pcl1029
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Hi,
1. Did you discuss about chemoembo or radioembolization with Dr.Koong
and what did he/she said why it cannot be done on your mom? Is it the bilirubin too high or something else?
2, Did you mom has other health issues that prevent to have the chemoembo or radioembolization?
3. Did your mom has metastasis outside of the liver?
Standford is well known for its interventional radiology and Dr.Koong is graduated from Northwestern Univ.and he should be familiar with radioembolization.
Base on your message on this board,if all the above answers are all NO.
then you should talk to the”interventional radiologist” at Standard or UCSF about the procedure.
God bless.Hi,
Cardiotoxicity is a well known adverse drug reaction especially if the patient had cardiac related issue before the treatment of chemotherapy.
There are two things I will do in your situation before hospice.1. If your mom is as well as you mentioned and there is NO metastasis beyond the liver. 2nd opinion by an interventional oncologist for radioembrolization or chemoembo is recommended. ( We have a patient in Egypt who has the same ICC-HCC type cancer that your mom had and undergo this treatment.);If you go to John Hopkins,you will get a better experience overall since JH is the # 1 hospital overall in the States for 21 years before they got knock down by Mass.univ. hospital this year.
2. After the above, if you still want to ,get a 2nd opinion from the #1 oncology institution in the world, the MD Anderson down at Texas. Ask them whether they can do an assessment of your mom by just sending in your mom’s record. and get their opinion on further chemotherapy or targeted agents treatment.
After the above consult, then you and your mom will have a better picture about what to do in the near future.and in doing so, you, as a son, will never regret and ask the question—what if—? in the future for missing anything in the wonderful care for your mother and you can sleep soundly afterwards.
May I ask how old is your mom and any other health problems besides cardiac related? Ascites,back pain,shortness of breath,fatigue?
and when is the last CAT scan or PET scan done? did the oncologist rendered his/her opinion base on the anything else or with/without the result of the most recent Ct scan?
BTW,Gemox+erbitux is NO better than Gemox alone as the final data comes out from the Phase II”Bingle” trial—ASCO 2012.
As always I am only a patient of intrahepatic CC for the past 37 months and not a doctor. I am alive today because of God’s Grace and nothing more.
God bless.Hi, Lisa,
Thanks for your compliment. I am just a patient for the past 37months.and definitely not a genius;like so many before me,I just try to give back what I can to this web site. I found Hope here after I heard the word “Cancer”.and
I only can thank God for His Grace upon me to live the past 37 months on earth.
I think Stacey,the founder of “The Cholangiocarcinoma Foundation” and her peers are the genius to have the foresight to establish this web site right after the passing of her brother Mark.
BTW, decreasing biomarker is a good thing, I think your husband should continue the current treatment till the 8/7 Cat Scan result known and then going from there. Good luck and
God bless.Hi, asunrae,
This is just my humble guessing ,it seems more young CCA patient appears monthly here or the story of them became known.
My guess is if this young generation start to smoke early(like in their teens); and compound with the fact that younger generation now are much obese than the generations before them; adding to it, is if they like sushi( uncook raw fish of lower quality); or enjoy Thai or Vietnamese “hot pot ” without boiling hot water to cook the ingredients to well done; then I will not surprise this young generation (20-early 30’s) will have develop bile duct cancer.
Of course the official risk factor for this group of young patients is PSC.
God bless.Hi,
Thanks marion.
this study largely based on the data by the Mayo clinics experiences because about 67% of the patients is from one center (he did not say where but mostly is Mayo clinics,) the link of the abstract below provided the clue.That means 33% of the data came from the other 11 centers( 3% of patient data from each of the 11 center).
http://www.gastrojournal.org/article/S0016-5085%2812%2900511-2/abstract
Look at the conclusion, the overall 5 years suvival is down from 68% to 65% after the addition of patients from the other 11 centers. Still pretty good if you can qualify for the liver transplant.
God bless.Hi, Lainy,
I will get back to you, I cannot answer your question right out of my head,but i will find it out for you, Happy travelling to your big party.
God bless.Hi,
Actually I think your oncologist did his/her homework for your husband’ CCA.
The Gem/Cis is not an universal treatment of choice for ICCA but it is easier to prescribe since that is appear to be the easiest and most prescribed regimen in CCA.But other regimens work as well as Gem/cis and cause much less side effects.
