pcl1029
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Hi,
the choice is personal;the end point is the same ; the quality of life without chemotherapy should be better for those who choose the alternative way,
good luck and
God bless.Hi,
I think 2nd opinion from experienced liver surgeon,( eg Dr. Keto (NY) r. Chapman(St. Louise) or Dr.Brems(chicago) should be consulted
The 2cm tumor is small in size and they can even burn it off;the lymph nodes can be taken out too. the systemic chemo to kill the rest of the cancer;
Unless the 2cm tumor is attached to the vena cara, the portal vein or the main hepatic artery or firmly growing into the MAIN left or right hepatic vein that supply blood to the left and right side of the liver. Even so, under the doctor who like the challenges,this may be a good opportunity for them to do so since the size of the tumor is small.
I do not think your brother telling you the whole thing or he is to sick to talk about.
However,I will go for a 2nd opinion on interventional radiology consult on the possibility of qualified for IMRT(for small size tumor), radioembo(for large one) or chemoembo.if RFA cannot be done due to location.TIMING is everything for this disease .If the patient still having a chance for some procedure that is possible to save his life before it is too late to do so; I or we,as patients and caregivers should explore that option to the fullest before it is too late to do so. and I think that is one of the most important thing to get on this board,to tell about your situation and seek help appropriately; for each case is different.
I hope I am wrong on this because I don’t have the scan result to look at ,:but if I am the patient; Not to seek other radiation and surgical opinions based on what the simple message said here will not be my choice.
BTW,I am only a pattent who is having this CCA for almost 3 years.Talking on the web is good for knowing a lot of people supporting you;but the REALITY for treating this cancer is not by how much a person knows or;how much the emotional support we get ,It is by how much PLANNING and ACTION that we will prepare and follow through each step when situation changes for our love ones and us–the patient ourself.(all in all, it is both an emotional and educational ride;and the worse of it is there is no guaranteed even to prolong the quality of life .)
God bless.Hi,
Since there is no metastasis to other parts of the body based on the PET; and it is only about 3month after the Dx. And based on you said his condition is stable.( is this result of no shrinkage based on CAT scan?) then did he has a surgical consult with the liver specialist and rule out resection?
Get the scan report if you can .BTW, sepsis and c-diff and fungal infection in the hospital are not good signs . MRSA and pneumonia are the major problems and hopefully he can recover soon using those powerful antibics like Levaquin,Zosyn,Diflucan and Flagyl iv. Then after complete recovery, ask for 2nd opinion for the possibility of surgery to remove the tumor.
Avoid Chinese herbal medicine since it may interfere with chemo therapy.
God bless.Hi,
Is it ok for you to put your ultrasound report on the board for me to take a note.
You can email me thru this web site if you think the info you disclosed is too private.
The short unswer is no .so don’t worry at this point. May I ask how old you are and do you have a lipid profile done? ( lab work of cholesterol and triglyceride etc) .on any medication now like Lopid or Tricor or statins like Zocor?
I will try to answer more of your concern when I receive your info.
No need to worry ,fatty liver is not a risk factor for cholangiocarcinoma but long term outcome is unclear.
God bless.Hi,
“BTW Percy, i asked him about sorafenib he replied that there are no recommendations to use it in CC,”
the sorafenib is a mutiple kinase inhibitor of many pathways.when i brought this subject up to the famed doctor about targeted therapy; that is what he thinks at this point sorafenib can be a good choice to use to attack mutiple pathways rather than one pathway just like AKT (like MK2206) or mTOR( like everolimus);yes, the only one that aprroved for CCA is the Tarceva. all the others are for solid tumors. and it is not FDA approved indications for use as such.
However, the purpose of my consult is for more understanding the current thinking of those who are at the top of their field .I was confused where I start looking for research on the so many pathways of cancer biology.I don’t know where to start and I don’t want to waste time aimlessly. He told me AKT and mTOR are reasonable choices to look into. But just in case the newer drugs will not come out in time,sorafenib may be worth a look base on his research and becasue it is available on the market now.(the famed doctor is a hepatologist ; On the other hand the chief oncologist when I consulted with him about chemo; the standard answers are given to me,Xeloda,Gem/Cis;Gemox;Taxol/carpoplatin and FOLFOX. none of the targeted agents are mentioned.)
So I will not blame your oncologist for his/her commend on that.
How is your mother,s health now? any side effects?
