pcl1029
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Hi,
I have updated the above topic, adding links for Folfirinox and celecoxib; and some personal experience in the usage of capecitabine and celecoxib.I will update the same topic after the ASCO2013 held in Chicago in June,next month if there are any.
God bless.
Hi, Lainy,
You are too nice to say such good things about me. Thanks.
I also read the messages and info links posted by Gavin and others as well, their behind the scene contributions are as valuable to me as to other readers who need to know. they are my unsung heroes ; and the same to you and others who express their emotions,telling their stories , sharing their wisdom and wit.
Like today for example, I did research almost for 8 hours now;The medical articles are so dry and I am truly tired of them and when I stopped by here to check messages, I came across one of your poems; it helps to relax me and gives me a chance to take a break. See, Lainy, you don’t know you have such a powerful presence among us even when you are off this message board for just a while.
God bless.Hi, Bonnie,
You are truly a different and courageous woman;even in sickness, you still plan for your family’s future with such forward looking attitude and healthy mind set.
I have to tip my hat to you.
God bless you and your family.Hi, Jason,
I agree of what the steps that Rain suggested.
and please remember the treatment plans of cancer is like a triangle that include three arms of the triangle- 1. surgery;2.radiation treatment and 3. oncology treatment.1.You start the 2nd opinion or consult for the possibility of liver surgery first.; and DR. Kato is well known for his skill and willingness to go beyond the tradition boundary to give his best to the patient. anyway he is in New York and is closer than Mayo.(Mayo clinics,in my opinion is more conservative .)
2. At the same time get a 2nd opinion by interventional radiologist to check out the possibility of having RFA,radioembolization,SBRT,TACE etc. that can help you out to extend both the life expectancy and provide you a better quality of life to deal with this disease.(currently interventional radiation plays a big part in treating this disease due to the fast advancement of the equipments , techniques and protocols in recent years). You can schedule this at the same place when you see Dr. Kato to save a trip.
3. Even if you can have surgery done to provide you the only possibility of a cure for this disease;or have the radiation done ;you may still need adjuvant chemotherapy and or targeted therapy to mop up the cancer cells that are still inside your body after surgery. GEMOX+targeted agent like Avastin seem to be a good choice if you have peritoneal “nodules”.But I am not a doctor,like you ,I am just a patient of this disease for 48 months.
Therefore please consult your specialists in that order(1-3).
4. Do not forget to look into clinical trials by using our web sites; surprising results like the NIH TIL trial(immunology) really gives me another angle to look into the treatment of the future.
God bless.Hi,everyone,
Below is the above article if you cannot open the link.http://www.medscape.com/viewarticle/780454
The chemotherapy regimen known as FOLFIRINOX produces an “impressive clinical response” in locally advanced pancreatic ductal adenocarcinoma, according to the authors of a new small, retrospective, cohort study.
This chemotherapy regimen has been shown to improve survival in phase 3 trials of patients with metastatic disease but is relatively untested in this earlier setting, say the investigators from the University of Pittsburgh in Pennsylvania, led by Brian Boone, MD, a resident in the department of surgery.
Dr. Boone presented a study of the neoadjuvant use of FOLFIRINOX in patients with locally advanced disease today here at the Society of Surgical Oncology (SSO) 66th Annual Cancer Symposium.
FOLFIRINOX is the combination of 5-fluorouracil, leucovorin, irinotecan, and oxaliplatin. Between February 2011 and September 2012, the multidrug regimen was recommended for 25 patients at Pittsburgh’s Pancreatic Cancer Specialty Care Center. Their locally advanced disease had rendered 13 of the patients (52%) unresectable and 12 (48%) borderline resectable.
Ultimately, 4 of the 25 patients did not undergo the treatment and 21 patients (84%) were treated preoperatively with a median of 5 cycles.
With regard to the study’s primary outcomes, Dr. Boone said that FOLFIRINOX treatment was impressive.
First, 13 (62%) of the 21 treated patients demonstrated a Ca 19-9 response, a tumor marker commonly used to assess treatment response in pancreatic cancer. Second, 8 (38%) of the patients had an R0 resection (including 2 patients from the “unresectable” group). This rate is consistent with other single-center series in which chemotherapy has been used neoadjuvantly in locally advanced disease, Dr. Boone said.
Finally, 2 (18%) of the patients had a complete pathologic response. If this rate holds up in a larger, prospective clinical trial, it would be dramatic because, historically, only 2% to 3% of pancreatic cancer patients treated with gemcitabine, which has been a standard treatment, have had such a response, Dr. Boone said.
The multidrug treatment was well tolerated. One third of patients had a dose reduction and a little less than a third had treatment delays. Four patients (19%) needed hospital admission due to adverse events during treatment. There were only a few grade 4 events; 5% of the patients had this high grade of neutropenia and 5% had this grade of leukopenia.
