pcl1029
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Hi,
Very interesting article,This is the first time I hear about 2 different types of ICCA. Still reading and just in time for the medical conference for tomorrow.
Thanks and
God bless.Hi,
Thanks for your compliment about our website .It is a collective effort and all the members are volunteers as well.
I am glad that you pursuit more than one opinion and find the best solution for your dad. Dr. Jarnagin is one of the top liver surgeon in the New York area and your dad will be in good hands.
As you may have known already, surgery is the only possible cure for this disease.and the surgery may take around 8 hours .I hope the surgery will be uneventful and your dad will be discharged in a week or so.
God bless.Hi, everyone,
I have again revised the “systemic treatment” by adding the two articles about cancer treatment using vaccines and TIL immunology and its comparative future with mAbs and small molecule ( TKI).
God bless.Hi,
You are correct, and so does the messages on this forum; no one should trust the internet information completely; You have to educate yourself to make the correct judgement and decision for helping your self.The same can be apply to reading and researching medical article on the web. Not all of them about our disease are of useful info for us. but it is also important for us,at least me in this situation as a moderator to provide as many and as fast as I can read the original articles that provide insight and proposals and choose the one that that can help our goal of finding cure no matter whether it is oncology,radiology,surgery,CAM and immunology related and if we can, we also try to provide the best suggestion to all of the patients who ask for specific questions.,Our Gavin,Eli and some other members are doing the same ,providing their own details to try to help other patients who may be having the same situations.And our Senior Moderators like Lainy and Marion too. But no matter how much time we can spend on questions and patients as well, the ultimate decision is onyou and only you and your family to decide alone whether the information your receive from this forum is just news or of benefit to those who seek and learn about this disease.
The above statement is apply to all of the members as well.”Buyer be aware”
God bless.Hi,
There is no consensus regarding the optimal management after resection and the true benefit of adjuvant chemotherapy remains uncertain for Ampulary.
In the States, however most of the patients with resected ampullary cancer stage IB or higher will offer adjuvant chemotherapy.
Depending on the true origin of the periampullary tumors which are of intestin al,biliary or pancreatic origin is very important in pts with metastatsis as the approach differs since the optimal regimen for ampullary is not established.GEM/CIS or GEMOX have been used as well as GEMZAR mono therapy; Infusional 5fu is preferred concurrently with chemoradiation,followed by gemcetabine alone for the chemotherapy portion.uptodate.com(oct.2012).
clinical trial is another option.
Ampullary Cancer is among biliary cancers that has the highest 5 yr survival rate than any of other form of CCA.For overall 2nd opinion, MASS Gemeral or John Hopkins is the place to go;
For surgical consult, Dr.KATO is the guy because he is very experienced and willing to be on the cutting edge of liver surgery.Talk to him first is not a bad ideas but should be as soon as possible due to the multiple lymph nodes involvement in your case. If you have peritoneal carcinomatosis(abdominal lymph nodes did mention in your message), then it may be too late for this consult.Mare sure it is not the case.
For oncology consult, MD Anderson in Texas is the place to go.but I will wait for the assessment of DR. KATO first.I took vitamin D1000 units twice daily for about 2 months, it lower the ALP to about 10-12 points withtin one month in my case.But I ask my oncologist what is that mean. he said ,I only monitor and check why the ALP goes up with regard to the CCA; but not about the lower value and what it means.We just don’t do that. and he may be right,he is my friend and I think he spoke the truth. therefore I stop doing vitamin D,( it goes below 32)
I took Celebrex too,but the recommended high dose for cancer is too high and can cause stroke and cardiac problem.it does require a bit of medical and pharmacology knowledge to titrate the dose for the maximum benefit and watch for the side effects as it comes with.I am not a doctor but a patient only, and as I said before,” I am a one man clinical trial specimen” and for that ,please ask your doctor to see Celebrex is right for you.
God bless.Hi,
I tend to be different with regard to recurrence. I believe that once you have CCA, even after you resected ,the chance to recur again is between 50-75%, depending on what type of CCA you had , with the best survival rate for distal CCA. I would not comment on your case,but please keep on searching and reading the messages on this board until you will find the most appropriate answer to you that is related to your case the most. Seven years out of the wood is a major victory over this disease, but I will not let my guard down for one bit.Re- resection, Adjuvant chemotherapy and targeted therapy,long term maintenance chemotherapy, RFA, microwave ablation,chemoembo , radioembo, IBRT,SBRT,( cyber knife ,nano knife), PDT ,proton therapy, immunotherapy such as adoptive cell therapy(TIL treatment). All of these are potential treatment for recurrence . As you know ,the liver can regenerate itself, that means, even if there is only one cancer cell left in the liver or the bile duct area after surgery, that onecancer cell can also regenerate with the heathy cells and multiply into millions over time and become cancer again.Therefore I don’t think in the same way that you think about this cancer.But I am not a doctor, so I can be wrong and you can be right.
One more thing, to monitor cancer thru only blood work every year may not be enough,CT scan once a year after survival for five years may be the best way to monitor the recurrence. Your oncologist should give you clear instruction on that.I personally will not be bothered by the radiation from the CT scan since I do believe ” the benefit outweighs the risk).