God bless.Hi,
According to the article ” Liver and bile duct cancer ” by Amal Samy Ibrahim, between 1999-2001 , there were 345 patients microscopically confirmed to have liver and bile duct cancer; 61 were female patients; out of that 61 pts, 80.3% had liver cancer and only 11.5% were dx as cholangiocarcinoma.
In short, there are almost 8x of more chances having HCC than ICC especially in FEMALE patient in Egypt.unless this study is out of date.
I think the combination of HCC-ICC is worth a second look based on the above stats and the abnormal AFP values unless chronic infection with HBV or HCV or aflatoxin contamination of food products can be ruled out.(this is purely my guess only and could be of no significance at all).
HCC is more chemo resistant ; but time has been change. I think when they do that studies,a lot of those targeted agents are still in infancy and thus may not include in the equation.
The increase of CA19-9 may be related to “*The associated mild segmental intrahepatic biliary dilatation noted around the main mass.”
THE report is a bit different than the ones used in US, I want to see the tumor relationship related to its surrounding (ie vascular infiltration or just intraductal )After almost 4 cycles of Xeloda(1500mg BID, 14days on/7days off as one cycle) that I am on now,
Hand-foot syndrome(redness and minor peeling of the skin on the palms of hands=2/10-on the scale of 1-10,10 being the worst));
fatique(=6/10); diarrhea=2-3 times/day(grade 1);
decrease in neutrophil(=2/10); increase lymphocyte(=1/10);
minor decrease in serium potassium and magnesium(=2/10)
minor increase in Bil.total=0.4(0.2-1) from 0.3.
Oncologist suggested to reduce the dose to 1000mg BID starting next cycle.
Relatively speaking, I tolerate the Xeloda mono therapy well.CAPOX(capecitabine+oxaliplatin) : (1000mg/m2 BID Xeloda on day 1-14 + 130mg/m2 over an hour oxaliplatin on day 1),in one study had a overall response rate of 16% and a substantial number of patients had prolonged periods of STABLE disease. survival was not reported.
In another study,CAPOX treatment was well tolerated with only mild hematologic toxicity,grade 3 and 4 peripheral neuropathy. however,for unknown reasons, more favorable results were noted in the extrahepatic CCA group than intrahepatic CCA group.There were no complete or partial response for the ICCA group as compare to 2 complete and 8 partial responses in the ECCA group.(pts pop=65 )- review of systemic therapy of CCA ,uptodate.com.
Ask the oncologist why he or she want to change to CAPOX .What is his logical approach for using this regimen which seems favorable more to ECCA than ICCA that you mom has.
Base on what I can understand;the best option for your mom at this point may be radioembo with Y90 (using glass particles);and if so, make sure you ask whether there is a waiting period between switching treatment .
Interventional radiologist consult is highly recommended . Fatique is the major adverse reaction for the radioembolization with y 90.that may last for a week or two.Please read Rick.Kamp’s experience on this board for week by week reports; mostly fatigue is the problem.(just type his name under the user list choose member and click his entry, start around message 43.)
Actually Radioembo with Y90 glass particles is recommended to me by a famed hepatologist recently on my 2nd opinion consultation for the future just in case . He also recommended sorafenib as targeted therapy for future consideration for my ICCA recurrence if it will be happened again.
I hope the above information helps.BTW, how’s the overall health condition of your mom compare to the pre-treatment level; I am a bit surprised by the STABLE response of your mom since I thought at least,the cetuximab will add benefit to the overall response of the treatment plan.
Keep in touch,
God bless.Hi,
Can you quote the impression part of the CAT scan report for me to know more about the details.?
Are they rule out the combination tumor type of HCC-ICC?
It does not make sense for ICC to have AFP that high.
god bless.Hi,
10 cm is big but not uncommon for ICCA.
2nd opinion by interventional radiologist is highly recommended for the relative large size and the intolerance of GEM/CIS chemo. Radioembolization may be a good choice if it is not contraindicated.Chemo embo is another choice.
Chemotherapy at this point may not be the best choice at this moment based on the simple information you put on the message board here.
It is too early to talk about life expectancy since 69 years old is relatively young unless there are additional underlining diseases involved.
BTW,I am just a patient with ICCA like your MIL.
GOD BLESSHi,Phil,
MRCP can only tell whether there is a blockage or not and ERCP is the only procedure to put the stents in .
