pcl1029
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Hi,
Anything suggested here are for information purposes only,CONSULT your doctor first for any change of treatment plans .
my guest is that your brother has ductal CC. the treatment is DIFFERENT if your brother has intrahepatic cc.For ductal CC. PDT,SBRT, EBRT are suggested .(all are radiology procedures); all are palliative treatments.
“Systemic chemo like gemzar/cisplatin may not offer an advantage for patients with ductal CC.;alternative choices include 5Fu or supportive care.
In two small randomized studies indicated that biliary stenting with PDT therapy can prolong survival, compared to stent placement alone. clinical trial is another option .”(Tushar Patel Gastroenterology & Hepatology vol.8 April 2011)
How old is your brother?
What is his diagnosis ?
What stage was he when the diagnosis was made 2years ago?
Was the biliary drainage using stents inside the biliary tree,common bile duct to drain the bile internally or just surgically drainage to the outside .I suggest strongly get a 2nd opinion by an interventional radiologist.(a radiologist who performs special procedures like I suggested above-PDT etc.) to get a better idea of your brother’s situation.
God bless.Hi,Susan,
Thanks for your compliment.
The truth is,I have no choice,I am a patient and I do want to live if He allows me to do so.
All the things I do here on this board are not as demanding and emotional exhausted as for the all the caregivers who take care of their love ones like you before;knowing that the odd are slim in finding a cure or prolonging the life of your love ones.But all of you have to try your best to be a secretary,a cheer leader,a dietician, a driver,a nurse and doctor besides handling your daily responsibilities, working full time or being a mom or husband,or son and daughters.
It is very difficulty to keep calm while deep down in your hearts ,all of you are suffering and many are beyond tears.,By the way I am sorry for the loss of your husband.Susan.
But one thing I can say to all of you is that ,as a patient,no matter how tough some of us may appeared and how unappreciated we may be in front of the caregivers at times; deep down in our HEARTS,we appreciated beyond words that the courage and endurance that our caregivers have in caring for us.
God bless.Hi,Gavin,
As you may know,phase 1 clinical trial is for drug safety.Phase 2 is for effectiveness.Phase 3 is for more safety,effectiveness,dosage determination and use in combination with other drugs.
Normally drug company can submit a new drug application (NDA)at the end of the phase 2 .FDA has 60 days to reply to decide whether to file it so that it can be reviewed.FDA can refuse to file an application if it is incomplete.
One of the quickest drug for approval is AZT for AIDS-approved in 108 days in 1987.
Gleevec( a molecularly targeted agent for cancer) is also a drug received accelerated approval in 2001 for CML in about 60 days.The approval was based on the results of three phase 2 studies.(not phase 3)
But even the drug is on”fast track” in general,it may still take between 6month to 2years after phase 2 to get approval and FDA can withdraw the approval anytime if they find serous problems.
God bless.Hi,rodo,
Thanks for your compliment.
You may not believe my answer that I will give to you.
But yes ,I am a patient (ICC) stage II.
and yes,I am in a way also a caregiver to my sister-in-law who has stage IV ECC.
and yes I am also a healthcare professional working in a hospital setting in U.S.
what a small world that life is?
God bless.Hi,
The above link by Marion is very interesting and helpful in understanding the past and the future of cancer research.
Dr. McCormick’s research led to the development of sorafenib-a drug used in the treatment of advanced liver ,kidney and cholangiocarcinoma.
His research now is focused on RNA interference and he is betting with his fellow cancer researchers that in 5 years time they would see positive study results.
I hope so too.
God bless.Hi,
In addition to the above one that Gavin mentioned;there were 3 more abstracts(#4050,#e14614,#e14626) indicated that adjuvant therapy of chemo and/or radiotherapy will be of benefit to CC patients after resection especially those who are lymph node positive or R1 (margin positive).
God bless.
