pcl1029
Forum Replies Created
-
Posts
-
Hi,
DVT=deep vein thrombosis( blood clot around the calf,lower leg or thigh .)Warfarin will take care of the problem.
Again ,I am not the doctor ,so ask your doctor to prescribe the adjument dose.
Maximum dose for Aldactone is 400mg/day mostly and furosemide is around 40-80mg/day. Both depend on the electrolytes balance of the sodium and potassium this balance is very important, therefore you need the doctor to determine the dosage whether than taking the matter on your own.
God bless.Hi, Carlos,
Besides ask the doctor to adjust the dose of both medications if not contraindicated to you mom’s current condition if it is caused by edema.
Ask the doctor to check whether your mom may have develop DVT ,especially in the areas below the knees that may swollen,very firm and painful .God bless.
Hi,
How often you test the CA19-9. Monthly ,quarterly? What were those 3 CT scan results since then( you said every 3-4 month will have CT scan and lab )
We need to look At the trend especially almost 11 months now.
If you just had no treatment after surgery as compare to have adjuvant chemotherapy, or radiation , the story will be different .( looking back into your message, you said you have no adjuvant treatment, it is ok if the doctor decided as such,because adjuvant therapy is still a debatable subject inthe medical field)
CA19-9 is for monitoring the adjuvant treatment’s effectiveness or. The progress of the disease.( what were those four month results of the CA19-9 AND the ALK phosphorus result)
Sometimes depend on the timing of the treatment and the CA19-9 lab drawn, it may go higher during the dying of the cancer cells still are in the the blood system, but will trending lower if the treatment works over that 11month period.
Ask the oncology to explain to you so you will have the knowledge to follow through and understand your own CCA. I do believe each of the CCA patient condition is different and therefore comparing one patient’s case to a similar one may not be the best way to understand about your OWN CCA.
CA19-9
>129 is indicative of CCA.based on sensitivity and specificity when first diagnosis in general.
Intrahepatic CCA ‘s value ,in general ,will much less the extra hepatic CCA.( but after I read your message, may I ask you how do you know you have INTRAHEPTIC CCA? Or just because the tumor is in the liver and you guessed so.Did the doctor just said you have cholangiocarcinoma ,period. You said the surgeon said he had to reach down to the duodenum ? And this made me think otherwise that your tumor start from the hepatic ducts or the common bile duct.CAN YOU provide the CA19-9 results over the last 12 months and what adjuvant chemotherapy or radiation you have received so far?
God bless
Hi, everyone,
Besides the fish is one of the problem in the Far East and Southeast Asia like Thailand; in middle east and including the above regions, afloatoxin of contaminated grains during storage(ie: moldy ) such as rice etc and the products that made with them also may play a role in the development of cholangiocarcinoma(ie: in Egypt) .and (ie: peanut butter and cooking oils are other examples).
You know those days huger still a problem outside the States.
God bless.Hi,
This link may help too.http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=81006#p81006
God bless.
Hi,
No matter what, the best bet for you is to get a second opinion from a liver surgeon,not just an oncology surgeon. Liver surgery is a specialty of its own. I would send CTscan disc to Dr. Shelby at USC or UCSF to take a look. DR. Chapman in St. Louise or at Mayo clinic liver surgeon . You will be surprised .
I don’t think there are enough time for more questions and hopefully it will be a simple answer.God bless.
Hi,
please remember “interventional radiologist” and “oncology radiologist” are two sub-specialities of radiology; not every medical oncologist or even general radiologist know the details of what they are.
Be sure to ask the right person.God bless.
Hi, Marion and Dr. Lin,
Thanks for the info. and I totally agree that ” the interpretation is very important – perhaps even more important for molecular profiling.”
In my case, one company recommend 5FU and the other one say no from the same tumor tissue.Therefore bioinformatics companies that help with INTERPRETATION beyond what’s just provided by the sequence providers can be helpful.God bless.
SENSITIVE subject ;think if you want to know before you start reading.
Hi,
” Is chemo good or is it better to live with the cancer and enjoy every good day of life.”
To be honest:
If I were at your dad’s age. I will choose no chemotherapy and enjoy every good day of my life ,sitting on the bench in front of my house and watch the beautiful things go by.(winter,spring,summer and autumn leaves.)
Chemotherapy is never a good thing to begin with, even if it kills cancer and provide a few of us to live longer.
Everybody can tolerate chemotherapy short term, but for long term usage, like years or the life time,for me it is inhuman.I believe the longer a patient on chemotherapy, the weaker he or her will become to fight against the cancer as well as other common disease; and of course this will affect the outcome of both the quality and quantity of life.t This is just my opinion only and not for purpose of guidance if at all.God bless.
