pcl1029
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Hi, everyone,
I have just updated part of the “systemic therapy”;mostly the oral medications part;and at the end,the ” the summary”. I still need to update the infusion part.
the update now include the most serious side effects of the drug itself and the drug-drug interactions with the chemotherapy in discussion.
God bless.Hi, bluebird21.
I am sorry to miss your question until now.
Rice grain size mets in the liver cannot be detected is not uncommon by CT scan.
Normal CT scan slices the body from neck to pelvis into 64 slices from the front (ie: the top of the chest) to the back vertically; newer CT scan machines can slices the same body length in 128 slices and thus can provide an earlier discovery of development of the tumors.
In general the tumors will not show up on the scans when they are below 0.5cm in sizes unless the slice by chance cuts thru that 0.5 cm tumor and this may be the reason why the CT scan cannot detect to rice-grain sizes tumor of your husband.Base on your description,the tumor has spread to other parts of the body,therefore the ONLY logical choice is systemic chemotherapy with or without targeted agents like everolimus , temsirolimus and sirolinus,; they are the mTOR kinase inhibitors which inhibit the growth process of the solid tumor and disrupting the protein synthesis of the tumor. The mTOR pathway agents are approval mostly for kidney tumor but are also being studied in “primary liver cancer” at this time; they can be used “off label” by oncologist to treat different types of solid tumors like CCA.
Among the three mTOR inhibitors ,everolimus(Afinitor) is the one that studied the most for liver tumor.
Capecitabine, and oxaliplatin (CAPOX) ,Gemzar/cisplatin,GEMOX, FOLFOX, Taxol/carboplatin are other chemotherapy agents for cholangiocarcinoma.Targeted agents for CCA included sorafenib,bevacizumab,cediranib(all are antiangiogenic agents,); erotinib, cetuximab( are EGFR inhibitors); tivantinib(C-Met pathway inhibitor), selumetinib,(a MEK pathway inhibitor) and belinostat (a histonme deacetylase inhibitor) and the combination use of the targeted agents are being studies in Liver and/or bile ducts tumors. We can expect a lot of these targeted agents will be use in CCA too in the near future and soon.
Hang in there,this is a roller coster ride for sure .
Keep in touch and
God bless.Hi,
You are doing the right things to go to Memorial SKCC to have their expertise for this type of cancer as compare to the local ones.
Just follow their treatment advise and check the results 3 months later by Cat scan to see how good the chemotherapy works.
Come here often for support, Our Lainy and others are really good at comforting and provide emotional support to the care givers as compare to me in that department.
By the way I am a patient here for more than 3 years and I hope the same can apply to your mom too.
God bless.Hi, Nancy
Please if you can, start a new topic under general discussion so your message will not be lost inside other people’s message.
I am one of the patient like your husband to have the luck to self-discovery of my intrahepatic tumor through the God’s Grace.But I am not a doctor like your husband.
may I ask why he chooses not to have surgery and use chemoembo +ablations instead. May I ask why his tumor is not resectable? Is it the mets to other organs or involvement of the major blood vessels?Cholangiocarcinoma is indeed a rollar coaster ride. I have this ride for 37 months now; your husband will benefit from his peers’ medical advices and his own medical background and knowledge, 2nd opinion on interventional radiologist consult if situation is in his favor will be perfect.
Of course,time is not on our side for CCA patient in general,so if possible, try to get a complete picture at John Hopkins (ie: surgerical consultation if not done,interventional radiology consult,medical oncology consult) .The whole work up is a good way to assess the entire situation and the future” of the disease state at JH, the only over allbest hospital in the States.
If your husband wants to be more specific in seeking the BEST; Dr. Gores in Mayo Clinics is also good at liver surgery and done a lot of research from the molecular level of CC to liver transplant ;if you are a medical professional, I think you will enjoy and learn a lot from him. For medical oncology treatment plans, MD Anderson in Texas is the best choice when you are really out of options or beyond the success of GEM/CIS , GEMCAP or Taxol/Carboplatin or FOLFOX.
In general the emotional side of the patient,especially if he is in the medical field,will be tough to understand.As a care giver like you, this is an extra dimension you have to understand and care for him.
Keep in touch and
God bless.Hi,
For chemotherapy , The relatively easy to take without major side effects is capecitabine+ oxaliplatin(CAPOX) . But make sure you understand I am only a patient like you mom and not a doctor. The recommendation should be discuss with your oncologist. But if gemcitabine and CISPLATIN will be prescribed by the oncologist, it will not hurt to ask for the pros and cons of both regimens . The CAPOX is less toxic to the kidney and the hearing function and less hematologic (blood cells) side effects than CISPLATIN ,but gem / CIS is the most commonly prescribed regimen for CCA. As a patient ,between the two, I will choose CAPOX for convenience (capecitabine) is taken by mouth and for the age factor of your mom; gem/cap is also a good choice as well as GEMOX . Doing nothing as you mentioned is not a good idea, for the tumor will keep on growing. Unless the chemotherapy is free and cost you nothing, otherwise my suggestion on the last message to you to go with RFA or IBRT may not be as expensive as you think when you add the cost of each chemotherapy together an d compare to RFA or IMRT one – 2 times treatment .
God bless.Hi,
Surgery is the only potentially curative treatment for Gallbladder cancer.(GBC)
The possibility of surgery depends on the stage of the cancer; the number of lymph nodes involvement(ie: the more the #,the less the possibility);the extent of the liver metastasis(ie: liver mets is an absolute contraindication for surgery in general);and occlusion of major vessels due to the GBC.Mayo Clinics,memorial Sloan-Kettering are two hospitals that have studies done on GBC and have more “radically resections” performed for the patients; therefore presume that they will have more experience or expertise on this radical resection compared to other hospitals. 2nd opinion for GI (ie: gallbladder or hepatobiliary specialist)consult in either one of the above named hospital is recommended when the tumors are shrunk enough for both the liver,pancreatic tumor and lymph nodes.
