pcl1029
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Hi,Gavin,
Increase the clinical efficacy by 33% of Gemzar is a lot.( by tamoxifen)
You are awesome.I have already put it in my survival folder for further study.
again, It might take one person to built Rome in thousand years, but if we all try together,it may just take a decade. Thanks.
God bless.Hi,
If I may suggest-
If the liver lesion is 6.5cm after neoadjuvant chemo like your father had;liver resection can be performed if not contraindicated due to location of the lesion or other metastasis;Radiation like PDT,EBRT,SBRT are choices too; if your father’s CC is ductal ;5FU or gemcitabine chemotherapy are options.
If you can find out what are the drugs in your father’s “chemo cocktails”,
It may be of interest and benefit to the CC patients here.I personally appreciated if you can do that for this web site.
Ask the doctor to prescribe anti-depressants if you dad wants them- like Prozac,Paxil ,Remeron,etc.
One of the POSITIVE side effect of anti-pressants,esp. the newer ones like Remeron is gaining weight.
CC is a long and winding road and require knowledge and courage to due with it.
Your dad is the lucky few to be in the ” partial response” category to his CC.
But will not be out of the wood completely soon. You will be with him on his CC journey for quite sometime to come. and he will definitely need your help in prolonging his life or cure his CC. And please forgive me to be so frank in suggestion
God blessHi,
additional info. related to thymidylate syntase (TS)as a marker for drug effectiveness.
http://www.ncbi.nlm.nih.gov/pubmed/20944490
http://www.ncbi.nlm.nih.gov/pubmed/15309542
http://www.ncbi.nlm.nih.gov/pubmed/14519634
http://www.ncbi.nlm.nih.gov/pubmed/20387074God bless.
Hi,
Dr. John Brems 1-847-695-6600; excellent liver and abdominal surgeon,clinical professor of surgery,Loyola University in Chicago. I was his patient 2 years ago.But most importantly, he is well respected by his peers in the GI surgical filed.He is currently also the surgical director of Center for Advanced Liver and Pancreatic Care at ShermanHealth System.
God bless.Hi,
Do not worry,as far as I know,Italy is in the forefront of treating and researching in the cholangiocarcinoma. Try to check out the web sites of the Fatebenefratelli hospital in Milan or the medical oncology dept.,A.O. San Carlo, in Potenza or the oncology unit at Azienda Ospedaliera Giovanni Paolo II Sciacca at Palermo Italy. All of them had done research on CC.You are the first one that I encountered with a Precise diagnosis stage(T3,N1,M0) and you also indicate what type of CC.(Hilar CC);This helps me a lot in trying to find good information and answer for the problem for you.
According to
ESMO(European society of medical Oncology) guidelines;
Options included PDT (with chemo if a large mass is visible radiographically) ,palliative chemotherapy alone or concurant chemoradiotherapy. chemotherapy .
NCCN(the National Comprehensive Cancer Network) suggested the use of 5FU-based chemoradiotherapy with conventional fractionation radiation therapy (EBRT).Conformal treatment planning is preferred if available.For recurrent CC, EBRT, brachytherpy,
stereotactic radiotherapy(SBRT),PDT(photodynamic therapy) and systemic chemo.
PDT shows good results for ductal CC;Chemoembolization with RFA show comparative good results for spots in the liver smaller than 3-4cm .(as compare to liver re-resection).
So,do not worry too much,there are still a lot of treatment options for your mom compared just 5 years ago;and Italy is a good place to start for CC treatment.You are in good hands in Italy .
I hope the info. helps.
God bless.Hi,
Just let everyone knows,In one session ,one guest ask the panel of speaker doctors at the DDW conference 2010 on 5/9/11 about the dose of non-prescription dose of vitamin D3(Cholecalciferol). Dr. Doris Strader mentioned should be 1000 IU/day and I just want to pass it along .
As normal dietary supplement the dose of is D3 400-1000 IU/daily(Drug Facts and Comparisons-a bible of sorts in every drug store or computer)
Take calcium along with vitamin D3 daily too; and watch the kidney function for early signs of taking vitamin D3 and calcium too much.
God blessHi,
Please read under the discussion section-topic under “Help! Post Recent Liver Resection…” to get some ideas about my case study as well as others.
1.It sounds like there may not be enough negative margin for the surgery(R0) for your Dad.
