Hi,MaLc2073 or Katja,
First congratulation for joining the BILCAP study and finishing with the best possible result that the study can offer.
I know about Helen's work through Gavin and her communication message here . She is very devoted to her AMMF (the foundation) and work tirelessly for the same reason as The Cholangiocarcinoma Foundation here. she follows The BILCAP study very closely and offer me great help in both personal and professional interest in understanding the study.The BILCAP study result and outcome may eventually affect the international oncology community in treating CCA.
If I may, is it possible for you or your daughter to describe the adverse reactions/side effects AFTER each cycle of Xeloda.(total=8cycles) and give a grade from 1-4 to describe the severeness of each problem.(grade 4 is the most severe). I am interested in the PROGRESSION or the LACK of it of the adverse reactions.
Thanks in advance for your help.
Here is the grade system that you can use to describe the side effects.
I am looking for 6 of the following side effects;but if you can add the ones that affected you the most.( or those did not listed below). it will help in the research too.
1.Grade 2 diarrhea=more than 4-6 stools/day.or stools at night while sleeping without the help of antidiarrheal medicine like loperamide.
2.Grade 2 nausea=food intake significantly decreased but able to eat intermittently due to nausea.
3.Grade 2 vomiting=2-5 episodes in any 24 hour period.
4.Grade 2 hand-and-foot syndrome=PAINFUL erythema(redness or rash of the skin);swelling of the hands and/or foot; or dry and cracked skin on hands and heels of the feet.
5.Grade 2 stomatitis=PAINFUL erythema,edema or ulcers of the mouth or tongue,but able to eat.
6.Grade 2 fever and neutropenia=a fever of 100.5F or higher or any evidence or signs of potential infection.
IF Any of the above>Grade 2,please list the severeness and assign it as 3.
Any of the above<Grade 2 assign a number of severeness of 1 or zero.
If you can provide the beginning and ending date of each cycle,and WHEN the Grade 2 or higher side effects occur ,it will help tremendously.
Good luck and
Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.