If you want to read the whole abstract go to
http://chicago2011.asco.org/Abstracts.aspx
on the left hand side ,click Abstracts.
then scroll down on the right side under highlights(the red box),click the 1st line”ASCO annual meeting abstracts are available”;
on the next screen ,click BROWSE-abstracts by meeting track; when the next screen comes up,scroll down ,under Gastrointestinal(Noncolorectal) Cancer,click Hepatobiliary cancer;then you can read all ASCO 2011 abstracts related to CC.Hi,Marion,
I think NCI should develop the guideline as soon as possible to catch up the needs of the patients.
The following is what I found after reading Lesley info.
I called
1. M.D. Anderson molecular diagnostic pathology lab.(1-713-794-4780 or you can fax them at 1-713-794-4773 or email to clewing@mdanderson.org).
2. Mayo clinic molecular genetics laboratory at 1-800-533-1710;international 507-266-5700 ;they are on call 24/7.
3.Massachusetts General Pathology services(which include diagnostic molecular pathology) 1-617-726-2967 ;fax#617-726-7474.I talked to all of them including their supervisors;(again,this is a very common and good practice to go the top to get the info. provided you ask them nicely;just politely ask them to transfer you to talk to their supervisor of the department head.
-The result- No body can suggested a time frame for the slides using for testing.Besides molecular pathology, there are also metabolite and enzyme assays available from Mayo in case you need them but they are expensive.for example KRAS mutation costs 1247. and EGFR mutation panel costs 2300 compare to the one I got from the ASCO 2011 conference From China,the whole colorectal panel is 900 and the lung panel,which included EGFR mutation costs about 1100. Of course the quality and the insurance reimbursement are other matters you have to consider too.
The following web site will provide additional info. with regard to tissue sample
and blood sample specimen requirements from one hospital.http://www.mdanderson.org/…/core-facilities-and-services/molecular-diagnostics-lab/how-to-submit-a-sample/
and then go to the top left hand corner type in how to submit a tissue sample;then click the first item on the next screen and it will show you the info.God bless
Hi,Jason,
I think the treatment plan for your mom now-that is 12 weeks of gem/cis is a good choice;after that if chemoembo and RFA combined treatment can be performed ,it will be perfect. But remember, recurrence is very common,and it can recur at NEW locations;so after the MRI with contrast, and before the combination treatment, make sure there are no new lesions on the liver; and if so surgery is always a better option if it can be done.
Stage I(T1,N0,M0) or StageIIa is my guest.
Tell your mom she is very lucky and God is watching over her.
and tell her don’t worry too much about the side effects,it will come but she can tough it out.
Ask her to use her connections (being a nurse in her profession)to talk to the doctors, her peers,the oncology nurses to gain insight about her disease. If they do not know,they are always very willing to find resources to help their peers and that is very valuable. This is how I get my free consultations and I found that is very useful in knowing the uptodate condition of my CC.
I always thank God for discovering my CC early enough that I can still work,get treatment and do research for CC at the same time.Now thru this foundation,I can learn even more and up to date for CC treatment and related subjects for me and all of us. This is not what I planned for my retirement,but if God choose this way for me,I will have no regret.
God bless.
As always,the above is for information purpose only ,always consult doctors first.Hi,
please email me if you have any more questions; again sorry for the delay.
BTW,may I ask how your mom discovered she had CC in such an early stage?
by accident or related to other health problems?may I ask what stage is your mom’CC?God bless.
Hi,Phil.
I think , base on the inconclusive PET and MRI report,the bilary surgeon concluded that he did not have enough evidence to rule out or confirm the recurrence of the CC. Therefore he opted for the “observation approach” which is MRI with contrast or PET/CT in 3 month and see him again.I think nothing is wrong with that approach and if I were your husband,I will take it as a good sign at this point of the prognosis of the disease.
God bless.Hi,Gavin.
What a good timing for you to get this info.out for all of our member to understand the currant concept of treatment.
