pcl1029
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Hi,
Have your mom had a MRCP done to detect the possibility of CCA or stricture in the common bile duct or the distal portion of it?
If your mom have already had 2nd opinion by the liver specialist ; the next logical step will be an interventional radiologist consult to see whether radioembolization for the large size liver tumor is appropriate ,radioembo if indicated will have less side effects than 5fu+irinotecan; After the MRCP procedure,if there is stricture in the common bile duct ;then explore the possibility of PDT or cyberknife as well.
I will do more study on your biopsy report and to see what my histologist friend’s opinion on your mom’s result will be ,by the weekend if possible.
I still do not understand the change of the regimen away from Gemcitabine and Xeloda. 5FU+irinotecan is tough to take;grade 3 and 4 myelosuppression depression may develope .
Remember, the treatment triangle for CCA(as well as for most cancers but not all) are surgery,chemotherapy and radiation treatment.
Did your mom had CBC and CMP lab done and are the liver enzymes within the normal range; Neupogen(filgrastim) or the long acting one is appropriate for the low WBC due to myelosuppression.
God bless.Hi,
What was the reason after December to switch to a different chemo while she is doing so good on the chemo?
AFP=1.7, that means the original of the cancer may not from the liver itself.
CA125 is mostly related to ovarian cancer and I did not see you mentioned anything about it. CA125 if >65 normally indicated of malignancy(about 90% chances);but if patient have fatty liver; hepatitis chronic or active;or type 1 diabetes,than the Ca 125 level will be affected by them too. So the CA125 is not a reliable biomarker for CCA.However ,elevation of CA19-9>129;CEA>5 and elevated CA125 may support diagnosis CCA.
Your mom had both colonoscopy and EGD done and find nothing,so that is good news knowing that the malignancy is not from the GI tract.
There is a high sensitivity and specificity for diagnosis of CCA when CA19-9 >129;likewise Ca19-9 will be MUCH higher in pancreatic cancer patient .Have your mom had a MRCP done to detect the possibility of CCA or stricture in the common bile duct or the distal portion of it?
I am not a doctor and I am just a patient like your mom for 34 months;but the BEST lab and scan report was when she was on the Gemcitabine and xeloda regimen;I don’t know why the doctor changed the regimen,usually in the States,if the regimen works well they will not change it unless disease progress or intolerable side effects occur. But this regimen is for some reason works better for the extrahepatic CCa than the intrahepatic CCA which means unless your oncologist finds out differently,and your mom have not had the MRCP done; I will SPECULATE that the cancer may be originated in the distal bile duct area.
2nd opinion from a liver specialist (they know more about the liver and the bile duct physiology than most of the oncologists)and radiation oncology consult is recommended especially if the tumor are not matastasized.
Tumor of unknown origin is also a possibility.
OB/GYN consult for your mom is also warranted.
Keep in touch and
God bless.God bless
Hi, for the new members who just have registered in the past weekend or so; below are the little map that may help you to get the info you need faster for your specific needs.
1. Below are the most common chemotherapy agents and targeted therapy agents used both under traditional and in clinical trials settings.
2.for the chemotherapy REGIMENS,please read the message under the discussion forum of chemotherapy title”systemic chemotherapy” to get the complete idea of the treatment and studies results pertaining to that regimen.
3. for side effects of a chemo,please read the message under the forum discussion title “Adverse reaction and side effects.” type in the word suggestion for nausea or suggestion for pain in the search box above. and you will find some answers as well as the experiences of the other members.
4.for radiation options,which now are pretty much a very hot and useful treatment option;check out this web site under discussion forum “radiation treatment etc”.
5. for the understanding of how CAT scan ,MRI and PET scan works;please read the message re-print just a few messages about this one. Thanks.Here is the list of chemo agents that mostly used for CCA that I can find at this point. most of them are used in combination to get the best results (synergy) out of the combo that used in the regimen.
