Re: Survival...Please tell us your latest milestone

Chez...congratulations on the Hernia repair. Who is old? I thought everyone on this Board was under 40!!!!!! Including me. It looks like all things are go for your BIG CHRISTMAS TRIP TO IRELAND. I would probably be packed already. Many thanks for the good update!

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: Survival...Please tell us your latest milestone

Oh Lainy. You know I should post my beautiful Irish/welsh/American grand children's pictures and you will see why I'm so crazily enamored. But I know everyone with grandchildren feels the same way .  I wore my little red ceramic heart pin on my hospital gown that my 5 year old grandson Oliver made for me. And I was surrounded by the care of the nurses on the mainly pancreatic cancer surgical ward. Where are so many angels found all at one time in one place?  I can hardly contain myself from packing.  Have to have a few tubes out first smile

Re: Survival...Please tell us your latest milestone

I would LOVE TO SEE YOUR GRANDKIDS! There it nothing like it in the world. They have no expectations and give so much love. I have 4 here in Phoenix however, 3 are in College but we still have our baby, who is 16 at home. I call him my Grandson/boyfriend as he always has to sit next to me! So, go ahead and post the pictures lets see what the Irish clan looks like! Yours are quite a good mixture as are mine if you can imagine Jewish/Japanese. 2 great cultures. Of course they think they are Sicilian too as Teddy was Sicilian even if he did come along later, he was with them most of their lives. Intermarriages today bring the best worlds together!

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: Survival...Please tell us your latest milestone

Kathy, so glad hernia surgery went well and you are home. What can I expect when they schedule my surgery ?
Praying for your speedy recovery
Lisa

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: Survival...Please tell us your latest milestone

Just about three years since I heard the words "it's cholangiocarcinoma".

Seen two new grandchildren arrive and several European vacations plus lots of good times. Still working. Still swimming and walking...I will run a 10k next year..perhaps...

Still enjoying fabulous autumn colours...still feeling amazingly fortunate...

Re: Survival...Please tell us your latest milestone

Dear Malc, OMG so good to see your smiling face! Even better is your wonderful update! You sure give a whole lot of hope to our whole family.  I wish you continued success and thank you so very much for the wonderful news!!! A 10K??? Keep us posted!

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: Survival...Please tell us your latest milestone

Malc..I share in your joy of what life has held since the fateful words. Nothing ever was or has been as heart wrenching, but the sum total of all the things that have happened since has been amazing.  Keeping tallying of all the joys has become much easier! Thanks for sharing your good news
Kathy

Re: Survival...Please tell us your latest milestone

Malc....Congratulations on your three year update; you know how to make a person smile. 
Of course you will run the 10k next year.  We are all rooting for you.
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: Survival...Please tell us your latest milestone

Hi Malc,

Great to see you round here again and congratulations on your 3 years! Superb news!! Sounds like it has been a very busy 3 years for you! I am sure that you are enjoying the 2 new grandkids and good luck to you if you do a 10k run!

Best wishes,

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: Survival...Please tell us your latest milestone

Thanks folks...I still start with the Good News page on here...and a thread such as this...but just great that you maintain your comforting responses to the Introductions page .... hope you appreciate how much it helps...

Re: Survival...Please tell us your latest milestone

1 year today. Waiting for a liver transplant right now.

~Tiffany~ 31 years young wink Fighting CC since 10-27-2011
Wife to Brian; Mommy to Carter (8) and Madison (4)
http://tiffanyschwantes.wordpress.com/
Liver transplant 7-9-2013

Re: Survival...Please tell us your latest milestone

Cancer free since my resection at Mayo on January 5, 2010!  The only issues I've had since my resection are an incisional hernia that needed to be repaired, a "spot" in my lung (resected and benign), and mesenteric lymphadenopathy (biopsied and also benign).  Although the lymph nodes are not getting smaller, they are also not getting larger....so far so good.  So nice to read the other good news in this topic!

Re: Survival...Please tell us your latest milestone

My wife, Marina, had her regular CT scan last Friday. We got the news today that the scan was clean! CA19-9 was normal too.

We are 16 months since resection and 18 months since Marina's CC symptoms first showed up.

BTW, Marina is thinking about taking the port out. She hasn't decided yet.

Re: Survival...Please tell us your latest milestone

Dear Eli & Marina, this is just the bestest news! Yea and a big yippee! Great to hear this and looking forward to more great posts like this one! YES!

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: Survival...Please tell us your latest milestone

Eli,

Congratulations!!  So happy for you both!


Best wishes,

Susie

Re: Survival...Please tell us your latest milestone

Eli, this is fantastic news. I am so happy for both of you. I will pray for continued clean scans and good numbers.....go celebrate !
Hugs, Lisa

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: Survival...Please tell us your latest milestone

Hello everyone. I'm so excited for each and every one of you and to read your milestones is encouraging. My mom was diagnosed with CC July 2012 and is doing good.  She's getting ready to start her 4th cycle of gem/cis.  Her oncologist even told us her CT from 3 weeks ago was better than he had expected.  For this our entire family is grateful.  I was hoping some of you might be able to also share what helped or is helping you get and remain either symptom or cancer free? Was it a change in diet, Whipple, resection? We continue to pray for the day she will be told she is cancer free. 

Lots of love, Zonia.

The most beautiful sight I've ever seen is my mommy's love for her family.....the safest place in the world is in my daddy's arms...

Re: Survival...Please tell us your latest milestone

Dear Zonia, I am so very happy to read these GOOD posts at Thanksgiving time. Yippee for Mom's good scan! There is nothing to tie diet to CC, surgery is the very best option. But we have also had members who have had success with Chemo as well. Everyone is different and new things are popping out all the time. Just have great attitudes and be strong as that is a win win situation. Have a wonderful Thanksgiving and keep us posted on Mom's progress.

