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  • #51831

    In reply to: New to Site

    pcl1029
    Member

    Hi,Sissy,
    I am a patient and have the same CC descriptions as yours .I had my left lobe removed and RFA(ablation )done at the 2 spots in my right lobe with clear margin 2 years ago; Gemzar chemo for 14 months as adjuvant therapy.

    Usually when the surgeons(liver specialist) perform resections,they will use intra-operative ultrasound to detect the CC they cannot see in the liver and do ablations (RFA) to burn the tumors dead unless the tumors are too close to vital organs.So you should not worry too much about the clear margin .
    The chemo you will receive most likely is the adjuvant therapy consist of either Gemzar or a combination of Gemzar plus one of the platin group agents like (Cisplatin, oxaliplatin);Or 5Fu.
    I am not a doctor,but I know you will do fine since the age factor is on your side.
    The prednisone you take is not the risk factor that contributed to the disease CC.

    For chronic prednisone user like you, and if your dose of prednisone >5mg daily, may I suggest you should talk to your GP to order tests like Bone mineral density(BMD),preferably of the spine;lipid profile and serum glucose to monitor and prevent osteoporosis.and you should take calcium and vitamin D supplementation daily as suggested by your doctor.

    Stem cell treatment of any sort–outside of bone marrow transplants and a few other rarely used treatments–are not anywhere close to being therapeutic use.(from Arthur Caplan Ph.D.-a msnbc contributor)
    The ONLY and FIRST stem cell therapy product that just got FDA approved in June 2011 for “improvement of the appearance of moderate to severe nasolabial fold wrinkles in adults “is Laviv (Azficel-T) . In short,there are no approved and effective stem cell treatment or protocol for CC in the States.

    Sometimes if you treat CC as a chronic disease like hypertension or diabetes
    ,you will feel much better and will provide yourself more positive energy to take care of your illness.
    CC is a long and winding road that required courage ,patience and knowledge to navigate on it . Don’t worry,you will be fine.As the bible saids in 1.Corinthians 10:13,”.


    God is faithful,and he will not let you be tested beyond your strength,but with the testing he will also provide the way out so that you may be able to endure it.”
    God bless.

    pcl1029
    Member

    Hi,
    Some facts about hair growth:
    On an average,there are 100,000 hairs on the scalp and of which 100-150 are lost normally daily in the cycle.
    Hair grows at a rate of 0.35mm per day.
    Approximately 85-90% of hair follicles are in the active growth phase at any time.

    there are 3 grades of hair loss.
    Grade1=less than 25% of hair;obvious to patients but not to others.
    Grade2=25-50% loss; obvious thinning but enough to lead to the use of a wig.
    Grade 3=>50% loss and a wig may be needed.
    Randomized controlled trials suggest significantly less hair loss with scalp hypothermia but it may not be as effective in patients with liver dysfunction.

    Among the drugs used to treat CC, ,epirubicin,paclitaxel,irinotecan are those most likely to cause complete hair loss.;5FU,gemcitabine ,mitomycin are less common and Carpoplatin,Cisplatin and Capecitabine are the least common to cause hair loss. EGFR inhibitors like erlotinib(Tarceva) ,sorafenib(Nexavar) and sunitinib (up to 50% of patients) and MoAb like cetuximab(Erbitux) may cause hair thinning and most of them are reversible except in some cases after treatment of gefitinib(Iressa).
    In short,high dose of chemo, and combination chemotherapy reigmens are more likely to result in hair loss than are single agents , by oral administration and low -dose therapy and weekly administration.
    Because the chemotherapy-associated hair loss is transient and reversible after cessation of the treatment; counseling and psychological support before and during therapy should be considered first over the use of devices such as scalp hypothermia and scalp tourniquet because of case reports of cutaneous metastases and therefore preclude the recommendation for there use.

    No pharmacologic interventions is available to treat chemo-related hair loss effectively at this point.–From uptodate.com literature review version. 18.2.
    God bless.

    #51705

    In reply to: Chemo pump

    jathy1125
    Spectator

    Hi-Lily, I had no immediate side effects from 5FU. I did mine with radiation, so about a week after finishing both treatments, I became so exhausted. My exhaustion just meant a lot of “recliner time”!!
    Lots of prayers-Cathy