Taken by Mouth:(not necessary FDA approval indications for CCA but doctors can use them out of protocol)
1.Xeloda(oral form of 5FU)-see 5Fu below;diarrhea and hand and foot symptoms are the side effects.2.erlotinib(Tarceva)—EGFR cell pathway inhibitor(tyrosine kinase inhibitor);
inhibit angiogensis (cut off blood supply to cancer cells and cause them to die);cause cell death by interrupting the reproduction of cancer cells;smoking will decrease the drug effects by 24% which may result in treatment failure.3.sorafenib.(Nexavar)—Multiple cancer cell pathways inhibitor; inhibit cell proliferation and angiogenesis(cut of blood supply to cancer)
4. Celecoxib-an antiflammatory agent belongs to the COX2-an enzyme family.but use much less recently.Taking as Infusion:
1. 5FU.—a chemo agent belongs to the Antimetabolite family that inhibits RNA synthesis and function ; may also on DNA synthesis but to the less degree. in doing so,cause cancer cell to die.2.Gemzar—a chemo agent belongs to the Antimetabolite family that inhibits the DNA synthesis in the cancer cells;induce tumor cell death (apoptosis);
some study indicated Gemzar is more effective in treating CCA than 5FU,but both 5FU and Gemzar are FIRST LINE chemotherapy agents of choice to combine with other chemo agents in CCA regimens;other study indicated effectiveness of both agents are more or less the same.3.Cisplatin—1st generation of the platinum family, an alkylating agent affects cell DNA replications thus causes cancer cell death(apoptosis);may cause kidney impairment and impairs hearing (ototoxicity);usually use in combination with Gemzar or 5FU to provide the synergic effect of the regimen of GEM/CIS or FOLFOX.
4.Oxaliplatin— the 3rd. generation of the platinum family;less kidney impairment than cisplatin but more patients experienced peripheral neuropathy
5.Carboplatin— the 2nd generation for the platinum family;decrease platelet production;much less toxicity on the kidney compare to others in the platinum family; cause less peripheral neuropathy than oxaliplatin.6.Avastin(bevacizumab)-a VEGF cell pathway inhibitor— an angiogensis inhibitor to cut of blood supply to tumor cells.and cause cancer to die.
7.Erbitux(cetuximab)-an EGFR cell pathway inhibitor;blinds to the cancer cells surface receptor of EGFR and block their stimulation;therefore renders the cell pathway useless.
8.Leucovorin(it is not a chemo drug but used to enhance 5 FU effect)
9.FUDR(Floxurdine)-it is an analog of 5FU,belongs to the Antimetabolite family. Administered via the hepatic artery(pump);hepatic toxicity is high.
10.Epirubicin— a chemo agent belongs to the Anthracyclines family which is less used nowadays.
11.Adriamycin—a chemo agent belongs to the Anthracycline family;interrupt the DNA and RNA synthesis in cancer cells and cause cell death;used in chemoembo in CCA;major BOX warning by FDA is myocardial toxicity ;also neutropenia and leukopenia(75%)12.Irinotecan(Camptosar)-inhibits DNA synthesis in tumor cells by inhibiting an enzyme called topoisomerase1 ; useful but tough to take.
13.Docetaxel-chemo agent belongs to the Taxane family,interrupt the mitosis of the cancers cells cycle to reproduce and cause tumor death.
14.Mitomycin- a chemo agent belongs to the Alkylating family; inhibit DNA and RNA synthesis and thus cause cancer cell death ;use in chemoembo for CCA and can be combined with 5FU for treating CCA too.
15.Panitumumab(similar to cetuximab ;but difference from them is that this is the first 100% HUMAN monoclonal antibody direct against EGFR cell pathway; therefore you may expect less allergic reaction from Panitumumab.
16.paclitaxel-(Taxol) a chemo agent in the Taxane family that primary inhibits the cell cycle during mitosis;thus the tumor cell cannot duplicated and die;Taxol should be given before cisplatin if both drugs are used at the same time for maximum benefit of the combo.;also inhibits angiogenesis but is very tough to take.
Hi, Marion,
the most important is that” YOU WERE HEARD” by them;the more the voice to even A cancer;the better chance in the future that they will find a CURE for those who are lucky enough to have the cure. Keep on pushing hard,you will never know how God’s arrangement is . I am an example of his arrangement and who knows when my time will be up,but in the mean time,like you, I will push hard until the lack of energy catch up on me.
God bless.Hi,
Gemzar+ carboplatin ,yes will have the least side effects among the three platium drugs(cisplatin,oxaliplatin carboplatin).Since the cancer is in the distal bile duct, radiation consult for 2nd opinion is a good idea to explore the opportunity of cyberknife,PDT,IBRT or even SBRT.
Good luck and
God bless.Hi, Loretta,
Are all the info about CT scan are the” exact wording” from the Ct scan reports under the “impression” section. if the answers are yes ,or unless some other diagnosis is involved; you can kindly tell your husband’s that he is actually not in that bad situation as you had mentioned in your first message. I think that is why it is a good thing for all the people who are just lurking on this web site to express their concern for their own special situation on this web site or other site to get at least an idea that is related more to their special situation.
first of all,Loretta,since I don’t have the medical info I needed from you, all my opinions are suggestions or speculation only.
