pcl1029
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Hi,
About cell differentiation comparation.http://www.differentiatedcarcinoma.com/
With regard to the pathology report, I think it provides a good professional answer to the medical professional to understand the report.
It tells you everything are fine at the time of incision exam with the common bile duct cutting edge normal with clear margin but display atypical appreance of the normal cells should be. In short, please read the link below even it is not specific for cc, but the opinion holds true.Hi,
About different stages,http://www.cholangiocarcinoma.org/staging.htm
As you will learn later, the most important is the location of the tumor in future Tx . When recurrence will come around.( 50-75%)
Nutrition and supplements are not of value in PROVEN benefits .that is why doc said whatever she can it,but avoid fat and eat more protein(ie; soy) may be of benefit.
Listen to your doctor for chemo and radiation is a very appropriated suggestion.
I am a patient and know much about this disease within the last four years only.One final word, do your research before you take action since internet information (including this web site) are used by the public and not every suggestion by the public is of any true benefit.
As a rule of thumb, for this disease, there is no quick fix keep up to date in knowledge about this disease in surgery,interventional radiology and medical oncology development is important. Every CCA patient is different even they are belonging to the same intrahepatic or extrahepatic group. or even for the same patient in different recurrences;that is just my way of thinking about this CCA disease and not a proven medical fact.
God bless.Hi,
The link below indicates the “may be risk factors “of cholangiocarcinoma.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=57121#p57121
Choledochal cysts is one of them.
God bless.
Hi, Mary,
In general, “Paclitaxel-(Taxol) a chemo agent in the Taxane family that primary inhibits the cell cycle during mitosis;thus the tumor cell cannot duplicated and die;Taxol should be given before cisplatin if both drugs are used at the same time for maximum benefit of the combo.;also inhibits angiogenesis but is tough to take.
Additional info: 0/15 response rate ,(JCO August 1996 vol.14 no8 2306-2310. Newer agent like Nab-paclitaxel studies will come later.”With regard to your case, the first thing that come to my mind is you had 28 radiation treatments plus 5 SBRT in May,and therefore “radiation recall reaction”which may occur to patients who have received previous radiation will be a concern that you may have to address to your oncologist. Symptoms included nonproductive cough,dyspnea, and oxygen desatuaration. Radiation pneumonitis,pneumonia has been also reported.
Apart from that, watch closely about the liver enzymes AST,ALT,alkaline phosphates and total bilirubin level ; dose reduction may be required if bilirubin>1.5 and AST/ALT.>2 times the upper limit of normal.
The loss of the body hair is the most common side effects(87-100%); hematologic side effects included neutropenia(90%),
leukopenia(90%),thrombocytopenia(20%)and anemia(78%). Most of these side effects are more significantly influenced by the duration of infusion (3hr course or 24hour ) versus the dose given.
Fever (12%) was reported and therefore chances for febrile neutropenia
(2-55%) and opportunistic infections(30%) cannot be ignored.
Other side effects included myalgia and arthralgia(60%),hypotension, mucositis,peripheral neuropathy, nausea/vomiting(52%),diarrhea(38%),
visual disturbances ,tiredness and ascites are not uncommon.
You may or may not have any of the above side effects; These are just for information purposes only.
God bless.Hi,
Stents are mostly for the extra hepatic CCA; you have the intrahepatic kind and unless your tumor is way down near or in the left or right main bile ducts in the liver to block the bile flow, you may never need a stent. Jaundice is the sign when to talk to your doctor about stent.
God bless.Hi,Amir,
As a father myself, of course, I like to see my son get marry and carry the family name on for generations to come. I am an old fashion guy when comes to traditions but I am also try to keep me up to date on the knowledge of finding a better treatment for this disease.
I am a Christian by faith, sometimes we have to accept whatever God decides ; we can use God given wisdom and guidance to try our best ,to care of our family and make our future brighter even in the mist of disappointment.
That is why I told Ms.beautiful ” eyelashes” and you ” TO CHANGE THE THINGS YOU CAN AND ACCEPT THE THINGS THAT YOU CANNOT CHANGE”.
As long as the chemotherapy works and your father can tolerate the chemotherapy,that will be fine. Surgery depends on whether the tumor can be shrunk enough to do the procedure and the current health status of your dad. As long as the chemotherapy works, I do not think you need to get interventional radiology treatment at the SAME time but it will be a very wise choice down the road if chemotherapy stop working. 2nd opinion on interventional radiology is recommended if chemotherapy failed . ( ie:University affiliated hospitals in Iran) In the meantime, be strong , and enjoy the family time with your dad and the whole family. It may not be a bad idea if you can see your family doctor or go to the drug store and ask the local pharmacist to recommend an anti-depressant for you if the pharmacist are allowed to do so. It will help you to be more at ease to deal with the emotional of ups and downs of taking care of your father.
Again,seek help for yourself and be healthy . I think your father will agree with me on this too.
God bless.Hi,
Miralax is fine, over the counter Colace or Senna+ colace are other choices.