Thanks and God bless you and your mom.Hi,
Second oncologist opinion is needed for your husband if I may suggested.
Ask if your husband cannot take chemo;how about molecularly targeted agents like Tarceva or Sorafenib? or is it possible to get platelets infusion to boost up the number and then give chemo. ;ask why or why not of each of his/her answer in order to understand the doctor’s thinking process of his/her recommendation..
I am not a doctor,I am just a patient like your husband,but I will ask these kind of questions to help me understand about the doctors thinking process specific to my disease condition.
I also may urge your husband to see a hepatologist (one who specialized in liver) for evaluation of his liver cirrhosis and hepatitis B condition.In the past few years,antiviral drug like entecavir can treat chronic hepatitis B very effectively.and of course ask the doctor about anything can be done on cirrhosis too.
Hepatitis and liver cirrhosis complicated the plan of treatment for CC .
The criteria cut off points for platelets for most clinical trials is >/=100,000.
therefore your husband may not qualify.But I did notice some patient received Gemzar alone when the platelets is around 75,000.It really depends on the experience of the oncologist and the condition (the health status) of the patients.God bless.
Hi,
It is truly up to your dad to decide to have chemo or not.
How old is he?
Does he want to be on chemo continuously to prolong his life ?(ie; until disease progress or untolerable side effects occur)
it is a very difficult decision but each patient is different on how to cope with the disease.
For myself , I am a stage II patient,even Gemzar alone for 14 months was not a picnic, I did not lost any hair ;I did not have serious N/V issues ;I drove home after I had my chemo every week after work;I went to bed right away; I spent the next 2-3 days at home to relax;and I went back to work.
It is the process of going to have chemo every week ,knowing that there may be no end in sight for cure that makes me think twice ,is it worth to do this?On the other hand ,I only have one live to live,may be if I try my best;to be on different treatment plans that related to CC and learn as much as I can,and telling other people;then may be one day God will show grace on me again.(He already did)and find the cure for all of the CC patient.
After I stopped the Gemzar for 6 month,my CC comes back and now I am going thru the same process for re-resection again in July.
You can read my story on the radiation forum on this web site
“RFA and chemoembo-a case study of myself” to learn more.CC is a long and winding road,no easy way out;knowledge and courage are needed for patient and caregiver to negotiate the benefit and outcome.
God bless.Hi,Monkeytet,
How old is your dad?
I had liver resection for 8hrs in 2009,everything was fine,out of the hospital in five days. I lost about 20-25 lbs. and regained 30lbs later(in about 4-6months period).
Always consult your doctors first; the following suggestions are for information purpose only.
1. give your father Carnation breakfast drink (200-300cal/can)1 can in the morning in addition to what you have done for his calorie intake.
2.Give another can of Ensure or similar protein drinks in high calories(360 cal/can) any flavor. any time in the afternoon;between lunch and dinner time.
3. encourage him to eat vegetables and fruits ,banana(high potassium);blue berry and the like(high antioxidant) orange and pears (4-6servings/day) ;in addition to the regular meals.
4.Ask your doctor to change Reglan and prescribe something else)- it is drug that increase the motility of the upper GI tract ,therefore diarrhea is a common side effect;Reglan is also an older medication that prescribed for treating nausea/vomiting due to its anti-dopamine effects to block the stimulation of dopamine.Therefore drowsiness and fatigue are also common but less so.
Older anti-nausea/vomiting drugs included
1. Group 1(antidopaminergics).- prochloperazine;promethazine;reglan.)
2. Group 2 like cyclizine, meclizine,dimenhydrinate, benadryl,scopolamine and tigan are belong to anticholinergics group.
3.Group 3 like corticosteroids (dexamethasone),cannabinoids and hydroxyzine are belongs to the miscellaneous group.