1. Ascites is a symptoms only and not a disease,it can be managed by paracentesis as well as Lasix and Aldactone; at home just put up the feet on the table or chair to make him more comfortable.
2. Pulmonary embolism ,as you mentioned is now managed by Lovenox subcut injection twice a day. So that is good. Just make sure his Lab (INR is >/=2);you did not mention taking Warfarin but I am no doctor so I cannot command on that. Oxygen PRN is good but as you know,it is for asneeded use.
3. For some unknown reasons, 5FU or capcitabine works better for extra than intra bile duct CCA; therefore the switch may be of benefit to the peritoneal carcinomatosis as well;but as far as i know;at least in my sister-in-law’s situation using Gemzar+xeloda(an oral form of 5FU)+Avastin had an excellent result in decreasing the sizes of the carcinomatosis in the abdomen just after one cycle. Please remember each patient reacts to each regimen differently;so it may or may not apply to your husband’s situation;but at least the more you know ,the better you are in control.5Fu+oxaliplatin+leucovorin is on par with GEM/CIS for effectiveness but less toxic to the kidney,(please read the message about the comparison between 5FU and Gemcitabine ,CCA chemo agents and the systemic chemotherapy on this message board under the forum discussion of chemotherapy.
4. Base on the last CT scan, decrease dilatation in the liver is a good sign that may mean the blockage of the bile ducts in the liver is decreasing and the bile flows better as well. Decrease size or stable are always good “words” to hear.
Unless I miss other medical conditions that you have not listed; I really donot think your husband’s situation is as bad as what you had described earlier.
If you don’t mind, when your husband will have the CT scan tomorrow,and when the CT scan report is out you can quote the “impression” section for me to . If you think is you need privacy,you can email me thru this web site. and I will try to give you what I think. Remember I am no doctor;I am only a patient like your husband for 34 months now. Medical advise and 2nd opinion provided by medical specialists are most important to the wellware of a chronic disease patient but knowledge about the disease helps too.
Try to get him eats more poultry,soy products and nuts for protein and fruit and vegetable.
God bless.Hi,
PDT that I understand is mostly suitable for extrahepatic CC .Gavin ‘s dad had it done in UK ,He will give you a better idea.
Keep looking under the discussion forum here under radiation treatment and you will find his opinion before he will join you forPDT discussion.
Here is a link for info..Photodynamic Therapy for Cancer – National Cancer Institute
http://www.cancer.gov/cancertopics/factsheet/Therapy/photodynamic
A fact sheet that explains photodynamic therapy, how it is administered, and indications and side effects of treatment.
God bless.Hi,Loretta,
sorry to know about your husband’s situation.
I am a patient too. but if I may can I ask when was the last CAT scan done for your husband ? and what did the doctor said about the results of the CAT scan? Any chemo or radiation treatment currently your husband on?
Have you explore radiation treatment as an option? If you can ,try to get a 2nd opinion on the possibility of having treatment of radiation even when the CCA mets to the lymph nodes and the adrenal gland and chemotherapy is the choice of treatment .
Your husband is a tough guy; CCA is a slow but tough cancer that will make us,the patients,lost appetite and energy.Good luck
God blessHi,
Others will join in for more support for you;in the meantime, as you may know the treatment triangle of CCA consists of surgery,radiation and chemotherapy ;all three sides of the triangle are equally important in the treatment of CCA.I am no doctor;I am ,like you, a CCA patient for 34months.the difference between your and mine is you have the Extrahepatic CCA and I have the Intrahepatic type CCA.
However if I may suggest, when you get 2nd opinions as you suggest at John Hopkins(BTW,they are #1 for 25 years as the best overall quality hospital in the States.) So you have already chosen the best place for consultation I will suggest start with your consultation with a hepatologist(liver specialist) first to get an overall assessment of your current situation; then base on his recommendation to have the interventional radiologist consult for the possibility of using RFA to burn off the 2 small tumors in the liver or have the radioembolization or chemoembolization done so to give you a relatively free of serious side effects treatment for your recurrence;then I will see the medical oncologist for his final opinion.
BTW,we had a bit info on the RFA,chemoembo and radioembo under the forum discussion on “Radiation etc”;please spent some time to learn more about each one.good luck and
God bless.Hi,
Information about dietary carbohydrates if your are interested.
Two medical term definition below will help understanding this message more.1.Glycemic Index(GI)- of a food depends on how fast the digestion and absorption of its dietary carbohydrates, which in turn determined by the chemical and physical of the food itself. foods like pasta,whole-grain barley,oats and rye have a slow rate of digestion and therefore a lower GI. Examples:Potato,white rice,white bread ,fruit punch,cola pancake candy and french fries have a higher GI. Skim milk,apple,in general,fruits and vegetables with higher fiber content provide low GI per serving.