    #51704

    In reply to: Chemo pump

    lulu07
    Spectator

    Lily…I also received Irinotecan and Leucovorin along with Oxaliplatin the 5FU and one other…which I don’t remember the name of now. They were administered over a 2 day period and then I would have a week off, so my chemo was basically 4 days a month for 6 months. I really did not have any side effects although my WBC did start to go down after about 2 and a half months in, I injected myself with Neupogen 2 days in a row after chemo which helped to increace my WBC so I would be ready for chemo again. I was given steroids on both days of my chemo and developed a voracious appetite so I had no problem with weight only that I put on quite a bit. I did not lose any of my hair but really I was ready for it and thought if that’s the least that can happen so be it. One plus was that my skin became very soft and smooth I have no idea if this was from the chemo but I tend to think it was…my best to your mother-in-law she is a lucky lady to have you in her corner…Nancy

    #51703

    In reply to: Chemo pump

    lilyamongthorns
    Spectator

    Thank you all for your responses. Diane will have an 5FU pump and then get bi weekly treatments of Irinotecan and Leucovorin – I believe the 2nd too are the right names but I will double check.

    I will use the search function to see if anyone else has been on those chemos – but if you want to tell me any side effects you had with 5FU that would be helpful. My mother in law has been tired, lost a lot of weight, and had breathing difficulties associated with the Gem / Cis, but hasn’t lost her hair. Are any of the new chemos I listed more likely to make her lose her hair?

    Thanks again!

    #51702

    In reply to: Chemo pump

    lulu07
    Spectator

    Hi Lily…I also had 5FU delivered through an infusion pump…I would go to oncs office for chemo on Monday be sent home with infusion pump overnight..back to his office on Tuesday for additional chemo, by the time I was finished with the other meds the pump would be done. I have a double port so both could be given at once. I really had no problem with the pump other then it was odd to be sleeping with tubes and what is like a small shoulder bag. One warning however….cats love the tubing from the pump it sways..so being the curious creatures they are they want to catch it. One of my cats did and put a hole in the tubing! The pumps come with emergency phone numbers…they got back to me right away and explained to me how to shut the pump down…which meant I was longer at my oncs office the next day. They also told me that was the #1 reason they received phone calls…thoughts and prayers Nancy

    #51701

    In reply to: Chemo pump

    jathy1125
    Spectator

    Hi Lily I am a CC survivor and part of my treatment was the 5FU Chemo pump. The pump was connected through my port. You have a bag with pump which is either shoulder or fanny pack. It was inconvient at first but really no big deal, you get use to it. I had it for 6 weeks and the nurse changed the bag once a week. I had it during holidays andit really never showed up in the pictiures.
    Lots of prayers-Cathy

    #51675
    jathy1125
    Spectator

    Percy- thanks for the info. I took Xeloda (8 pills twice a day ) for 5 months, with no major side effects. The Xeloda nurse called once a week and all that was arranged by my oncologist. I also had a 5FU pump 24 hours seven days a week for 6 weeks and no major side effects. All of chemo and radiation treatment was manageable with lots of naps and 3 nausea meds so I always had something in my system.
    Lots of prayers for all in the figh,t we can win-Cathy

    pcl1029
    Member

    Hi,there are 3 reprinted messages here about Capecitabline (Xeloda)side effects.

    As always,consult your oncologist BEFORE any change of your treatment plan.
    Thanks to the CC foundation ,according to the package insert I picked up at the Genentech booth for Xeloda(dated 4/2011).

    #1 Reprinted message about Xeloda side effects.— about nails problem.

    If you are on montherapy only with xeloda; the adverse effect of nail DISORDER is about 7% in a phase II trail involved 162 patients of stage IV breast cancer.
    If you are on a combination therapy with Xeloda,the chance is about 14%,and 2% of them is in the Grade 3 category.(the scale is from Grade1-Grade 4 ,a scale developed to measure the adverse drug reaction of medication;Grade 4 is being the most serious.):the chance for nail DISCOLORATION is 6% .
    Generally,dose reduction of Xeloda may be needed base on the condition of the nails and other related issues until problem resolved ; this is why you should call your oncologist and make an appointment to let him/her to determine what is the best way to due with the problem.You should not change any current treatment plans until you talk to the oncologist.
    There is also a phone # (1-877-987-2487) you can call for support and a oncology nurse who trained about Xeloda will answer your questions about Xeloda 24/7 in 150 languages;it is provided by Genentech,the company that makes Xeloda.and you may need your oncologist to refer you to such a service.

    #2 Another reprinted message as below:—How to take Xeloda correctly.
    Hi,
    Xeloda(Capecitabline) is related to 5FU,a first-line chemo agent to fight CC and colon cancer.It is taken by mouth twice daily (12hr apart)within 30 min. of a meal and with about 200ml or water to flush it down.
    Side effects are diarrhea/constipation ,hand and foot syndrome ,mouth sores and fatigue. For most patients the side effects are manageable using medications.(lomotil,imodium/colace and miralax; creams and moisturizers,nystatin and baking soda mouthwash to relieve the corresponding symptoms.)
    Xeloda most of the time are used with Gemzar ,but it can be used “off protocol” by itself too.
    Under the chemo forum on this web site there is a study call BILCAP done by UK researcher and you can have a glimpse of the side effects percentage of Xeloda.
    the study is on going and up-to date.
    Have a second opinion if you don’t feel you are satisfied with your current oncologist’s treatment plans for your mother.