2.Recurrence is very common (50-75%) especially for intrahepatic CC (ICC).
3.There are patients on this web site that are 5,10 and 15 years survivors.
4.Please read my case study for the Gemzar as treatment option and duration.
5.CEA and CA19-9 are not good markers for monitoring ICC.The trend may be of value to some patients but not others(this is if you obtain values for each of them each month like me and make a log,they are still within the normal range).However they are more useful in monitoring extrahepatic CC.Do not worry about the future of your dad’s outcome;nothing you can really do at this time. He will do fine for now.Come back to this site often and learn from the experiences of others and related knowledge to help you understand this disease;in turn you will make your dad and others down this long and winding journey of cholangiocarcinoma easier and more fruitful in terms of knowledge,hope and treatment outcome.
God blessHi,Kurt,
I never use this site,but it looks ok to use except that I am afraid who will evaluate your case? Are they doctors or nurses who specialized in cancer or just discharging planners in the medical field? Or even worse,they are just trained office workers.Also if one clinical trial pays them better,will they try to get you there instead of the one that you may really needed?
Most of the clinical trials are university hospital based and most likely they will be far apart for the each clinical trial if not the only one available to that region.
By the way,the site” Emerging med “only list bile duct cancer under the general search term of liver cancer.
Also,as I mentioned in the other replies,there are a lot of side effects for those molecularly targeted agents (the anti-EGFR agent like erlotinib can cause pneumonias which can be fatal. or the angiogenesis inhibitors like bevacizumab(Avastin) can cause hypertension ,liver abscess and colon perforation.) The other concern is that drug resistance can be developed for all those targeted therapy drugs ” nibs and mabs ” and you may consider that as well.As a matter of fact our Gavin provided this link in Feb.2011 http://trialx.com/curebyte/2011/02/26/cholangiocarcinoma-studies-in-rochester-minnesota-mn/ .
and this is an other way to find clinical trial near you.All you need is to put in the zip code and it will show the clinical trial location near you;but again the above caution that I mentioned still apply.
I hope the suggestion helps.Hi,
Let me share my story and hopefully of benefit as an ongoing a case study.At age of 57, I had acid reflux off an on for a couple years taking Pepcid ,the H2 blocker to relief sx. Lost weight for about 5 lbs over several months during 2009. ,drink 3-5 cups of coffee daily. Taught part time twice weekly in college in addition to regular day job since 2008.(may be the added stress decreased my immunity and CCA started to grow. I am also a chronic hepatitis B carrier since birth.)
May2009 diagnosis=intrahepaticCC stage IIB new classification=stage 3
June 2009 left lobe resection,with clear margin 1.5cm. do RFA on 2 spots remaining on the right lobe .no metastases to other parts of the body.
August 2009 start Gemcitabine 3weeks on and one week off,then drop to 2weeks on and one weeks off. for 14 months ;PET/CT scan(that is PET+CT (WITHOUT contrast) every 3-4months till
October,2010 with no recurrence.;Oncologist give me three options for the next step of treatment
1.no more chemo
2.continue gemcitabine
3. start prophylactic dose of Xeloda(capecitabine) twice daily.1000mg twice daily after meals with a full glass of water;14days on and 7 days off =1cycle.(result not proven,more or less is his clinical judgement and experience)
Since there is no way I could know whether the gemcitabine is really working if I continue to take it forever.and I think I can try prophylactic dose of Xeloda later.
I choose no chemo but switch to CT scan WITH contrast to monitor the CC.
Sometimes PET/CT will not show any activity of the CC if you are still under chemo treatment because the chemo slow the growth of the CC but not completely kill it.
April,2011,CT scan WITH contrast reviewed a new growth(different site) of 1.5cm;MRI a week later discovered another new growth of about 2cm.(MRI is better in finding liver lesions <2cm in size)
May,2011 my liver surgeon indicated that the lesions are small enough that chemoembolization and RFA will take care of the problem;no need to have re-resection (a major surgery compare to chemoembolization with RFA) Chemoembo is using the chemo to surround the tumor and starve off the blood supply to the tumor;RFA is applying radiation to the middle of the tumor and kill it.
