Topic: My personal case study & history of cholangiocarcinoma treatment
Let me share my up dated story as of 12/1/2013 and hopefully of benefit as an ongoing case study in intrahepatic cholangiocarcinoma.
At age of 57, I had acid reflux off an on for a couple years taking Pepcid ,the H2 blocker to relief Sx. Night sweat may be once every several months ; 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.) other than that, no specific symptoms, may be at time feel a bit tired .
May2009 diagnosis=intrahepaticCC stage IIB new classification=stage 3
June 2009 left lobe resection,with clear margin 1.5cm. do RFA on 2 spots
during surgery,on the remaining right lobe .no mets to other
parts of the body.
August 2009 start Gemcitabine 3weeks on and one week off,then drop to 2 weeks on and one weeks off. for 14 months; CT or PET/CT every3month ,CBC ,BMP CA19-9 and CEA every month.
October,2010 with no recurrence.;Oncologist give me three options for the next step of treatment
1.no more chemo
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 2hour 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 . newer procedure call IRE (irreversible electro proration) may provide additional hope rather than to have resection again. IRE only be available more widly in2013.
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 from that one tumor by RFA. In my case, a gradual increase of 6-7 points in a 3-4month period ,or an increase of a 7 point jump in my Ca19-9 level in a one month jump, appeared each time before the next recurrence.
October 24 2011, 2nd 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 , BRAF negetive and EGFR positive ,tumor is moderate differentiated.)"
Now after the 3rd recurrence( 6/2013), 2out of 3 oncology consult recommend me to do a full gene sequence for the possibilities to find additional gene and personalized threatment in the future.(7/25/2013 entry)
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. Nail color change and fatigue ,higher MCV and total bilirubin value are observed too. PET scan to follow in a couple month.
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.,mTor c- met inhibitor also mention.
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 . My CEA=1.8 and CA19-9=21.
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 9.4x3.7 to 6.8x2.5 & the femoral vein thrombosis resolved and no new lesion is found.
6/11/2013 CT scan shown 1.5cmx1.6cm peripherally enhancing lesion is noted adjacent to the surgical resection/surgical clips near the surgical site of the resection bed 18 months ago. It is unresectable per surgron .No other signs of lymphadenopathy is seen. As always, my oncologist will order a PET/CT scan to follow and check the Tumor ACTIVITY(functional rather than structural as shown on CT scan.)
CA19-9 jump from 20 t0 27 in a month( 7 points, the most in the monthly lab monitoring ); the highest is 37 before my first resection in May 2009; the CA19-9 without tumor lesion and under chemotheraphy is between 14-20 each month;mostly in the 17-21 range. and very seldom change more than 3 between each month. The last time for the 2nd resection is a jump of 7.7 point for the 3 month period preceding of the CT scan that shown recurrence.
6/17/2013 PET scan reviewed in addition to the 1.5x1,6cm (on CT but total measurable area on PET is 2x2.0cm) lesion(with SUVmax=4.5); there are also hyper metabolism at the resected margin of the liver on the other end which there were no definite associated lesion( but total measurable area=2.3-2.6cm on PET)can be seen but with as SUVmax=4.5 ;The last new lesion is 1.8x0.9cm soft tissue density with hyper metabolism SUVmax=4.5 which is compatible with a metastatic lymph node in tumor activity.
6/25/2013 Chemoembolization on the 1.5cmx1.6cm tumor and the surgical bed area to decrease the tumor activity and prepare for the RFA 2-3 weeks down the road for additional tumor control.Levaquin 500mg q day x5 days and resting at home without any side effects;
Radioembolization will be only used after the RFA attempt fail to the surgical bed area(RFA may have problem with the surgical clips in that area.)PEI for the lymph node( will do it twice separated by a couple month for more effectiveness and may have to do it twice and if it does not work, then IRE or taking it out by surgery.And the radioembo can be repeated up to the maximum radiation dose allow per that site.
6/30/2013 I have decided and will use sectional radioembo for the tumor bed /clips areas(2.5x2.6cm of no defined solid tumor appearance); and will use RFA on the tumor(1.5cmx1.6cm with solid tumor enhanced ring appearance) near the hepatic vein which made my case unresectable at this time.