    #3 another reposted message about Capecitabine (Xeloda)—about diarrhea

    According uptodate.com. and clinicalpharmacology-ip.com

    Capecitabine(Xeloda):
    Diarrhea is a dose-limiting toxicity of Xeloda,and occur in 50-57% of patient.
    11-12% patients taking Xeloda will have Grade 3 diarrhea .
    2-3% of pt. taking Xeloda will have Grade 4 diarrhea
    The recommended dose modifications are as following:(*any change in dosing must talk to your doctors first.*)
    Grade 4 diarrhea:(>10 stools/day or grossly bloody)=discontinue Xedola permanently or physician judgement decrease dose by 50% after diarrhea resolved to Grade 0-1.

    Loperamide and lomotil are the common oral meds to treat diarrhea.
    Octreotide(Sandostatin) is in injectable form used to treat severe waterly diarrhea.
    PS: Grade2=increase of 4-6stools/day or nocturnal stools.
    Grade 3=increase of 7-9stools/day or incontinence and malabsorption.
    if you have any of the above while you are on Xeloda as monotherapy,
    talk to your doctor(oncologist) for dose adjustment.

    #4 a reposted message about Xeloda side effects–The hand and foot syndrome”
    Hi,
    This is for information purposes only,seek doctor advice BEFORE any changes of your current treatment plan.

    The “hand and foot syndrome” you mentioned has been reported in roughly 45-57% of patients who is on Xeloda.(package insert of Xeloda)

    If I may suggested ,make an appointment to see your oncologist to determine the severity of the problem(there are four grades of severity of this side effect;and the treatment will be different depend on the grade of severity.)
    This side effect of the Xeloda is very common ;it may occur as early as 2 weeks after treatment begins. sometimes it may require dose reduction if the problem is severe enough and that is why you need to talk to the oncologist about it.

    Modification of normal activities of daily living to reduce friction and heat exposure ;keep palms and hands and sole of feet using emollients such as Aveeno or Lubriderm; OTC medications to relieve pain,rash and other symptoms(ask the pharmacists for their recommentions ).
    God bless.

    #4b reprinted message about neuropathy of Xeloda from the”Marion collection”
    — a detail oriented message to understand “hand & foot syndrome”.and good tips for helping how to cope with the side effects.

    marions wrote:
    Tom: there are two different kind of problems with sensitivity to hand and feet.

    Nervous System Changes (Neuropathy)

    Sometimes cancer treatment can cause damage to your nervous system. This is called neuropathy (new-RAH-path-ee), or problems with nerve function. Sometimes these symptoms can be made worse by other conditions, such as diabetes, kidney failure, alcoholism, and malnutrition. Most people first notice symptoms in their hands or feet, usually starting with their fingertips and toes. Sometimes, the tingling and pain move up the fingers to the hands or from the toes to the feet.

    Common symptoms include tingling, burning, weakness, or numbness in your hands or feet; sudden, sharp, stabbing, or electric shock pain sensations; loss of sensation of touch; loss of balance or difficulty walking; clumsiness; trouble picking up objects or buttoning clothes; hearing loss; jaw pain; constipation; and being more – or less – sensitive to heat and cold.

    Symptoms can start when you begin chemotherapy or after treatment. If they do, tell your health care team right away. Symptoms can improve over time, but it may take up to a year or more.

    Treatments include medications, topical creams, and pain patches.
    Other approaches include acupuncture, physical therapy, and exercise.
    Managing Nervous System Changes

    Be careful when handling knives, scissors, and other sharp objects.
    Avoid falling. Walk slowly, hold onto handrails, and put no-slip bath mats in your tub or shower. Remove area rugs or cords you could trip over. Steady yourself when you walk by using a cane or other device.
    Wear tennis shoes or other footwear with rubber soles.
    Use a thermometer and gloves instead of your bare hand. These can help you avoid being burned when checking water temperature. If possible, lower the temperature setting on your hot water heater.
    Allow yourself time to rest.
    Copied from NCI website.

    The other is:
    Hand-Foot Syndrome (Palmar-Plantar Erythrodysesthesia; PPE)
    which can occur with several types of chemotherapy or biologic therapy drugs used to treat cancer. (Capecitabine (Xeloda

    #51534

    In reply to: dad diagnosed with cc

    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.