5/10/2011,I had the chemoembolization done with mitomycin and Adriamycin .the procedure took about one hour total for the 2 lesions and was well tolerated.I spent 1 day in the hospital just for observation. I was given prescription for Levaquin 500mg orally daily for 5 days for preventing infection from the procedure.
5/23/2011 ,I had the RFA(radiation frequency ablation) done on the 1.5cm spot in the liver total time in OR and PAR was about two hours,the actual procedure time of the RFA was only 45min.(4cm in dia. of burning to obtain a larger negative margin) ; they could not do the same on the other spot;it is too close to the diaphragm and abut to the hepatic vein and I need to go back to have an resection to take it out .
Again the RFA procedure was well tolerated and I spent one day in the hospital for observation. Levaquin RX for 5 days again was given to prevent infection . No chemo is needed at this time. the chemoembo will take care the CC until they will perform the resection.CEA value by half to 0.8 and CA19-9 dropped by 10 points to 16 for just that one tumor by RFA.
October 24 2011,resection was performed on the 2.3x3cm tumor ;completely resected.I also used the tumor tissue to order “Target Now” biomarkers report from Caris Lab for chemo sensitivity reference to be used in the future.This time the CEA went up by 0.4 to 1.2 but the CA19-9 dropped from 26.4 to 21.4 one month post-op.
“As of Feb.2012, the ASCO still indicated that the “Target Now” chemo sensitivity report and other bio marker lab test of chemo resistance or for diagnosis or prognosis purpose beyond clinical trial settings are of no PRACTICAL value in the overall cancer treatment plans.( I am KRAS wide type , EGFR positive ,tumor is moderate differentiated.)”
November 24,2011 per oncologist to start Xeloda 1500mg twice daily.a month later,2-3 diarrhea/day and redness of the palms and minor skin peeling and cracks prompted him to decrease dose to 1000mg twice daily.PET scan to follow in a couple month.
On December 29 2011, I went to Mayo for a 2nd opinion on oncology medical and hepatology consult. Standard chemotherapy without targeted therapy was given as treatment if current one won’t work later; at this point, the medical oncologist agree with the Xyloda BID regimen,but only for six month. Hepatologist consult went really good,MRI and MRCP was performed on site and biloma ( 9cmx5cm) was discovered but appeared as long as there is no infection , pain , fever or chills developed,it will be fine. The biolma will self absorbed and can be disappeared over time.. And I don’t have any symptom .Nexavar was mentioned as a potential targeted therapy that I may consider if needed in the future.
10/9/2012, follow up PET is clear. Medical oncologist follow up recommended to continue Xeloda maintenance therapy for 2 more years.
2/22/2013 labs normal, bilirubin=0.7 MCV=107, RBC=3.78 WBC =7 , I believe the above higher MCV and bilirubin is related to the side effects of Xeloda; I will take B12 ,ferrous sulfate 325mg and one multivitamin daily to resolve my anemia . Liver enzymes AST,ALT are normal but the ALK phosphate=34 is a bit lower than normal .I think that is because I took vitamin D3 2000 unit a day also and I may need to cut it down a bit. My CEA=1.8 and CA19-9=21.
Currently(2/22/2013), I take 1000mg Xeloda twice daily , 2 weeks on and one week off till otherwise; I also take Oncozac ( yunji extract,雲芝)3 capsules twice daily as an immunostimulant ; Coumadin as blood thinner for DVT; Celebrex 200mg twice daily as antiinflammatory agent that may help to fight cancer,Entecavir 0.5mg daily for Chronic Hepatitis B and Tricor 145mg daily for marginal high level of triglyceride; multivitamin once a day with B 6 , B12 ferrous sulfate; potassium tablet and neutrophos packet for low potassium and phosphous level as needed.finally, I am trying ,on an off and on,as needed basis the “shi quan da bu tan” 十全大補湯-in Chinese herbal practice or called (juzen-daiho-to)in Japan Kampo herbal list I try this complimentary herbal medicine on off days of Chemotherapy it helps me when I am feeling lightheaded and tired due to anemia and fatigue.
3/4/2013 CT scan shows the biloma decreases its size from 9.4×3.7 to 6.8×2.5 & the femoral vein thrombosis resolved and no new lesion is found.So far thru my research,there are no effective chemotherapy for recurrence of CCA.