Also, 15 patients received additional chemotherapy and/or radiation therapy prior to surgical exploration, which muddied the results somewhat, Dr. Boone admitted.
A total of 13 patients underwent surgical exploration. Seven (64%) of those underwent pancreaticoduodenectomy, 2 (18%) underwent distal pancreatectomy, and 2 (18%) underwent total pancreatectomy. Widespread peritoneal metastases were discovered at the time of surgery in 2 (8%) patients.
“FOLFIRINOX alone or as part of multimodality approach is a biologically active regimen in locally advanced pancreatic ductal adenocarcinoma,” the authors concluded in their abstract.
More on Toxicity
The investigators were inspired to do their study in locally advanced disease because trials of FOLFIRINOX in metastatic pancreatic ductal adenocarcinoma have demonstrated dramatic results.
In a landmark study published in 2011, FOLFIRINOX provided the best survival time ever reported in metastatic pancreatic cancer. Overall survival was significantly better with FOLFIRINOX than with gemcitabine (11.1 vs 6.8 months; P < .0001). However, “significant toxicity” is a concern with FOLFIRINOX in any setting, the authors of this new study state in their abstract. Indeed, Dr. Boone told Medscape Medical News that the toxicity reported in their new study of the multidrug regimen was an understatement. “I definitely think that we underestimated the toxicity because our study is a retrospective chart review,” he said. Also, notably, the median age of the 25 patients in the new study was 59 years. FOLFIRINOX is generally only administered to younger pancreatic cancer patients with a good performance status, Dr. Boone said.
Information from Industry
Rebif® (interferon beta-1a): Update your knowledgeExplore efficacy data
Recently, another clinician echoed this comment during a press conference preceding the 2013 Gastrointestinal Cancers Symposium.
Kenneth Yu, MD, from the Memorial Sloan-Kettering Cancer Center in New York City, said that at his center, “FOLFIRINOX remains the treatment of choice for our pancreatic cancer patients who are relatively fit.” However, he acknowledged the need for “judicious adjustment in dosing” with the regimen. Also, “most” patients are less robust and therefore not candidates for the multidrug regiment, he explained.
God bless.
Hi,
Even many of the chemotherapy for ICCA are derived from treatment of pancreatic cancer due to the fact that CCA is a rare disease and there were no standard protocol for CCA treatment as recent as a few years ago until the ABC trial shows that gemcitabine+ cisplatin had a better response than gemcitabine alone . The overall response rate for GEM/CIS is about 28-32% for CCA . Currently it seems GEMOX( gemcitabine+ oxaliplatin ) is used more often because of GEMOX is less toxic to the kidney.( cisplatin,oxaliplatin and carboplatin ,all belong to the PLATIN family.)
We are treating CCAand not pancreatic cancer and that is one reason for me to use GEM/CIS protocol. I do think the Folfirinox will work too, but I regard the treatment plans of treating ICCA is a war and not a battle, especially your wife is in good condition health wise base on what I can understand about her case from your messages. The long term side effects of.Folfirinox are accumulative , I do not know how long your wife will be on it once started,since it is NOT used in the context of ADJUVANT therapy, therefore most likely ,if the regimen works ,it will be used until the tumor shrunk enough to allow radiation treatment or surgery ; or until disease progress or intolerable side effects occur. But what if the side effects are too much for your wife to take and she get discouraged to use other chemotherapy regimen or targeted agents in the future. And this is my other reason not to start with Flofirinox first.
The best outcome for unresected ICCA is the chemotherapy works to allow surgery or radiation treatment like SBRT or radioembo. It will take a while ,in a couple of years if not in months to go from unresectable ICCA to all CT scan clean without trace of any tumor in the body.
God blessHi,
If my calculation is correct, you have been on the GEm/Cis regimen for around
8-9 cycles. The pain of the kidney may be related to the toxicity of the cisplatin and you should talk to your oncologist about it.
Since I am also a patient of ICCA, I had been on Gemzar alone for 14 months and never had problem with the kidney; Cisplatin is well known for its disease-related concerns such as renal impairment and Gemzar is well known for its side effect of thrombocytopenia; your doctor has reduced your regimen dosage and it was the same approach using by my oncologist when I had problems with my platelet counts during my 14 months of Gemzar treatment.
Hydration may help the kidney but make sure you mention your problem to the oncologist.
God bless.Hi,
If the diagnosis for your wife is ICCA, and if I were her, I will start the 1st- line chemotherapy such as GEM/CIS first. and if it is not working later, then I will start the 2nd-line chemotherapy such as Folflorinox. You can get some ideas about the toxicity of each regimen like GEM/CIS and Folflorinox by combining
each individual drugs(GEM/CIS=gemcitabine+cisplatin) and (Folflorinox=5FU+oxaliplatin+irinotecan,the folinic acid is not a chemotherapy agent).http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57198#p57198
I think your doctor’s original suggestion of GEM/CIS and radioembolization is a logical and good combination choice for non-resectable ICCA.
