1 (edited by Katja Thu, 22 Mar 2012 13:14:28)

Topic: 2 years clear!

Hi all,
Sorry I don't get around to posting as often as I'd like to.  I guess my dad might be along soon but thought I would let you all know that he has the fantastic news of another clear scan today.

A bit of background in case anyone's interested: dad (58 at the time) presented with jaundice etc in Dec 2009.  He had a Whipple at St James in Leeds in Jan 2010. The surgeon (Mr Menon) had got clear margins (just) and there were 7 lymph nodes involved.  He was accepted onto the chemo arm of the Bilcap trial and went through six months of Xeloda.  Since then he's had six monthly scans - today he was told he will move to scheduled yearly scans.

Needless to say we are all absolutely over the moon.  The oncologist told dad that now he has passed two years, his chances are greater and greater for survival.  We all know just how lucky he has been and are so so grateful.

Best wishes to everyone and apologies for not being around more!  I'm a bit busy myself now with two children - my whole family's life has changed such a lot since my dad's diagnosis.
Kate

Re: 2 years clear!

Kate...fantastic news.  Congratulations.  No need to apologize for not posting often - we are always thrilled to hear from you whenever that may be. 
I am looking forward to the continuous postings in the Good News Section of our site.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: 2 years clear!

What wonderful news! We all love to hear about good stories that give us hope!

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: 2 years clear!

Yes indeed "still here" and "still on here" after a two year all clear scan.

Are clear-scan days always sunny days or is there something else going on here I wonder !

The walk into the consultaning room after a one hour wait is one of the longest ever but when walking in the opposite direction with positive news it is the shortest imaginable. "See you next year" has never been so welcome a phrase.

Katja had the celebrations on the table when we get back ... but grandson Joe not impressed at all ... we've got sunshine and a soccer ball....what else is important?

Oncologist sketched descending survival graph with horrifically steep drop over first couple of years - as we know only too well from this site and from AMMF in UK -and then a flat lining over subsequent three years.

Posted with major feelings of personal good fortune

Re: 2 years clear!

I have chills!!  I am so so excited and so glad for you and your family.  You give hope to so many.

Thank you for posting and I look forward to year 3 and 4 and 10 and 20!!

I'll have a glass of wine (or a beer) this evening in honor of you and your family!!

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: 2 years clear!

Hi Kate and Malcolm,

Woo hoo, what great news indeed!!!So love hearing this type of news and I am so chuffed for you both! And of course, I am so looking forward to hearing more news from you in this section in the years to come!!!

Best wishes to you both,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: 2 years clear!

Always nice to hear GOOD news! Best Wishes!

Re: 2 years clear!

Sounds fantastic! I have a scan set for about 3 weeks from now or so when I'm done with chemo so we'll see what happens then...

Derin

Husband to Eileen, Dad to Hunter (15) and Sydney (13)
Attitude is everything, you have to keep it positive! And take it one day at a time, it's all anyone can do with this disease...

Re: 2 years clear!

Congratulations on your wonderful news! I read your post with great interest...I was 58 when diagnosed with cc in Dec. of 09, had my resection in Jan. of '10 and just had a good scan at Mayo!  Let's plan on having parallel good news for many years to come!

Re: 2 years clear!

Hey Dianne!

I was diagnosed in Nov. 2009 and had my whipple surgery Dec 2009 and just had good news about my latest can in the beginning of February.    Let's keep up the parallel good news for all of us!!

-Randi-

Survivor of cholangiocarcinoma (2009), thyroid cancer (1999), and breast cancer (1994).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

Re: 2 years clear!

Dear Katja and Malcolm, what wonderful news, just fantastic. Enjoy it all, especially those Grandkids! I guess Joe knows what is important! Wishing you the very best and looking forward to only good news!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: 2 years clear!

Kate, Malcomb, and Randi - what great news for all of you!  Congratulations and keep on posting good news!

Cindy

Re: 2 years clear!

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
God bless.

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.

14 (edited by Malc2073 Mon, 26 Mar 2012 13:32:35)

Re: 2 years clear!

Thanks very much for all the congrats etc.

When I was struggling - I always went straight to the Good News Section and hope others are doing the same right now.

I also took great comfort from the senior posters on here who reminded me that in considering the odds around cc "you're not a statistic - you are YOU"...do keep reminding new arrivees here of that please .....


Percy - I'll try to recall the chemo - will need a bit of thought but I'll get back to you. Part of the Bilcap Trial is the completion of a questionnaire which includes many of the areas of interest to you. I did mean to ask Helen of the findings from this aspect which must be available or logged somewhere. I recall Helen pointing out the Xeloda is used because of high tolerability levels and that was my experience in general. I remember being interested in the drop out rate from the trial due to side effects - again she may have answers for you.

Re: 2 years clear!

Hi,Malc2073,
Thanks for the BILCAP completion questionnaire in advance.
But I also want yours,since you tolerated the drug quite well.Just try to recall whatever side effects you had if you cannot get the questionnaire.
I want to compare  the data provided by you to the research data that I had.
You did mention the curve(the one that in the BILCAP trial poster) and saw how steep the first part of the study is. I will use your data and compare to others and I will talk to one of the investigator of the BILCAP study face to face if I can locate him/her in the upcoming ASCO 2012 convention.And I will report back here.
Thanks once again.
BTW, I did try to edit the "cholangiocarcinoma" info on the Wikilpedia web site;as you mentioned before ;their language is harsh and not up to date.but one of the contributor changed it back to the old version; at this point I politely ask him the reason why and I don't believe he knows this disease as much as I do. So, at this point I let the old version stands just to be polite; and await for his/her answer. but if you want to read what I wrote, you can click the view history on the top right bar on that page.
God bless.

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.