pcl1029
Forum Replies Created
-
Posts
-
Hi,
I can only speak on behalf of my case and please remember I am only a patient and by no means have any medical knowledge like a doctor.My last CT scan shown I am still clean.(ie: nothing can be seen in the scan to suggest me I have CCA); but I will be on Xyloda for 2 more years.
On the other hand, as Dan said “It now seems that nothing has changed, i.e. we’re back to square one just ‘monitoring growth’ again. Maybe I am being impatient/naive but the cancer is still there and it is still growing, so why wait for it to grow some more?”
God bless.
Hi,
All I can say is : there are absolute differences in the treatment plans as well as the approach of advising CCA patients between UK and the States.
God bless.
Hi, everyone,
Here is— the announcement.
FDA Voice Blog: http://blogs.fda.gov/fdavoice/index.php/2013/04/help-fda-help-patients-have-a-bigger-voice/
FDA Consumer Update: http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm348661.htm
God bless.
Hi, Lainy,
Thanks for your compliment, but you know without you on this board,there will be no poet to calm our emotion;there will be no companionship among caregivers and patients alike; and there will be no “steroid driven” funny stories to be told. Youare one of a kind that this board cannot afford to be
without.
I just do what I can for the very few of people who seek specific info. But the majority people need you and other members to provide the emotional support that a man like me most of the time cannot understand or provide.
God bless.Hi, Huong-my,
Please keep the appointment with Dr. Chung at Spectrum Downtown this coming wednesday for the discussion and review of his labs/DX. In the meantime, prepare and gather all the CT scan computer disc,radiology and lab reports and start contact the hospital of your choice. You can wait after the Wednesday appointment to do so.
For Wed, appointment; ask the surgeon
1. what other alternative treatment if he says no for surgery(ie: radiation treatment like SBRT and the local oncologist he will recommended)? and why your dad cannot have surgery? is the tumor locate in a difficult area(ie: near major blood vessel) so surgery is not possible? How big (ie: 2cmx3cm)is the tumor and where is located?
2. What stage of cancer your dad is in right now? I,II,II or IV.
3. ask him where he will recommend you for a 2n opinion?
4. If your dad can have surgery, ask him how many cases of liver surgery he has performed last year or so(ie: 8 cases last year_) and ask him to explain what he will do during surgery?(ie: take out the left lobe );the recovery time after surgery(ie; how long needed to stay in hospital).
5. If your dad can have surgery;then tell him/her(the doctor) you will think about the surgery and will call him back.(after you get the second opinion from other hospital).
6. Keep in touch and tell us on this message board what the doctor say afer the Wednesday appointment.In the mean time try to look up the info on this board the stages of the intrahepatic CCA; and choose one of the patient on this message board who had intrahepatic CCA like your father and learn about their experience so you can prepare what to expect.
Finally, knowledge is power and the more you learn about this disease ,the better understanding you will have to help your father. and this web site is one of the place to look for up to date information for this disease.
God bless.Hi, Gavin,
Thanks for your compliment and be sure to say hi to your mum for me. how is she doing now? Back home now?
God bless.Hi,
May I ask what state you are living in now so I can lend you a hand in recommending a hospital for you.
Even if the doctor from spectrum will operate on your father,it does not mean your dad getting the best treatment. The liver surgery of cholangiocarcinoma (CCA) required liver specialist to perform the operation . Mayo clinic Dr. Gores and his peers, New york Columbus/Pres. hospital Dr. Keto and his associates;Sloan-Kettering in New York, Dr.Brems at Sherman Hospital in Elgin/Chicago and Washington University in St. Louise and UCSF or USC in California are the choices on the west coast.
Surgery,radiation and oncology are the three arms of a triangle that you have to seek help for each specialty before the best decision can be made.
I am a patient and not a doctor,but i can tell you I am still alive after liver resection for almost 48 months now and I am doing well. So here is my suggestion:
1. Calm down first and knowing that it is not the end;every patient is different in response to treatment and the prediction of “how long a patient can live” are not apply to everyone and I am one of the example of that false statement.
2. Choose one of the above hospital and call or email them to start the process the sooner the better;tell the people who answer your call that you want a 2nd opinion on surgery of the liver and need to see a liver specialist or surgeon to check out whether surgery is still an option for your dad., a 2nd opinion on radiation treatment if surgery is not possible and finally a 2nd opinion on medical oncology to start chemotherapy or clinical trial(in that order if you can) .
Other people will come soon to give you emotional support and comfort you better than I could.
God bless.Hi, Mary,
Thanks for your compliment. It helps me as well when I do the research for this disease because I am also a patient too as you may know by now.