At this point ,I do not think Whipple or liver transplant are the option for your son. But the good thing is the” age risk factor ” is favorable for your son(only 30 years old); the other good things is that he responses to Gem/CIS chemotherapy so far without any major side effects and the tumor marker CA19-9 decreased substantially; and the best thing of all is that the tumors are shrunk and hopefully it will continue to do so.
Keep in touch and
God bless.Hi,
first and foremost, I am only a patient and absolute not a doctor.
Base on your description, most likely your son has stage IV biliary tract adenocarcinoma.
Surgery at this point is still not possible.
Systemic chemotherapy and/or with targeting agents similar to bile duct cancer are the choices , Hope is always there but this is a very difficult road to travel through. it requires patient, courage and knowledge; more or less like a rollar coaster ride than a rocky drive.
Can you tell me what is the chemotherapy your son is on?
tumor regression is good news;
are there any shrinkage on the lymph nodes and on the pancrease? by how much %(ie:>25% in shrinkage?)
Keep in touch,
God bless.HI,
Surgery is the only possible cure for CCA.
Many patients hope and pray for for that chance to have surgery.
I will jump on the chance if 2nd opinion on surgery allow your boyfriend to do so.
God bless.Hi,
I am so sorry to hear the passing of your husband,
May the Love of our Lord Jesus Christ,the Grace of God and the fellowship of the Holy Spirit be with you and your family.
God bless.Hi,
Yes, that Yunzhi capsule is all I take as supplement in additional to vitamin D3 200 units Twice daily. I take 4 caps twice a day when I am on the off week of Xeloda and 2 capsule twice a day when I am on Xeloda. I take them 2 hours apart from each other.
The herbal soup I mentioned is the soup and not the herbal medicine prescribed
by the herbalist. the herbal soup (ie: like the bi-chun(eight precious) tong
(soup) with chicken or the (perfect 10 soup) all these you can buy in a Chinese grocery store that come as a package with all the ingredients and instruction on the label, all you have to do is add a couple pieces of chicken or lean pork, a dash of salt to taste and following the instruction and then when it is done, it smell so good and all the members in the family can have a bowl of soup too. that is the kind of herbal soup I am talking about; take twice a week to restore the Qi and decrease the fatigue that your mom have.
God bless.Hi,
I think you should ask the following questions after the oncologist and doctors’ speaking to you at next meeting.
1. If the tumor is only confined to the liver and no metastasis to other part of the body. ask the interventional radiologist the possibility of RFA or chemoembo or radioembolization. (for intrahepatic tumor)
2. if the tumor is only confined in the bile duct and is <4cm; and nometastasis,
ask the interventional radiologist whether IMRT oer cyberknife or PDT is an option.(this is for extrahepatic tumor)
If your mom can qualify for either one of the above procedure,then it is much better for her in terms of side effects as compare to chemotherapy and the quality of life is much better than having chemo. 2nd opinion from an “interventional radiologist “is recommended before the start of chemotherapy.
But if your mom’s cancer is spread or metastasized to other part of the body, then systemic chemotherapy and targeted agents will be the only logical choice.
Again, i am only a patient and not a doctor. the final decision should be your mother’s and yours to make after concultation with the doctors.
God bless.Hi,
Your last Ct scan was last Feb 2012 for the 16 month check up and is clean;
but now it is almost 24 months since you diagnosis. And no matter what the result of the CA19-9 was, A CT scan is in order for the 2 year mark.
good luck and
God bless.Hi,
I was surprised too that they did not tell you about the result of the brushing.
anyway, there is nothing you can do now till the next Scan result and see what happen to the tumors and the lymph nodes.
The good thing is your husband still have the appetite,therefore just give him more protein like boost or ensure or soy bean milk,to fu ,vegetables and more fruit, lean meat like turkey,fish,and chicken to built up his strength.make sure he drinks at least 6-8 glass of water daily to keep hydrated especially the week he is on cisplatin. you may apply for social security disability benefit for him and get the disability using the date of 2 1/2 years ago as the starting date so your husband can quality right away for medicare and other benefits.
Keep in touch and
God bless.Hi,
Oncologist may NOT always know about the rapid development of the interventional radiology. If no mets outside the liver, radioembo may be worth to take alook;the same apply to chemoembo too. Standford it the place to go if you decide to take a 2nd look.:Just go to their web site and type “interventional radiologist”,and you will find some info. about the procedure.
If they say no,ask for the reason why not so you can understand more about your mom’s disease state.
xeloda/oxaliplatin ( CAPOX)is much easier to take then Gem/cis. ;make sure you ask the oncologist if he/she offer GEm/cis and compare it with CAPOX to get the pros and cons first.
I am just like your mom ,an intrahepatic CCA patient for the past 37 months.
It is only by God’s Grace that I can still be here today.
I hope for the same thing for your mother too. I will say a prayer for your mom tonight .
The most important thing of all is that, if you try your BEST in helping your mom to fight this cancer,try to find the best possible treatments for your mom,then you will have NO regret and you can sleep well each night. and this is also the motivation I have everyday to help myself in search of the possible “magic bullet”.It is also a good idea if your mom or relatives know about using Chinese herbal soup to boost the overall strength of your mom’s body.
God bless.
