pcl1029
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Hi,
Thanks ,Gavin. Indeed a very deep appreciation for Helen ‘work and post this BILCAP poster so other people can look at it and understand the graph.I also thank Helen for the questions she raised with the CRUK . From the way the CRUK cannot pin point about the number of patients who drop out from the treatment arm and when did that happened; and to the fact that this study had started five years ago and they can only report the interim findings as such, it may tell us recurrence is a problem for the effective collection of data and continuation of the BILCAP trial;and they still need qualified patients to further the study.I could be wrong on this,but this trial result will surely be important for theCCA patients in the future.;both for treatment and quality of life.
Lately I see quite a few CCA Patients on this board on Xeloda alone or in combo with Gemzar .
God bless.Hi,
I copied the additional discussion with Richard here for the Bilcap.trial.
It may be of interest to you.“I looked over my info.(the poster I got from the 2011 ASCO)and your poster. Based on the graph(overall survival % vs months of survival) ;You can get according to the graph, a 12 month survival rate of 86.4% as the poster had indicated or 75% of the patients had survived at least 18.6months.(projection only for the 75%)
I could not arrive the same conclusion of 24 month survival rate at 82% like you indicated.
As you may notice the graph is just short of the 24 month mark when they plotted the graph.They had indicated on the interim report that due to the MEDIAN follow up of alive patients is only 9.3months and as such the survival curves are not STABLE beyond this time point.(when this interim report was done.)
The primary goal for the BILCAP study is to measure the overall survival,try to detect an increase in 2 year survival from 20 to 32% from 360 patients using adjuvant therapy of capecitabine only.”
God bless.Hi,Richard,
I looked over my info.(the poster I got from the 2011 ASCO)and your poster. Based on the graph(overall survival % vs months of survival) ;You can get according to the graph, a 12 month survival rate of 86.4% as the poster had indicated or 75% of the patients had survived at least 18.6months.(projection only for the 75%)
I could not arrive the same conclusion of 24 month survival rate at 82% like you indicated.
As you may notice the graph is just short of the 24 month mark when they plotted the graph.They had indicated on the interim report that due to the MEDIAN follow up of alive patients is only 9.3months and as such the survival curves are not STABLE beyond this time point.(when this interim report was done.)
The primary goal for the BILCAP study is to measure the overall survival,try to detect an increase in 2 year survival from 20 to 32% from 360 patients using adjuvant therapy of capecitabine only.
God bless.Hi,
Kate is right. I f you live in UK, try to get into the BILCAP trial which still need patients to attain the goal to report to the world their finding on 2013 ASCO meeting in Chicago. Provided you had resection done and nothing recur when join the trail.
I wll talk to the author when I see him on the ASCO 2012. And repot to all of you his findings up to that point.I did discussed with his interim findings at aSCO2011.and he indicated it is difficult to get more resected patients in UK since CCA is a rare disease.. And posted the main findings last June.they need more patients to achieve their goals
God blessHi,
“Am I right in saying, when used in cases like Jim’s where the cancer has already spread, gemcis is not a cure but may slow the tumors growth in the hope of providing more time and delaying the inevitable? Does it ever shrink the tumors? Is that unrealistic? The onc was really quite happy with the results and neither Jim nor I wanted to dilute the only positive news we have had since July by asking hard questions yesterday, but now we are wondering….”.Your are right in saying that Gem/cis is not a cure but may slow the progress of tumor growth.The response rate of Gem/cis in one large study(pt. pop.=204) is 26.1% and median progression-free survival is about 8 months. in three other small studies ,the response rate is 37%(30pt.);28%(40 pt) and 35% (29pt.).
and yes, chemo therapy can shrink the tumor(called partial response) and even make it disappeared(call complete response) or no change in tumor size(called stable) and prolong the lives of CCA patients like Jim and me.
But Gem/cis is not the only chemo for biliary CCA; there are many other options including different chemo agents,radiation like RFA,chemoembro or radioembro and the molecularly-targeted therapy agents. So there are still a lot of fire powers left to deal with CCA if one treatment is not working well to satisfaction.
God bless.Hi,
there are retrospective series and small phrase Ii studies suggest superior outcomes for patients who receive EBRT radiation with or without concomitant chemotherapy or the combination of post-op 5FU plus brachytherapy after resection of cholangiocarcinoma.
for patient who are left with microscopically positive margins after resection,the main benefit of postoperative radiation therapy is a reduction in the rate of local recurrence.
in one study, margin positive resection patients increase their 5 year survival
rate if they received postoperative adjuvant EBRT (34 vs 14%).