Hi, Scott,
I read the ibrutinib package insert and find nothing relate to CCA.
however I find the following link of orphan drugs and approval list as of 9/3/2013 to be of some value ; item #7 is for liver and ICCA and be honest I don’t know Pentamidine will works for liver tumor.http://www.hrsa.gov/opa/programrequirements/orphandrugexclusion/orphandruglist.pdf
God bless.
Hi, everyone,
Here is the link from FDA with regard to the approval of the above “break through” drug.
http://www.fda.gov/Drugs/InformationOnDrugs/ApprovedDrugs/ucm374857.htm
Your tax dollar is truly at work for you and the pace is faster for approval of new cancer and immunotherapy agents if the results are as good as the FDA link suggested for ibrutinib ORR=>60% and LONGER disease progress free period.
God bless.
Hi,
If you are sure you only have “intrahepatic cholangiocarcinoma (ICC)”; and I f I understand correctly you have the tumors in the size of mm rather than cm; and depending on how large the lymph nodes you have.
In my opinion, you should consult an interventional radiologist to see whether chemoembolization and RFA or microwave ablation may be of benefit to BURN off the tumors in the liver and IRE or cryoablation may be used to eliminate the lymph nodes met if not contraindicated ,then after the ablations,use the current chemotherapy as adjuvant therapy to prevent recurrence.
Another suggestion is to consult a radiation oncologist to see whether IMRT,SBRT is of benefit to you.
your situation in a way is similar to mine ; and please remember, I am only a patient and not a doctor.God bless.
Hi,
I did both the Foundation ONE and the Targeted Report.
In my opinion, The foundation One report about the gene mutations of a patient can provide, if available, the treatments or clinical trials that are mostly likely be of benefits to the patient’s tumor unique situation.
Target report ,at the time I ordered about 2 years ago, did not use the “next-generation sequencing” genomic profile but used the old “staining techique and FISH ” method.
My result, as others that were experienced and written on this board ,is that there are currently no FDA approval regimen available;but 2 clinical trials(ie: one is p53 gene suppression and the other is related to CDK4/6 genes; one is IV ,the other is PO.) but are no guarantee and my timing is not right at this point to pursuit either.
In short, both reports help me to prepare for future battles but not for the immediate horizon for my situation.But it may be of benefit to you if they actually find one that fit your tumor biology now; then all you have to do is taking that regimen or clinical trials rather than try this and try that if the first one don’t work..
I believe the more people to do the next-generation sequencing genomic profile ;the better for all of us in the future; I regard it more or less like as a” baseline Ct scan” when I first diagnosis.
God bless.May I ask how old are you?
If you want to live, and enjoy life as you suggested, I strongly recommend you to go to ER -and ask for a CT scan of the abdomen and pelvis, this is the quickest way to get a ct scan, Just say I worry about my illness to grow further. then choose one and go to ( either Mayo, USC or UCSF,Mass General, or Washington hospital at St. Louise Mo. )to get a multidisciplinary board review for you and get the most up to date information and diagnosis for your condition. As you said your doctor guessed you may have CCA; this is a good time to confirm the problem.BTW, I will not have this chance to response to you had it not an early diagnosis was made because ,by the grace of God, I asked for one CT scan just for out of curiosity . It turns out the tumor I had, had been grown for a couple years before the diagnosis.
The worse thing is ,if you have ICCA, it can grow inside for years without symptoms . I did not have any symptoms when diagnosis is made.it is just happened this way so I can live to and talk to you and other members on this message board for the past 55 months ,and hopefully for many years to come.
Since you mentioned you are very determined to live : then let me say one thing more;Nowadays ,chemotherapy may be just a pill taken by mouth, not the IV you think you will have with side effects; i think this is very close to having treatment without the awful thought of suffering from chemotherapy. it is also true that there are better anti-emetic drugs on the market to control the side effects of having chemotherapy ; simply put, the treatment is a lot better than just 5-7 years ago.
But the final decision is all YOURS to make. Whatever your free will leads you.
God bless.Hi,
How did you find out you have cholangiocarcinoma?
How do you monitor the progress or the lack of progress of the disease or just do nothing?
Any other form of treatments that you can share?
What type and stage do the Cca( intra or extra hepatic) when first diagnosis.
BTW, plasma jet is an alternative tool for use the traditional electrosurgery tools for cutting tissue etc. now widely used during surgery.
In my opinion,it looks like the cutting processing using plasma jet is slower than the electrosurgery tools but may be of interest for using when cutting is near or abut the artery or veins.God bless.
