t give me any problems. The most I have to pay for any drug is $40. When they didn’t want to pay for my Traceva, my local cancer center gave it to me for free! They have people donate unused meds, it is $5k a month.
    I wonder why some doctors use Xeloda and some do the 5FU?

    pcl1029
    Member

    Hi, Helen,
    Thanks to be a good Christian example for my 4 kids. Even though you could not speak,the 2 tiny drops of tears from your left eye after my daughter’s prayer at your hospital beside shown that you were with us during the prayer, and I knew you truly felt and heard that your good effort to teach my kids to know God for the past 20 years was not in vain.As I saw the stream of Church members who came to visit you, I realized they were also came to say the final goodbye for the same reason as you had taught their kids to become good Christians too.

    Thanks for letting me into your life as one of your brother-in-Law;thanks for trusting in me as the medical person that have the privilege to serve you and thanks for letting my wife and kids to have opportunities to share their individual, personal and final thoughts and prayers with you before your departed.

    No words from me can express the deep sorrow and understanding I felt about your CCA journey except I know you just went before me earlier on the same journey.

    May your soul now at peace and join your parents to sit on the right side of God and enjoy heavenly peace.

    God bless.

    HX: 58 yrs. young female, mother of two sons;love to cook and eat ;felt ill at Thansgiving dinner on Nov. 2010 ;dark brown urine;later jaundice.

    Diagnosed on Jan.2011 as Stage IV extrahepetic cholangiocarcinoma with mets to omentum.

    Start treatment at OSU by Dr. SAAB with Gemzar+Xeloda+Avastin with good results especially on the abdominal omentum carcinomatosis which almost completely disappear after the first CAT scan; Unfortunately the regimen had to change due to the side effect of “colon perfolation” of Avastin.

    MK2206 clinical trial was suggested after several months of Gemzar and Xeloda regimen which did not help that much on the cholangiocarcinoma and ovarian and liver mets started to develop.Stents had to put in every 2 months to relieve the bile blockage. I suggested to her at this point to try the standard regimen of Gemzar+Cisplatin first before the MK2206 since it is so new(phase 1 clinical trial and only 3 patients in the study)and the GEM/CIS may help to control other mets like ovarian cancer.
    She did talk to the doctorfor further advice,but he said to her”you can always come back for the other chemo”; Well , then she decided not to miss this chance and started the clinical trial on MK2206 ( cell pathway targeted therapy agent); CA19-9 improved substantially but hyperglycemia(side effect of MK2206)developed and therefore MK2206 had to be stopped after 2 month.
    I did at this point ask them to get 2nd opinions for radiation and medical oncology from Mayo,but she is too weak and lost the fighting spirit.
    By this time , the other metastasis of the liver,ovary and the peritoneal carcinomatosis continued to grow aggressively without other form of treatment; The last proposed chemotherapy by the doctor was FOLFOX .
    But she was to weak to do the whole regimen;she did only the 5FU 48hour pump once and she could not tolerated it .
    She did not havethat much pain at the last stage of her journey;she developed sepsis,DVT and swelling of both legs and had to be admitted to the hospital 3 weeks ago.She could still talk to people and the doctors in the first part of the hospital stay;to receive 2 stents for the failing kidneys.
    Due to the growth of the 2 ovarian cancers pressed against her intestine.she could not absorbed anything thru nutritional tube feeding;DNR is requested by her and her family;comfort care like oxygen and iv fluids were provided.
    Our family is fortunate enough to communicate with her for the last 5 days;the last word my wife heard from her was “coffee” and my wife got some and use the little sponge to put some warm to touch coffee on her lips.
    Three days later;most of her organs stopped working except her heart and her mind;she finally transferred to the Kobacker hospice care.(I highly recommended this facility if you are in Ohio.)
    During the hospice stay;her eyes were closed most of the times; her blood pressure continued dropping until it could not be measured even by hand held BP measuring device;the heart rate continued to go higher trying to keep to maintain the blood pressure;the lower parts of the body was cold and the forehead as well.
    Finally this morning, she passed away at the age of 58. she endured this horrible ,inhumane,brutal and cruel disease courageously for 15 months.
    May she rest in peace.

    pamela
    Spectator

    Hi Erin,

    Thanks for answering. Do they do the procedure more than once? I was under the impression it was only a one shot deal. Is the procedure painful? As for putting on weight, that is not a problem. Lauren has gained like 40 lbs. since she started chemo. We think it is from the steroids. They cut her steroid in half and she is way better with her mood and appetite. She has always been a bigger girl and would love to lose some weight. She did lose around 40 lbs. before she was diagnosed with CC. Not a great way to lose it though. She is off her Cisplatin and feels so much better. She just gets Gemzar and 5FU. We are so hopeful this procedure will allow her to have a resection. I will pray for your Dad. Thanks again.

    Love, -Pam

    pamela
    Spectator

    Hi Lorraine,

    If your Mom is still getting headaches, it could be from the Zofran. My daughter took Zofran the first few times after chemo and had migraine like headaches. We stopped the Zofran and use Compazine instead and no more headaches. She takes Ativan at night to help her relax, but has also taken it for nausea. My daughter’s chemo regimen has recently been changed. She had been on Gem/Cis and 5FU for 12 rounds of chemo. Her doctor decided to take her off the Cisplatin and just use Gemzar and 5FU for awhile because Cisplatin was causing her platelets to drop and about every 4th time she had to miss chemo. He feels that she will be able to get her chemo every time because she won’t have this problem anymore and he feels the benefits of having chemo regularly is better than having to skip with the Cisplatin. Cisplatin must really be the rough stuff because this week she only had the 2 chemos and felt like a million bucks. Every time she had the 3 chemos she would be really tired and achy for 3 or 4 days. This time she never felt bad and went shopping all day wearing her 5FU pump and also went on a 2 mile walk!! I have worries that her chemo won’t be as effective, but the doctor said he will add oxaliplatin if things start getting worse. I am not a doctor, so I have to trust that he is doing the right thing. When Lauren had her 3 chemos it was always Gemzar first, hydration, Cisplatin, hydration, and then pump hook up. The Cisplatin is what made for a very long day. This time she was in and out in about 2 hours compared to 6-7 before. I wish your Mom all the best in fighting this disease. Take care and God bless.

    -Pam

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