Glycerin adult suppository is gentle but ducolax tablets or suppository are fine too if glycerin suppository or Colace 100mg donot work.
I took Gemzar for 14 months and relatively was well tolerated.
God bless.Hi, Lisa,
I feel fine and thanks for your prayer daily.
As far as the situation goes, I will not know the exact responses from the RFA and PEI procedures and the daily oral Tarceva until my next PET scan in September.
Thanks again for your prayer daily for me and I will do the same for everyone.
God bless.
Hi,
If the drug goes through the FDA as “fast tract” or “breakthrough” status, it will be the equivalent of what you wanted. Indeed FDA did approve drugs ,esp. the so called “orphan drugs” in a much shorter time frame instead of the usual longer period required.http://www.fiercebiotech.com/special-reports/top-10-experimental-cancer-drugs-2013?page=full
God bless.
Hi, Mark,
Indeed, it is good news and I hope you will enjoy more of them in the future.
Take care, Mark.
God bless.Hi, Amir,
I am sorry for the situation you are in now; you are a good son for your family and the prince in your father’s eyes.
A couple years ago, on this web site, I met a young woman(whose name means “eyelashes”) from Iran who came on this message board,like you, and asked for opinions to help her mom who had the same type of cholangiocarcinoma.
If I remembered correctly in the exchanging of e mails, I told her” To change the things that she can and accept the things that she cannot change”.
Amir, I am only a patient and one of the moderator on this board.As a patient, I know first hand how your father is feeling right now, both physically and mentally,but as a father of four myself, I am not worrying about my illness as much as the future and happiness of my children; and I am sure your father will be thinking the same about you and your brothers and sisters . Base on your message above, I know you have tried your best in taking care of your father,the same way as a commander taking care of his troops in the battle field, and therefore you should be proud of yourself in caring of your father to such a great extend without any regrets.
Please take care of yourself ,in doing so, your father will be proud of you knowing that his son will be healthy and fit in the years to come.
God bless.Hi, Barbara,
Where is my lobster? just kidding,
Thanks for doing this every year. Your devotion is as, Marion said, front and behind the scene;helping out in all the medical conventions across the country,talking to those doctors with heavy accents and training your bladder to a degree that can endure 6-8hours without leaving the booth. What a gal.
Your husband ,Jacque, will be extremely proud of you to extend such kind of great devotion and love for him year after year.
Again ,thanks for your contribution and see you in the next ASCO2014 or sooner.
God bless.Hi, Marion,
The gene amplification and overexpression are important in case of patients have done the Chemotherapy sensitivity report or the”next-generation gene sequence” report. You will understand why the oncologist choose the medication he intend to for you, but if you know the difference between amplification and overexpression even in simple terms, you can question the oncologist why not use the other medication and let him or her explaining to you.. A good oncologist will compare the results in the reports and choose the one that best for you, others just pick what the report said. Nothing wrong with that, but as you know, the oncologist knows if you know what you are talking about,they will look into your case more closely and carefully and who will be benefit for that? you the patient.
And that is my intention to post the above.Hi,
I think everybody is different, for example I had 3 resections and I just finished with RFA During my 4 recurrences in a 53 month period. However, I think Randi still clear of recurrence after 3.5 years.
She has extrahepaticCCA and I have the intrahepatic kind.
Stats in general shows recurrences with a high % between 50-75% with the distal CCA has the lowest recurrence rate and ICCA the highest. But as you know, some members here did not have any recurrences after 7 and 15years.God bless.
Hi,
“What are the possible side effects of GEMZAR?
There is a risk of side effects associated with GEMZAR therapy. Some side effects may be severe or fatal.
Call your healthcare team right away if you have difficulty breathing. These symptoms may lead to death.
Call your healthcare team right away if you have fever or chills. These symptoms could mean you have an infection.
The most common side effects are low blood cell counts (red blood cells, white blood cells, and platelets); fever; infection; hair loss; tiredness; nausea; vomiting; constipation; diarrhea; rash; shortness of breath; muscle aches; blood in urine; hearing changes; and numbness or tingling in your toes or fingers. Lab work may identify additional side effects.”
As a patient, I know :
It is also true that if your father’s WBC count is way too low, neutropenic fever will be one of the reasons too. it may be fungal infection if the duration of neutropenic of>7days who have persistent or recurrent fever and in whom reassessment does not yield a cause in cancer patient; or it may be of the less serious gram positive and gram negative kind which all it takes are antibiotics prescribed by your GP and the fever and chill will be gone.
Furthermore, your doctor can switch the chemotherapy to other kinds of chemotherapy agent like 5 FU to see if fever will be eliminated during treatment.
The comorbidity of your father having “cardiomyopathy and borderline diabetes mellitus” is always a concern with regard to have chemotherapy treatment.
If you can get a 2nd opinion on oncologist consult to see whether what opinion s/he will provide to your dad.
And remember, I am only a patient like your father and not a doctor.
God bless.