The pain that your husband had most likely is cause by pancreatitis or pancrease related problem and the Cipro antibiotic along with narcotic analgesic can take care of the problem.But if the pain is not relief enough by the narcotic pain killers; non-pharmacological therapies such as celiac plexus block using steroids or celiac plexus neurolysis with injection may be considered by your attending physicians. But I will not suggest at this moment to the doctors,; let’s deal with the current ERCP,MRCP and MRI to see what is actual current problem first.
Good luck
God bless.Hi,Jim,
Good show, for those who want to know about another CCA pt’s feeling and how she handle this disease ONLY , start at 22:30 ; In short,always asking questions and prepare for the next treatment plan just in case it comes back. I agree with one of the lady on the show that sometimes the patient herself or himself may actually know more about the CCA disease than the average GP do because of the research we have done for ourselves .
Thanks Jim.
God bless.Hi,Leeann,
If I may,even though 3 out of four oncologists said no to chemo after resection.
I will still consider to have at least Xeloda as adjuvant chemo to DELAY the recurrence . The recurrence is so high (>65%) that I think is worthwhile to do so. Xeloda is a pill and is easy to take. I am not trying to be your doctor because I am just like you, a patient,but not a doctor. But unless three of your oncologists are very familiar with CCA, observation or adjuvant chemo are two choices that commonly as recommendation when they search for treatment of this canner. I have clean margin about 1 cm,not mm, and after resection ( the whole left lobe) and 14 month of Gemzar, it still come back about 6 month after I stopped the Gemzar . 2nd opinion from experienced CCA oncologist is recommended.God bless.
Hi,
From my personal experiment .Before my 2nd resection, I monitor the growth of my tumor from 0 in size to 2.1×2.3×3 cm ( 3cm is based on the pathology report,2.1×2.3cm is based on cat scan)in about 12 month. So you may suspect a 5x6cm tumor appeared on cat scan will take about 20 -30month . That is my best guess based on my experiment.
God bless.Hi,Gavin,
Thanks for your double effort to try to find it out.i believe that study will include one of our member,Trevor, as one of the Stats.
Tomorrow ,I will be back to the hospital and I hope I can get the full article if that has been published .
Make sure say hi to your mum for me, and Gavin, don’t be surprised if the New York Giants will be the NFL Champ this coming Sunday, though I can not be 100% sure otherwise I be working in Vegas .
God bless.Hi, Jessica,
I am a father of four children;
I am also a patient of this horrible disease for almost three years;
I also happened to have a big tumor like your husband on the left side of my liver.
I also got very depressed like your husband at the beginning of the diagnosis .What I am trying to say is this, please let your husband know he is not alone;please tell your husband it is ok to get depressed for a while. Sooner or later things will turn around and tomorrow will be another day of hope .
Apart from the bad experience that you have had with that doctor; He did the right thing to order a PET scan to look for metastasis (or spreading) of the cancer to other parts of the body. If there is no spread;surgery may be the option for a possible cure;and I think that is why he ordered the PET even he had told you not so.The doctor does have a heart after all because of you;may be he had a very bad day before seeing your husband. Is he a surgeon? or GI specialist? or a GP?
Chemo or radiation therapy are other options.
Meanwhile, ask your husband to eat well so he can fight better later.
Keep in touch,and tell your husband he is not alone;and above all he has a good wife ,like you, to take care of him.
God bless.Hi,everyone,
This is the current philosophy and practice of using CHEMOTHERAPY in general for treating.CCA that I believe in which is the less,the better.. I think his assessment is reasonable too.The following is quoted from the link at the end of this message under the experts review section if you want to read it through the whole thing even though it is for colon metastasis.
“As we take stock of what is now available, we need to clarify how these agents will be used to maximize outcomes. This might include optimizing RRs with at least three agents when curative resection is the goal, or maintaining quality of life with sequential therapy if exposure to all agents is a reasonable expectation. Sequential monotherapy starting with capecitabine or 5-FU/LV with or without bevacizumab and then proceeding to either oxaliplatin- or irinotecan-based chemotherapy as second-line therapy may be considered in patients who are asymptomatic, in those with relatively slow-growing disease and/or in those with multiple sites of disease that are deemed to be unresectable. This is in line with National Comprehensive Cancer Network guidelines. Additionally, monotherapy may be more appropriate in elderly patients and in those with significant comorbidities. In contrast, initiation with combination therapy is more appropriate in patients who have excellent performance status and clinically aggressive disease, in those with significant symptoms and/or in those who may be considered for salvage via surgical resection.”
God bless.