RFA, microwave ablation , IRE,TACE and radioembolization are non-systemic treatments that can extend my survival time as an intrahepatic cholangiocarcinoma patient and the PDT and IMRT (ie: Cyberknife),,nano knife,SBRT are treatments for Extrahepatic cholangiocarcinoma patients.
But none of the above treatment choices is a cure for CCA.
Only surgery can provide the onlypossiblecure for CCA.
and the recurrence is high (50-75%) for CCA.Of course, everybody thinks differently.In my case,I want to find out whether I need to be on gemcitabine forever and I make the decision with the best way that I know how to monitor my CC. so when the CC come back,I still have a better chance to deal with it. As a patient, I can say the 14 months of gemcitabine treatment is difficult both psychologically and emotionally.I cannot imagine of having the Gemzar for life . Of course, I want to live at least up to the national average of 78.5 years for males.
(I am 63 as of 2/2013.)
For those patients who have been on chemo regimens other than just Gemzar,I tip my hats to all of you for enduring such unkind treatment;for I know most of the side effects thru my practice.Sometimes as a PATIENT,your gut instinct may serve you well.
At this point I will not attempt to use any of the targeted therapy agents because of the toxicity or herbal medicine except as above because of the unproven benefit. And because recurrence is very common(65%),I think I have no choice but to accept it and I will continue to learn more about this disease and share with you about my journey.
Finally, as recurrence is very common , try to view CC as a CHRONIC disease like our Marion said may not be a bad idea, like hypertension or diabetes ,then the negative psychological and emotional impact will be much less for the patients as well as for the caregivers when we first heard of this disease and we can devote more positive energy to prepare learning and treating the cholangiocarcinoma at hand.
God bless.Hi,
As a group of drugs known to inhibit the epidermal growth factor receptor(EGFR),ie,gefitinib,cetuximab,panitumumab,erlotinib(Taceva) and laptinib;Acneiform eruption is one of the side effects that is quite common(up to two-thirds of patients who receiving them.(although severe in only 5-10% )
But there is a consistent POSITIVE corelation between the severity of the acneiform rash and the antitumor activity.
Treatments include the use of topical benzoyl peroxide,retinoids and antibiotics. oral and topical diphenhydramine and other nonsedating agents for rash.
I hope the info. helps.Hi,
My suggestion is that,if the liver lesions is small(ie, ( fewer than 4 spots)and not metastasized to other locations, ablation(RFA) or the combination of embolization and RFA may be another option.
God bless.Hi,
it will help me if you can tell me which clinical trial or trials you are interested in.
Systemic chemo agent s only or combined with radiation?
In general, 5FU and gemcitabine are the 2 first-line chemo agents used the most.Cisplatin,oxaliplatin,carboplatin(the platin group),epirubicin, irinotecan are the other agents being used too.
For systemic therapy clinical trials that are available,most of them are adding one or two molecularly targeted therapy agent(ie, all those agents the names ended with nib or mab) to the first-line agents to see whether the combo is more effective and/or produce less side effects.
But again, the most important thing is to know exactly what kind of CC first;where is it located and how advance the stage the tumor growth is.” The role of systemic chemotherapy is evolving in patients with advanced cholangiocarcinoma.No single chemotherapy agent or combination regimen consistently leads to tumor shrinkage,forestalls recurrent obstruction following palliative intervention.” from the literature review version 19.1 revised on Jan.2011 : uptodate.com
From the patient’s point of view,I do not think it is our responsibility to choose which clinical trial for our self; for our knowledge is very limited.It should be the responsibility of the oncologist, and other specialists to make the final call base on the diagnosis and findings they made.
But we,as patient or caregiver,should learn as much as possible,before,during and after the treatment;to question the specialists,the oncologists and other health professionals;to keep them on their toes and in return hoping that we have tried our best for our love ones and what we do will be of benefit to others who are also suffer from this disease-it is for sure a long and winding road that required courage and knowledge to navigate .
God bless.Hi,
I forget to mention that” gastrointestinal perforation”(ie,colon perforation,liver abscess) is also a side effect for that clinical protocol due to the molecularly targeted therapy drug Avastin,which received the BOXED WARNING on 5/2009.
(about 2.4%)
God bless.Hi,
It 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.
Have a second opinion if you don’t feel you are satisfied with your current oncologist’s treatment plans for your mother.
I hope the info. helps.