In another study,46 cholangiocarcinoma patients(total pop.=128 patients of hepatibiliary ca) had 3D-CRT radiation plus FUDR intrahepetic artery infusion;60% of all patient were free of hepatic progreesion at 3 years.
In short ,receive postoperative adjuvant radiation treatment with or without chemo may prolong survival.I know the above response may not answer the actual question that you had.
Should i wait until the CCA recur or do the preventive adjuvant radiation treatment as soon as possible?
MY answer is at least ,up to now, there are NO CURE for this disease;all the treatment plans are use to prolong or for palliative purposes;Recurrence is high in this disease(>65%). whether you monitor the disease progress every 3 months with scans like me or wait until the recurrence hit home. it is always a very difficult decision to make. Because there are no guaranteed for either way. But if you,like me, try the best we can, there will be no regrets when the time comes.
God blessHi,
INR 3.8 is high but not in the dangerous zone,normally,hold the dose for a couple days and restart at a lower level.call your nurse for the recommendation.
I think the B M frequency is acceptable,it is related to the amount of hydration and solids that your dad’s gut can processed.
God bless.Hi,everyone,
Thanks for all your encouragement.
I still under the wind but do not worry;today I can sit up and type to response to some messages.
I will be fine in the next weeks or so.
Life is interesting -it is not a straight line;it changes your priorities in a way that may not be anticipated at all;but thru the journey,we can all contribute a bit more to the society and become more connected;OH WOW.(please note i am not Steve Jobs,but I understand this 2 words in a more God related sense.)
God bless.Hi,Pam
below is the copied message that I send to your daughter,(at first I think Laruen is your sister,my mistake,sorry.)
God bless.
Hi,Laruen,
I want to talk to you directly .
You are young by the population standard of CCA patient(50-70).
I learned your situation from your mom Pam’s message thru cholangiocarcinoma.org web site.
I am a pt. of 31month of CCA,resected twice. and had chemo for 16 months.It was not a fun thing to do.I am 62.and i am consider I will need chemo therapy for a long time to come.I regard this disease as a CHRONIC disease like diabetes or high blood pressure. In this way I can manage this horrible disease day by day;going to work partime in my medical profession;helping out on the cholangiocarcinoma.org website;and not letting this disease take control over me. The journey of cholangiocarcinoma is a long and winding road that requires patience,knowledge and courage to travel.
The field of cancer research and application are changing fast;ASCO just released their goal for the next 10 years;that is in 3-5 years;all of patients medical records will be centralized;molecularly-targeted therapies will be the main stage of cancer diagnosis and treatment in the next decade;that means treatment is more personalized and specific than what is doing now.The hope of getting a cure and/or a much better treatment plan for different types of cancer will be at hand ;so hang in there and be active;do not let minor bumps in your journey of CCA to discourage you.
What i am trying to say is this,Lauren, always be hopeful even in suffering;for the Love of God will not disappoint you.
Since we both had the same disease and if you like,you can write to me directly of thru your sister Pam thru the CC web site.
God bless.Hi, peggyp,
thanks for your compliment . i just posted what I know and if I don’t know,I try to find it out and sometimes it takes longer .
thanks for your concern about my sister-in- law.She is very lucky to john the OSU clinical trial.God’s grace shines thru her.
God bless.Hi, Lainy,
thanks for your compliment.It is an honor that the foundation given to me even I am relatively a newcomer . In no way I can match you,Marion ,Gavin Stacy, Sara and others in the long time contribution to the members you all served here.
In gerneral, cancers divided into 2 groups(solid cancer-like breast ca;liver ca and CC and non solid cancers like leukemia).Researcher often try to use the new drugs they found and approved by FDA used for solid tumor(ie; breast cancer) and continue the research for additional uses and approval for other types of solid cancers(ie: kidney) ;but mostly it will not for non-solid form of cancer unless it is for investigational use.I think it is much easier for them to found new application and use in this way and faster for FDA approval . For example Gemzar is approved to be used for breast ca,NSCLC lung ca,pancreatic ca, ovarian ca. But as you know Gemzar is the 1st line drug for biliary cancer approval not long ago.
God bless.Hi,
Gemzar and Xeloda combination is much easier to tolerate than Gemzar/cis.
no hair loss like the Gem/cis. Diarrhea is the major concern,but the dose of Xeloda
is about half when it is used in combination with Gemzar. So, it may not be a problem.Hand and foot syndrome will occur much much later or may be not at all for the same reason. I will agree with the doctor on this.Platelet count is related to both Gemzar and Xeloda;normally when it is <50,000 they will not given the dose;other labs like granulocyte count will be a factor too.