2.Glycemic Load (GL) is define as the product of the GI value (the quality)of a food and its carbohydrate content( the quantity),GL incorporates both the quality and quantity of the carbohydrates consumed as compare to GI only account for the quality value only .It is because the blood glucose is influenced by both the quantity and the quality of the food a person eats at a specific time.
-there are no good evidence that replacing high fructose corn syrup with sucrose will have any health benefit.
-it is said that a lower GI diet may improve glycemic control to the same extent as newer pharmacological agents.
-To get to a lower dietary (glycemic load (GL):
1. replace carb with protein like fish,nuts,and poultry.
2. replace carb with fat like mono and polyunsaturated fats.
3. substitute a low-GI carb(ie:eat an apple)for a high GI carb.(ie:fruit punch)
4. combine all the above 3 methods.
God bless.Reference:
Dietary carbohydrates-Literature review by uptodate.com through Jan,2012 .Hi,
Shortness of breath may be due to the tumor is too big and press again the diaphragm and if she feels some dull pain, just ask her to lie down and rest instead of sitting up;
You should also know that if a patient is on chemo and wants to do radioembolization;a waiting period of 2-4 weeks is normally required to let the previous chemotherapy be out of the patient’s system first and therefore will not make the liver more radiosensitized to the radioembo treatment later.
Good luck and pray for guidance.
God bless.Hi,
Extrahepatic CC METASTASED to where if I may ask.BTW, I have intrahepatic CC for 34 months ,it is quite a long journey.
I know Gavin’dad and Lainy’s husband and many others on the board had extrahepatic stage 3-4. Mainly stents changing and bile flow and ascites are the main problems. IBRT ,PDT or cyberknife are radiation treatment options besides systemic chemotherapy.
If the tumor inside or around the bile duct is growing it will show as a stricture in the bile duct and it will show on the scans or MRCP. Changing the stents every other month to improve the bile flow is a common practice to keep the bile from backing up in the digestive system.
Palliative chemotherapy or adjuvant chemo treatment is no guaranteed for cure or prolonging the life of most CCA patients but as you may notice from this web site,there are CCA patients who live beyond 5 or even the 10 or 15 years mark.
Keep in touch,
God bless.Hi,
The swollen abdomen are fluids accumulate due to the bile duct in the liver cannot function normally .the medical term is ascites. It is a simple procedure and It can be relieved by inserting a needle and withdraw the fluids out by a doctor in the hospital up to 20 liters in volume without major side effect. .in addition, the doc will prescribe diuretics like furOsemide and Aldactone to decrease and control the symptoms.
GEMOX+cetuximab is a powerful chemo that combined two chemo agents and the newer anti-cancer agent call molecularly targeted agent (cetuximab).
The good thing is your sister is young so she can tolerate the combo treatment better than others. You should expect her to develope skin rashes ,but this is actually an indication of the drug is working well.Try to read more about this treatment combo under our discussion forum title “Chemotherapy”; to learn more about it.
If have questions,please feel free to ask us.
God bless.Hi,
Did your husband having stent to put in for the correction of the bile flow?
Did he has any bowel movement at all or having constipation for quite a while? If this is the case the intestine may be blocked and thus the bile flows backward into the stomach. I am not a doctor and therefore 2nd opinion by hepatologist( liver specialist) is highly recommended to find out the cause
If the tumor is only in the liver most likely the bile still can flow normally and out of the body if the common bile duct and the intestine are function normally.
God bless.Hi, Lorraine,
Most likely, the submandibular gland problem may be just an infection or inflammation ,even the SUVmax is 4 or even higher like 6 or 7,highly unlikely it will be cancer that metastased from the CCA.
The most common place for CCA to spread to is the lung,the bone and the omentum .
Radioembolization and chemoembolization are Other choices besides the systemic chemotherapy and in your situation they may be of value. Please read about messages that in our discussion forum under Radiation etc.
Portal vein involvement is not a contraindication for radioembolization .Those two radiation treatments are not for cure but for palliative purpose . However ,it will be less side effects on the patient and can provide(depends on the tumor burden and the vascularity of the tumor and patient’s current health status) 1-2years disease progress free time for the patient . The successful rate of radioembolization is about 46%.
2nd opinion by an interventional radiologist is recommend. And if you said you have been quietly reading our messages on this web site for a month,you will know that I am only a patient like your mother ant I am not a doctor. Another consultation with a hepatologist for treatment recommendation is also a good idea.
God bless.