If the PEI will not work at the lymph node after repeated injections, then I may seed help from either IRE ,cryoablation or surgery to remove it. This is the one area that I worry the most at this time.
7/2/2013 have PEI (Percutaneous Ethanol Injection) on the suspected lymph node areas. It went very well, the whole procedure took about 45 min. and I was under 5 mg of Versed and 150mcg of Fentanyl for semi-sedation. The nurse prep my back with antiseptic;I was on my stomach during the entire procedure and under CT scan measurement ;after determined the location of the needle insertion, Dr.Carvillo only injected 3ml of "absolute alcohol" for the lymph node due to its relatively small size (2-10ml of absolute alcohol is the normal range, depending on the size and number of the lymph node). I rest for about two hours in the post-op unit, ate a large dinner and went home the same day without needing any prescriptions for pain and antibiotics.
7/4/2013, after Mayo Dr. Roberts and university of Maryland Dr mMoesteiln, both agree the RFA Can be use for the liver,and IRE or cryoablation can be anther choice for the lymph.node. So I choose RFA instead of Radioembolization.
7/9/2013 will be using RFA on the two same spots where was treated by chemoembolization on 6/25/2013 before. I finally decide not to use the radioembolization this time on the tumor near the surgical bed/chips area since two out of three interventional radiologists agreed that RFA can be done on that
And I myself still have concern about the radioembo procedure.
7/10/2013. RFA performed as planned about 2 hour and under general anesthesia, so I could not report anything live to your guys. I only know later the Tumor is in such a difficult location that she had planed for a while to choose the best RFA route to go into the tumor and not touch my diaphragm and the hepatic duct, what a patient doctor. I stay over night for observation and release me to my wife to drive me home. Vomit twice it was green in color and total is about 2 regular coffee cup in size ( 12oz)i want to know without zofran , how long it will take for the first vomit, it is about 4 hour after surgery, what a relieve feeling after vomiting . finally in the early morning I request IV zofran before bfast, because if vomit cannot be controled, i cannot be discharged in the afternoon .The RFA is under genreral anesthesia for four hour, part is for getting tissue for the tissue bank for Mayo Clinic, part of is hour procedure is to burn of the tumor that Dr. brems(the surgeon) said is. unrecectable. It is in a very difficult position, but Dr. Carrillo, she takes time to make sure every thing is burn, she also indictated my lymph node getting smaller. She truly care about the patient a lot.and that is why I choose her.
7/15/2013 after 4 days of fatigue, lack of energy, no appetite, now an then shortness of breath,no mood of doing anything except sleep. But there were no pain, BM is normal,no n/v , no fever and the only script was Levaquin 500mg po daily x 5 days. A little bit of energy comes back today.
Wow, last time for the same procedure ,it only took me one day to recover, I am getting old now, the treatments and the chemotherapy did take a toll on me. I stop use most of the medications and herbals mentioned above except Coumadin and the vitamin D 3 and Oncozac. I also try to eat more vegetable .
7/24/2013, I will get a 2nd opinion and meet my oncologist, definitely no GEM/CI S;since my CRCL is < 50. GEMOX 6-8 courses may do the job to mop up the loose tumor cells; let see what is my other 2nd opinion is first. Since I have lymph node involvement, I am in stage IVa in the new classification of ICCA.
7/25/2013 Both the oncologist consult recommended Tarceva base on the "Target report NOW" done after my 2nd resection and recurrence 2 years ago.
I shown the consultation opinion to my oncologist doctor and friend and he concur and write a RX for me to take Tarceva 150mg daily. Originally, my oncologist suggested GEM/CIS; I reminded him my kidney function (CRCL=55) may not be the choice for GEM/cis; so he sit down,looked thru the available treatment plan for CCA from NCCN guidelines and OK the Tarceva. Well, here is one thing i want patients to know, you have to know your own labs and health conditions before you talk to your physician.