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: Survival...Please tell us your latest milestone

Hi folks!  Just wanted to ask a question of those who have been surviving cc for a few years.  Where is your CA199 marker?  Has it been in normal range (0 - 33) or high?  My brother Bruce has now been battling cc for over 3 years, with his CA199 in normal range for almost a year.  He went through a very rough stretch the past 3 months but is doing better this week.  His CA199 took a leap about a month ago and is now around 127 (down from 135 last week) - but he has not had chemo in weeks.  Just wondering if we are hoping that cc can be treated more as a chronic disease, rather than a fatal one, whether a higher CA199 matters.  Thought that I would check in to see what others think.

Re: Survival...Please tell us your latest milestone

Patty....it is the trend they watch for.  A continuous upward trend and other symptoms may indicate (I must emphasize "may") disease progression. 
CA 19-9 are pretty fickle and can respond to numerous biological happenings (infections, etc.)  And, as you know, on it's own these tumor markers are not of much value. 
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: Survival...Please tell us your latest milestone

Hi,
As you know, I am not a doctor but a patient of ICCA for 44 months.
Prior to my recurrence ,the  CA19-9 monthly trend was trending upwards for 6 months but never higher than the normal range. As  general observations suggested that increased CA19-9 is possibly associated with inflammation such as infection,bronchiolitis,emphysema and may be in patients with diabetes.
(Clin Chem Lab Med 2009;47(6):750-754).
However, in a study of 208 patients using an absolute CA19-9 level of 129 , shown  a sensitivity,specificity,positive and negative predictive value of 78,98,56 and 99% for cholangiocarcinoma.(uptodate.com,literature review, June,2012). In short, CA19-9>129 may be indicative of CCA.
I have read all your posted messages and as a patient suffer the same disease as your brother,Bruce, I truly understand what he has been through. I hope the team of good doctors/friends that he has will find a way to treat him beyond what had been said in the medical articles. Have the team of doctors ever consider using the targeted agents to treat your brother Bruce?
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.

Re: Survival...Please tell us your latest milestone

Hi Marion and PCL...thank you both for the thoughtful responses.  It has been a very wild past three months, and I have not been as good at keep my various websites, blogs and threads up to date.

Bruce is now over 3 years since his diagnosis of cc.  As you might remember, at the time of diagnosis, Bruce was told that he had 4 months and was pronounced inoperable.  Being who he is (the quintessential fighter) he found someone to operate and here is he.  His cc came back in August and he has had multiple procedures and chemo's to eradicate the tumors:  cyber-knife/targeted radiation; systemic gemzar/cisplatin; chemoembolization  (chemo delivered directly into liver); and then a new chemo - Erbitux.  His body was basically assaulted. It was so hard to watch him so weak and suffering from the effects of the treatments.

His platelets dropped, causing his exhaustion and weakness, and he has fluid retention (ascites) in his abdomen.  The fluid is caused by low albumin levels, which in turn causes the capillaries to leak fluid into surrounding tissues.  All of the symptoms that Bruce is experiencing have been caused, we believe, by the chemo (and perhaps along with the radiation.)  His platelets actually dropped to 10 (should be 200) - causing him to require 2 platelet transfusions.

We stopped the chemo treatments in order to allow his body to heal & strengthen - which is now happening.  His platelets, as of this past week, are 173 - and his fluid levels have dropped some.  His blood work was actually remarkably normal and he is beginning to sound like his normal self.

Bruce's biggest concern right now is that his CA199 spiked from the normal range (where it had been for most of the year) to 135.  This past week, it dropped to 125.  They drew some of the fluid from his abdomen to test for cancer cells, and we are awaiting to hear that news on Monday/Tuesday.  The last time they tested the fluid (a month ago), it was cancer-free.

Hence, I was hoping to find out where others' CA199  markers were during their long stretches of beating back this disease.  It might ease Bruce's mind a bit to know that 125 is not a horrible number.

I cannot begin to thank you all enough for this wonderful website, discussion board, shared knowledge and support...it has been a bright light in our uncharted navigation through very rough seas!  THANK YOU THANK YOU THANK YOU!!!!

With love always,

Patti

Re: Survival...Please tell us your latest milestone

mommysgirl wrote:

Hello everyone. I'm so excited for each and every one of you and to read your milestones is encouraging. My mom was diagnosed with CC July 2012 and is doing good.  She's getting ready to start her 4th cycle of gem/cis.  Her oncologist even told us her CT from 3 weeks ago was better than he had expected.  For this our entire family is grateful.  I was hoping some of you might be able to also share what helped or is helping you get and remain either symptom or cancer free? Was it a change in diet, Whipple, resection? We continue to pray for the day she will be told she is cancer free. 

Lots of love, Zonia.

-----------------------------------------

Hi Zonia!

Here is a post that I started a while ago which does list some of things that we have done to help Bruce fight this disease.  I believe that there is no magic silver bullet, but that a multi-prong attack on all fronts does help.

http://www.cholangiocarcinoma.org/punbb … hp?id=6261

Good luck and God Bless!!!

Patti

Re: Survival...Please tell us your latest milestone

I had my resection on January 23rd 2012 and clear so far, next scan is January 25th.   My year from hell is coming to an end and am getting stronger everyday.  Will be trekking to raise money for UK cholangiocarcinoma foundation (AMMF) in February 2012, so excited and have started training.  This site and AMMF are awesome and so inspirational.  Thank you to each and every one of you.   Keep smiling no matter what. xx

.... because I can ....

Re: Survival...Please tell us your latest milestone

Sandie, what wonderful news and we do thank you a ton for 'trekking' for us all. So glad that your 'bad' year is ending and hope only good stuff from now on.We are cheering for you!

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.