1.Xeloda( 5FU in oral form) provides patient compliance by the oral route;
2,Oxaliplatin is much less toxic than cisplatin;unlike cisplatin, oxaliplatin is not associated with significant renal(kidney) or auditory toxicity(tinnitus) and hematological toxicity (blood cells) is usually mild .
3.Both platium agents will cause nausea and vomiting but usually it will be taking care by the pre-chemotherapy antinausea medications, such as Aloxi,Zofran and Decadron .
4. Both platium agents will elevate the hepatic enzymes and bilirubin and the same apply to both capecitabine and gemcitabine.If the the tumor is “stable”,and nothing else changes significantly, I guess your oncologist wants a consistent (5FU) level from you by asking you to take the Xyloda twice daily after meals.And he/she wants to start use one of the agent from the platium family-oxaliplatin to see whether the result will be better than gemcitabine.
It is a cautious decision and I like your oncologist. In short, every body can recommend the use of GEM/Cis first,but I think your oncologist does more than just that. May I ask what is his/her name and where he/she works?
This is just my opinion, the rest is up to you. remember I am just a patient as your husband havine the same ICCA and I am not a doctor.
God bless.Hi,everyone,
NOTE#2 about stats of biliary cancer for 1,057 patients.
(item #6 may be of interest if if you have resection done.)
In a study named ” Biliary Tract Cancer: A large institutional experience” done by Mairead McNamara,Jennifer J.Knox etc. at Princess Margaret Hospital among others. This study involved 1,057 pts with diagnosis of biliary tract cancer were followed from diagnosis to death between 1987-September,2011.
Findings:
1.Among others,,definitive surgery was performed on 41% of the 1,057 patients.
2. ADJUVANT chemotherapy(ct) or concurrent with chemo-radiotherapy (ct/R) were given only in 19% and 8% respectively; However,35% (ct) and 2% (ct/R) were given for UNRESECTABLE or metastatic disease in first-line palliative treatment of ALL biliary tract cancer respectively which included gallbadder and ampulla of vater cancer.3.Gemcitabine alone (55%) and Chemo+radiation(30%)and 5Fu (9%) were given in the adjuvant setting ; while Gem-5FU/capecitabine (46%),
gemcitabine alone (22%) and GEM/platium (18%) were given to the unresectable or metastatic disease group respectively in order of utilization frequency.
4.Most of the cancer were diagnosed at the stage IV ; for example,
30% of the distal bile duct CA; 52% of the Klatskin CCA; 59% of the intrahepatic CCA were discovered at stage IV.5.Surgery were performed on 48% of the distal bile duct patients; 30% on Klatskin patients and 59% on intrahepatic CCA.
6.Median time to recurrence post surgery are as follows;
18.8 months for distal bile duct patients; 17.6 months for Klatskin and 14.2 months for the intrahepatic CCA.7.Of all thos 1,057 patients, 267 (25%) patients are still alive.
Conclusions:
This is a very large biliary cancer cohort study. The different locations of the cancer clearly have a different prognosis. However ,therapeutic advancement mandates finding additional drug option and appropriate adjuvant care.God bless.
Hi.
If you want to,get a 2nd opinion by fax all the record to Dr. Keto to see whether his expertise is appropriate for you.
It seems the doctors you have is very limited on the experience of treating.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8366
God bless.
Hi,
If possible, get an opinion by the radiation oncologist to see anything else is available to him when you are at MDA.
good luck and
God bless.Hi,
“Meanwhile I would love to hear from members any experience on chemo-sensitivity testing- specifically were the drugs still given despite the test showing resistance to them?”
I believe your brother has the extrahepatic kind of CC base on the message you wrote on the board.
Chemo-sensitity test (or biomarker test) is NOT currently recommended by ASCO(American Society of clinical oncology –the largest medical oncology group in the world ),as a prognosis useful tool to determine the outcome of the systemic treatment. Most of the oncologists will regard the test as another means to know more about the disease state of the patient, some will pay attention to the test a bit more but others don’t.The oncologist’s own experiences should be the most important factor to treat patients in general.The reason is simple ,up to now ,there is no standardized values among labs to report the results. If you read the cover letter of the test report carefully, you will notice that the testing company will NOT guarantee the result of the chemo test that will produce benefits that is directly as the result of the sensitivity of each of the chemo agent they performed.