(get a copy of the lab from the medical records dept. 2-3 days after the lab work are done, look at the abnormal values first for each item, it may or may not be useful separately; But try to at least understand the lower limit of platelets( to determine whether you can have chemotherapy like gemcitabine if <50,000,this is the lowest limit and need to skip the treatment?;75000 is better;100,000 is by the book),WBC ( -way too. low of the WBC,ie: 1-3 , neutropenia? ,Need Neupogen shots ? or too high-- may have an infection?and hemoglobin and hematocrit ( relate to your red cell production and hydration status,ie; Hb<7 or 8 , needs blood transfusion or epogen shot?;Hct<the normal may relate to dehydration, drink more fluids before you go for treatment or hydration thru IV before the chemotherapy will help watch the value of protein and plasma, it may relate to a lot of biological functions like drug absorption, disease condition and ascites.;the creatinine (CR 1.5 or higher)or CRCL the filtration rate of your kidney,usually should be >55-60 depends on the lab you deal with is related to the kidney function;. the bilirubin and as well as the ALK,ALT and AST is related to the liver ; the PT/INR(2-3 is normal) is related to blood colts formation orother heart and lung problems. these are basic things a patient or caretaker should know the High and Low value and what that GENERAL mean. This is to assist yourself to improve the odds,to less mistakes but by no means is absolute. Unless the value of the lab is VERY different than the previous one, most of the oncologists will keep the same regimen until disease progress or intolerable side effects occur. So be polite when you discuss your concern with the all the doctors including surgeons,and radiologist and your GP. The key here is to let your doctors know you have knowledge on your disease and condition. In this subtle way, the doctor will think a little bit more before he prescribe or perform treatment on you, and you, as the patient will be the one who benefit from it.
But you can always ask the oncologist gentlely what this and what that means if you want to discuss a specific chemotherapy or targeted therapy with your oncologist without going thru the above preparation. The above are simple ways are let you to understand part of the reason why patient has to have lab work done each time before chemotherapy and a lot of other things will be looking into and considering by the oncologist before starting the chemotherapy.
If you are not sure what to to,just hold out the lab work paper and ask the oncologist politely ,especially when therapy required changes to new prescription.
The oncologist may not like it,but it is your life or your love ones future and what is more important than that?
I find out that the younger oncologists are much open to discuss therapy choices and genetic information and test than the more established ones.but always be respectful to their ideas and professionalism.
I believe their knowledge base are more current and open to new ideas.
7/31/2013 will have another PEI done to ensure the success of the same treatment with PEI about a month ago in my retro carval lymph node.and at the same time will ask my interventional radiologist to check on ,thru CT scan ,the other procedures results she had performed as well.
9/30/2013 the September PET scan report shown still have tumor activity in the lymph node area(SUVmax 3.9 as compare to 4.5 2month ago; the activities in the liver lesions both decreased to SUVmax 3.5); therefore will have the cryoablation for the lymph node on October 2nd hopefully once and for all to get rid of the mets by freezing them to death. I have been on Tarceva daily for 2 months now, side effects is minimal ,diarrhea once a day at the beginning,loperamide take care of the problem;acne/rash after a couple weeks of treatment,doctor prescribe doxycycline twice a day and moisturizing cream to take care of the problem. Fatigue and under the skin itching on trunks at times and change of nail color( become darker). CBC,BMP are normal, PT/INR=1.8, that means I need to increase the dose of Coumadin ,CEA=1.4 and CA19-9 =26 are the same as after the RFA and PEI a month ago.
PS: the SUVmax cut-off point(whether the activity is cancer or not) are different from each organ and tissue area.(means the value is relative and not absolute .The best is to use PET to compare PET done in the past to obtain a baseline of referrence .)
October 2, 2013 at 2PM ,Cryoablation of the lymph node completed,take about 90 minutes, Under CT scan guidance and under anesthesia but not general,Versed and Propofol mainly. It is an out patient procedure.
Woke up about 60 minutes to 90 minutes later in PAR(recovery room), dull pain at the incision site where the cryoablation probe were used. Ask for a few times of Iv Fentanyl injection to control the pain.