CA19-9 at this point of treatment is not that much of concern;mostly is more related to the number of the nodules ;use it as a baseline for future reference.
My sister-in-law is stage IV,on Gemzar and Xeloda regimen since January,2011 and with no problems on the platelet count ,diarrhea or hand and foot syndrome.Currently her condition is stable.
God bless.Hi,
Besides telling the oncologist tomorrow about your dad’s symptoms;The lab work they will perform on your dad (CBC,BMP) will also tell the doctors about the current condition of your dad.
Most likely ,the lack of appetite may be related to the tumor fused with stomachas you mentioned before.
The tiredness is more related to the pain pill (NORCO) than the Gemzar . In general, patient in good health will feel better in the later part of the chemo treatment time frame(ie: feeling worse for the first couple days and much better toward the 6th or 7th day in the one week cycle.I am talking about Gemzar only; not with the molecularly targeted agents like Avastin or Tacevar the like.)
I do think your dad’s reserve,as mentioned by his personal physician who knew your dad for a long time is gone and tomorrow’s lab will tell you a better picture whether the chemo is affecting his current state of health.
God bless.Hi,
Mojgan,
I am so sorry at the loss of you mother. I wish thing could be different..
And thank you so much to let me know so soon, I deeply appreciated your friendship.
Sometimes God works things differently than humans because His plan is much perfect than ours. You and you brothers and sisters should feel very proud of you and ESP. You.you reach out from Iran to find info.to
help your mother.You are awesome,may be some day,when our two country rebuild good relationship.I can visit you and you siblings and say a few words or prayer to let your mom know how proud of her to have such nice kids that can reach out to the star and touch someone’life and make a difference across the world.May God’ grace,love;Christ’ joyful spirit,andThe Holy Spirit guidance and mercy be with you always no matter where you are.
Regards,
Percy.
If you don’t mind,I will put you message about your mom passing on th cholangiocarcinoma.org
.
On Oct 29, 2011, at 4:22 AM, Mojgan Bordbar> Dear Percy
>
> thank you for all of your advises
> you encouraged me to do whatever needed, I’m sorry to tell you nothing is needed to do anymore
> my mother passed away last week
> it was harsh time for me. I never loosed my hope till last day, I did not like to accept doctors’ words as they wanted to aware me about what is happening.
>
> I’d like to have your words furthermore
> god bless
> yours
> MojganHi,Gavin,
you are always one step ahead of us in current and uptodate information gathering.ublic release date: 23-Oct-2011
[ Print | E-mail | Share Share ] [ Close Window ]Contact: Dr. Hilary Glover
hilary.glover@biomedcentral.com
44-203-192-2370
BioMed Central
Liver parasite lacks key genes for fatty acid synthesis: Genome sequencing of Clonorchis sinensisThe human liver fluke Clonorchis sinensis affects more than 35 million people in South East Asia and 15 million in China. Infection by this parasite causes clonorchiasis. Repeated or chronic infection can lead to serious disease of the liver, gall bladder or bile ducts, including the frequently fatal bile duct cancer – cholangiocarcinoma (CCA). The complete genome sequence the genome of C. sinensis, published in BioMed Central’s open access journal Genome Biology, has provided insight into the biochemical pathways available to the fluke and shows that they are lacking enzymes required for fatty acid biosynthesis.
C. sinensis has a complex lifestyle. The eggs float in fresh water until eaten by snail. Once inside the snail they develop and grow into a free swimming stage. These burrow out of the snail and into a fish where the coat themselves in an acid resistant covering. Humans and other mammals are infected by the parasite by eating uncooked fish. Once in the small intestine the flukes migrate to the bile ducts in the liver where they live out their adult lives.
Over 16,250 genes were found within the 516Mb genome (the human genome has about 23,000 genes over 3Gb of DNA). Genes were found corresponding to genes for energy metabolism, both aerobic (used by the juveniles) and anaerobic (used by the adults). While the genes coding for proteins needed for fatty acid metabolism were all present, key enzymes were missing from fatty acid synthesis.
Prof Xinbing Yu, who led the team which performed this work, explained that, “Two other liver flukes S.Japonicum and S. Mansoni are also missing these enzymes. This means that liver flukes evolved to use their host’s fatty acids before the species separated.” Prof Xinbing concludes, “Genomic information is not only able to help us understand evolution but the sequence of C. sinensis is helping us understand liver fluke biology. This in turn will help find new ways of controlling diseases caused by this parasite or provide new targets for making a vaccine.”
see you in 10days.
make sure you say Hi to your mom for me.
the Bears is 4-3 but I as told you before,watch out for the 49ers.
God bless.