Try to ask your doctor to switch to another group of med if the one your father took is not working or try a combination from different groups.
or use newer ones like the following;
New antiemetics such as the
1. 5-HT3 receptor antagonist group- ondansertron (Zofran), dolasetron(Anzemet), granisertron (Kytril)and palonosetron(Aloxi) and
2. the NK1 receptor antagonist like aprepitant (Emend) and others are on the market ;they come as an oral capsule or tablet.Emend has to be taken with other antiemetics and on schedule for the maximum anti -nausea/vomiting.
On one of the ASCO 6/2011 poster session abstract#9091,indicated
“significant clinical benefits in favor of palonosetron were also seen in the delayed and overall time periods on the number of emetics episodes and the severity of nausea.”when compare to the other 3 5-HT3 receptor antagonists.
Also for anticipatory nausea;XanaX 0.5mg-1mg with Benadryl 25mg-50mg 20-30min before chemo works well with me.
Ginger root has been used for a long time for controlling nausea in Asia. a study of 644 patients were randomly assigned to placebo or ginger (0.5-1gm capsule twice daily for six days) ;starting three days prior to the first day of the next 2 cycle of chemo treatment.all of the patients received 5-HT3 receptor antagonist on day 1 of all cycles.Significant reduction in nausea throughout day 1 of the chemo cycles was observed.
To find out the cause of nausea and vomiting besides thinking it is only comes from the chemo is important too. (ie; is the patient on antibiotics too?does the patient have no bowel movement?Is he on too much opiates?
5. if the lab work was done in a hospital,ask your father for permission tolet you get all the copies,including MRI,PET and CT scan and pathology and surgical reports for surgery.(It will be of great value in the future).A final note,don’t be afraid , but be strong;your father needs you to be calm and confident to help him.From my experience,everything will be fine. I was and I am still a patient of CC. I learn one thing from having this disease;there is really nothing I can do except praying and keeping on learning about this disease.
God luck and God bless you.Last edited by PCL1029 (Today 14:09:22)
Online
Hi, sorry, I have to copy and paste this info. for you after I answered another member for N/V problem.
Older anti-nausea/vomiting drugs included
1. Group 1(antidopaminergics).- prochloperazine;promethazinereglan.
2. Group 2 like cyclizine, meclizine,dimenhydrinate, benadryl,scopolamine and tigan are belong to anticholinergics group.
3.Group 3 like corticosteroids (dexametason),cannabinoids and hydroxyzine are belongs to the miscellaneous group.
Try to ask your doctor to switch to another group of med if the one your father took is not working or try a combination from different groups.
or use newer ones like the following;
New antiemetics such as the
1. 5-HT3 receptor antagonist group- ondansertron (Zofran), dolasetron(Anzemet), granisertron (Kytril)and palonosetron(Aloxi) and
2. the NK1 receptor antagonist like aprepitant (Emend) and others are on the market ;they come as an oral capsule or tablet.Emend has to be taken with other antiemetics and on schedule for the maximum anti -nausea/vomiting.
On one of the ASCO 6/2011 poster session abstract#9091,indicated
“significant clinical benefits in favor of palonosetron were also seen in the delayed and overall time periods on the number of emetics episodes and the severity of nausea.”when compare to the other 3 5-HT3 receptor antagonists.Also for anticipatory nausea;XanaX 0.5mg-1mg with Benadryl 25mg-50mg 20-30min before chemo works well with me.
Ginger root has been used for a long time for controlling nausea in Asia. a study of 644 patients were randomly assigned to placebo or ginger (0.5-1gm capsule twice daily for six days) ;starting three days prior to the first day of the next 2 cycle of chemo treatment.all of the patients received 5-HT3 receptor antagonist on day 1 of all cycles.Significant reduction in nausea throughout day 1 of the chemo cycles was observed.
To find out the cause of nausea and vomiting besides thinking it is only comes from the chemo is important too. (ie; is the patient on antibiotics too?does the patient have no bowel movement?Is he on too much opiates?
God bless.
