pcl1029
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Hi,
I am a patient for 36 months now;and I am not a doctor,but when I saw your message and read about your remarks—
-“We then got the results by an email about a week later, he has some little cells on the right side of the liver so the surgery is not an option at this point.”Is there any chance you can directly quote the “impression section or summary” of the latest PET scan to let me understand what that “little cells” means;I may be of help just in case;if you need privacy,you can email me as an attachment thru this web site.
Have you plan to consult with interventional radiologist to see whether RFA (radiation frequency ablation)can be done on the right side for that” little cell spots” or may be radioembolization or RFA combined with chemoembolization can be done. If so, you can have the left lobe resection done along with the procedure mentioned above done for the right side to provide you a better treatment plan.– and this is the only reason I ask for the PET scan or CAT scan summary.
God bless.Hi, eli,
please send me an email thru this web site; I need your email address;I can’t find it on this board. it is about your request of”Any chance you can get hold of the article PDF? I’m keen to read the entire article.”
God bless.Hi,Gavin and Eli,
I have just ordered both part I and II from the hospital library;hopefully I will have them by next week and will do a summary for all of the members here on this web site.
Thanks both again for the links.
Eli, please take care of your wife first and
Gavin,please say hi to your mum for me.
God bless.Hi,
Thanks for your compliment, Marion, just like you said patient and caregiver share their experiences and knowledge to help each other.
God bless.Hi, Gavin,
I will try.and be sure to say hi to your mum for me.
Chicago is wet and cool lately hopefully It will turn around soon.
God bless.Hi,everyone,
I have move this overview up again to let the new members have an overview about this disease(CCA); nothing has been added or changed.
God bless.Hi,
The key to Chinese Herbal medicine is to find an experienced practitioner(very important);please read about this under our experience forum title under “Complimentary and alternative treatment”HCC is relatively chemotherapy-refractory tumor .Systemic chemotherapy is usually not well tolerated by ptients with significant underlying hepatic dysfunction(ie: liver cirrhosis,hepatic B or c involvement).
In general, monotherapy like 5FU,gemcitabine,irinotecan and thalidomide have been used;combination therapies of cisplatin with other agents like 5FU,,Xeloda,gemcitabine,doxorubicin have been done also. GEMOX and FOLFOX and XELOX are regimens that can be of use.
Summary: The efficacy of cytotoxic chemotherapy is modest in patients with HCC.— “Systemic treatment for advanced HCC”– from uptodate.com literature review version19.3 sept.2011.
Targeted agent like Nexavar( ie:400mg twice a day) provide some benefit to patients and the treatment is well tolerated(side effecgts included diarrhea,hand-foot skin reaction) the treatment outcome depended on the health status of the patient(ie:degree of liver cirrhosis) at the time of diagnosis.
Other targeted agent like Avastin,sunitinib(Sutent),erlotinib,cetuximab have been used for HCC as clinical trials when used in combinations.
Hormone therapy like tamoxifen,megestrol and octreotide have been studied in advnced HCC but cannot be recommended outside the context of a clinical trial.
If there are no spread or mets outside the liver, 2nd opinion or consult by interventional radiologist is recommended to consider other radiation treatments like RFA or radioembolization is of value to the patient.
I hope the info helps.
God bless.Hi,
the card you had is general information about Xeloda for patients.( list of side effects that are MOST common to patients)
the info I listed above is for the Health professionals .(additional side effects which are pertaining to the drug Xeloda. I only list the ones that may be related to your case;there are still a long list of adverse drug reactions that I have not mentioned.)
and in your case,it is not their fault to give you a list that did not list all the side effects; and in the final analysis, there is possibility that your problem may not even related to the drug itself.All i can say is that each case of this disease is different in responses to chemotherapy or radiation treatments . and that is why knowledge is power for our patients who seek them.
God bless.
Hi,
As far as I know, princess Margaretvhospital in Toronto is the #one cancer research in Canada ; and experience in this disease. I will suggest to get a 2nd opinion from them before staring anything chemotherapy locally.
God bless.Hi,
for your information
Adverse drug reaction for Xeloda including the following.
1.Anemia.(72%-80% pt. experienced this S.E. and severe in upto 9.6% pt.)
2.dizziness
3.hypotension(0.2-1.2%).(including orthostatic hypotension–=0.8%)
4.stroke.
5.hypokalemia.
6.syncope(fainting).
7.vertigo(a feeling of motion ie: spinning movement ,while patient is stationary-not moving.)
9.visual impariment.
there are other side effects of Xyloda but the above side effects are more likely related to your situation of vertigo or vision problems.
Lab test like CBC and BMP can be of help;but ER visit or doctor’s office next day or ASAP is recommended.
referrence;Clinicalpharmacology-ip.com
God bless.Hi,
The chemotherapy will not be that much different than in treating the bile duct cancer. Once the cancer metastasized to other parts of the body.system treatment is the only way,at this point, for treatment.
Palliative treatment is, I think, the intention of the oncologist at this point.
God bless.Hi,
In the States here, patient consent is very important; however cultural difference may play another role in other parts of the world. But in general,it is better for the patient to know what is exactly going on for him or her. After all it is her body and her life. I think it is too big a burden for anyone to bear such a burden for another person.
Decreasing in swelling is good. Eating is good ; eat more fruits and vegetable,protein such as poultry ,beans and nuts.
Concentrate on the current treatment plan research and less on trying to find other unproven or unconventional treatment suggestions over the Internet ; try to spend quality time with your sister to creat lifetime memories for both of you. And please forgive me if I say something not agreeable with your thoughts.
To get a second opinion on radiation treatment such as radioembolization or RFA is a logical choice if there are no mets to other parts of the body.
Usually in the States, if the treatment works,as it seems on your other posts indicated,continue the same regimen until disease progress or intolerantable side effects occur is usually what the oncologist does.
If patient agrees,palliative treatment should be consider if “quality of life” vs “quantity of life” indicates the former.
Iam a patient of ICCA for 35 months,and I am also part of the caregiver team for my sister-in-law who just passed away last month for the same disease.
Good luck and
God bless.Hi,
welcome to this small world that we have to meet in this way.
I am a CCA patient for 35months and counting;dull pain near the rib bones is not uncommon due to the tumor is pushing against the chest or in other case,due to the the seroma or biloma(bile in a capsulated form).
you are right in the direction of considering balancing the “quality of life” vs the “quantity of life”.
gemcitabine and cisplatin is the regimen that used the most to treat CCA;GEMOX is the other one that is less toxic to the kidney;either way it is tough for the body.
Cholangiocarcinoma(CCA) is a long and winding road,it requires courage, knowledge and patience to navigate .
God bless.