Vomited once ( side effects of the prolong anesthesia) ,Zofran was given once and under control. Tired and napped for a couple hours and discharged 4 hours later into the night. Dr. Carrivllo ( the interventional radiologist, IR )did come in and say the lymph node was ablated .(I was told cryoablation can tell ,in general, the result right away due to the frozen and thawed and frozen and thawed process twice done to the lymph node .) Did not feel to eat anything and went to bed right away. Next morning wake up early at 5 am ,hungry and eat a big breakfast. And a good lunch.
Ps. If you are on Comadin or Lovenox, ask the IR OR your oncologist how many days you should stop the anticoagulant before the procedure if needed.( it tooks me 3-4 days to get the INR down to accepted value .)
10/18/2013 Next Generation sequencing by Foundation One was done through the help of Dr. Jalve Milind, 2 clinical trial is listed as possible treatment for mutation of TP53 and CDKN2A/B.
11/18/2013 2 month after cryoablation to lymph node, "the nodular activity ----- is more prominent in the interval,however the SUVmax=3.8 has not significantly changed; the other 2 spots in the liver" have decreased in conspicuity(ie: obviouness) in the interval,however the SUVmax values have remained the same as described." In short overall is stable.
I just get a 2nd opinion on the treatment from June to Nov.18,2013 by Northwestern University ;They are very helpful with regard to the specific questions I asked and the 2nd opinion is free of charge.I highly recommend Northwestern for interventional consults if you need them. NW indicated the Tarceva works on the 2 spots of my liver, and it is too small , therefore no RFA or microwave ablation needed for now ;Tarceva may also work on the lymph node too ,most like is the case,but it needs another PET in 3 months to confirm at the lymph node site. At this point the current PET (11/18) is too soon to tell
whether the prominent interval may be due to inflammation cause by the cryoablation or the disease state. They recommend TACE or radioembo for future treatment consideration if needed.Resection if needed, should be done by the previous surgeon since he was more familiar with the case(ie:scared tissue etc.).BTW ,I still have 2 more opinions and will let you know if anything different.
( The following was done at the beginning of July) in addition, I am waiting for a 2nd opinion from Dr. Lewis Roberts from Mayo, and blood sample will be send next week for his research. I have also attached the Caris Life sciences Target Report on the tumor tissue of my last resection and sent to him just in case of any research value in the future.
and will clarify more on the acceptance of the IRE procedure (the 2nd opinion from university of Maryland for IRE consult.) before making my final decision on my unresectable situation.(see above 7/2/2013 addition comment).
So far thru my research,there are no effective chemotherapy for recurrence.
RFA, microwave ablation , IRE (irreversible electroporation),TACE (chemoembolization), PEI (percutaneous Ethanol Injection),cryoablation and radioembolization with y90(glass or resin) are non-systemic interventional radiation 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.
Even Only surgery can provide the only possible cure for CCA and in my case, the CCA COMEs AROUND every 20 month after resection with chemotherapy.this is not a long term cure but a chronic disease that require a lot of decisions to be made after reading and attending a lot of seminars.it is indeed a roll-coaster ride.
the recurrence is high (50-75%) for CCA.But if you can discover the tumor recurrence earlier (ie: sizes of the lesion or tumor</=3cm and not more than 3-4,even with a few lymph nodes involvement; IRE, cryoablation, RFA with chemoembolization can extend the life and qualitity of life for those who is not resectable.
Again ,the KEY is EARLY DETECTION by CT ,MRI (both are for structural change of the tumor and if the scan is positive,then follow up with a PET/CT to find out whether the tumor is active and you may also be able to detect additional lesions like my case with tumor activity but still have not the tumor appearance on the CT scan (it is difficult for CT scan to detect tumor</=1cm in size; MRI can be better in detecting lesions</=1cm.)
Finally, as recurrence is very common (50-75%) , 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.
For understanding about ultrasound ,CT,MRI and PET scan see the link below.
For systemic chemotherapy individual agent and the regimen,the link below May be of help.
For intervention radiology option, check out the link below