    #27412

    In reply to: Good reports from Mayo

    linda-wife
    Spectator

    Dear Lainy,
    My husband is 43 years old. We are currently being treated at the University of Virginia but I have recently reached out to Mayo in Jacksonville, FL. We are waiting to hear back, as I have faxed the MR I have hear and are waiting for UVA to fax the “newer” stuff. Our current oncologist was not pleased that I was questioning her proposed plan of action. Our scan results came back mixed: local lymph nodes that had been effected have come down in size but it appears as though sometime between the initial scan ( with 3.5 wks of prior to initiation of tx) and the second scan last week we have seen increase in number and sl increase in size of existing tumors in liver. We are changing to Oxaliplatin + 5Fu on Monday. Our results so far are so mixed…… he feels OMG sooooo much better than prior to chemo initiation and all chemstry profile reuslts are within normal limits with the exception of AST which is nor only slightly elevated. Any thoughts?

    Thanks to All!
    Linda

    #51446
    pcl1029
    Member

    Hi,Katie,
    If possible,please quote exactly the part of the CAT SCAN report directly about the”20-30 nodules “so that I will have a better idea about your mom’s condition.
    Can your also provide the blood work(inside the BMP report) of ALT,AST and ALK Phos and tol.bilirubin,CEA and CA19-9 and or AFP if you have them?
    I am not a doctor,I am just a patient but I think I can help you in understanding your mom’s case a bit more.
    Gamzar/cisplatin;Gemazr/Oxaliplatin;Gemzar/Xeloda are systemic therapy to name a few;5FU and bevacizumab or erlotinib are among others.
    Depends on your mom’s condition,location of the nodules,other non systemic treatments such as RFA,chemoembo and Sir-spheres are available in the radiology department of hospital.
    In the meantime,
    God bless.

    pcl1029
    Member

    Hi,Marion,
    Thanks for this info.,I will never have enough time to search everything and read everything;that is why everybody’s help is vital .Thanks again.
    Our livers produce cholesterol and cholesterol produces bile acids to digest proteins and fatty acids in our small intestine .Statins are used to treat high cholesterol by inhibiting the synthesis of serum lipids and triglyceride.

    In this study ,only the HYDROPHOBIC statins(atorvastatin-Lipitor,simvastatin-Zocor,lovastatin-Mevacor and pitavastatin-Livalo) can provide the added benefit of induce apotosis and inhibit proliferation in cholangiocarcinoma cells.Other statins like Pravachol,cerivsatatin are hydrophilic and will not have the same benefit.
    The pre-treated cholangiocarcinoma cells with statins (in vitro) after 96 hours indicated that the future of inclusion of the statins in anticancer treatment regimens may reduce the amount of anticancer drugs used( such as 5FU,Gemzar and Cisplatin) and therefore the side effects that come along with them.
    God bless.

    #5358
    wallsm1
    Spectator

    Hi everyone. My name is Susie and I’m 31 living in Portland, OR. I had a liver mass discovered in April and underwent a left hepatectomy in May of this year. They also removed my gall bladder. It turns out I have stage II cholangiocarcinoma, the intrahepatic kind. I have no mets, negative lymph nodes and clean margins but my tumor was about 5 x 6 cm, so kind of big. I am recovering well after surgery and pretty much feel back to normal. My issue is I’m concerned about the next steps. I have gotten different opinions on additional treatment. I received my surgery at University of Pittsburgh Medical Center and was told I will need adjuvant chemo, either 5FU or Gemzar plus or minus Cisplatin. However, I live in Oregon, so that is where I am getting my follow up care. I am now receiving follow up care at Oregon Health and Science University and I was told I should get 6 weeks of radiation and maybe some oral chemo instead of what UPMC recommended. So, needless to say, I am confused about who I should listen to. I’m thinking about getting one more opinion. From what I understand, neither radiation or chemo has been proven effective, especially on someone like me who had the whole tumor removed. Does anyone have any experience with anyone my age having this? It seems so odd to me. I don’t really have any past medical history and have always been healthy. I was told cc has been increasing in the US for unknown reasons.
    This is such a wonderful site. I was so happy to find it. I’m sorry there are so many others on here going through the same thing. Best of luck to you all!

    #51158
    pcl1029
    Member

    Hi,
    Gavin lives in Scotland,I Think his help is valuable .you can connect with him.
    What stage the ICC ? Besides chemotherapy,radiation,chemoembolization are other choices.2nd line chemotherapy like 5FU alone or in combination with other chemotherapy agents in the platinum group or with molecularly targeted agents like Tarceva are other choices.
    As always,consult doctors for 2nd or 3rd opinions are highly recommended.
    God bless.

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