God bless.Hi,
Do you know what stage of tumor,what part of the tumor located, is is inside or outside of the liver or the tumor is located right under the liver when the bile ducts just exit the liver.?. Any metastasis in other organ like the lymph nodes, lungs,peritoneal and abdominal areas and the bones.? How big is the tumor or how many we’re them? How old is your husband? Are you willing to travel outside Washington to seek treatment? Do you have HMO insurance or PPO.?
You should get 2nd opinions by sending in all the CT computer disc and the written reports labs and stent procedure reports to Mayo Clinic or USC or Dr. Kato at new york Columbia / Pres. Hospital for surgical consult. of course if you can, schedule a face to face appointment is much better than just paper work consultation. If it is nothing can be done. And the current GEM/CIS chemotherapy don’ t work after the next CT result, then you should get a 2nd opinion on oncology consult by M D Anderson down in Texas.
God bless.Hi,
It is only by the Grace of God that I am still alive today. Most of the people on this board have known me for a while already, but for those who newly joined us, I am a patient for 46 months and still on chemotherapy; and with relative good health and energy that can let me choose as an advocate for this disease on this forum as well as other organizations like the FDA.
The point I want to make is that, each additional day that we can have beyond the burden of this horrible disease,we should not forget thousands of the others who are having this disease and still waiting for their term to be set free from this disease, or at lease to have same the opportunity like us who are relatively well and in remission.
I think this is the strongest motivation for all of us , who are able to contribute to this cause, to be an advocate for this disease by joining or seeking the various areas of advocacy like Marion suggested to help ourself to learn more about this disease(as the recurrence rate is awfully high) and at the same time helping others who are in need and less fortunate than us. I sincerely believe that if more of us taking on as advocacy voices in our communities, the more people will aware of this disease and more research will be done on this disease and the sooner we(including me and those who are in remission) all will be free at last of this disease .
I always wander if #34 of the Chicago Bear spoke out as an advocate of his disease at the time of his diagnosis , what will be the benefits that he can give to all of us by now because of his fame and love by all of the sport fans at that time? But instead, he kept it quietly till the end of his life..
God bless.Hi,
1.Can you use age 60 instead of 58 to give me a better idea about the picture about the graphs you draw. it may be better for comparison of other medical studies.
2.I would like to see the following graphs if you have time.A. radioembo treatment vs adjuvant chemotherapy in survival outcome .
or length of survival if they still alive. .(ie: use the time of both the staring time for radioembo treatment and the adjuvant chemotherapy, and not the time of DX.). you can included the sex and age(60) on the graph. if you wants to.Please check my email to you first.
God bless
Hi, Holly,
You are the lucky few that can have surgery by Dr. Kato due to the fact that you responded to the chemotherapy so well and so soon to allow you such amazing opportunity to have surgery and radioembo to follow. You are truly God’s Grace in action.
From molecular biophysics to professionally musician ,and had studied economics in between shows the adaptability and determination you have been in your genes; well fitted to research , fight and help others in the same situation as us.
BTW, may I ask what instrument you play, I played French horn in high school but now I completely forgetting how to play again.
I love to hear your assessment about the radioembo experience you had after you had the CT scan done .
I will be in DC on 4/5-6 and if you have time , I would like to meet you to see how things going.
God bless.Hi, Lainy,
Absolutely can be done for GIST cancer and most if not all forms of cancer.
The success will come from genomics research and development of new drugs after they find out the abnormality of the genes that cause the cancer and develop new drugs to counteract the problem.
I think immunology research will benefit to all of the cancer patients in the future, a much better approach in long term management in treating cancer.
God bless.Hi,
I know you was on prednisone for a while. are you still on it? otherwise you can ask your doctor to prescribe it for you for short term use ; it may decrease your ability to fight for infection if you take prednisone for too long.
Increase dosage or add or change to another antihistamine medication by your doctor is another mean to help the situation. please ask your doctor for the above suggestion before changing meds and dosage especially most of the first generation antihistamine medications like Benadryl,Vistaril,cyproheptadine can cause drowsiness but can be more effective in providing relief for you. Second generation antihistamines like Zyrtec ,Allegra and Claritin can be used in daytime .H2 blockers like Pepcid , Zantac and Tagamet works too.
Go to Walgreens or CVS and ask the pharmacist to get you “Aveeno Oatmeal bath” product suggestion for helping your itching is another suggestion.
God bless.Hi, Bruce,
Can you tell me how many of us( patients) on this discussion board ,based on your research data collection,had radioembolization done, their age,sex,duration between the start of treatment and final outcome, and the end point( ie:survival result)?
Thanks,
God bless.Hi,
“I guess the next steps for me are:
1. Take second/third opinions on all reports
2. Plan for chemotherapy etc..
3. Prepare for the expenses and plan relocation as per 1 and 2..
Will appreciate any comments / information on the above.”Are you planing to get 2nd opinions in UK or The States ?
Mostly nowadays ,if the surgery went well,6-8 weeks after the surgery, adjuvant chemotherapy will be initiated , followed by chemo-sensitized radiation is the most popular choice of course of treatment in the States.
God bless.