But I think you have had made up your mind already. So good luck and
God bless.Hi, Wilma,
Deeply sorry for your loss ; noe finally he can rest in peace without pain and suffering.
You were right, quality of life is of great value to patients like me when the time to make the decision. Again so sorry for the passing of your husband and
May the Love and Grace of our God be with you in time of crisis and easy your stressand pain , and attend to your needs.
God bless.Hi,
I have just one thing to add to the other voices.
There have been a lot of advancement in surgical approach as well as interventional radiation treatment since the beginning of the last couple years .
Therefore I will suggest a 2nd opinion by a liver surgeon,like Kato,Chapman,Brems and those in Mayo,Sloan-Kettering, USC, UCSF,Emory in Atlanta,Princess Margaret Hospital at Toronto ; and Sze at Standford or any interventional radiologist at Northwestern University for radiation consult is appropriate; also others well know university like Michigan,Pittsburgh,Duke ,Mass General and John Hopkins are good choice too to have a multidisciplinary board to review your case. I my self do not like to take chemotherapy , but there are a few that you can take by mouth and relatively produce minor side effects like fatigue or hand and foot symptoms which is easily manageable..But if the second opinions rule out all the above, and if you do not want to take the new type of targeted agents or chemotherapy agent like Xeloda,that will be fine.(remember, you are in charge, all you do is to check out whether you still have a chance to prolong your life without suffering the side effects of chemotherapy.)The reason for a 2nd opinion is to know what are the NEW choices that are available to you NOW so you can choose to extend your life without committing the mistake that you will regret it later. Besides if you go for clinical trails like the one offered by NIH for TIL (immunotherapy);you may be surprised by the result as one of our member had done so just once . this is a new era for cancer treatment and by no means is like the past decades .
I am not asking that you have to do what I suggest but if I do not let our members know about the alternative, I will be guilty for the rest of my life.
BTW,I am 64 and just like you, a patient of ICCA for 48 months; and by no means have any medical knowledge and training like your doctor had.
God bless.Hi,
sorry, I do not know the answer. 2nd opinion by another GI specialist is highly recommended.God bless.
Hi,
The main concern for my answer below is if the patient is satisfing with his current health condition and treatment plans and the future of his disease is not of his immediate priority at this moment , then what I say below may not apply.As a fellow patient myself, experts opinion do carry a lot of weight in making my decisions . But I do understand that sometimes like our Lainy said I have to listen to my guts too.
I do believe in God giving me the wisdom to know the truth and the best ability to discern the ambiguity if I continue to research and study this disease.
As you know, experts opinions could be different too, but the body is mine,my disease, my health and my life. I do believe if the expert themselves have the same disease, they will look far more and deeper into situations to help them or their love ones. It is simply just a common human behavior .In short, to wait for the tumor to grow slowly and see whether where it leads is not sit well with me. But than again , some times situations will be determined by this if you will accept this quotation.
” To change the things you can ,and accept the things you cannot change”
God bless.Hi,
For those who are living in the surrounding area of the windy city,This is a great chance for us to meet everyone of you, the members, that are involved in the fighting of this disease. It is just members and friends gather together, share and enjoy each other’s company , Most likely the time will be Saturday night ,June 1st,2013 6-8pm? at downtown Chicago.May be at a pizza place? (will be determined later)
if you are members on the discussion board or someone who just want to know who we are and what this organization is all about; What is the most current treatment are available that I know off ; and you are living within 90 minutes of driving distance in the Chicago and suburbs area.I think it is a worth while trip to let us to know you as well as for you to know about each of us.God bless.
Hi,
Since you have already lined up the three appointments ,I will wait after the 8 days consultation and make the final decision. I personally do not think the two week delay will affect the outcome that much.IF the consult provides you another option than starting chemotherapy,then it may complicate your situation if your wife has alreadybeen on chemotherapy.
As you know, the only possible cure is surgery. If surgery is not possible,then radiation or medical oncology consult should follow.Have you made the surgical consult yet; since you are in new york;If i were you ,i will made another visit to Dr. Kato At Columbus/Pres. Hospital, he , by far is the liver surgeon that I know most likely to find new ways to allow the most difficult patient to have a chance for the possible cure.
If you wife has ICCA but just have lymph nodes involvement without metastasis to other parts of the body;unless there are tumors in all three lobes of the liver and spread allover the places ;otherwise, if the tumors are focally located in different lobes; I think it is worth for a Dr. Kato surgical consult before both the radiology and oncology consult.
Again, i speak as a patient only and not as any medical professional expert.God bless.