On the other hand, the test ,apart from the the standardized problems; it still provide you a road map in theory, to choose the most possible effective chemo-agent for your brother’s treatment.In your brother’s case, the testing company indicated that your brother is resistant to Gemcitabline,cisplatin and 5FU. So these three may not be the best agent to use on your brother; synergistic effects means the combination of the chemo agents used provided better than each agent when used alone.
(ie: 1+1=3 or 4 instead of 1+1=2 ); But if the chemo agent is not very effective by itself then the synergistic effects will be minimum at best.
Gemox+ erbitux which had high hopes in the past to treat this cancer had just been indicated by its researcher of the “Bingle Trial” to be more or less the same as using GEMOX alone without Erbitux.
Erotinib(Taeveca) by mouth,like gefitinib(by mouth) are EGFR inhibitors; on the other hand sorafenib,sunitinib (by mouth)are VEGFR inhibitors that can be considered if your Dr.K agrees with the chemo-test report. But for the pump I think most likely they will use chemo agents other than Gemzar,Cisplatin or even oxaliplatin or carboplatin; FUdR may be a possibility but it is related to 5FU and capecitabine.
I am only a patient like your brother and not a doctor;but I hope the info helps you a little bit in understanding about this rollar coaster ride.
Below is the link for further reading about this not so rare cancer.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8426
keep in touch
God bless.Hi,
I have never heard that “systemic chemotherapy” is not an option right at the open dialogue of treatment for bile duct cancer especially you indicated you may have the option for PDT. And your description about the Specialist raise the question whether he/or she is a doctor who specialized in the GI oncology field.
I may be dump,but base on your message, I cannot really know where your tumor exactly located;(my guest is the upper third of the common bile duct) therefore I will restrain my comment until your next MRI scan and I would like ,if you can, copy the EXACT wording of the MRI report’s findings and post on the board, or email to me thru this board;that way I can have a much clear picture of your situation to make some suggestion . Again I am only a patient travel the same road as you are now;it is a long and winding road for sure.
God bless.Hi,
I am not a doctor but I am a patient of intrahepatic CCA for the past 37months, it is surely a roller coaster ride that will need courage ,patience and knowledge along the ride.
I don’t know which famous hospital you went to; but in general ,John Hopkins overall will provide you a better experience than what you have said here.
Since you husband have started chemotherapy, I will continue the treatment there until the next CAT scan to get a better picture of your husband’s response.
in the meantime,trying to set up a 2nd opinion at the New York Presbyterian/ Columbia Hosp. or one of the top 17 hospitals in the States is not a bad idea.
2nd opinion by interventional radiologist first after the next 3month CT scan is a good idea since Gem/Cis is the standard chemotherapy and most medical oncologist will use first.if you do not satisfied about the current oncology situation,2nd opinion for medical oncology in the same time frame of the radiogy consult is recommended.No matter where you go, there are always possibilities you will meet some good medical professionals as well as some average ones ;that is human nature as well as the culture of that institution.
keep in touch and thanks for your kind words about this web site.
Try your best my friend to take care of your husband and May God’s Grace take care the rest for you.
God bless.Hi,
Here is a practical solution and hopefully everything is going your way.First thing in the morning, call Mayo Clinics and ask them to redirect all your records to Dr. Gregory Gores, in the liver transplant unit and ask for him specifically to review your wife’s case,
Open the link below ,under Dr.Gores’s Picture use the email link to send him a Note.(I mean one or two sentences ,indicate you had sent records to Mayo Clinics and express your desire to request him kindly to take a look for your wife’s case for liver transplant possibility AND other surgical options that he can provide if transplant is not an opinion)I mean a few sentences , be PRECISE, just like what I write above in the () will be fine.
He is a nice guy and he will reply to your email in a day or two.
the link is:http://mayoresearch.mayo.edu/mayo/research/staff/gores_gj.cfm
God bless.
Hi,
I personally prefer asking your mom to see whether what choices she will choose after you explain of the chemotherapy treatments that doctor will prescribed for your mom in details. As you know,Chemotherapy is “evidence-based ” medical practice. Complimentary or alternative treatment (CAM) such as using dietary supplements are not.The third option is doing nothing ,just palliative care)for the purpose of quality of life for the patient,but I don’t think your mom is at that stage yet.
If your mom has a “case manager”,this will be the best time to ask for their help to manage the disease for your mom;they suppose to work solely for your mom and not the insurance company.
God bless.