Frankly sometimes I get depressed during my research on this cancer;on the other hand most of the time, I feel the chance for us, as patients of CCA , to survive longer and better in the near future is not out of the question due to the advancement of radiation technology, the aggressiveness of the surgical approach and to a very limited extent ,the chemotherapy and targeted therapy.
God bless.Hi,
below was the suggestion I had made to another member who had ask the same question about docetaxel monotherapy not long ago. Here is the link.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=70607#p70607
Normally, if the current regimen works (stable or shrinkage of the tumor),most oncologist will keep the same regimen until disease progress or side effects intolerable.
There are conflicting data as to the benefit of docetaxel in CCA patients.
one study indicated that out of 25 patients of CCA;there were 2 complete and three partial responses ( overall response rate=20% ). Another study of the same regimen was ineffective in a second phase II trial of 17 patients.
Side effect : grade 3-4 neutropenia were not uncommon.from uptodate.com.
BTW the high WBC=43 is because of the Neulasta(pegfilgrastim) injection was used to increase the WBC count and thus reduce the risk of infection due to chemotherapy induced neutropenia (white blood cell deficiency).God bless.
HiMary,
Yes, it applies to SBRT also, see below quote from 21stoncology.com.” External Beam Radiation Therapy (EBRT) technologies,is including Stereotactic Body Radiotherapy (SBRT). Because of the pinpoint accuracy of this technology, SBRT can deliver higher doses of radiation in fewer treatment sessions, with less risk to surrounding healthy tissue. Treatment is delivered in one to five sessions compared to five to eight weeks with standard EBRT treatment. SBRT is particularly effective against small, well-defined tumors in inoperable or surgically risky locations such as the liver or lung.”
God bless.Hi,
Please start at the paragraph with the heading “The future direction” if you do not want to read the rest.
At present I think the adoptive cell therapy like TIL seems working for our CCA.
At least one of our member still doing very well on just ONE TREATMENT.
compare to multiple treatments may be required by the DC . But I will keep on searching. BTW Dr.Ralph Steinman was one of the recipients of the 2011 Nobel Prize in Physiology or Medicine. who discovered DC, had tried to use DC to treat his pancreatic cancer but failed.(died 3 days before the announcement of the Nobel prize); to be fare, it is occur 18 months ago right at the dawn of the
genomics research development, so things may be different if it occurs now.http://www.ff.ul.pt/FCT/PTDC/SAU-MII/102689/2008/3.pdf
also: The following shows the frequency of administration and the duration of treatment for one form of cancer. and the % of effectiveness of the treatment in general is about 20% overall.
http://www.cancer.ucla.edu/index.aspx?recordid=446&page=644
God bless.
Hi, everyone,
My answer to this topic is, if you and your caregiver can wait for 5-7 more years and you(the patient him/herself) wants to fight it out and will endure the side effects that the treatments dish out for you; then please keep up with the current knowledge to decide when to give in or give up.The “5-7 years” time frame is given by Dr. Hahn who is a medical oncologist and runs the The Center For Cancer Genome Discovery Lab, one of the largest 24/7 genetic lab in the States, and is the Deputy Chief Scientific Officer at Dana-Farber Cancer Institute. He said his lab has discovered several new oncogenes as well as targets that will pave the way for new therapeutic approaches.The approaches ,the models and the tools that his lab had pioneered and developed have already become widely used worldwide to discover and validate molecularly targeted cancer therapies.
Dr. Hahn indicated that 5-7 years from now, the field of chemotherapy and targeted therapy will be a lot more precise and the treatment approach will be much more specific and less adverse drug reaction cause by the new crops of new drugs that will be on the markets soon.The same sentiment was also echoed by Peter Smith,PhD, the executive director of Drug Discovery Biology at H3 BioMedicine where he is responsible for overseeing drug discovery and translational medicine efforts of lead projects. He also works on identifying novel mechanisms of resistance that impacted clinical trial design and involved in additional drug discovery effort. His research efforts resulted in the design and initiation of several clinical trials . But he also suggested if all the labs can share each lab’s data as an open source with each other , and bring the patients , researchers, clinicians and scientists to work together then things will go much faster and sooner.
In short, cooperation among different groups and patient education are the keys for speedy new drug development in targeted therapy and biomarker development.
So, just try to give all of you an up- date development and/or difficulties on the frontier of new drug development and you decide what you will do with this information in the future if needed.
The above information was from the CanLiv symposium that I had attended on April 5, 2013 in Washington DC.
Personally,the above information somewhat changed my mind about what I had decided . And I will keep an open eye on both the new drug development and the new interest in immunology related treatment for cancer to make my final decision on my condition at that moment when the time is come.
God bless.
